This is the second of three blogs examining the possibility that upper body/head issues play a role in chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM). The first blog examined the possibility that high blood pressure in the brain was present in ME/CFS and FM.
In this blog, Health Rising examines Ray Perrin’s hypothesis that a toxic overload in the brain is causing ME/CFS and FM.
Ray Perrin PhD, D.O. a U. K. osteopath, has been digging into chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) for almost three decades. His journey with ME/CFS began when a professional cyclist suffering from ME/CFS walked into his sports medicine clinic way back in 1989 and then walked out five treatments later healthy again.
Perrin wasn’t trying to treat the cyclist’s chronic fatigue syndrome; he was trying to fix his posture, but on the way to fixing his posture – which required using a variety of techniques – he ended up curing his ME/CFS. That cyclist provided Perrin with a clue that he’s been following up on for almost 30 years: the cyclist was experiencing a “mechanical strain” on his spine in the chest area. When Perrin improved the movement in his upper back, the cyclist was able to return to cycling.
“You’ve got to find out what you’ve done because you got me better and nobody else has.” I thought it was just a coincidence. But then I was a bit inquisitive. I’ve always been inquisitive and I wanted to find out what I had done. And that’s when I started looking at other patients who had the symptoms then and I noticed there were physical signs in all these patients, especially in the spine. That’s what set me on this long road and then I came up with my ideas and a hypothesis of what ME is and then the rest is history, as they say. 28 years on…Ray Perrin – the Ari Whitten interview.
Perrin comes from an osteopathic tradition in the U.K. which is very focused on reading physical signs and manipulating the body. He was the first medical professional I know of to propose that a unique physical structural problem is present in ME/CFS/FM. Perrin believes that the practice of reading the body is something of a lost art in the medical field. Perrin’s PhD thesis ended up being on ME/CFS.
They (doctors) look at what tests they can do and what their scan shows, but they don’t actually look at the person, feel the person. And I, as an osteopath, do. And this is what we do and I started looking for more and more signs that these patients all shared. The Ari Whitten Interview
Personally, his general thesis doesn’t surprise me at all. My pain begins at the chest area and proceeds upwards. Trying to relieve my neck tightness with frequent stretching exercises resulted in nausea, flu-like symptoms and pain. After walking or exercising – it’s my chest and upper body which are in pain – not my legs. Touching virtually any part of my face will elicit pain. Whether or not Perrin’s hypothesis has found the or a cause of ME/CFS/FM, something is going on in my upper body.
A Toxic Brain
Perrin believes toxins are flooding ME/CFS and FM patients’ brains.
Perhaps only an osteopath – a doctor specializing in structural problems – could have come to Perrin’s conclusion. He believes that toxic overload in the brain, caused by a malfunctioning sympathetic nervous system, causes distinct physical signs in the upper bodies of ME/CFS/FM patients.
The Brain’s Lymphatic System
The lymphatic system in our body serves to collect and process large toxins, but no such system was believed to exist in the brain. For hundreds of years, researchers have wondered how the brain effectively gets rid of its waste. The cerebral spinal fluid is one avenue but it seemed a poor second to the role the lymphatic system plays in the body.
The brain’s lymphatic system was rediscovered in 2017 by NIH researchers (two hundred years after an Italian anatomist reported that he’d spied lymphatic tissues in the brains of mice. Sometimes the medical system takes a long, long time to catch up :)) That finding is spurring new research into diseases like multiple sclerosis, Alzheimer’s and other neuroinflammatory disorders. Perrin believes the buildup of amyloid proteins in Alzheimer’s could result from poor lymphatic drainage. (Avindra Nath, the lead investigator in the NIH’s intramural study believes ME/CFS may be an neuroinflammatory disorder.)
Interestingly, blocking that lymphatic drainage in mice results in a buildup of fluids in three areas of the brain associated with ME/CFS: the hypothalamus, the thalamus and the basal ganglia.
Decades ago, Perrin was on a similar trail. He believed lymphatic drainage from the brain was occurring but he didn’t know from where. He did know that the cerebral spinal fluid drains toxins from the brain through a bony plate (cribriform plate) situated above the nose. From there, the toxins drain into lymphatic vessels around the nasal sinuses and the optic, auditory and trigeminal nerves in the eye, ear and cheek and along the spine. From there they flow to the thoracic duct and finally into the blood, where they end up at the liver.
Perrin’s osteopathic training taught him that the main drainage point of the lymphatic system was found at the thoracic duct in the chest area. This thoracic duct has a pumping mechanism controlled by a system – the sympathetic nervous system – that researchers have long found to be dysregulated in ME/CFS and fibromyalgia.
Perrin hypothesized that blocked or congested lymphatic drainage pathways in ME/CFS and FM were causing toxins to build up in the central nervous system. That toxin buildup was disturbing the hypothalamus, which, in turn, was causing sympathetic nervous system problems. The hypothalamus is the only part of the brain with direct access to the blood. It needs this access to regulate insulin levels in the blood but it comes at a cost – less protection from toxins.
Those SNS problems were, in turn, blunting the pumping action of the key lymphatic drainage point – the thoracic duct. In fact it’s worse than that. Perrin believes the pump in ME/CFS/FM is working backwards – instead of pumping lymphatic fluid to the body, it’s actually pumping lymphatic fluids back towards the brain – and Perrin believes this can push toxins into the brain. (That retrograde pumping mechanism shows up in odd-looking varicose veins in the chest area.) Those toxins then destabilize the hypothalamus and sympathetic nervous system – which, in turn, whacks the pumping mechanism. In short, a vicious circle which maintains high toxin levels in the brain is present.
Perrin now believes that the entire brain is probably affected by increased toxin levels with the limbic system (hypothalamus, thalamus, basal ganglia) most affected. That’s enough of the brain to easily produce the movement, sleep, fatigue and cognitive problems found in ME/CFS/FM. Because the lymphatic drainage from the brain mostly occurs during the delta stages of sleep, it’s possible that the sleep problems in ME/CFS – which have been linked to autonomic nervous system dysfunction – are reducing drainage as well.
Physical Signs of ME/CFS and Fibromyalgia
Perrin is the first to postulate that direct physical evidence of ME/CFS and FM exists in the form of frozen or limited spinal mobility, particularly in the middle and upper back, swollen lymph vessels and specific tender points. He’s said he’s never seen an ME/CFS patient who doesn’t have a thoracic (upper and middle) spine problem.
The Perrin Point is a tender point about 2 to 3 cm to the left and 2 to 3 cm above your left nipple. It’s also generally found between in the third intercostal space between the third and fourth ribs (counting from the top).
Each of these physical findings, Perrin believes, relates to problems with fluid drainage from the brain. Each, Perrin also asserts, can be manipulated using cranial osteopathic techniques to stimulate renewed flow of cerebral spinal and lymphatic fluids, thus relieving the buildup of toxins in the brain and relieving the symptoms of ME/CFS/FM.
Once toxin levels drop and normal lymphatic drainage resumes, Perrin states the patient is free of chronic fatigue syndrome (ME/CFS). Throughout the book, Perrin refers to numerous recovery stories.
Success Story
One young ME/CFS patient who was virtually carried into his office had a strong curvature in her mid-upper back region, tender points in certain areas, lymphatic congestion and a very sluggish “cranial rhythm”. Perrin reported that an intensive course of soft tissue massage and spinal articulation improved her lymph drainage and the girl was able to successfully return to school, gain a degree and remained healthy at the time of the book’s printing.
Historical Antecedents
Perrin believes his hypothesis has historical antecedents. Way back in 1871, Dr. Da Costa proposed in the American Journal of Medical Science that Da Costa’s Syndrome, a fatigue disorder encountered during the Civil War, was caused by physical overexertion and stress which caused an irritation of the heart. The key symptom in the syndrome was the inability of soldiers, after they returned to the battlefield, to keep up with their fellow soldiers. The central problem, Da Costa proposed, was an imbalance in the nerve supply (sympathetic vs parasympathetic) to the heart.
“Effort Syndrome” (also called “neurocirculatory asthenia”), identified by Sir Thomas Lewis in World War I, was associated with a “drooping posture” that Perrin believes was harmful. Stating “the mechanical strain that a bowed upper spine places on the sympathetic nervous system is immense”, Perrin believes the drooping posture contributed to the sympathetic nervous system problems in those patients.
Perrin proposed that the Royal Free Outbreak which mainly involved nurses may have been the result of an infection hitting a physically overburdened population (nurses doing heavy lifting) with spinal issues. Noting the specificity some viruses have for certain tissues, he proposes that the viruses involved in ME/CFS may be attacking the sympathetic nerves in the upper chest and lumbar regions. Several herpes viruses are known to hang out in the nerve ganglia found just outside of the spine.
Success Story
Perrin reported on a young woman in wheelchair unable to attend school who had a cyst (syrinx) on her spine and a mild case of Chiari malformation, but who was nevertheless being given only psychological treatment. She had not been given a diagnosis of ME/CFS. Upon examination Perrin, found that her upper spine was “severely flattened”, she had lymphatic swelling in her chest as well as the tender areas found in ME/CFS/FM patients. Perrin believed the syrinx and upper spine problems were blocking her lymphatic drainage. After treatment, she was able to return to school. Perrin described her as a “very active 15 year old with a full life”.
The second trial, which included using an MRI to examine white matter, blood flow and cerebrospinal fluid flow, found no “detectable pathological structural brain abnormalities“.
The Perrin Treatment Protocol
“When patients remain symptom-free between their six monthly checkups and are able to perform all reasonable activities with no after-effects…they are pronounced cured.”
Perrin believes that by relaxing the muscles and decreasing the intensity of incoming sympathetic impulses he’s able to improve the circulation of spinal fluid and remove the toxins that have built up. That allows the hypothalamus to reset itself and the sympathetic nervous system.
Perrin described six techniques he uses to increase lymphatic flow: specific lymphatic massages, gentle articulatory maneuvers to increase mobility of the spine, soft tissue massage of the muscles, chiropractic adjustments, cranio-sacral techniques to improve the cranio-sacral rhythm, gentle functional techniques to release the pelvic area, and exercises. Perrin told Whitten that standard lymphatic drainage techniques make ME/CFS patients worse because they stimulate flow in the wrong direction.
After relaxing the upper back muscles and increasing movement in the spine, Perrin attempts to free up the lungs by relaxing the respiratory muscles using a technique called “diaphragmatic release”.
Perrin’s exercises can easily be done at home and consist of gentle twisting of the upper body while the hands are held around the side of the neck, while crossing one’s arms and hugging one’s shoulders, and with the arms folded at the waist. I found that they can significantly decrease tension in the upper body.
Perrin also describes self-massage techniques to aid lymphatic drainage. One simple technique called nasal release can bring about a ‘lasting release”. He recommends sleeping on your side with a cushion between your knees to aid drainage from the brain and spine. He also recommends blue light filters on your computers, tablets. etc. and, staying off those devices before bedtime.
Instead of anti-inflammatories, Perrin prefers alternating warm and cold packs or compresses, particularly in the upper and middle back for about 10 minutes.
Treatment sessions occur once a week for the first 12 weeks, after which they decline in frequency. Severely ill patients may take up to 3 years of treatments, while the moderately ill may take 8-12 months. Getting adequate rest is critical. The very severely ill FM and ME/CFS patients can be difficult to treat if they can’t tolerate being touched.
Side Effects Indicate Treatment is Working
Perrins states he can tell if the protocol is working by the side effects; the worse off the patient feels, the better the ultimate outcome. Side effects are common early in the treatment and usually consist of symptoms like nausea, headaches and pain. Spots, boils, and other skin eruptions may occur as the released toxins filter through the skin.
Not a Panacea
Perrin is clearly helping people, but his protocol is not a panacea. In his 2007 book, Perrin reports on the results of two separate clinical trials conducted between 1994 and 2005. The first 40 person trial found an average improvement of 40% in the treated ME/CFS group and an average decline of 1% in the untreated group. Tests indicated that muscular fatigue was significantly reduced in the treated group – something Perrin believes was due to increased waste removal from the brain.
Perrin’s study produced moderate effects, but he reports that his protocol “often hugely improves the patient’s health”. In the Whitten interview, he reported that he’s been able to get patients “from bedridden, to sitting, to standing, to walking, to back to normal life”. Treatments that haven’t been effective in the past can become effective or more effective as the toxin levels in the brain decline.
He also noted that his protocol doesn’t help everyone and that most patients will need other kinds of treatments to become well. About 15% do, however, recover completely. He warned doing the technique incorrectly can make patients worse.
A new treatment study is underway and expect a new book out this year.
The Test
Perrin put his diagnostic protocol to the test in a 2017 study. Two health professionals – an experienced Perrin practitioner and a practitioner new to the technique – assessed a variety of physical signs (postural/mechanical disturbances of the thoracic spine, breast varicosities, Perrin’s Point, tender coeliac plexus and dampened cranial flow) in 94 ME/CFS patients and healthy controls. The criteria for inclusion were stiff muscles. Patients were diagnosed with having ME/CFS only if all five physical signs were present.
Using purely physical measures, an experienced Perrin technique practitioner was able to correctly identify 88% of the ME/CFS patients and 83% of the healthy controls. The inexperienced practitioner identified 69% of the ME/CFS patients and 86% of the healthy controls.
- Check out a poll on Phoenix Rising regarding the presence of the Perrin Point
- Pressure Mounting: Is Fibromyalgia Caused By High Pressure in the Brain (Intracranial Hypertension) -first blog in the upper body/brain series.
- Check out the stimulating Ari Whitten interview here.
- Check out Perrin’s website here.
- Find Perrin practitioners – the vast majority of Perrin practitioners are found in the U.K., but a few are scattered around the world as well.
Dr. Perrin Talks
Part I of a 6-part Series
Recent 2017 Interview
This makes sense!! I have had problems in my thoracic spine since my twenties (now 60) and that was when the CFS/ME started. I now get a burning itch beside the spine which a doctor said was from inflammation of the nerves because of pressure.
Me too. I am 4 weeks into the treatment and old symptoms in the chest and neck are back. Back achong al.l over, arms sometimes cribbling..
Should I proceed?
Did you proceed? I am week 4 and feeling baaaad. Going to have a wee float and sauna at the local pool.
I also have chronic upper back pain. I had it for several years before my fibromyalgia dx.
I have FM, not CFS; but it is interesting how this specific observation applies to me too; considerable deformation and tension in the upper spine and rib cage area. My ribs protruded markedly as though I was consciously thrusting my chest out even though I was “at rest”. Before I succumbed to FM I was a competitive cyclist, and assumed that this was something to do with the ultimate postural deformations that accompanied my particular FM condition.
But since I have been experimenting successfully and continuing to learn more and more, I have come to the conclusion that the dysfunctions of FM are similar in most victims simply because we all have the same basic muscle layout – so inappropriate tension will “pull us out of shape” in the same way.
This is remarkable, Cort:
“…Perrin’s exercises can easily be done at home and consist of gentle twisting of the upper body while the hands are held around the side of the neck, while crossing one’s arms and hugging one’s shoulders, and with the arms folded at the waist. I found that they can significantly decrease tension in the upper body…”
I have been enthusiastically exploring “Feldenkrais” lessons since the start of 2017, and got spectacular benefit from lessons that involved those very movements! The protrusion of my ribs has diminished a lot, and I have mobility in my whole torso that was absent for 25 years. But of course I have done dozens of Feldenkrais lessons that have successfully trained numerous muscles to relax; I strongly recommend Feldenkrais.
But in my own experience, I was already significantly improved with the protocol I had been following, before I discovered Feldenkrais; this has just given me a further boost. I also suspect that without the de-tox, re-hydration and mineral balancing inherent in my protocol, Feldenkrais and mobilisation techniques would be unhelpful because the underlying problem in FM is “adhesiveness” in the muscle fascia. You can attempt to mobilise stuck tissue, but if the underlying toxicity and adhesiveness is unaddressed, it will cause injury and any relief will only be temporary.
It is interesting how some dysfunctions seem to be common to people with FM and people with CFS, when the underlying original cause is probably quite different. I think it is more likely that people with FM are being mis-diagnosed as having CFS, simply because FM is likely to cause severe fatigue. But some people have CFS and they still have reasonable limb “range of movement” and the ability to squat, sit on their heels, scratch the middle of their own back, and so on, which anyone with FM would find impossible and unbearably painful to even try.
But I can certainly believe that people can have both, and I can also believe that poor intersticial fluid flows and lymph flows are responsible for a lot, especially in and out of the head cavity – but these may be a “consequence” of FM (which then leads to further co-morbidities). Adhesive fascia is an excellent explanation for many features of FM, including new discoveries such as cranial pressure and inadequate fluid “release and flow”.
But there are very likely other causes of the cranial problems (the fascia issues in FM may be just one of many triggers that exist), which makes it quite possible that this is of importance in CFS itself. The “disproof” if it exists, would be people with CFS (and who don’t have FM) that who don’t have the elevated cranial pressure and toxicity.
Feldenkrais! I haven’t heard of Feldenkrais in a long time but it makes sense. My upper torso is just so stiff and the stiffness increases when I walk. That’s what I really don’t get – my pain after I walk is not in my legs – which are doing the exercise – that’s where the muscles are working AND if the mitochondria or energy is the problem – that’s where I would expect to experience pain.
Except I don’t. My legs feel stiff afterwards and heavy but the real pain is in my upper body! The muscles around my ribs feel like my chest has been put in a vise. Then I kind of crunched over as my muscle seem to get locked into contracted position and there goes my posture…
Really hard to figure this one out but maybe it does have to do with a middle and upper back area that is just locked down…and gets torqued by the movement.
I do remember, though, Staci Stevens saying that the muscles that move the ribcage/diaphragm I guess it is are amongst the most active in the body. So if there is an energy deficit maybe it would show up there.
That is really interesting, especialy your comments “My pain begins at the chest area and proceeds upwards. Trying to relieve my neck tightness with frequent stretching exercises resulted in nausea, flu-like symptoms and pain. After walking or exercising – it’s my chest and upper body which are in pain – not my legs. Touching virtually any part of my face will elicit pain.”
I have exactly the same symptoms, as well as the stiff and very painful upper torso that makes it hard to even turn and look over my shoulder.
I contacted Dr.Ray Perrin about 2 months ago to arrange an appointment (I’d been reading his book at the time and it made a lot of sense and I’m in the UK) however, no reply even after 3 emails sent to his office (no number to call).
Karin, I would persevere in your attempts to contact Ray perrin office. Look at the website, there are practitioners all over the country. I think it’s the one treatment that has benefitted me the most. Although it is tough when you start as you often feel worse before better, I kept going and it has really reduced that horrible feeling of malaise you get after you’ve done too much and helped get rid of alot if the “heavy legs” feeling when fatigued. Take a look at the find a practitioner part of the website.
Cort!
For some reason there was no reply button to Karen’s comment. Below is the contact number for Perrins office. I’ve been seeing one of his practioners for 3 months and I’ve seen Dr Perron twice. His treatment is having a noticeable effect on me and my M.E./CFS
tel:+44(0)161 773 0123
This is my main symptom as well. Chest and upper abdominal stiffness, I haven’t seen a chiropractor since becoming ill and I m in the USA.. Not sure if any Perrin technique is practiced here. Is there a video /link of the exercises Perrin said we can do at home?
thanks!
And did you try Perrin on that?
You said ” I think it is more likely that people with FM are being mis-diagnosed as having CFS, simply because FM is likely to cause severe fatigue. But some people have CFS and they still have reasonable limb “range of movement” and the ability to squat, sit on their heels, scratch the middle of their own back, and so on, which anyone with FM would find impossible and unbearably painful to even try.”
I have a diagnosis of both ME and FM, but can easily do the exercises you describe, and have a more than reasonable range of movement. I do, however, have a diagnosis of Ehlers Danlos Syndrome (EDS) on top. This is a rarely diagnosed, but probably not that rare, condition causing hypermobility in the joints, amongst other things. It seems that having EDS is a triggering factor for both ME and FM, for various reasons. I would just caution you against your assumptions, particularly as the authorities on the subject believe that there is potentially a high rate of undiagnosed EDS/hypermobility in the population.
Otherwise, I found your post very interesting. Thank you for sharing your experiences.
From what I’ve heard EDS is quite underdiagnosed…although I don’t know the statistics. It’s certainly something that everyone with these diseases should check out.
Caroline had really obvious EDS but was undiagnosed for years – https://www.healthrising.org/blog/2017/12/01/looking-glass-cerebral-spinal-fluid-leaks-ehlers-danlos-syndrome-alternate-reality-mecfs/
I wonder how many people have EDS and don’t know it. I didn’t, until I was with another couple of patients at Stanford and one of them mentioned it. Until then I thought everyone’s kneecaps moved around! Apparently not. ?Who knew? I also am able to squat, scratch the middle of my back etc. I see a chiropractor twice a week and he always releases T something middle upper back and does cranio-sacral work, which is most likely why I am not completely bed or house bound. This is so intriguing!
Thanks Taokat; yes I was aware of EDS affecting some people exactly as you describe. These things are so complex one can’t cover everything in a comment! I would argue that the “FM” that patients with EDS seem to have, is actually the “painful spots at the same locations”, but there are two completely different underlying conditions. At least EDS is widely understood once you have the correct diagnosis. But people with pure FM always have reduced ROM and severe inability (because of pain) to go into many basic postures – and medical diagnosis and understanding is appallingly remiss and even incompetent in this regard. I now categorically reject the ubiquitous suggestion that my unbearable pain when trying to squat, for example, is purely an “over-excited central nervous system”. BS. There are palpable tissue distortions – lumps, knots, etc – right where the agonising pain is. I regard “experts” who wave this observation away in favour of “the CNS is doing it” as arrogant charlatans. And at the institutional level, this is a form of systematised psychological abuse of a large class of innocent victims. Some sufferers, I believe, have messed-up psychologies and brains BECAUSE of this messing with their minds that has been done BY the medical profession. Then these people are regarded as “evidence of brain problems as the cause of FM”. BAH.
Hi Phil,
Still trying to understand more about fascia and the link to FM. I have a few questions you might help me with if you’d like:
* From a previous post I learned not only the entire muscle is packed in one big fascia bag, but also individual bundles are. Correct?
* Is one such bundle then from beginning to end (thus over the entire length of the muscle) in the same “tube”?
* Are both muscle fibres and fascia aligned with the length of the muscle?
* Is the muscle fiber fixed to the fascia or gliding within the fascia?
* Are the fascia “packing” one fiber sliding over other fascia “packing” another fiber or is the entire fascia more like one big connected 3D net covering the entire muscle like a bag with many compartments containing the individual fibers?
* What would relative thicknesses be? Would an individual muscle fiber be around 1 millimeter in diameter, an “individual” fascia packing about a tenth of a millimeter and the outer fascia bag quite some thicker? No nitpicking, just to visualize sizes and proportions.
Regarding to your experiences, I’d like to see how much they compare to mine. Specifically:
* At the time of getting sick, did you feel a lot of “torn/cut” muscle pain spread over the muscle?
* When currently (or at earlier improvement) over exercising did you have a lot of cramps during/after exercise? If so, where they often “local” as in only a small part of the muscle rather then over the entire length/width? I would consider having multiple “local” cramps at different locations in the same muscle as local too here.
* During early improvement did you experience a large amount of “local twitching” where part of the muscle contracts and relaxes in “frog-like” mode?
* During later improvement did you experience less “local twitching” and more “fine popping” like drops of water falling or champagne bubbles popping?
Thanks in advance, dejurgen
Really appreciate your insightful interest, Dejurgen. Sorry I am so late coming back to this thread. Many of your questions, I wish I knew the answers to, I think it is important. It would probably require an expert like Robert Schleip to answer them.
* From a previous post I learned not only the entire muscle is packed in one big fascia bag, but also individual bundles are. Correct?
YES, I THINK SO.
* Is one such bundle then from beginning to end (thus over the entire length of the muscle) in the same “tube”?
I THINK SO.
* Are both muscle fibres and fascia aligned with the length of the muscle?
I THINK SO.
* Is the muscle fiber fixed to the fascia or gliding within the fascia?
I DON’T KNOW. I THINK IT IS “GLIDING” TO SOME EXTENT, AND FM (AND SOME OTHER LOCAL INJURIES) RESULTS IN ADHESION INSTEAD.
* Are the fascia “packing” one fiber sliding over other fascia “packing” another fiber or is the entire fascia more like one big connected 3D net covering the entire muscle like a bag with many compartments containing the individual fibers?
I THINK THE WAY SCHLEIP DESCRIBES IT, IS THAT IT IS LIKE A BAG WITH MANY COMPARTMENTS. IN FACT IF CONNECTIVE TISSUE IS REGARDED AS PART OF THE SAME STRUCTURE, THE ENTIRE BODY HAS A LARGE MULTI-COMPARTMENTED FASCIA “BAG”.
* What would relative thicknesses be? Would an individual muscle fiber be around 1 millimeter in diameter, an “individual” fascia packing about a tenth of a millimeter and the outer fascia bag quite some thicker? No nitpicking, just to visualize sizes and proportions.
I THINK THE FASCIA IN BEEF, LAMB ETC IS A GOOD ENOUGH VISUAL GUIDE. MOST FASCIA IS VERY THIN, BUT SCHLEIP SAYS IT IS THICKER IN SOME PLACES EG THE LOWER BACK. I THINK MAYBE SOME FASCIA EG AT THE MUSCLE-FIBRE LEVEL, IS VIRTUALLY INVISIBLE IN MEAT AFTER BUTCHERING – IT IS THE OUTER FASCIA BAG THAT CAN BE SEEN.
Regarding to your experiences, I’d like to see how much they compare to mine. Specifically:
* At the time of getting sick, did you feel a lot of “torn/cut” muscle pain spread over the muscle?
I LIKEN IT TO FINELY GROUND BROKEN GLASS SPREAD OVER THE MUSCLE; OR VERY SEVERE PRICKLY “SUNBURN”.
* When currently (or at earlier improvement) over exercising did you have a lot of cramps during/after exercise? If so, where they often “local” as in only a small part of the muscle rather then over the entire length/width? I would consider having multiple “local” cramps at different locations in the same muscle as local too here.
I NEVER GOT MULTIPLE CRAMPS, IT WAS ALWAYS A HORRIBLY SEVERE, VERY LOCALISED CRAMP, ALMOST ALWAYS IN THE CALF MUSCLE BUT IN ANY ONE OF SEVERAL DIFFERENT PLACES IN THE CALF MUSCLE. AS I HAVE RECOVERED, I HAVE STARTED EXPERIENCING OCCASIONAL MANAGEABLE CRAMPS IN A LOT OF DIFFERENT LOCATIONS.
* During early improvement did you experience a large amount of “local twitching” where part of the muscle contracts and relaxes in “frog-like” mode?
ABSOLUTELY WHAT MY EXPERIENCE IS. IT ALWAYS ALARMED ME THAT IT MIGHT BE THE ONSET OF CRAMP, BUT MOSTLY IT WAS JUST “TWITCHING” AS YOU DESCRIBE.
* During later improvement did you experience less “local twitching” and more “fine popping” like drops of water falling or champagne bubbles popping?
I DON’T THINK SO – I THINK IT HAS ALWAYS BEEN LOCAL TWITCHING, NOTHING OF A “FINER” NATURE THAT I HAVE NOTICED.
BY THE WAY: I THINK THIS MIND-BLOWING NEW DISCOVERY IS PART OF THE PICTURE RE FASCIA HYDRATION:
http://philadelphia.cbslocal.com/2018/03/27/interstitium-new-organ-human-body/
“New research published in Scientific Reports has revealed that the human body contains a network of fluid-filled channels that had previously been undiscovered. The spaces were found all around the body’s connective tissue which lines the digestive tract, lungs, urinary systems, and surrounding muscles.”
Hi Phil,
I’ve seen this news yesterday as well. Planned to post it too but found no English video or a translatable written text. The video was also low on detail.
The paper https://www.nature.com/articles/s41598-018-23062-6 is very informative, at least what I understand ;-). It appears to be a body wide fascia-like structure that connects to all organs including the fascia.
Regarding to ME/FM I see these highlights:
* Structure connects body fluids body wide; connective fluid is lymph / pre-lymph; can transport cancer cells but also pro-inflammation chemicals around the body.
* This “vimentin” https://en.wikipedia.org/wiki/Vimentin that is in that fluid plays a role in cholesterol mechanism, adrenal function and antibodies linked to it are linked to rheumatoid arthritis. May be important in our diseases. Difficult stuff however.
* The one I understand best: “supported and organized by a collagen lattice, are compressible and distensible and may thus serve as shock absorbers”
=> Very smart observation of the researchers! Very small open cavities connected to each other and filled with liquid make an excellent shock damper. Shock damping is very important as normal movements cause shock waves and local shock that is far greater (an order of magnitude or more?) than what the tissue endures at rest. Just watch those slow motion videos of people running or jumping: scary deformations of the body! If the fascia are like this and lose structure or liquid then shock absorption may be paltry. Muscle cells would suffer a lot while moving. Could explain impact of high strength and shock exercise versus low impact on our disease.
Hi Phil,
Thanks for answering these questions. The reason I asked is because I got an “aha” moment when having a cramp after overexerting once more.
It lead me to an alternative explanation of your clear and very useful observations. I think it could explain both your observations from a different angle, bring your and mine ideas closer, explain better what helps us both and others and (nice fit with other comments in this blog :-)) include EDS patients in your model too.
I’d like your opinion as I know no one else with your clear fascia observation and knowledge. Please keep an open mind because at first sight it may look like it contradicts all you state. I think it doesn’t and adds to it.
Let me start with an example (hard to translate, hope you get the meaning). Have you ever had a jack/vest with a cap/hood against the rain? One that has a cord to tighten the cap around your head if you pull it? That cord is like a 5 mm cord in a thin 0.2 mm thick sleeve with a diameter of 7 mm. Can you image it?
If so, did you ever try to get the cord back into the sleeve after you pulled it out? It’s a difficult job! It easily takes 20 minutes when unexperienced as either the cord or the sleeve wrinkles (or both). That’s observation A.
Now image a cotton 3 mm diameter thread to knit. Imagine touching it. It is soft. Now imagine a 0.5 mm thread used to sew. Touch it. It is less soft than the ticker one. It could cut you a bit easier. Now imagine making a knot in it. Lay it at the table. Put your finger on it. Close your eyes. Pull it gently forward. You can perfectly feel when the knot touches your finger: it feels so much “harder”. Thats observation B.
Observation B says: a small knot / bent or even bump feels so much harder if its diameter is smaller. Other example: take a fixed core 2 mm copper wire. Make a 20 cm 360° radius bent in it. Pull it through a
15 cm inflexible plastic tube. No trouble. Now take a fixed core 2 mm copper wire. Make a 10 mm 360° radius bent in it. Pull it through a
8 mm inflexible plastic tube. Tube is severely cut/damaged *if* you get the wire even through the tube. Bent is deformed with likely a sharp point like dent in it.
If the fascia are everywhere and spread tinily across the muscle, could the knots you feel be the small muscle fibers being twisted, bent, bumped, knotted? That would feel very hard too. And it would deform the fascia too. The fascia itself would likely be far less hard to the touch because they are very flexible (even when imperfect) and more foil/tube like then the muscle fibers.
Both you and I had strong local cramps at the onset / after overexertion. (Local) Cramps equal local contraction compared to the neighbor muscle part. That can happen due to weak uneven nerve signaling, uneven availability of liquid (salts), one part of the long muscle fiber getting stuck to the fascia while the other part contracts, poor local blood flow reducing contraction/release of that part of the muscle, inflammation of part of the muscle causing it to be stuck in the fascia tube or have more friction…
When it would be locally deformed it could cause strain/deformation of the nearby fascia, disrupt blood flow in the nearby fascia and squeeze blood flow of a significant part of the entire muscle fiber (causing even more uneven muscle contraction and resulting strong stress between fiber meaning strong stress on fascia in between as well). It also would encourage local inflammation of fascia and fiber causing local swelling. It would feel like local dots of sand/glass/micro-tearing spread along the muscle. Sounds a bit like FM doesn’t it?
Explaining exercises: slow exercises without torsion nor a lot of force would allow “dislocated” fibers to “creep” back into position slowly. Shock like exercises would dislocate them further can cause strong friction/cutting between sharp bented muscles and fascia likely cutting through them.
The (local) twitching I always experienced as curative. When I “allowed” more of it I got better faster. Twitching is a small gentle local movement ideal to slowly let the fibers creep in place again.
EDS would fit in it as well. Be it either very short muscles as we have (that are easier to torse) or to long ones that allow the to make a corner around a piece of bone, it would both dislocate adjacent bundles.
Blood flow: it would squeeze of blood flow in bended bundles starving muscle from blood/oxygen creating inflammation/anaerobic functioning far more then what poor blood flow in the fascia would cause IMO. The toxic effect/disoxia could affect the brain too and encourage ME following FM. Or the disoxia/inflammation could cause uneven contraction of muscle cells along the fibers causing ME to encourage FM.
Heat: both inflammatory and some/many people report benefit of heat/IR/sauna treatments. Seems contradictory as heat encourages inflammation. However heat should make fascia more “smooth” and allow for better creep between fascia and muscle fiber allowing them to creep back to position. It would be a trade off between allowing repositionning through heat and reducing chances on inflammation.
Could you give it a deep thought and comments?
Kind regards, dejurgen
Yes, I think that is a potentially plausible alternative hypothesis to “stuck fascia”, period.
The other thing to consider, from my experience, is that the “lumps” and deformations have increased in size and extent when I was doing the wrong thing (over exertion), and slowly diminished once I started doing the right combination of things. How might small muscle fibres twitched out of the correct orientation, be the cause of this?
Maybe what you are describing is “fascia adhesions at the most “micro” level – around the thinnest strands of muscle fibres? These then form the “knot” inside the next largest “sleeve” of fascia? But the adhesions are occurring at every layer of fascia, the big sleeves as well as the tiny one?
I have always believed that many of the tender points in FM are where there is a complex junction of “sleeves” around many muscles each running in a different orientation, that absolutely need to slide against one another. This explains why the really big lumps form back of the leg behind the knees, and literally are “obstructions”, and painful ones, to kneeling on the floor and then lowering one’s behind to one’s feet. Most healthy people can at least try to do this without agonising pain from palpably identifiable lumps in the leg muscles that are “squashed” when trying to do this.
But “squashing” these lumps with deliberate, controlled lowering of my weight onto them in the spa pool on a regular basis, has been part of my successful protocol. I hypothesize that this squeezes some of the adhesive toxins out of them each time, much as accupressure is said to do. I continue to get closer and closer to a goal of “sitting on my heels without pain” – I estimate I am 80% of the way there, and massage therapists have felt the diminishing of those knee-anterior lumps, slowly, over the last 5 years. The massage itself has become more and more effective with lumps all over the body; I hypothesize that gradually, my renal system is removing the very elevated systemic toxin level (the renal system itself is likely to have been where the greatest saturation was) and as each treatment squeezes more toxins out, there is less and less flowing back in to the problem tissue areas to cause recurrence of the problem. Recurrence is what usually happens after temporarily successful accupressure or needling or cortisone injections, when the patient is not “detoxing” with diet, anaerobic exercise avoidance, mineral balancing, etc.
“…the “lumps” and deformations have increased in size and extent when I was doing the wrong thing (over exertion), and slowly diminished once I started doing the right combination of things…”
=> How quickly did the deformations increase in size? Was that noticeable after each overexertion or slower in the course of months of overexertion?
“How might small muscle fibers twitched out of the correct orientation, be the cause of this?”
=> I started from combining my own observations with your ideas. The micro-stuck-muscle thing would cause impalpable damage that would feel like many tiny highly painful spots, located in the bulk of the muscle in this view. That’s my main source of pain. There the individual muscle fiber would be surrounded by many other muscle fibers in the same direction pushing it largely in place. There the fascia content would be lower as well. It would leave few options IMO for fibers at that location to go “in bulk” curling up. In bulk dislocation (shearing between layers) I could imagine.
=> In your case maybe it has to do with the interface between tense muscles on the one side and softer fascia tissue on the other side. The tense muscles fibers in this view experience plenty of force from the tense muscle fibers located closer to the center of the muscle. They push them “aside”. That can result in displacement or local enlargement of the outside muscle fibers. These fibers are however not surrounded by other muscle fibers exerting large forces on them. On one side they see far softer and more flexible fascia tissue. That would make it easy for plenty of muscle fibers to be pushed outwards / be enlarged and curl up / buckle up in a similar way creating “bumps” on the muscles.
=> Dry fascia could make both micro and larger deformations taking more time then usual to get back in place. Just consider that healthy people need to stretch after sporting too in order to get their muscles back to “original size and shape”. If that process would be slowed down a lot by poor fascia lubrication and extra damaged (rough) muscle surface then the normal restoration times healthy people see could be multiplied a lot (over an order of magnitude). That would align with poor recovery and PEM like effects. Do far less then a healthy person and get 3 days of PEM. Try to be a hero and get months of setback.
The link on the “new connective tissue organ” reinforced another idea: fascia may well act as dampers to some extent as well. If fascia run dry or get damaged then the forces between different muscle fibers or layers of muscle fibers may be significantly greater when absorbing shock. That would increase shear-like damage resulting in another source of both damage and fiber displacement.
I’m currently working on these ideas to see if I could put them to good use. That’ll take some time.
You could help me by describing these lumps you have:
* where are they located (what muscles, inside? outside? what position on the muscles, does location depend on type of overexertion…)
* how fast do they “grow” after severe overexertion? is it comparable to some sort of swelling?
* what is the size of these lumps (range of height, with, length)?
* what “texture” do they have: flat, wrinkled aligned, wrinkled random, smooth, rough…)?
* how hard do they feel / what to compare to?
* do they go hand in hand with (more then elsewhere) inflammatory pain nearby? is that mainly in joints, muscle, tendons,…?
kind regards,
dejurgen
Its really interesting discussing this, thanks dejurgen. The deformations in muscle tissue grow slowly, over months (and resolve slowly if one is lucky enough to initiate this). I would say that they do form based on “use” (eg if you are lifting weights, you will get bad ones forming in the arms and upper torso, that otherwise might not be so bad); the trouble in my case is that I was using a lot of muscles as I experienced my worst decline; I was using gym machinery precisely to “improve my muscles”. So I got an outbreak of worsened painful spots everywhere. It was this experience that led me to develop new insights about what FM actually is.
The deformations, I believe, take the form that is consistent with the layout of the fascia at each location. There are knots in some places and bands in others. I believe the knots are where there are a lot of conflicting-direction muscles that are getting stuck to each other, and the bands are longitudinally within long muscles containing a lot of bundles of muscle fibres.
Some of the most prominent ones during most of my experience, were knots in the calf muscle – but it is not that they weren’t everywhere else as well, just that the ones in the calf muscle attracted most of my “pain attention”. The ones that are slowest to resolve seem to be the knots behind the leg at the knee, and the bands in the muscles outside the leg at the top. But in massage it was painfully obvious that at my worst, there was scarcely anywhere in the body that was free of painful deformations of one form or another.
At my worst, the ones in the upper arm and rotator cuff and pectoral area became the most painful, exceeding even the calf muscles. This is because I was doing training in the gym that developed these muscles. Interestingly I did develop impressive looking muscle mass – I looked good in the bathroom mirror in a way I never had before in my life. But I would say I like the way I look now as a result of doing Feldenkrais, even more. Back then I had muscle mass from the gym work but my posture, and parasitic muscle tension pulling me out of shape, was terrible. For example, an absurdly protruding rib cage. One looks a lot better “straightened out” and with systemically more relaxed muscles.
The deformations texture is “hard” – like tensed muscles on a bodybuilder showing off, only highly localised and completely independent of deliberate controlled tensing. I don’t think they are accompanied by “joint” or arthritic or other pains in other tissue at the same area. Even what I have long believed to be “permanent injury” (eg a lower back injury as a teenager from a trampoline accident) has had a lot of pain improvement as I have resolved the FM condition. From Robert Schleip’s work I believe that probably MOST “long term” musculo-skeletal chronic post-injury pain, is unresolved local fascia dysfunction rather than anything in joints, bones, cartilage, etc
“and bands in others”
=> How wide would these bands have been / in what range?
=> Could in some cases the band be that wide that it was hard to distinguish from being a band or being a tightened somewhat swollen muscle like a muscle with a broad layer of tape overlaying it?
“but my posture, and parasitic muscle tension pulling me out of shape, was terrible.”
=> Would you describe that bad posture as “imbalanced”?
=> That parasitic muscle tension, do you remember if if where most often or near always located as a layer near the edge of the muscle (close to the fascia but not exactly the fascia) (so far less in the center of the muscle)?
=> Did the pain going hand in hand with the tense muscle feel like “going in the direction of the muscle fiber” meaning that the zone of pain was clearly longer in that direction than in the orthogonal direction (parallel to the muscle / fascia interface surface)?
I’m still looking more from the muscle side as that is more my experience, but I’d like to find out if the muscle and fascia problems “connect” and flow over in each other.
Hi Phil,
Just was thinking from another way around: yellowish drying wound fluid. Think about a small wound on the skin. It does not bleed, but slowly there comes a pale-yellow sticky fluid on it. Later on this sticky fluid forms a thin hard (and often “grainy”) crust sealing of the wound. A bit like blood forming a crust, but the lack of RBC’s do make its color pale to yellowish.
Now consider the fascia: liquid filled connective tissue. It’s a channel for liquids. Maybe it can channel wound-healing liquids as well? Maybe these can not only be sticky and dry-up or harden out when in contact with air (skin injury) but also in the body itself. Maybe slower, but why would in the body only blood derived components be used for wound repair while for the skin both blood derived and wound-liquid derived components could be used? Does not seem to make that much sense.
If that would happen and muscle fibers near fascia are “seriously” injured, then wound liquid may come to the aid. That could add a sticky substance on the site of injury: muscle tissue. It being sticky would be far more efficient at being sticky then just dry fascia IMO. Let alone if it formed a more solid protective layer gluing fascia and muscle fiber together. It would require force to get the two moving against each other again. But just like trying to scratch the hard yellow layer from a skin wound often leads to an even greater wound and more pain, moving if it hardened out would increase injury and add “thicker” layers of this stuff.
Anyways, both the liquid “sticky glue” as the hardened out stuff would be quite good at “fixing” the muscles into position, shortening muscles and leaving few room for movements, especially if those damages were spread across the muscle. It would take time to get those heal well. Gentle movements (Feldenkrais, massage, low effort electric bicycling…) with low effort and speed would slowly help removing the wound-repair-glue when at least the wound is given the chance and time to heal.
In https://en.wikipedia.org/wiki/Connective_tissue I did found that https://en.wikipedia.org/wiki/Glycosaminoglycan is a component in fascia liquid and has a subtype “CSGAGs interact with heparin binding proteins, specifically dermatan sulfate interactions with fibroblast growth factor FGF-2 and FGF-7 have been implicated in cellular proliferation and wound repair” in it as well. That may be part of “sticky glue”.
It’s quite a far stretch but it may well align with both your and mine experiences. Please give it a thought and share them ;-).
Phil, could you please provide some additional information regarding the protocol you have been following?: “I also suspect that without the de-tox, re-hydration and mineral balancing inherent in my protocol,Feldenkrais and mobilisation techniques would be unhelpful because the underlying problem in FM is “adhesiveness” in the muscle fascia. You can attempt to mobilise stuck tissue, but if the underlying toxicity and adhesiveness is unaddressed, it will cause injury and any relief will only be temporary.”
Dear Cort, Thank You!
I can relate to it very well too.
My first two weeks of flash-improvement occurred after doing exercises to reduce tension on upper back, shoulders and neck. It was much of an intuitive approach but the difference was very clear to me. Unfortunately details did mater *a lot* so after two weeks of almost magical improvement (able to walk 50 to 150 meters a day at start, 900 to 1200 after two weeks and very significant reduction in pain levels) I lost “it” and started to decline again. For the past two and a half years I gradually try and find back what were the “magical” ingredients to this improvement flash. I have the feeling I’m about halfway in this endeavor. Luckily I have better health now then at the end of this two week period, but progress is far slower and each step takes much more effort then it did then.
Fast forward to now and I do strongly believe it is also related towards our odd breathing pattern and the sometimes changing success that can be achieved by a variation of breeding techniques. Doctor Perrin also uses a technique linked to breathing: “Perrin attempts to free up the lungs by relaxing the respiratory muscles using a technique called “diaphragmatic release”.”
I believe that “adaptive” breathing techniques not only provide better gas exchange but also provide both a pumping action and creates a pressure gradient influencing body fluid flow.
The pumping action itself is a clear one: breathing in and out creates contraction and relief of muscles. The contraction can be seen as a gentle form of pressing on the toilet. The relief as the opposite. This produces waves of pressurization and de-pressurization mainly in the torso but extending to lesser degree over the entire body. The effect in the legs is the easiest to see: with each cycle of these waves fluid moves a bit in the blood vessels. As there are one-way valves in the leg veins this flow goes one direction: towards the hart. That makes it a small pump. In a body with reduced blood volume and hart-prefill problems that is a neat improvement of the blood flow.
The pressure gradient is a more difficult topic. Basically one can reduce for example the maximum tension produced in the torso by not breathing very deeply. Many ME patients just don’t have the strength and endurance to breath deep, but breathing fast and shallow does reduces maximum tension in the torso.
A (likely more effective) variant I tend to use often now is breathing slowly in and deep out. I don’t breath in very deep, nor do I hold my breath at this maximum position. It does cost me too much effort. But now I can almost effortlessly breath out very deep. My physical therapist told me last visit she can’t breath as slow and deep out as I do during exercises. But don’t let me hold my breath with lungs wide open, I just can’t. Way too much effort.
This technique creates a low average pressure on the torso. That does reduce pressure on the hart and the vein and artery running to the head. As such it improves blood flow. That is especially important at night as then the blood flow to (my) head is really poor. I think it’s in the return path. The hart pumping harder isn’t much of a solution to it, as it’ll increase the cerebral fluid pressure (brain capillaries are unlikely able to “buffer” a lot of tension, so it’s up to the skull and the pressure provided by the spinal fluid; if the return path is the problematic one then pressure *should* rise to increase fluid return).
The other option to increase return of blood to the hart is decreasing pressure on the torso/hart side. Having lower average pressure there can help. So this idea links this post to the previous spinal pressure blog. There are other benefits to this diaphragm breathing technique to such as less needed effort and better “renewal” of air in the lungs. It’s no one trick for all though and I have to adapt to varying circumstances. That may be the most difficult part in achieving success: getting things wright under varying circumstances needs a lot of “body reading”.
I can imagine reducing average torso pressure does help moving other (limbic…) fluids out of the brain too. As does increasing spinal fluid pressure as well, but at a steep cost.
I’ll be *very* interested to see and read more of him. I’d like to hear if Phil sees overlapping with the techniques he applies successfully too. I imagine their must be more then one overlap.
Adaptive breathing sounds really interesting. I’ve never heard of it before. I’m positive breathing is effected in ME/CFS. I remember Systrom saying that ME/CFS patients tend to hyperventilate during exercise.
I call it adaptive to emphasis that with me it’s not one breathing technique that suits all occasions. That’s a bit like driving with a fixed gear with a car with a manual gear box. The car will suffer when you start, accelerate and drive on the highway… so it’ll suffer most of the time.
The same implies with “fixed style” breathing: it will not deliver what is needed and it won’t be at top efficiency.
What works for me is “mastering” a set of basic breathing techniques by repetition, repetition and repetition while remaining within ones envelope. Trying to rush doesn’t do any good.
As such, I learned to “steer” my breathing to a certain style I feel is more appropriate for the occasion and my body learned bit by bit to switch unconsciously to a better and more efficient breathing style matching the needs of the moment. Having the body to get better at doing this unconsciously through training is particularly important to me as breathing was highly problematic during sleep. Now it’s only problematic ;-).
Learning to get diaphragm breathing well was important for me, but it’s not exclusively about diaphragm breathing. It required quite some dedication and I do still need daily repetition to further increase the potential. But the rewards are growing over time. I consider me a “derailed blood flow first and problematic breathing second” archetype so I am well served by breathing techniques as they address both.
What I like is that you can train your body to breath more deeply. I’ve heard that before it – it’s quite encouraging and something I’ve know for years that I should attempt to do…
I believe this approach to breathing shares some underlying mechanisms of working with the very much discredited Buteyko breathing technique.
This technique is very contested as people with “true” ME state that a simple breathing technique cannot possibly cure an extremely disabling brain infection based disease.
My point of view is:
* There is no fundamental reason why a good breathing technique cannot offer comparable improvements as pacing (or cranial / lymphe related techniques such as in this blog).
* True relief based on nothing but one of these techniques is rare and a bit more frequent for people who are only short time ill or have a very specific and dominant weakness that is addressed by this technique.
* A bit of relief is more frequent.
* Having success or getting worse often depends on hard to describe parameters and unknowns. Adapting to individual needs is a must.
* As Phil states, true improvement is near always a combination of several well chosen things.
The advantages of “adaptive breathing” compared to Buteyko breathing are IMO:
* Far lower entry difficulty. While I did not pay for a “Buteyko training” I followed guidelines I could find for free. It was way too hard for me to get any positive results.
* I do feel very few for the “high tension” phase of having really full lungs of the Buteyko technique. With what I experience it both needlessly raises the entry level too high and could work counterproductive for most ME patients.
* Any good classic schooled PT experienced in breathing techniques can learn “adaptive breathing” as it basically is learning to breath better adjusted to the weakened ME patient. Quite affordable at least over here.
* Very few downsides and risk of learning to breath better when one does keep pacing.
* A large range of researched and reported positive effects of learning to breathe better for healthy people and for many chronic diseases. Having patience by learning and practicing in tiny bits, staying within your envelope and not “choosing/forcing” a particular technique on your body as one technique is supposed to be superior is key IMO.
Largest downside? It’s hard to convince people to go that slow so that they don’t experience the typical “I feel it’s hard and I get worse from detoxing so it’s working” thing and keep doing it until they spontaneously notice their breathing has improved, especially if that can take months to …?
We are very much weakened both mind and body so learning to do a “new” physical activity isn’t as easy as it used to be. But gaining efficiency on probably the most used physical activity over the day and possibly gain better oxygenation is suiting ME/FM well IMO.
I agree about this:
There is no fundamental reason why a good breathing technique cannot offer comparable improvements as pacing (or cranial / lymphe related techniques such as in this blog).
How could it not be so? Unless a miracle drug appears curing ME/CFS or FM will likely require a variety of techniques applied simultaneously.
I think my upper body pain is at least partly due to a breathing issue. When my fear/flight response is triggered – which probably happens hundreds of times a day (lol) – my torso rears up. With my head and neck pretty much locked down I think they may get scrunched when that happens.
“I think my upper body pain is at least partly due to a breathing issue. When my fear/flight response is triggered – which probably happens hundreds of times a day (lol) – my torso rears up. With my head and neck pretty much locked down I think they may get scrunched when that happens.”
That sounds like a fast switch on/off mechanism if I understand correctly ;-).
With me, when “pushing (way) to much” either physically or mentally my breathing gets a double hit. Someone reduces oxygen in the air by at least half and I have difficulty moving my chest. It is painful to then. In extreme cases I can barely move my chest at all for hours. Unpleasant!
Dehydration and supposed too few minerals ain’t helping either. Bad posture can add some, but is worse for the neck and in extreme cases blocks the spine with an almost leg-paralyzing feeling. Then I crawl rather then walk.
When fully and solely switching to diaphragm breathing I managed to get my diaphragm stuck / in cramps rather then my chest in such situations. Now they both contribute at times, giving each other a break ;-). I now spontaneously more and more switch to diaphragm breathing as base / low intensity breathing. Chest remains dominant at higher effort levels or when I get in trouble.
It’s interesting what you guys are saying about “trying too hard to fill your lungs to full pressure” being counter-productive. I was suspecting this from experience. I always get such an unpleasant sensation, I have to exhale some of the air immediately. I never really thought it through, as part of my “dysfunction compared to normal healthy people”.
I keep realising that things I once thought were “normal” are actually debilitations due to FM.
Hi Phil,
As I start getting slowly better, I get more and more this “I keep realising that things I once thought were “normal” are actually debilitations due to FM.” too.
What’s more, I start to realize more and more that things I thought were “normal” during *all* of my life, long before I got ME/FM, are actually related to me having ME/FM now. It seems part of this disease has been with me for my entire life.
You sure said it!
“…It seems part of this disease has been with me for my entire life…”
I have just been coming to a similar conclusion – that I always was “prone to FM” and that I finally succumbed to it when I was doing too many of the wrong things instead of the right things. For example, I have often pointed out that I came down with FM when I was doing a lot of competitive cycling and training. But in fact when I was a child and a teenager the “sport” I spent the most time on was Table Tennis, along with spending a lot of time on the Trampoline just because I liked the feel of it. These things probably “kept FM at bay” because they are exactly the right kind of “bouncing”, balancing, lunging, dancing, movement-co-ordinating activities to keep the fascia nice and mobile! It was once I reached adulthood, that firstly I became sedentary for a couple of years, then realised that I needed to lose weight and become fit and healthy again (although I continued to play Table Tennis regularly, this was not preventing weight gain). So I took up cycling, and because I was naturally good at it (so I discovered) I became competitive for a short time – and then the decline began, simultaneous with high job stress, a Giardia infection, and a minor surgery for a non-malignant growth. Recently I read Robert Schleip saying that of all sports, cycling is the one that is “not good for the fascia”! Many pieces of a puzzle have fallen into place for me in the last few years.
I finally have read a description that resonates with my symptoms. I was diagnosed with Scheuermann’s disease in my 30s but I’ve had this condition since my teens. I have 4 vertebrae that are basically squished together and my upper spine is bow-shaped. I have constant burning & tingling sensations in my upper back, neck and back of my head and it often zaps along the nerves in the side of my face and eye. These symptoms (along with chronic vertigo) are the most prevalent of the CFS diagnosis and are always with me but no one has ever connected the constant pain in my spine, neck and head with CFS. I’ve had so many people tell me that my posture is terrible and I should make more of an effort to stand up straight. It’s impossible to convince them that I’m not deliberately stooping or slouching.
I was sent for PT when I was first diagnosed with SD, which was much too painful and I sought massage therapy on my own. I found a therapist who was able to release some of the pain and tightness with deep tissue massage, but I finally had to quit because it was taking too long to recover between appointments. I now use heat on my neck and upper spine which does help at night (cold makes it worse).
I’ve always felt that if I could somehow fix my spine and get rid of the limited motion and the burning sensations throughout my upper body, I could heal from this illness and perhaps it would even help with the vertigo. I’ve looked up osteopaths in my area and so surprised to find there are a fair number of qualified members of the association. This article has given me renewed hope. I have bookmarked the videos and will watch them carefully. Thank you so much.
I feel the same way about posture. Once I get hunched over after too much exertion it’s very hard – it seems impossible to change – stretching exercises that otherwise would work don’t.
You do have to be careful that your osteopath does the right kind of drainage as Perrin noted that if its done the way many osteopaths do it they can exacerbate the drainage problems. Maybe an osteopath could look at how he does it. Hopefully he demonstrates in some of his video’s. He does talk about it in the book.
Good luck!
Thank you, Cort. I will be very careful with my choice of osteopath.
I forgot to mention that I also get that tightness in the chest muscles, even when I’m just walking a bit more than usual. It feels as if I’m being squished around the middle of my chest/torso in a vise and I can’t take a deep breath nor can I straighten out completely (it feels like there is a band around my upper torso that is tied too tight). This is the first time I’ve heard anyone else talk about it, so it’s been very helpful for me to read this article and the comments.
This theory makes a lot of sense and it seems to fit me and my son. I’ve been following Dr. Perrin for a little while and just emailed a local chiropractor to see if he would be interested in pursuing the Perrin Technique. I know Dr. Perrin will have a digital course coming out for Osteopaths and Chiropractors, but I have no idea when.
I am extremely skeptical of this man. He gives an example of Syringomyelia with mild A Chiari symptoms that he ‘cured’ by massage. A Chiari is a physical malformation at the top of the spine/base of the brain, and the syrinx within the spinal cord causes paralysis as it grown and crushes the nerves. Massage does not get rid of these physical problems.
He charges a great deal of money for his treatment, and only allows people he has trained to deliver his treatment, who also charge a great deal of money. If this treatment truly cure ME, it would be available on our NHS now. It isn’t.
Totally agree. I went to the Perrin clinic in London and had a couple of treatments. I was treated by another practitioner (Dr Perrin only works there occasionally) who seemed more interested in my business at any cost than anything else. After a rushed assessment I was diagnosed as being very ill and that treatment could take up to 2 years to help me. During treatment she showed me how to do my daily exercises and was insistent that the toxins should be released at a particular part of the body just by the collar bone otherwise the treatment wouldn’t work yet forgot to tell me that I should avoid any other form of detox, including massage of any kind, until I happened to mention massage by chance in conv. I would have thought this should be one of the first things to mention if it’s that important. The only experience, including a brief meeting with Dr Perrin, left me feeling very uncomfortable.
I think he is just another Scammer Money Sucker off the Desperados I Follow Science, not Quackery obvious the Guy has a vested Monetary interest in Patients
The training I understand as he says if you do the ordinary kind of osteopathic massages it will make things worse. Sorry to hear about the money though! I had no idea about the costs. Money is such a stumbling block for so many of us. Does anyone, anywhere do sliding scales anymore?
I’ve been following Dale Bredesen’s approach to Alzheimer’s – something I think could help for ME/CFS. Last year he simply provided the names of doctors who were trained in his protocol. Now he charges $75 a month for 12 months simply to provide someone with a name of a doctor who does his protocol.
I have to disagree that if the Perrin technique was curative the NHS would necessarily cover it, though. I assume that they will only cover treatments that have a substantial number of studies devoted to them. Perrin does have a study which shows moderate benefits. I imagine that, as in the U.S., the UK covers very few alternative treatments. Anyone going to a functional medicine doctor here is going to have to pick the costs unfortunately.
Perrin makes it clear that recovery occurs in about 15% of his patients but that the vast majority will need other kinds of treatment.
My policy is if their study hasn’t been published in a major medical journal and passed the muster of peer review and yet they are taking patients money than they are probably unethical and ripping off desperate people.
And there is no shortage of these types in every field of medicine that doesn’t have quick easy fixes.
The book tells you how to do the massages yourself or with the help if a partner. I chose to go to a perrin practitioner first just so I knew I was doing it properly.
Hi Shirley
I can understand you are skeptical and rightly so. It is important to do a great deal of research before trying anything. Regarding the Syringomyelia I believe Dr Perrin would not claim to “cure” this using massage. His treatment helped alleviate some of the symptoms but may not have been the only factor. I do not know details of this case but am basing my reply on knowledge of Dr. Perrin. Regarding the fees as he is a pioneer in this area and has put over 30years study into CFS/ME his charges are comparable to a medical professional. He also will treat people gratis if appropriate. Part of his fee goes back to ForMe a charity set up by former patients and supporters to further research. I appreciate money is a major issue for people with ME and I wish as he does the NHS would take up this treatment. A double blind placebo trial to compare his diagnostic system with that of the NHS was completed last year in a hospital in Lancashire – with extremely beneficial results for Perrin. He hopes this will be taken up as an aid to diagnosis by the NHS and is working on this. But these things take time and money. At present all practitioners are trained by Perrin as this maintains high standards. Costs are decided by individual practitioners and are appropriate to other professionals working in complementary therapies. As a practitioner I am conscious of how expensive fees are for some people and will always try to offer discounts and find ways round this. Most of us have done at least 4 years training as therapists and continue to keep up to date annually. As in all walks of life some therapists are more sympathetic that others. I hope this answers some of your points Shirley and wish you all the best
I’m just wondering where you got this information from as I think you may have been misinformed. I’m having treatment every week at the moment and I pay for this and my supplements using my PIP money.
Many people recover using loads of different techniques and treatments but none of these things are available on the NHS yet. So just because something isn’t on the NHS doesn’t mean it doesn’t work. He even says himself, 85% of people need other treatment alongside his treatment. That isn’t a sentence of a snake oil salesman. No one thing will ever ‘cure M.E’ People shouldnt be looking or searching for ‘the cure’ for M.E. Different things and different combinations of things help different people heal. Some people just do perrins work and get better, that is a small percentage though.
The only time in my life I have had relief and really started recovering from ME was after I started with upper cervical treatment in the US (I don´t live in the US). For various reasons I was not able to travel back and hence declined again, but if I ever get well enough to travel again, I know what my number one priority would be!:) That was after 10 years of trying just about everything. A friend persuaded me to go in the hope that it would help my back problems, which it also did. Worth a try even if you don´t feel you have problems with your neck, which I didn´t think I had.
I did groin-washing, which involves cold water rubs at the top of the legs. I heard about it on phoenixrising and wrote about my experiences there.
It causes the lymph to pump and I have to say it was amazing. It removed the ick from my brain and caused feelings of joy and euphoria. My brain felt shiny-eyed and youthful. Bet it’s the same thing going on.
In fact taking nimodipine caused a similar, if not as far reaching or long lasting (no lymph pump?) effect. Both created deep relaxation of the spinal muscles.
Fascinating. I never heard of this. For some reason my upper & inner thighs get uncomfortably hot in the evening, interrupting my sleep. I’m going to try this. Thank you!
Hi Robert,
Interesting post. I have a few small questions:
* Did you also try hot/cold showers (or locally on legs) to improve blood flow in the legs? If so, how does it compare to groin-washing? I ask because when I tried hot/cold showers on my legs it gave very inflammatory reactions in my legs. Would be nice to know if groin-washing would be less aggressive.
* Do you happen to be a patient with above average, normal or below average body temperature? Body temperature seems to determine outcome of hot/cold showers with me.
* Might you have a link? Haven’t got success doing a small search yet. No need to do too much effort, can try further search if needed.
Thanks, dejurgen
*
Luckily I’m ill at the mo so I don’t have my usual mental fatigue. Luckily the the last three colds (this might be a flu though – slightly different) have all produced this effect.
http://forums.phoenixrising.me/index.php?threads/bains-d%C3%A9rivatifs-cold-water-therapy.15574/page-6#post-713400
Page link to my post above. I think I’m the last post.
I have recently failed a second time to get a diagnosis of cfs/me. I am not presenting like someone with cfs apparently. I still thing it’s the most likely explanation but that I had pre-existing attention and memory issues which have magnified due to the illness. I think I have made some interventions that changed the way I present but not done anythingt oremove the illness.
I was low body temp but raised it using Steve Richfield’s guides on fixlowbodytemp.com website. I was somewhere in the 35c’s then went to the trad 37c with some afternoon overshoots for a period of time after ‘correction’ QWether this was a good idea or not, is another matter.
I did this before the groin-washing so I was 37c when I did it. I tired other varieities of hot and cold dips, baths and showers without ant effect like this and I found it very gentle. Not so much on the skin from the rubbing.
Obviously recovering from the illness and I noticed speling mistakes comin back and tiredness coming on. I can answer small bits periodically id you want to now anything else.
Thanks for the info Robert. It’ll take me some time to read it all and try.
Unusual reaction, having cold and be better. Having extra flee-or-fight or anxiousness when having an additional illness?
I’ve heard of several people having this reaction after an allergic attack. I do better on higher adrenaline levels too. For near all people it’s however a costly loan, after the days of adrenaline increase there is a deep malaise.
This is interesting from my experience too; I never thought about it, but after I exercise I am always very hot and sweaty around the groin, and I always use cold water on a flannel as part of post-exercise washing, and it always feels good, so I always do it. I never thought there might be more complex beneficial effects taking place!
Maybe there are many things I am accidentally “doing right”! By the way, I frequently use a spa pool at the swimming pool complex I go to; I warm up my muscles and then do stretches. My body weight being supported by water as I do the stretches, is really helpful too. But the elevated body temperature is a “downside”; I always use the main pool for a bit of swimming or acqua-jogging AFTER my spa, to cool myself down again. I also let myself “air” afterwards with minimal clothing until my temperature has dropped again. Cold water on a flannel helps here too (I am too much of a wimp to take a cold shower!).
Sounds like his approach helps by enhancing lymphatic flow, but I don’t think he’s made a convincing connection between the viral origin of the illness and the skeletal deformations.
From his 2007 book (apparently soon to be updated): “My hypothesis does not rule out the possibility of viruses being involved in the pathology of CFS/ME. However, I believe that the condition is pre-viral rather than post-viral. I believe that the sympathetic nervous system’s dysfunction leads to an impairment of the body’s immune system. This in turn results in the entire body becoming susceptible to viral infections of more than one type. This explains why research into viral causes has been going on for some years, with many different viruses being suspected of playing a role in the establishment of the disease, but with no conclusive findings…..I believe that viral infectious diseases occur as a result of CFS/ME and are not the creators of the disease. This, I believe, is why, in the very early stages of the disorder, only a mechanical and postural-based examination can detect the development of this disorder before the sympathetic nervous system breaks down.”
He seems to imply that skeletal problems lead to nervous system problems which then lead to CFS/ME. From what I’ve read, stressors from toxins, psychological trauma and various forms of physical trauma, including diseases, lead to immune system disruption. Conceivably, skeletal issues could also cause stress. But then, many athletic types – like me – have been laid low, and I assume that they were in very good shape at the time.
Re your first sentence – yes – Ray Perrin describes finding specific recurring physical issues in all ME sufferers, particularly in the thoracic area of the spine, which creates a propensity for sympathetic nervous system irritation. (I think Ray Perrin reports that this is typically associated with thoracic lordosis accompanied by a centrally flattened section of this part of the spine.) – I haven’t had a chance to read this blog properly yet. And yes, he says that the other stressors you mention can all add further strain, leading to sympathetic N.S. overload > breakdown.
However, he theorises that the dysregulated immune system is a secondary consequence of the SNS breakdown, as the latter results in poor blood flow and lymphatic drainage, leading to the increasing build up of toxins in the brain and spinal cord – further damaging SNS function in a self-perpetuating cycle.
An ME sufferer may well have been a very fit, athletic person before succumbing to ME, but they would also be someone with particular physiological and genetic susceptibilities which, via a further combination of physical, and possibly psychological stressors, can lead to their more vulnerable SNS becoming irritated > overstimulated > overloaded, leading to its breakdown.
This would typically be an underlying process which builds insidiously. Someone with gradual onset ME will just deteriorate (or perhaps fluctuate) over time, whereas sufferers with sudden onset ME may be hit suddenly and dramatically by a virus from which they never properly recover (or it might perhaps be a vaccination ‘hit’, environmental toxin exposure, physical/emotional trauma). Nevertheless, in the latter case, the underlying SNS problems would have been building over time, so that the sufferer was already primed to ‘crash’ before the final physiological assault from the viral stressor or whatever.
It’s actually quite a classic scenario for athletic folk to succumb to ME: besides their particular underlying susceptibilities, they may well be regularly and strenuously engaging in activities more liable to add strains to the thoracic spine through perhaps dancing, gymnastics, cycling, horse-riding, rowing etc. Conversely, others (of those with susceptibilities) who study a great deal, or whose profession perhaps involves more leaning over, or lifting, can also exacerbate thoracic area issues (eg, teachers, nurses, doctors, academics). Many others will be highly studious athletes – a potential double-whammy in the ‘thoracic strain department’.
Unfortunately I’m not actually very well up in biological knowledge, so my understanding of this theory is still a bit rudimentary (the processes he hypothesises to be involved are fairly complex!) However, I can recommend your listening to the above Dec 2017 podcast Cort has included (‘The Perrin Technique – are poor posture, lymph flow…?’) if you’d like to find out more – it’s a very interesting interview (others have said the same).
(Just seen Ray Perrin has left a comment, so that explains more.)
Frequent use of computer screens and worse tablets and smartphones is bad for posture too. I saw a report on TV on a study that showed that 1 hour of tablet or smartphone use is worse for the neck and back then (if I recall correct) 8 hours of standing.
For me that checked out. Part of my pain/mental problems (and their delayed effects on fewer energy) when reading are caused by poor position.
So it can be worth investing in a good fixed computer screen that can be well positioned and is large enough so you have to move your head slightly to read. That loosens the neck a bit compared to staring in a fixed position. Having bigger letters further reduces the effort the brain has to make. Investing in a good desk chair with head support may be worth it too.
Not everyone gets M.E/CFS from a virus. Also those who still are on the virus band wagon need to understand that things like EBV are present in some healthy people as well. Its not the virus its terrain (the immune system of the person) if a virus is your genuine issue then you just need to optimise your immune system and get in a calm, healing (parasympathetic) state. Otherwise your immune system cant function properly. If you’re wired/stimulated a lot this is more sympathetic nervous system.
I can’t wait to get this Dr’s book, to try the exercises. Strangely my upper back/thoracic region has become frozen. Chiropractors can’t move it. Of course I then get loads of spasming. This encourages me to put more energy into using rollers, etc to try to free my upper back.
Interestingly, this past summer I was forced to sort through a storage unit during a very hot summer in NC. I sweat so much that I looked like I always had come out of the shower, all day long. I’ve thought since then that the sweating/detoxing enabled me to do the work. Wouldn’t it be amazing if this technique could detox my brain & thus fix my immune system (chronic tick infections, antibiotics & herbs for years). Exciting! Thank you Cort!
Good luck!
Three things that help me and give some relief
Qigong (tai chi) gentle movements which improve posture, help lymph move, massages organs and uses breathing techniques too
Shiatsu massage, he works a lot on my neck and head, myofascial release and general energy work
Mindfulness meditation and breathing, I also have COPD ( FM & ME) and can increase my blood oxygen saturation with deep breathing
Not a cure but definite relief and many aspects in common
I’m interested in how this ties in with hypermobility EDS.
I have severe pain from scalp to toe, with hard muscle knots in every single muscle. All my bones subluxate. I do feel better when my ribs and vertebrae are placed back into position, but within 2 hours being upright, they slide right out of place because the connective tissue is so abnormal.
I’ve been seeing massage therapists, physical therapists, and chiropractors for 5 years, and, while it brings significant muscle pain relief, it does not help the brain inflammation (based on spinal taps, and SPECT and EEG scans) chronic bacterial infections, or severe hypersomnia that causes me to sleep 13-16 hrs/ night.
I had progressive POTs and EDS since childhood but developed ME/CFS after an encephalitic illness in 2011.
Dear Cort and all,
Thank you for highlighting my work. I first met Cort at an IACFS/ME conference many years ago…I think it was Reno. Thanks for highlighting CFS/ME and Fibromyalgia in your wonderful Blogs.
I firstly would like to apologise for those of you who haven’t managed to contact the clinic yet and we have had a deluge of emails since our last diagnostic research study was published in The BMJ last November and then highlighted on Sky news etc. We are endeavouring to reply to all emails.
I would also like to offer answers to questions relating to my treatment in this comment.
1. I cannot promise to help all, but we help most patients. An internal audit showed that we helped 90% of patients in the first year. Unfortunately some need much more than my treatment can provide often due to co-morbidities (other diseases or conditions affecting the body) so often we have to address the other problems as well as the euro-lymphatic disturbance.
2. Unfortunately I have never received any payments for 29 years research so my only income is my clinic. nevertheless I do make reductions if there is difficulty in payment and encourage my trained practitioners to do the same. Many of my present patients pay reduced rates so sliding rates do exist.
3. The varicose vessels we feel and sometimes see are varicose mega-lymphatics which have a colourless fluid in and are so the same colour as the surrounding skin tone rather than purplish varicose veins.
4. I never said that I cure the syrinx of the girl I treated who also had a slight Chiari malformation (cerebellar tonsil protrusion) . As the person said that it is a physical problem that can’t be cured by massage….totally agree. She had the syrinx before and after the treatment but I helped the restricted drainage that was affected by the syrinx and helped her symptoms. Recently I have seen a lady with CFS/ME who also had a benign tumour in her brain near her hypothalamus. Remarkably although she has has severe symptoms for many years she has begun to improve and started a little job already after only a couple of months.
My techniques work on the physiology of the brain not so much the pathology. One the lymphatic drainage improves and more toxins leave the brain and the spinal cord, the function of the central nervous system will improve.
5. Never give up…there are plenty of doctors, scientists and advocates that are driving research forward and we will find solutions to most peoples problems . All CFS/ME patients are different and after seeing thousands of patients since 1989 I have come to realise that everybody need a slightly different approach. My treatment should help most but very often it needs to be in combination with other approaches and we all need to work together to help the Millions of sufferers worldwide.
6. As Cort says I am working hard to get more evidence to show that The Perrin Technique can help and why. The research we just published did highlight that it is very much a physical disorder with physical signs which is a very important fact to put to anybody that believes it is all in the mindo
Take care to all my friends in the USA and beyond and especially the CFS/ME and Fibromyalgia patients around the World and my very best wishes for a happy and healthier Easter, Passover or any other festivals are being celebrated in the coming week.
Dr Perrin – I have purchased your book and have started the home exercises, however, it’s not clear (to me) how many times a day to do the “self massage” component.
Emails to your clinic are bouncing back. I’m in Australia so have to make do with the home care and finding an Osteopath willing to attempt the treatment as best he/she can.
Thanks.
Please can someone do or give a link to a summary of the information and things that will help.
I’ve also heard, many years ago, that many ME/CFS people have chronic sinus problems, which would seem to fit.
Thanks for this.
Lyn
one more thing to keep my head spinning….exactly what neurologist told me today when I stepped into his office, “you have terrible posture”, but didn’t offer any reasonable resolutions to severe dizziness and brachial neuritis, except aerobic exercise…duh, it hurts to stand!
Thoracic Outlet Syndrome (TOS)! Great article, thank you. I have M.E. and am currently being treated by a great Physical Therapist for neck pain. I had left sided scapula, rib, & neck pain with 4th, 5th finger numbness when I woke up in the mornings. She aligned my C1 & C4, ever so gently, reduced my 1st rib (Ehlers Danlos Syndrome, hypermobile, “loose” joints), & did some lymph drainage of my neck. I was nauseous and dizzy for a few minutes, then my sinuses opened up, which felt good. I have better ROM (range of motion) now. My scalene muscles are tight & my posture is concave, rounded shoulders, so I am doing very gentle “core” muscle stretches and strengthening. I can’t say that it helped by brain fog, inflammation, but it has definitely helped. I don’t have neck pain and will focus on TOS treatment to see if I continue to improve. I saw a YouTube video on TOS, it shows how to stretch and use a PT ball, tennis ball, to massage the TOS point, trigger point below the left scapula to help facilitate thoracic duct drainage.
Well, this sure fits my situation – I have a flat thoracic spine in the back, a moderate pectus excavatum (concave indentation in the front sternum area), and a straight neck (it’s supposed to have a curve). I had a breathing test done a short while ago and was told that due to the pectus excavatum my breathing is reduced by approx. 30%. Now I wonder if it’s also due to the flat spine in the back?
I believe that Dr. Peter Rowe at Johns Hopkins also noted that his ME patients have an abnormal thoracic spine (flattened, not curved).
My ME/FM symptoms are mostly in my head, neck and shoulders, so this is something I need to pursue. It’s difficult for me take deep breaths, so I tend to breath shallowly and often hold my breath. I have been attributing most symptoms to tight fascia, but maybe it’s a combination of many things.
Wow, approximately 30% reduction in breathing by only having a moderate pectus excavatum (or slight misshape of 1 single bone if I understand well)? That’s huge!
That means 70% of breathing capacity is left at equal effort. As 70% times 1.428 equals 100% that also means that you need to do 42.8% more effort to reach “normal” breathing. Not a small task for a ME/FM patient with reduced muscle strength and reduced brain motor control.
It is worse however. Lung efficiency or the ability to extract oxygen from air and remove CO2 goes down with poor blood flow through the lungs. With our reduced blood volumes, often small harts and hart pre-fill problems that may add a gas exchange efficiency problem to the mechanical problem of reduced air intake.
It still gets worse. Research has shown we likely have (severely) increased oxidative stress. That adds more problems. Part of the oxygen is “lost” in the production of hydrogen peroxide, further reducing oxygen available for aerobic breathing.
And part of the produced hydrogen peroxide fixates to RBC. Hydrogen peroxide has similar effects as CO or carbon monoxide on RBC, although to a lesser but still really potent extend. It strongly binds to RBC, each molecule of peroxide occupies a RBC far longer then to CO2 or O2 does. That takes away 1 vacant position for a long time. But for each molecule of peroxide fixed 3 more molecules of O2 are strongly fixed to the RBC, making them near unavailable to the body.
Carbon monoxide is the invisible killer suffocating many people. Having our bodies likely producing much of its smaller cousin peroxide isn’t going to help breathing I believe.
On top of that, there are reports that our RBC aren’t as flexible as they should, reducing blood and oxygen flow in capillaries.
Add a mix (varying from patient to patient) of these effects and many patients will see an effective drop of over 50% of “breathing and oxygen delivery capacity”. In order to compensate they’ll need a whole 100% more breathing effort then healthy people, whilst having a broken body!
Still getting worse. During the day we can reduce oxygen needs (compared to healthy people) by pacing a lot. At night breathing and blood flow goes down in healthy people. For many of those healthy-ish people breathing becomes suboptimal at night. Now imagine many of us having 50% less oxygen then this suboptimal quantity. Disaster!
That IMO leaves the body with a few options:
* Go into deep hypoxia every night and cause severe and rapidly accummulating permanent brain damage.
* “Override” night mode and produce plenty of activation hormones at night. This “destroys” sleep.
* Extensively use emergency hormones like adrenaline. Adrenaline is a prime bronchodilator increasing breathing efficiency. It also reserves blood to the most vital organs like the brain and liver. That likely reduces “repair” work on the body at night to near none. Also produces lovely extreme nightmares.
Any 3 of these procedures at night likely is insufficient. So in the second half of the night you probably end up with plenty of waste from increasing anaerobic breathing. Might be why there is also increased lactic acid seen in ME patients brains. When the brain would switch to increasing use of anaerobic breathing, it’s trouble time.
To make things worse again, detoxifying this toxic waste (toxic only because levels get too high) the liver (that is in the adrenaline list of vital organs) must start recycling lactic acid and pyruvate to glucose again… …at a high cost of oxygen.
So early morning we end up with a combination of increased (compared to healthy person) demand of oxygen and strongly reduced oxygen uptake and delivery (around 50% less). Combine both (using guesstimate 15% increased need of oxygen and 50% breathing efficiency): 1.15/0.5 or 2.3 times more breathing needed then a healthy peer does. With a disease crippling muscle movement. No wonder my chest used to feel each morning lick a truck ran over it.
After waking, still plenty of toxic waste left. Too much lactic acid but also plenty of damage due to ?mild? but body wide ischemia and a nice collection of virusses and bacteria that took advantages of the immune system being oxygen starved at night too. The cleaning up of toxic wast will require oxygen and blood flow. Cleaning up the ischemia is best done with inflammation and controlling the nightly body wide growth of nasty microbes asks for a strong immune response… …good morning???
That may be were pacing fails IMO. Pacing does few good at night. In my worst period I tried to reduce steps a day from 200 to 100 to 50 but still failed to improve. But doing less should have left “extra energy” to improve I hoped. For so long I didn’t see the elephant in the room when trying to chase the annoying mosquito.
It’s still preliminary but I managed to brake my last near inescapable downward spiral by trying to improve blood flow and breathing at night plus increasing both in general by learning how to breath more efficient.
Trying to improve the blood flow and breathing at night was extremely harsh at the beginning. Every time I woke up I tried to move my body and do some breathing exercises. I started slowly as that was the only thing I was capable of. Three months later I spend 4 to 5 hours spread over the night doing this. All my energy went to it so I had near no single activity left during the day. It was an absolute will power burning routine. But where it would even turn a healthy person into half or full a zombie, it help me improve and break the vicious circle. Braking my sleep into smithereens was bad, but apparently not as bad as the alternative: likely deep anoxia during the night.
Now I’m over 1 year further and improved a lot. I’m nearing being able to manage most of my 1 person household on my own. Very basic still. And my mind is a lot clearer. Best of all, the nightly routine allows me to sleep better then I used to. I no longer wake up every 5 to 10 minutes but only 2 to 10 times a night. That makes that I can spend now less effort and time into it, having some decent length periods of sleep for the first time (?ever in my life?)
dejurgen
Dejurgen, wow, how to you know all of this information about breathing? Breathing is so complex, isn’t it? No wonder I feel exhausted even after very light activity such as having a conversation with someone – oxidative stress, ME/CFS/FM, skeletal defects, leaking arotic valve, and living at a high altitude. My 86 year old mother with COPD (congestive obstructive pulmonary disease)is able to do more than I can!
dejurgen,
As I have been using a CPAP machine to treat shallow breathing/sleep apnea at night (sleeping), I’m wondering if you may be helped by seeing a sleep specialist doctor.
My doctor, Robert Rosenberg, in Prescott Valley, Arizona, USA, has written two books and many articles and columns about sleep disorders. He has said that sleep apnea may be involved in Fibromyalgia, etc. I didn’t think I might have sleep apnea, until the daytime sleepiness became severe.
The sleep study results were surprising about how often my sleep was disturbed by the breathing problems without my being aware of it, or not fully aware.
Everyone should check for sleep apnea!
Hi Linda,
“As I have been using a CPAP machine to treat shallow breathing/sleep apnea at night (sleeping), I’m wondering if you may be helped by seeing a sleep specialist doctor.”
=> I have seen a sleep specialist doctor a few years ago. They did find that I woke up a lot more then I thought, I just fell immediately after waking asleep again. It was then borderline problematic. Sleep medication helped sleep but not ME/FM symptoms. When ME/FM got a lot worse, sleep problems got a lot worse too.
=> I have no classic form of sleep apnea. I did put a lot of effort in observing my breathing including during these short wake-ups. I did found I had no shallow breathing when in deep troubles, but almost breath my lungs out. At such nights I breath so much my ribs hurt like hell. I just fail to get oxygen out of it or into my cells. I think it’s the proposed methemaglobine thing.
=> CPAP might help me, but without an official recognized breathing disorder… But pushing even more air into my lungs may not be the solution.
As to “Recently I was wondering if my scoliosis might be involved with my FM, as well, as mentioned in this comments section above.” in another comment of yours:
=> if it forces you to use unnatural/unbalanced positions in rest and while moving then the mechanical load to your muscles/tendons/ligaments/fascia… may be far higher per same activity creating more potential for overloading these.
I meant Trigger Point below the left clavicle, not scapula…
For those of us who don’t live near trained practitioners of The Perrin Technique (I live in Colorado), are there sufficient techniques in the book to help us? I haven’t been able to figure this out based on the spare book reviews I could find, or YouTube responses. I understand that we are all different, and we might all need different techniques and therapy, but it would be nice to know if there are some basic techniques that we can do that MIGHT be helpful, and NOT cause more harm.
I am weary of any alternative practitioner that says my technique works but if you try any other you’ll probably make things worse because only my technique has all the right details. It’s very scary and discouraging. It also seems suspicious. He says to not go to any other osteo or do any other lymph work. But I see above someone says that they got some relief from Shiatsu massage, which is lymph work but not Perrin.
I really don’t appreciate the “do it only my way or you’ll be worse off” scaremongering. Maybe it comes from a good place where the practitioner really believes that they have the key and they don’t want to see people get hurt but I doubt anyone really has THE technique.
I write this because I was looking at trying some things like physio, massage and etc. then I read this and started to feel very anxious and discouraged. So am I supposed to twiddle my thumbs and try nothing now except this Perrin thing which is not available in my country? Surely not.
Thank you Cort for this great article. And thank you Dr Perrin for giving my daughter her life back. My 10 year old nephew, who was bedbound with ME, is making significant improvements to his symptons with the Perrin treatment.
And as far as i am aware Dr Perrin is the only health professional with a PhD in the diagnosis and treatment of ME
I have maintained for many years that the primary issue in many ( most?) FM/ CFS people is structural. Scoliosis ( even mild) is a huge risk factor as it causes disturbances in the sacrum, thoracic area, and neck. ( high rate of scoliosis in FM reported in The Fibromyalgia Syndrome edited by I. Jon Russell, MD, PhD) Women are at high risk due to a wider, inherently less stable pelvis. But this becomes complex, as many other structural issues can accompany the scoliosis. ( Scoliosis and Spinal Pain Syndrome by Prof. Dr. Valentyn Serdyuk – orthopedic surgeon, Odessa Univ.) Here are a few issues: deviated septum, small foramina/ holes in the sacrum and cervical vertebrae – where nerves and blood vessels pass through. I also have hemangiomas in 2 thoracic vertebrae, a long, redundant twisted colon, one side of my face slightly smaller ( hard to notice), cervical ribs, and more.
It is appreciated that there is an association between Chiari/ syringomyelia and scoliosis in a significant number of people. Setting the atlas and aligning my neck improved my symptoms, but my sacrum is unstable and this absolutely influences the thoracic, and upper neck areas.
So, thanks Cort and Dr. Perrin for highlighting structure. Another expert here in the U.S. is Jerry Hesch in Aurora, Colorado – a Ph.D. In physical therapy. My original injury ( from a chiropractor first visit for a sore right hip from yoga class) was to my sacrum – severely torn ligaments. Prior to this I was healthy, very active, teaching full time. No fatigue. No pain except in my hip – from a funny position in a yoga class. Over the course of 2 months my neck, and entire nervous system crashed. I developed severe pain, bed- ridden one year. Bowel and bladder function was extemely affected.
So, I have spent 20 years trying to stabilize and correct my sacrum/ pelvis. Many practitioners – none knew what to do. I think Jerry Hesch understands the complexities. Going there as soon as I can. Check out his videos. Blessings to all.
Merida, thanks for sharing Jerry Hesch’s name. I think I will call and schedule an appt. with him even though he is a long drive for me! It would be nice to get an evaluation from someone who understands musculo-skeletal problems. I am hesitant to purchase another self help book (Dr. Perrin) because they end up collecting dust on my bookshelf after a while. Every practitioner claims to have THE best treatment, but if you don’t have an evaluation first to understand your own situation, then the self-help books can only take you so far.
Hi Cort, thanks for posting this. I watched the interview with Ari many weeks ago (I’m in Aris program). I really enjoyed listening to Perrin as this was the first time I heard him have an in depth convo about his work. The NHS confirmed I have a slight scoliotic curve in my lower back AND two of the Perrin points I tested are extremely sensitive! My chest and my ribs. If i press (not too hard) on the correct place its so sensitive! I’ve read that some CFS people dont have these tender points, but I do, so I’m guessing this work could be quite a piece of the puzzle for me. Any thoughts?
The problems in the upper body listed in this article read as if I wrote a daily Journal of my symptoms that I have assumed were related to my FMS. I just about fell out of bed when I read the section about the odd and rather ugly varicose veins on the chest, as I suddenly developed the very same thing at about the same time that I began having the horrible upper back pain from muscle cramps between the spine and the curve of the shoulder blade. then a domino effect always happened in which the cramps traveled 2 first my shoulder then the neck, up to the jaw and then the temple. that pain was so intense that I would throw up, and I couldn’t tolerate any light or sound. I’d be bedridden in a blackened room, I couldn’t even have the TV on, for a minimum of 5 days using moist heat and alternating cold on the muscle in my back that everything originated from.
It wasn’t long until my rib cage on the right side started having muscle cramps all along it if I was up right. the muscle cramps were so strong that a rib had been pulled out of alignment. Physical Therapy could not stop my muscle cramps in my upper back. it’s like concrete almost all the time now. and one of the main reasons I’m mostly bedridden is from the severe pain I experienced in my upper body when I’m upright four even five minutes. I can’t cook because I can’t extend my arms away from my torso and nothing I do prevents that horrible tight cramp coming just above the waistline on my back. and it travels up my back and around my rib cage and then my chest will start to hurt and that pain will go up my neck and my jaw then down my arm just like you said yours does. I have even gone to the emergency room in the earlier days of this illness thinking I was having a heart attack. and I was admitted every time I went.
I have a horrible time with my lymphatic system. my doctor calls it hyper lymphedema. but from just the smallest bit of movement that results in an increase in circulation my lymph glands swell up and become inflamed. it is extremely painful.
My back is very unflexible now. and I had noted a really weird lump growing on the highest part of my spine at the base of my neck causing my head to push forward. and it hurts when I try to massage it out as if it were caused by muscle spasm.
I had such a horrible rib cage pain that I had to wear a rib belt 24 hours a day 4 years even when I lay down to sleep. And I have a brace for just about every joint on a person’s body.
And talking about toxins coming through the skin. I have the weirdest crusting lesions on my forearms that I cannot explain and it is chronic at this point. I’ve even gotten a staph infection in one of the lesions a few times because my immune system couldn’t fight off the small amounts of staph that live on the skin as part of a healthy system. I have one odd thing that I’m curious about. if one of the drainage points is above the sinuses could that explain the crusting lesions I get in my nostrils and up into my sinuses? an ear nose and throat doctor has me putting Bacitracin up my nose and around the corners as far as I can reach using my finger. it keeps the sores at Bay and has gotten rid of my chronic sinus infection.
This article is so fascinating because it addressed things that I’ve just accepted and tried to live with. I practically live with a freaking heat pad on my back. I can’t even sit up in a chair to have dinner. I have to have a recliner so that I can extend my legs and slightly recline my upper body.
And face pain. I suddenly developed rosacea and I turned beet red from the slightest bit of increased movement. plus I have some kind of a scaly condition that I thought might be psoriasis. I thought my eyebrows had fallen out, but I discovered I had this scaly cheesy weird stuff growing on my skin where the eyebrows would grow from. it’s just an awful mess! and I also sweat profusely from my scalp to my toes from the slightest bit of increased movement. and I can feel the heat coming off of my face when it turns beet red. the palms of my hands do the same thing when they’re flared up from overuse of my hands. and yes I have a brace and yes I have a and yes I have a brace for and yes I have a brace for and yes I have compression support for my hands and my knees but not my elbows yet. they help prevent swelling and inflammation, but when I forget to put them on before increased activity they workafter the fact to decrease pain from the swollen joints and tissues as well as the inflammation.
This really gives me something to think about. it has to be more than coincidental that the symptoms you described are my living hell. Fascinating.
Hi Maschelle,
You seem to have gotten a horrible form of ME/FM, even for this very bad disease. It somehow reminds me about an idea I proposed earlier.
Some time ago we had a discussion on this forum weather ME was an inflammatory disease or not. You know, no traditional inflammation markers for the majority of patients while most have plenty of inflammation-like symptoms.
My idea was that maybe ME/FM is a strong inflammatory disease with an almost equally strong anti-inflammatory reaction. That would fit also Lipkins study where many inflammation markers are elevated but non reaches the level it would with full inflammation. Many are stuck in between too high for no inflammation but too low for “real” inflammation.
The idea was that if we had damage that normally would lead to inflammation all around our bodies then all those parts might have to inflame as much as a toe with gout would: swollen thick and purple red. If the whole body from head to toes would do that it would be worse then sepsis and probably lethal very soon.
So the body has to strongly suppress the inflammation that would normally be needed with that level of body wide damage. By flooding it with anti-inflammatory stuff to temper the reaction. The downside would be: no healing of damage as inflammation is a healing process when all goes wright. In fact in sepsis both a lot of pro- and anti-inflammatory chemicals are present too and some researchers call ME sepsis-like.
In part you described it already but would you:
* have average to above average body temperature (many but not all of us are hypo temperature)?
* have average to above average blood pressure?
* have no problems with POTS or Orthostatic Intolerance?
* have seldom pale skin color and often pink/red or even purplish skin color?
* have frequent limb swelling, especially legs and around joints like ankles or finger joints?
* have easy red markings if you scratch (without cutting) your skin?
* maybe have easy itching feeling too?
* and maybe, harder for me (about opposite of this all) to guess according to these unscientific ideas, feel a bit better or at least no worse after eating something?
Interesting. I used to manage a private lesson in ballroom dancing every week. I had a break for a short time (overseas visiting family, a few issues, etc.) and decided I was too weary to continue. I wonder if the weariness was made worse by the lack of dancing. After all, it involves a lot of movement in the spine.
Breathing and Movement helps your lymphatic system.
It could be that you had ME building insidiously (possibly your thoracic spine area was being irritated by the dancing), and this ‘caught up with you’ when you stopped – in a similar way that people who’ve been overworking in their job for a long time (but generally coping) can find that their body starts ‘crashing’ after they’ve stopped to take a holiday.
So it may have been that with underlying issues present in your spine, these were actually being exacerbated by this form of exercise – when possibly what was needed was for you to have stopped dancing at an earlier stage while you addressed the back problems via remedial manual therapy + v. gentle forms of prescribed exercises and Perrin Technique-type lymphatic massage.
I’m just speculating of course – however, I think this scenario would be more in line with my own decades experience of ME (and many similarly-progressing ME patterns I’ve heard from others) – ie, that the weariness could have been a delayed after-effect of the dancing whilst physiologically ‘compromised’ by an underlying spinal issue, rather than something later emanating from this particular *lack of dancing-associated movement. (But then on the other hand, if your dancing was of a ‘sedately relaxed’, softly moving-stretching kind, whilst your later overseas visiting etc was conversely connected to a more stiffening-inducing sedentary, strained, tense life-phase, then it’s conceivable that your former ballroom dancing stage was the overall more ME-beneficial one.)
I’ve found with gradual onset ME, that the body makes endless valiant attempts to ‘rally’ when made to push through strain (of various types) – and this can seem successful at the time. But it always comes at a price, with ensuing deteriorations, followed by ever more compromised ‘recoveries’, until the body eventually becomes incapable of rallying much to the demands placed on it atall, and your function-ceiling permanently bears down upon you unmovably from directly above.
In my case – as I expect for very many – I can look back and remember these pushings-on as involving anything between ‘not really feeling ‘right”, and ‘feeling massively uncomfortable’. I imagine it would be possible for some with a still more subtly-developing, milder ME, to deteriorate more unnoticeably, at least for a while.
Some more fortunate ME sufferers may have a level and type of condition which is able to overcome these set-backs more or less fully, (ie, the ones BPS model-adherents fixate on to the exclusion of other reasonings) – but most find that the more they push through symptom-eliciting activity, the worse their illness becomes, and the greater the time and devotion to recovery is then required to start reversing the situation.
I suspect that Perrin is addressing an important symptom of CFS. I’ve certainly gotten relief from chiropractic adjustments, Feldenkrais training and fascial counterstain therapy. I can identify with the region of the spine he identifies. When my body became stress or agitated by a stimulant it affected my mid back, what I referred to as “the knife in my back”. Breathing exercises were helpful for me but improving my breathing by wearing oral appliances at night helped even more. Now I’m focused on what may be the root cause – the buildup of toxins and fluids in the tissue due to nutritional imbalances and heavy metal toxicity. This is a long process using Nutritional Balancing but I’ve observed positive shifts in the past 6 months of treatment and am hopeful this trajectory will continue.
As there are a number of subsets of ME/CFS and not everyone has fibromyalgia, it would be helpful if Dr Perrin and the clinic could keep records of the symptoms of each patient to see if a pattern evolves. It would provide an initial indication of whether it may be beneficial or not.
I replied to dejurgen about breathing, and sleep apnea, etc. after his earlier comment.
Recently I was wondering if my scoliosis might be involved with my FM, as well, as mentioned in this comments section above. Would like to learn more about scoliosis, treatments, experiences, etc.
I hope this will help some of you out there!
I’ve suffered with CFS/ME for many years following a bad case of mono in high school. My 2020 crash finally derailed me to the point that I had to stop working as the CEO of the digital marketing agency I’d spent a decade building (heart break) because of daily migraines, disabling brain fog, sleepless nights with night sweats, teeth grinding, extreme sensitivity to light, heat and noises, tonsil stones, swollen neck glands, and the sensation I can only describe as “lead in my bones” every day. I thought it would be enough to decrease my workload but my symptoms only got worse after I stepped back from work. In Dec 2021 after a stressful family moment where I felt my nervous system kick in, I threw out two discs in my neck (C5, C6) and was unable to move, walk, or care for myself for several months. I spent 6 months in physical therapy and was encouraged to get back in shape by my PT — terrible advice that sent me to the gym for a few weeks only to set me up for the worst crash in my life in April 2022.
In July 2022, was able to get into Dr. Betsy Keller’s CFS / ME diagnostic clinic at Ithaca College where she determined I have moderate to severe CFS / ME. In short – my neck was not just “thrown out”, but was related to the spinal issues discussed in the article above, and all of my symptoms pointed to an acute CFS / ME crash. Frankly, after a decade of medical professionals gaslighting me, I decided to ignore my CFS / ME as the culprit causing so much destruction. Needless to say, Dr. Keller finally gave me the information and validation to accept the diagnosis and put me on a path to healing. I owe her a great deal of gratitude.
I’m writing to share what’s made a huge, noticeable difference for me over the past several months in the hopes it can help others:
-Network Spinal Analysis treatments 2x week
-Lymphatic Massages 1 x week using an experienced practitioner who I brought Dr.Perrin’s book to and after reading it she was able to begin implementing his methodology.
-2 x day at home supine Pilates / core work that relates to stimulating very specific places in my body that are currently inferring with my nervous system – a C-Section scar, a scar in my nose, and lots of work on releasing muscles in my eye sockets that are helping with the sensory overload and migraines.
-Sauna 1 x day, followed by ice cold shower rinse
-As soon as I think I’m PEM’ing I put ice on my neck and head
-Replacing coffee with Matcha Lattes
-Throwing out my scale. I was absolutely obsessed with my weight for 20 years with an extremely healthy but restrictive diet to try to “heal” myself and control ongoing battles with my weight. I’ve finally realized this hyper focus on weight and food was only making my mental and physical health worse than eating intuitively and all organic food.
-Heart rate monitoring so that I don’t go over 113 BPM. If I do, I stop and rest.
-Planned rest periods leading up to and directly after any event. For instance, if there’s a special dinner I want to attend, I’ll reserve as much energy as possible all week so I’m able to attend for a couple of hours.
-Continued masking indoors. Yes, the world seems to have moved on from covid masking, but I know that another big illness could set me back in a massive way, so I continue to mask only indoors in crowded areas where I’m concerned about covid risk, despite being vaccinated.
-Removing all toxins, allergens from home — cleaning products, detergents, etc.
The overarching idea here is to get my spine and neck flexible, moving, and free up the brainstem from all the inflammation. Drain the lymphatics that are causing so much brain toxicity via Lymphatic / Perrin’ish massage, and the developing my non-existant core since the C-section so that I can hold my new structure in place. All of this goes along side the nervous system exercises my pilates practitioner developed to retrain my nervous system to “talk” to my core and decrease sensory overload.
After doing the above protocol for the past 6-8 weeks I feel a world of difference. I have a long way to go, but I can’t believe for the first time in many years that I’m waking up and feeling a little bit more energy, having a huge decrease in migraines, and am overall feeling significantly healthier. I now have hope for recovery, whereas a few months ago I lived in a constant state of fear that either my quality of life would be so horrible I’d miss the joy of raising my daughter, or that something even more horrible would happen and I’d be bedridden for the rest of my life. Part of healing has been releasing some of this fear.
This has been a huge financial and lifestyle commitment — it can feel like a full time job, but it also feels like the only choice I have if I want to not only survive, but thrive for the rest of my life. I hope my protocol helps provide hope and help to others.