The autonomic nervous system rears its head in fibromyalgia – again. The pattern in fibromyalgia is now pretty clear; the fight/flight (sympathetic nervous system) system is activated even during rest, the heart rate response (chronotropic incompetence) to exercise is in the pits, and the sympathetic nervous system – overactive during rest – poops out when under stress. Plus the baroreflex response, which maintains blood pressure, and regulates autonomic nervous system functioning, is not working properly either.
The question at hand in this study is whether the baroreflex response problems really matter; are they some sort of benign artifact of the disease or are they hitting FM patients where it hurts – by causing them increased pain and reduced quality of life?
It’s an important question. As we’ll see many studies link autonomic nervous system problems to pain and other symptoms in fibromyalgia, but the ANS seems almost like an overthought in FM. Central sensitization; i.e., increased pain sensitivity due to problems with pain inhibition in the central nervous system holds sway. Given that a great deal of evidence suggests both are involved the two issues may very well be intertwined in some way. Few researchers have attempted to close that circle, however.
The Baroreflex Response
Without the baroreflex response you couldn’t stand without getting dizzy or fainting. The response involves nerves in the blood vessels near in and around the heart. Receptors called baroreceptors found on these nerves constantly (fractions of a second) monitor your blood pressure. When your blood pressure gets too high, baroreceptors inhibit the heart rate by turning down sympathetic nervous system activity. When it dips too low they send a message to the brain to increase the heart rate.
The baroreflex system is particularly important when the body has to immediately adjust to severe, potential falls in blood pressure during standing as gravity pushes blood to the lower part of the body. A simple misstep by the baroreflex can leave one feeling light headed and fatigued when one stands.
Studies suggest that baroreceptor problems may very well figure in the pain problems FM patients face as well. A 2010 study asserted that the role baroreceptors play in pain inhibition has been “well-documented”. It concluded that problems with cardiovascular control likely played a role in producing the pain problems FM patients face. Reduced baroreceptor activation in a 2015 study was associated with increased pain intensity in FM as well.
A faulty baroreceptor response, then, could play a role in both pain and problems standing and perhaps even exercise.
Freedom from Fibro Summit Encore Weekend – Watch Any Presentation
Watch any of the 40-plus presentations from Dr. Murphree’s Freedom from Fibro Summit for free this encore weekend. If exploring alternative health options is something for you – or if you just want to explore what’s out there – Dr. Murphree’s Summits provide a great overview of the possibilities this large field of medicine presents.
The Summit provides simple techniques to reduce pain and anxiety, provides updates on the latest research, diet options (one of which has helped me greatly), ways to boost energy, the latest on fibromyalgia research (my presentation), etc.
Click here to check out the encore weekend and here to see a prior blog on it.
Are Problems Standing (and Remaining Standing) Common in Fibromyalgia?
That brings up one of the great unanswered questions (to my mind) in fibromyalgia. Are problems standing (dizziness, rapid heartbeats, increased pain and/or other symptoms) common in FM? We know these problems are common in chronic fatigue syndrome (ME/CFS) but what about FM? Have people with FM escaped the standing problems found in ME/CFS or have they somehow just passed notice in the medical field?
PLoS One. 2017 Jun 14;12(6):e0179500. doi: 10.1371/journal.pone.0179500. eCollection 2017.The degree of cardiac baroreflex involvement during active standing is associated with the quality of life in fibromyalgia patients. Zamunér AR1,2, Porta A3,4, Andrade CP1, Forti M1, Marchi A5, Furlan R6, Barbic F6, Catai AM1, Silva E1.
Now here we are in 2017 with orthostatic intolerance study that had FM patients stand for a period of time and while electrocardiogram, blood pressure, respiratory activity and autonomic tests ( fluctuations of heart period (HP), systolic arterial pressure (SAP), cardiac baroreflex sensitivity) as well as quality of life (FIQ: Fibromyalgia Impact Questionnaire) and pain (VAS: visual analogue score) were assessed.
The study had two major goals: document the baroreflex response problems in FM and determine if they were associated with increased pain and/or reduced quality of life.
The Study Results
The study suggested that the baroreflex problems in FM do indeed matter: FM patients with lower baroreflex activity had lower quality of life (FIQ questionnaire) scores and increased pain levels. Those results suggested that reduced baroreflex activity may inhibit FM patients from carrying out their daily activities (e.g. anything that involves standing).
More studies clearly need to be done but this study suggests that the orthostatic intolerance (increased symptoms while standing) may be common in fibromyalgia. Neither WebMd, Medical News Today, nor the Mayo Clinic lists problems standing as a major symptom. (Medical News Today lists dizziness as a secondary symptom.)
Evidence of orthostatic problems, however, showed up early a 1997 study finding that 60% of FM patients (but no healthy controls) exhibited a significant drop in blood pressure during a tilt-table test. Martinez-Lavin followed that up with a 1998 study highlighting the autonomic nervous system problems that popped up when FM patients stood.
A 2005 study found a high rate of fainting (44%) during a step-wise TILT test. I was unable to find any studies evaluating the incidence of postural orthostatic tachycardia syndrome (POTS: >30 heart rate increase upon standing), but Staud, in a 2008 review, claimed that POTS commonly showed up in tilt table tests in FM.
One other ME/CFS/FM takeaway of note: as in ME/CFS the associations disappeared during rest – like ME/CFS, FM studies need a stressor such as standing or exercise to bring out all the abnormalities present.
The Autonomic Nervous System Pain Connection
This isn’t the first study to suggest that autonomic nervous system problems are affecting the symptoms FM patients experience. Two studies indicate that indices of autonomic nervous system stress are strongly correlated with symptom severity. The authors suggested that problems with standing, tolerating warm temperatures, stressful events, sweating, dry eyes and/or mouth, light sensitivity, bladder and bowel problems, and even cognition could be associated with autonomic nervous system issues.
A 2015 study found a direct correlation between sympathetic nervous system activation and the amount of pain an FM patient was in. Another study concluded that “autonomic dysfunction is inherent in FM“.
Central sensitization has dominated the conversation regarding pain in FM but these studies suggest that autonomic nervous system needs to be taken into account as well.
Do you have orthostatic intolerance or autonomic nervous system dysfunction? Here are some common symptoms people with OI experience upon standing or remaining standing for longer periods
- Exercise intolerance
- Rapid heartbeats
- Feelings of anxiety
- Increased pain
- Vision problems (blurred vision, “white-outs,” black-outs)
- Hyperpnea (increased depth of breathing) or sensation of difficulty breathing or swallowing
- Sensitivity to heat
- Cognitive problems
It can help to ask yourself the following questions:
- Does sitting upright, standing or standing still for a period of time bother you?
- Do you feel the need to move around when you’re standing for a period of time?
- Do you feel better when sitting with your feet or a foot up or with your legs crossed?
- Are you tired after eating a meal?
- Do warm showers bother you? Do you do better in cooler showers?
- Does warm weather bother you?
There are several home tests you can take to determine if you have orthostatic intolerance or autonomic nervous system problems. Check them out in Health Rising’s Orthostatic Intolerance and Dysautonomia Diagnostic Resource Center.
Often the CNS is seen as the only or main cause of orthostatic intolerance. However in ME there are several other blood flow problems. One of them is problems with either (far) too much vasodilation or vasoconstriction. There is still discussion which one of both is present or if it varies upon the actual case. I’m less aware if likewise problems happen with FM.
Anyhow let’s suppose there is too much vasoconstriction throughout most of the body so that most arteries and veins are strongly constricted and have difficulties to dilate. I’m going with too much constriction as with ME (and FM?) there is massive ROS present; ROS kills NO and lack of NO causes strong constriction. (A likewise reasoning could be made for too much dilation).
Now let’s see a patient that goes from laying down to standing up. In order to increase blood flow the hart rate could be pushed up by the CNS. That will increase the total blood flow throughout the entire body. That is not what is supposed to happen: ideal regulation maintains constant blood flow trough all parts of the body as long as no part requires more blood flow. Therefore all blood vessels around the body have to either constrict or dilate. Those beneath the hart need to constrict in order to not increase blood flow. The ones above the hart (mainly head) could use some dilation to support easier flow to the head. But with supposed far too much constricted vessels it’s rather hard for the vessels in for example the legs to further constrict. With a lot of ROS it’s hard for the vessels to and in the head to dilate a lot.
So, by supposedly just being able to increase hart rate and hence blood flow at best the flow to the head can be kept constant at the cost of (way) too much blood flow to the legs. That’s both costly (it always requires high hart rate when standing up) and very likely very inflammatory (professional cyclers try to reduce blood flow in the legs in order to avoid too much inflammation after a race). So the brain needs to decide between too few blood to the head and the brain itself or way too much inflammation in the legs. It’s like choosing between cholera or the plague.
There are various potential solutions to this theoretical problem like:
* Reduce average blood flow by reducing average pressure; this can be done by reducing amount of blood volume or hart stroke volume (small hart).
* Keep hart rate near constant and let take the head and legs a (different sort of) hit while standing and “promote” lying down. This near constant hart rate is a common observation as stated in the blog. It also is common to be near invariable between rest and being active. When I was at worst it was 85-90 at rest and 90-95 when sometimes falling of a treadmill in a failed CBT/GET. With such few variation between rest and activity it’s not hard to see patients suffer while exercising, see them going early into anaerobe territory and having too much blood flow early at night making it difficult to fall asleep.
* Another “nice” one could be between choosing between FM/ME or a mixture of both. Choosing to prioritize big way to conserve the brain would lead to setting blood flow too high on average. That would result in sufficient blood flow and oxygen to the head in all situations. It would however lead to too high blood flow to the legs (and all parts below the head to some degree) and high inflammation up there. While sleeping the head would receive too much to leading to some lesser amount of brain inflammation. That would resemble a case of FM. On the other hand the brain could chose to take the bigger hit itself. That would cause more hypoxia in the brain with following reperfusion injury and strong inflammation in the brain. The legs (and all parts below the head) however would take some less inflammation as a result. That would more resemble a classic case of ME.
All of above potential solutions have a mix of inflammation and hypoxia (less supposed hypoxia in the classic FM case) which in term leads to new damage and more of the same. As inflammation leads to high ROS production it keeps blood flow problems alive and combined it forms a vicious circle. All potential solutions also lead to difficulties switching from rest to activity or even switching between different types of activities requiring other blood distribution. And all lead to an overlap between ME and FM.
Dejurgen, your insights are always interesting. I now strongly believe that most people with FM have a myofascia dysfunction that is responsible for constricted blood flows and lymph flows. It is a simple “mechanical” problem and all the other issues with the CNS and the ANS are a consequence. Researchers looking for “causes” in the nervous system, have it back to front.
I strongly believe that the dysfunction in the myofascia is a result of problems with toxic elements / infections / the renal system / hydration. This is where research needs to be focused for FM. I am not sure about ME / CFS. If the conditions are similar to the extent that myofascia dysfunction is responsible in both conditions, they might as well both have the same name.
My hypothesis is simple – if the myofascia is insufficiently lubricated, it is unable to slide freely against adjacent tissue. All circulatory systems in the entire body, have to come through the myofascia, and if the myofascia is distorted because significant parts of it are “stuck”, then vessels will be trapped, squashed, and constricted. This effect is magnified when the muscles are in certain positions, and when they are loaded (versus relaxed). This explains a lot, and fits with what you are saying, and with the research Cort is summarising.
Although my brain improved quite a lot since being at my worst, I still have a quarter of a brain and one that is far to easily exhausted. I only can manage a limited amount of active information. When I look at the history of weaknesses in my family, the evolution of my health and what I can understand (basic physics, basic chemistry and system analysis) I’ll have more then my hands full with sticking to blood flow, breathing, tissue damage and looking in new ways at these. I’ll look deeper into fascia and the EDS connection Issie and LY and others follow once I’m ready to. So far I know little about it and find it far harder to see the direct link between them and ME compared to the direct link to FM. The blood flow angle works better in my particular case. It allows me to link many other problems without the need to resort to the existence of magic, unicorns or the need to rewrite basic science. It also gives me sufficient opportunities to try and improve my basic health.
So for simplicity I now consider fascia problems and EDS as “tissue damage, inflammation source and blood flow problems” and try to reduce them. Works good enough in this stage. I see you and others do a great job looking at it from that angle so I’ll save my quarter of a brain on that one until I further improved ;-).
As a side note: I know several otherwise healthy people who have severe problems with tendons caused by poor blood flow trough them. Good blow flow in tendons seems to be not that easy. In https://en.wikipedia.org/wiki/Fascia I found “Deep fascia was originally considered to be essentially avascular. However, more recent investigations confirmed a rich presence of thin blood vessels.” (Only, mainly?) Thin blood vessels are a prime victim of poor blood flow IMO. I believe that what could be a cause for one could be a consequence for someone else. In my case the potential cause for fascia problems could be a family tendency to have weaker blood flow and inflammation problems. In your case problems could more originate from the fascia itself. If so that could save you better from ME as blood flow problems possibly provoking ME are more secondary for you then for me. So we could have both problems with fascia and blood flow reinforcing each other but with a different emphasis/prime origin.
As to CNS problems I do believe near all patients with ME and FM have them. But I found them to be among the first to retract well with none-CNS related self-therapy so I’ll leave other people bothering with approaching the CNS side. Good to see research on it however to shed as much light on it as possible.
If you find a good direct link between fascia problems and ME feel free to post it ;-). I’ll read it with interest as I do with your other posts.
Thanks again, Dejurgen. Very interesting. Yes, you have summed it up perfectly – both your CFS and my FM may involve problems with micro-circulation through the fascia; but the pathway to dysfunction for CFS may be quite different to that for FM. I suggest that if a massage therapist can feel corrugations and lumpiness and knots in muscle tissue all over the body, and these are painful, and you have restricted range of movement in limbs etc – then you have FM and the issues are related to the physical distortions in the fascia. Almost certainly because the fascia “ground substance” (the lubricant) has become dehydrated and sticky. But I presume people diagnosed with CFS, don’t have these physically “mappable” distortions, therefore if the fascia is implicated, it must be via some other dysfunction in it.
I wonder if something else can go wrong with the fascia, to restrict micro-circulation, other than it losing its ability to enable adjacent muscle-fibre bundles to slide against each other (which is the case in FM)? Perhaps the fascia itself becomes less “stretchy”? Do people with CFS have reduced flexibility as well as the fatigue?
I have both CFS and FM diagnosis (ME doesn’t “exist” around here). I often say I have ME/CFS as that one cripples me most the last/worst years. I have never been flexible at all, but I do know someone with FM diagnosis who also has a clear and diagnosed case of hypermobility.
I could ask my therapist one day but in my unprofessional opinion my muscle feel tight but smooth. So I am not convinced yet that core fascia problems are key to FM. When FM related I feel I have mainly tendon/ligament/muscle pain. At worst the cross-section of my entire upper leg muscles (unsure about translation) felt like sliced perpendicular to the bone in plenty of small and very painful slices. I don’t link that yet to the fascia.
So for FM I’ll stick for now to “(plenty of micro) tissue damage”. I believe sites with poor blood flow to be extra vulnerable. That could be plenty of spread damage in the muscles in my case and very strong focused damage in the fascia in your case. Maybe it could be two likewise but different things. But the definition of FM itself ain’t that well aligned either.
As to poor blood flow in the fascia: all the usual ones like infection, thick blood, poor body position, inflammation… are candidates. A question unasked however is: why on earth knotted and tense fascia? If you lacked enough fascia “material/volume” it should resemble an overstretched membrane; that ain’t likely to be knotted. If you had too much of it, it should more resemble old peoples skin and wrinkles: not smooth nor flat but not tense neither. So I thought a bit about that one.
The best I came up with was scar tissue/?collagen? around “foreign” deposits or less likely around injuries. Think about an oyster: it forms a pearl around a foreign object in it’s tissue (some pearl growers inject grains of sand or so to increase pearl yield). The deposit around the foreign object protects the surrounding tissue. I don’t see the same happening in humans, but I could for example envision a collagen build up/encapsulation around for example small uric acid or calcium deposits in the fascia. Or maybe even around chipped and grounded pieces of former joint bones or broken of calcium deposit around bones. The later is know to exist: calcium deposits can grow “wild” on bone and cut tendons apart.
Now why I say less likely around injuries? Injuries should form bigger scars IMO. And bigger scars are far more flexible then very small ones with a crystallized core. Think rain shower versus water saving shower. The big drops of a rain shower feel heavenly soft. The tiny drops of a shaving shower bite a lot more cause they’re a lot harder. Around such small defect cores local tension would be very high exceeding average tension by an order of magnitude (commonly seen in mechanics with abrupt changes in material composition). That would constrict/squeeze surrounding tissue to the max. New vessel growth would have to be rerouted around it. Both combined would make local blood flow falter.
As most likely deposits are acid, an acidic diet would be a risk factor. Do you eat plenty of alkali vegetables to compensate for the strong acidic nature of the palleo diet? Did you in your younger years happen to do a lot of prolonged intense near anaerobic sports whilst eating plenty of protein for improved muscle growth (and too few vegetables)? Are there other family members with osteoarthritis or gout?
So far, this idea is nothing but wild brainstorming/science fiction.
I have issues with collagen (Ehlers Danlos) and many of us with POTS have lipomas. These are fatty, usually encapsulated little tumors. (And they are painful to touch.) I also have had issues with calcium deposits in soft tissue and that for sure causes pain. Genetically, I test for issues in the calcium channels. As mentioned in this thread – magnesium levels low. But, why? I am now being treated for Lyme and Co-infections. Some of which form biofilms that adhere to vein walls and make blood flow even worse. It is thought that biofilms use magnesium, calcium and iron to form. Could this be why we are having issues with those minerals? Is it a compensation to try to eliminate what shouldn’t be there? My earlier doc, didn’t want me to use those things. I seldom supplement those, except with my foods. And I’ve been mostly vegetarian/vegan for a long while. I have in the last few years added back some organic meat. I think I have more energy with it. But I can never do a full out paleo diet. I can’t digest or use that much animal protein.
Then it was brought up if part of the issue with blood flow is too thick blood. It is with me. I have many autoimmune issues and some genetic/epigenetic changes and have positive Lupus Anticoagulant markers for APS. So staying on enzymes and herbs to help thin blood helps.
It’s a complex puzzle and it’s all connected.
Very interesting post! I was a little surprised to see I got a hit on the potential deposits in soft tissue. How do you diagnose calcium deposits? What size are we talking about? Over a millimeter in size or more like spread dust?
When Googling a bit I learned that vitamin D (and K) do not only control calcium uptake out of food but that an impaired calcium to vitamin D ratio (both too high and too low) are the main cause for calcium deposit in soft tissue. I found also a link/?correlation? between calcium deposits in soft tissue and lipomas. A vegan diet without vitamin D supplement does increase risk here. An overly acidic diet could provoke uric acid deposits and similar as well as calcium deposits.
If there do exist “big” size calcium deposits, then they do not appear out of nowhere. There must be plenty of smaller starting ones. Crystallization or deposit speed increases if there are already impurities present, these act as “seeds”. So calcium gets easier deposited if there are for example uric acid cores present and vice versa. So one original problem could create the other.
The immune system often tries to remove “foreign objects”. If donor organs are foreign objects, deposits in soft tissue could be too. When objects are small the white blood cells can try to engulf them and remove them. When they are large that doesn’t work. When you have for example a wood splinter in your hand the immune system can’t “eat it”. It does inflame the tissue around it. So debris in soft tissue likely increases inflammation. When it is “mid-size” and in the hair vessels it (like arteriosclerosis but in the smaller vessels) could be removed by mild inflammation. If that does not work the immune system might have to step up a notch risking damaging hair vessels tissue. That would resemble anti-immunity against hair vessels. If calcium deposits are in for example the fascia they may be difficult to remove as there is no easy “access to a waste drain”. Encapsulation with collagen may be the better option. That could resemble more knotted fascia and EDS. As long as deposits would be small and unencapsulated the immune system might fight them vigorously leading to auto-immunity once more. Blood flow to encapsulated deposits might be cut to stop further growth. Along with local tension and increased distance of hair vessels to the cells that would impair blood flow. As such, once the initial problem is installed it gets quite hard to reverse it.
There is a significant correlation between low vitamin D and ME as well as auto-immune diseases such as MS. Maybe that is not a coincidence? Whilst I don’t think I have auto-immune problems I had *very* low vitamin D levels when I crashed the first time. Suddenly my doctor seemed to take me a lot more serious. Supplement did not do much however.
Many people with ME are on higher protein diets. Yet, few seem to have too high uric acid blood levels. I am in a direct line of men that easily have too high uric acid levels and enveloped serious leg problems. Yet whilst trying a halfway palleo diet and nearly doubling my protein intake (later I learned that palleo is not high protein) my uric acid levels remained good. I theorized our strongly increased ROS production could protect us from the harmful effects of uric acid because uric acid is an anti-oxidant and is degraded whilst reducing ROS. So I thought it to be safe to keep consuming high amounts of protein. After all, metabolic studies showed we have too low levels of amino acids even when eating sufficient proteins. This was explained as our body may go to fast into glycolysis using as much as possible sugar and amino acids.
Now I start to doubt. As high amounts of ROS do not only prevent the formation of high concentrations of uric acid but also should be able to slowly dissolve existing deposits of uric acid ROS may be deliberately increased to counter this potential problem and be a major cause of this Dauer state producing plenty of peroxide.
As for biofilms I go with the simplest pathway for now. Calcium is hard to keep into solution. Deviating a bit from ideal conditions and it forms sediment. Iron comes out of solution relatively easy as well. Magnesium ain’t that bad as calcium but doesn’t solve as well as sodium or potassium. Having blood flow stalled may shift chemistry/acidify/… blood enough to disturb balance and cause them to drop out of solution. It doesn’t require a biological trigger. Think about using a washing machine with calcium rich water: dirt, calcium deposits and some bacteria are enough to cause a smelly dirty film called “washing lice” in my language.
So far: plenty of fiction, few science but at least it makes some sense and doesn’t seem to go against all of basic science.
Interesting you mention proxide. I also have vitiligo – bleaching of skin – probably due to higher peroxide levels. My hypothesis on this is – it may be trying to kill off something. Having been now DX with CIRS and MARCONS and having Protomyxzoa Rehumatica (not called that now – it’s thought to be a mold/fungus) and Lyme with Co infections – maybe this is a compensation and not a symptom. Attempt to kill organisms and mold.
I do have issues with CBS and VDR in my methylation cycle and one causes issues with more ammonia – the other issues with Vit D metabolism. I had found that despite eating a lot of veggies with Vit K – I have to supplement with it to keep calcium in my bones and out of soft tissue. I take Vit D and K, but not daily. I also wonder if the lower Vit D is another compensation. I’ll look for my post on this on the forum here.
I found out I have calcium deposits when I fell and had to have an ultrasound and injections of steroids into my shoulder to get me out of pain enough to take a trip – until it got better. There was a lot through the whole front of my shoulder and rather large. He knew it wasn’t from the injury as it was more likely there for a while. I remember having had it looked at back in my early 30s – because it was very painful and you could feel it from the outside. It wasn’t breast cancer and no one offered an explanation. So this has been there and my body hasn’t assimilated it.
I have those little lipomas all over and they get larger and are painful. I have a neice-in-law who also has POTS and she has them too. My endocrinologist questions if I have one of the forms of MEN. Since I have 5 thyroid tumors and a brain tumor. Such a complex picture. I’m still uncovering my pieces to the puzzle.
23andme TRPM3 SNPs for CFS – Griffiths Research | Health Rising’s Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
Here’s the info/thread on the calcium channel mutations found in some with CFS.
I thought I had started a thread on calcium and how Vitamin D ups it in the body. But here is a bunch of comments I made on it in the blog.
The Exercise Intolerance in POTS, ME/CFS and Fibromyalgia Explained? – Health Rising
I yesterday called with a friend who has heel inflammation for a few months now due to training to much for a marathon. He mentioned “I had an X-ray of the legs and there was already a sizable (a few centimeters I think he told?) pin on the heel. His doc told him it’s normal for inflamed tendons to have calcium deposits on them. Due to the shape it didn’t endangered the tendon yet. The doctor was a specialist, but another doctor called this idea rubbish.” That was an eye opener to me.
If a few months of inflammation in a healthy person could lead to such an amount of calcium deposits, what could it do in weakened people with FM that may well be quite inflammatory and lasts for decades?
If I now look back at the vitamin D discussion I approached it backwards. Calcium in tap water deposits so easily. Faster when heated but even cold. I have a calcium remover on my tap water. It is near the lightest setting as the water is not that hard. Still I prefer to take my drinking water straight from the source before the calcium remover in order to have lower sodium intake. I have a glass bowl for that. After a few times filling the glass surface is ridden with calcium dots. So if calcium drops *so* easily out of water maybe vitamin D (and K?) does not prevent calcium from depositing out of soft tissue but rather calcium very easily gets deposited on all soft tissue and vitamin D not only increases uptake from the digestive tract but also from the many small deposits in the body.
Inflammation in that idea could either increase rate of calcium deposit or decrease rate of removing it / effectiveness with the help of vitamin D. Anyhow in this view lots of vitamin D is consumed whilst trying to reduce calcification. So low vitamin D could be a major marker for increased inflammation???
I searched the internet a bit and found much is unknown about the mechanism yet. Ideas are contradicting. Some see inflamed tendons as more vulnerable to calcification, others see it as a healing mechanism but many associate inflammation with increased calcification. And calcification in its turn increases inflammation due to friction. That’s a vicious circle. As tendons do have some similarity with ligaments and fascia something likewise could be happening there.
Too much Vit D leads to too much calcium. Vit K helps keep it in the bone. I know I have calcium channel issues. I also know I have calcium in soft tissue. What I don’t know is if lower D Levels is what your body does to try to turn down the calcium being improperly deposited/upped. I suspect it may be a compensatory response.
Another note, that I’ve learned about myself. Is I have mutation in VDR methylation snp. This helps regulate Vit D. Here is an article showing down regulation of this methylation process could lead to better response when treating breast cancer. I also know I have issues with P450 pathways for detox. (Someone else was talking about that.)
I have 5 genetic markers of gene mutations on TRP3 – that has to do with calcium regulation. The medicines that help me most modify calcium and sodium channels.
Don’t you just love all the science, especially when the pieces come together for you?
Reminds me that my doctor was very receptive to doing the NASA 10-minute lean test for me. Confirmed orthostatic hypotension… in ten minutes! I’ve always experienced a great deal of pain when standing still (well, since becoming ill that is). So I’m not surprised to hear there may be a link between orthostatic intolerance and FM pain.
Found your links to Dr Bateman’s NASA test printouts here: https://www.healthrising.org/forums/resources/a-simple-test-for-orthostatic-intolerance-in-chronic-fatigue-syndrome-and-fibromyalgia-the-nasa-way.388/
I think all FM or CFS patients should insist on having it done. The more you know, right?
How about that? Yes, the more knowledge the better and some treatments can be helpful. Thanks for presenting that link.
Exciting that we get more science to back what some of us long time, researcher types, have discovered with ourselves. I have all the DXs. But getting the docs to distinguish subset types – so important. I do believe what @dejurgen is saying. We may have conflicting problems below and above heart level. I find I have to vasodilate more than constrict. And with HyperPOTS – most docs try to do the opposite. That does not work for me. But there is a fine line as to how much. Too much causes a big crash of POTS symptoms. I have the FM label too. And if you asked my worst symptom – it is pain. But all the orthostatic issues don’t help. It’s really exhausting – there is a daily struggle with minute to minute adjustments needed. I think it’s all connected and we are all presenting in various ways. But it may be the same thing. Lots of what we consider “symptoms” are compensation. And if we treat symptoms that may be distressing and uncomfortable – we might make ourselves worse. Our body may very well be trying to “save” us. I have a few “bandaids” that help. But I don’t try to stop the compensations. We need to get more to the “core” problem. Stop focusing on symptoms. Probably autoimmune and inflammation – in that order.
“But there is a fine line as to how much. Too much causes a big crash of POTS symptoms.”
True, too much compensation ain’t helping often. I’ll try and guess how big the “overshoot” is and to compensate only about one third of it. It’s like with many things in life: improving the first 20% takes far less effort then improving the last 20% and with our disease the side effects of improving the first 20% of the problem are often far less severe then of trying to improve the last 20%.
It’s tempting to go further “whilst one gets the hang of it” but I’ll prefer to remove the worst part of another problem if I’ve got energy to spend. It’ll often amount to a better combined result for me.
“there is a daily struggle with minute to minute adjustments needed.”
I’ll find it to be time depending too. Once I need to reduce an overshoot, another time I need to supplement a lack of the same thing so just taking meds to up or down something with a constant amount just does not work.
I found minute to minute adjustments however far to demanding. So I’ll stick to “noteworthy” time periods as before-during-after exertion or day and night differences. Quick changes are also very demanding so I’ll avoid those. Standing up quickly and likewise are a no-no for me. Also between activities I have to take time to “come to myself”. That makes them far easier on my mind then switching from one to the other when they’re supposed to not interfere. We just need more time than healthy people.
Minute to minute adjustments are likely better as long as it does not cost too much resources. I’ll go for saving resources. Slow transitions do help me to avoid most of the need for these adjustments.
Well I had the tilt table test and also a treadmill test (they stopped it early) and I know that I do have this disorder but cannot find a doctor who seems to know about it, and the cardiologist does not want to give me any of that ‘bad medicine’ that could case my blood pressure to increase.
Dysautonomia International has a list of doctors on their website. http://www.dysautonomiainternational.org/map.php?SS=3
I’ve never dared stand up quickly. In the last few years I can’t bend over without faceplanting or walk round corners quickly without falling over. However I can’t face more tests for a condition with no treatment.
There actually are quite a few treatments. Beta blockers work for some. Increasing blood volume using electrolyte mixes, including home made ones can be helpful. Compression stockings can help stop the blood from pooling in the legs. For some people exercise – recumbent – to start off with can be helpful.
Check out treatment resources – https://www.healthrising.org/forums/resources/categories/treatment.192/
and ways to increase blood volume here – https://www.healthrising.org/forums/resources/categories/increasing-blood-volume.152/
I have read that FM patients have 60% of normal blood volume. Of course we are going to have trouble standing! I myself have had progressively worse trouble standing for the 35 years I’ve been ill. I dropped out of church choir because of it. However, there is hope. I’ve been doing the GAPS (Gut and Psychology Syndrome) diet to heal my gut for a year. Before I started the diet I could barely stand for 5 minutes and I can now stand for 1/2 hour at a time.
Congratulations. Studies indicate that blood volume is low in ME/CFS. I’m not at all surprised if it is in FM as well.
Cort, as you know, I have been considering the orthostatic aspects of my FM for a long time. Everything you are asking, applies to me (I am getting better but there is still a lot of improvement to be desired). Simply being “on my feet” is disproportionately difficult. I perform surprisingly well on a bicycle, or rowing. But walking or even standing, becomes intolerably discomforting very quickly. Attempting to jog results in total collapse within minutes, which makes no sense compared to how “fit” I seem to be on a bicycle.
Yes, the intolerance to heat is also typical in my case. This includes, that exercise produces elevated temperatures that take a long time to reduce. Since I have been experimenting with the intensity level, I know that the worst effects were always from anaerobic activity (which I have deliberately avoided for most of the time for 3 years now). There were times when I was still attempting to exercise as normal before I was diagnosed with FM (25 years ago) where I would be still flushed and sweating 6 hours later after a typical vigorous group training ride. (Cycling was always my thing).
One of the problems in my experience, is that the symptoms came on so gradually, I did not realise how abnormal my condition was. It is only now that I am improving, that I realise that many things were part of this single serious medical condition, Fibromyalgia. Muscles tightening and pain flaring, on standing for any length of time. Pain on sitting, not just in the back and neck, but in the butt. These things are all diminishing now.
Constant restlessness, trying to relieve pressures and tensions. Shifting weight from one side to the other, crossing and uncrossing the legs, etc. Relief always temporary, with the new position quickly inducing its own intolerable pains.
I think there are two separate aspects to the reduced ability to do things. One is the pain and its buildup or provocation of it by certain types of exertion and certain positions. The other is a more mysterious “hitting the wall” (to use an athletics term) physiologically, far more prematurely than would be expected for a normal healthy person, once a certain threshold of intensity is exceeded. Standing and even sitting, induces the first in me – i.e. the pain. But the second – the physiological collapse – doesn’t come on until a certain threshold of intensity of exertion has been exceeded. I can walk or cycle or swim, at low intensity, pretty much indefinitely as long as I can tolerate the pain. But “go hard”, and I will “hit the wall” within minutes, and have a lot of “relapse” type problems for the following hours and days. The elevated body temperature will last for hours and the specific exertion-related muscle pains will last for days.
I believe all these observations are explainable by the hypothesis of dysfunctional myofascia and a cascade and a vicious circle of effects. For example, the energy metabolism is greatly affected by the restriction on blood flows, which leads to a vicious circle of worsened oxidation, lactate and toxin production, all of which are then very slow to clear up because of the dysfunctions. I believe a very retarded system of clearance of toxins (post-exertion and other kinds) is part of the condition and possibly the original cause of the myofascia dysfunction in the first place. Of course this has a “vicious circle” effect because the more sticky and congested the myofascia is, the worse the restrictions to the toxin-clearance mechanisms.
Part of the jigsaw puzzle, is “why” being in “upright position” makes things worse for the “hitting the wall” part of the problem. Is it simply that more muscles are recruited, for the purpose of the body (or even the head) being held upright, and therefore the “stuck” myofascia is causing more vessels to be squashed and constricted than when more of the muscles are at rest?
So, Phil, what has helped you to improve with fibro?
I have been commenting on this site for 3 years, saying what I am doing and what is happening, but I haven’t collated it all into a guest posting yet (Cort wants me to) because it is a “work in progress” and I am still discovering things. But I am glad to share the essentials so far, at any time.
I believe that everyone who has improved significantly has done so through a multi-disciplinary approach. I do not believe that there is one single medication or supplement or routine or therapy that works on its own. However: the ONE element that is common to everyone who has improved significantly, is that they have achieved a regime of exercise at the right intensity. Not too vigorous and not too gentle; and not “too little time dedicated to it”. Some people are doing this by accident, and think that some medication they are taking or some other treatment, has “cured them”. Everyone who makes this claim, if you enquire further from them, you will find that they are doing nature walks or something else that accidentally is the right intensity of exercise for them.
Once you have discovered the right intensity, you can pretty much do as much as you have time for, and the more you do, the faster you will improve. In fact the right intensity could be “the intensity at which you can keep going indefinitely without suffering post-exertion malaise”. If you are in a bad way, this level will be very low. I think using a heart rate monitor and keeping to between 50% and 65% of the theoretical maximum for your age group, is about right. 65% intensity is believed to be “fat burning”. 80% plus, is where you risk going anaerobic, and I believe that this guarantees post-exertion malaise – increased muscle pain and tension that lasts weeks. I believe that this is because the toxic by-products of anaerobic energy production are not being cleared, and are lingering in the fascia and making its “lubricant” (called “ground substance”) stickier.
But exercise is needed to keep the fascia in movement and give it a chance to unstick and clear up. So avoiding exercise, as some people do because they associate it with increased pain and tension, only makes the condition worse. The more unfit you become, the more likely it becomes that a certain level of exertion will cause anaerobic energy production to kick in. For example, just going shopping.
However, I believe that the more things you do as well as “the right intensity of exercise”, the faster you will improve. In my case, these things are:
1) Low carb diet – I believe that burning carbs for energy produces more toxic by-products than burning fat for energy does. One of the secrets of low-carb diets for weight loss, is that it forces the body to switch to burning fat for energy. Many people with stubborn metabolisms, who gain weight easily, suffer from some kind of malfunction where the body refuses to burn fat, but puts it all into storage, burning only carbs for energy and then screaming out for more (with hunger cravings) when it has run out. Lucky people who have no trouble with their weight, have a metabolism that switches quickly to burning fat when carbs have run out, or burn fat consistently along with the carbs, all the time. I certainly had a weight problem which has been helped along with the FM, by going low-carb.
2) High levels of magnesium supplementation. It is common knowledge that magnesium is good for FM, but few people try taking anywhere near enough of it. “Enough”, for someone with FM, is “several times RDA”. Use several different forms of it (not Magnesium Oxide or Magnesium Sulphate, but some of the others – read labels) and also use Magnesium “oil” sprayed on the skin and rubbed in in the painful areas. The same goes for Malic Acid – take lots of it, not the pitiful low amounts in most supplements.
3) Hair Tissue Mineral Analysis, and supplementation and de-toxing accordingly. Calcium is always elevated in FM, and one of the ways to work out when you are finally taking enough Magnesium, is that Calcium finally comes down to normal levels. Your Magnesium results may end up “too high” (they will have been too low to start with) but there is mostly no reason to worry about this. Also supplement other elements that show up as too low, and use the right de-toxing for toxic elements that are present. In my case, I had far too much Cadmium, but everyone is different. Experts in HTMA say that EVERYONE with FM has a problem toxic element, which suggests that this is part of the initial reason we got the condition.
4) Careful stretching in a spa pool. The problem with “stretching programs” when you have FM, is that you are likely to injure yourself, and the positions you have to get into for many of them are straining many other muscles and causing post-exertion malaise! So the solution is to support the body in water as you do stretches, and if it is hot water, the warmth temporarily makes the fascia more supple. The problem with “warming up the body with exercise” rather than passively, is that this level of exercise is too much! However, body heat itself is bad (I am not sure why) and with FM, the body often overheats and then takes a long time to cool down. So after my spa routine, I plunge into the swimming pool (I use the spa at a swimming pool complex) to get my body temperature down. I continue doing gentle relaxing movements for up to half an hour, in the cooler water.
AFTER you know you have been getting improvement from the above for a few months, I recommend: i) finding a good Qi Gong massage therapist who understands FM. I believe this is better than “trigger point therapy”. There are also “myofascial release techniques” that are helpful. But bear in mind that until you are de-toxing, rehydrating and mobilising the fascia successfully, massage and other hand-on therapies are far too painful and results don’t last. ii) taking up Feldenkrais routines, both one-on-one with a practitioner and in a class or following online guides. Feldenkrais re-trains the muscle control neural pathways that have been rendered dysfunctional by the years of unresponsiveness in the muscles with stuck fascia. iii) – when you are really, really good, get Robert Schleip’s book, “Fascial Fitness”, and start trying out the routines in it. DON’T do these too vigorously too early, or you will injure yourself! There are plenty I still won’t try.
Final advice: I think the longer you have had FM, the longer the improvement will take. I had it 25 years, and I have been improving using the above approach, for 3 years. I am 52 now, and far better (pain, agility, function) than when I was 30. I think I am around 80% better relative to where I was 4 years ago (I was at my worst, struggling to stand up from a chair or climb one flight of stairs, because of the fiery pain in my knees and quads; and I was seriously obese). I am still improving, and have mental concepts of what it would be like to be “100% better”. I believe I will know when I have got there. I want to be able to sustain a jog without collapsing, and I want to be able to sit on my heels. Gaining the ability to squat for the first time since around 1992, was a recent milestone.
Phil, very interested if you have any links. Myofascia has been an issue for a while. I have had trigger point injections for years, useful but now I think a band aid approach. Mal
I think Devin Starlanyl’s book “Healing through Trigger Point Therapy: A Guide to Fibromyalgia, Myofascial Pain and Dysfunction” has a lot of very useful information in it. I posted a long review on Amazon a few months ago:
This excerpt is highly relevant to what you are saying:
“…Starlanyl’s book is an exhaustive guide to identifying and working out some kind of order of approach to treatment of these numerous contraction nodules / “trigger points”. It does not, unfortunately, dwell very much on the angle that the underlying condition responsible for the formation of the contraction nodules / “trigger points” could be perennial, and hence as fast as they are treated, by whatever means (acupressure, needling, cortisone injection, etc) they can simply recur. In my own long experience, experimentation with self-help / self-treatment, and eventual successful multi-disciplinary rehabilitation (not a “cure”, but regaining many lost functions), I regard it as very important to have de-toxed as much as possible, dieted (paleo, low carb), and got plenty of the right kind and intensity of exercise and “movements”. Supplementing intelligently with the aid of Hair Mineral Analysis tests is essential for detoxing and achieving the right mineral balance – elevated calcium and depleted magnesium is an ever-present phenomenon with these conditions, but many other elements go in and out of balance as one is self-treating. I suspect that getting these things right, allows the contraction nodules / “trigger points” to release in response to therapy of many kinds including basic massage and stretching. The body becomes more and more responsive to hands-on therapies and less and less prone to relapse.
Every massage therapist, physiotherapist, etc are really quite used to contraction nodules / “trigger points”, they are probably the lumps and bumps in muscles that are routinely treated, successfully in myriads of cases day after day. It is people with MPS and FM who are the “hard cases”, with dozens of spots all over their bodies, that do not respond like normal people’s muscle tissue does to basic therapy. Practitioners may find that “Trigger Point Therapy” such as acupressure, needling, cortisone injection, etc may “work” but only temporarily. And in my experience, acupressure was no more effective than massage (including many different types of massage) back when I was in the full grip of FM, and still doing all the wrong things that contribute to the myofascia stickiness, formation of contraction nodules, etc…”
You might like to read the whole review. I am also going to respond further to the question from Karen just above.
I’ve been reading a bit about diets low in oxalic acid for reducing fibromyalgia pain.
Has anyone had any experience with this?
Another vital insight I picked up recently was from Robert Schleip, who is probably the most prolific medical writer on the fascia. He discussed the way that different types of exertion require fascia function (particularly its elasticity and freedom) to a greater or lesser extent; and he used cycling as an example of an activity that does NOT require much fascia function relative to other types of activity! Which fits very well, my observation in my own case, that cycling is the one activity at which I seem to be least limited by my condition.
I hypothesise that blood (and lymph) vessel constriction is increased as soon as myofascia that is “stuck”, is under a physical demand to move and slide to accommodate the posture or movement, but is unable to do so.
Schleip and his colleagues unfortunately do not yet seem to have paid any attention to the existence of conditions in which the entire body’s myofascia is clinically dysfunctional. They certainly emphasise the importance of a well-functioning fascia, but to the extent that mostly-healthy people might have differing levels of functionality. I believe most people with FM, have succumbed to a “vicious circle” of dysfunction in the myofascia. I don’t think Schleip and his colleagues have yet recognised this possibility, or that it is the explanation for a widespread chronic incurable condition. I have been attempting to contact them but every attempt has failed due to email or online contact systems behaving perversely (inexplicable blocking, rejecting, etc).
IMO, the tests for OI are unnecessary. If one answers ‘yes’ to most of these questions, I’m sure that it’s more than enough to know that you have some cardiovascular issues. Tests are too imperfect, because we don’t know nearly enough about ANS to be able to tell from the test results if someone has dysautonomia or not. But we know more than enough to be able to say it with reasonable certainty going by symptoms. Why? Currently most doctors only recognise POTS and OH. What if I answered ‘yes’ to all these questions, but my heart rate does not increase >30bpm? I’m pretty sure there could be mechanisms which prevent increase in HR in some people, e.g. overactive vagus nerve, etc.. My point is, symptoms are the best indicator and will allways be.
I agree with you. POTS is a kind of a moving target. There are people whose heart rate does not go up immediately upon standing – it takes a awhile. There are also people who pass one tilt table test OK but then if its given again shortly afterwards fail it. Some people who pass the test later in the day fail it early in the day (or the other way around.). Some people with ME/CFS fail after exercise but not otherwise. There’s nothing magical about the 30 bpm number either. At some point they just had to pick something.
Plus if its not the heart rate it could be blood pressure or ventilation…
I’ve been waiting to see an article like this for a long time. I have always felt there was a connection between my Fibro pain and my POTS/POH and my ME/CFS . Seems like a vicious circle, standing aggravates all of my symptoms. Simple tasks like going to the store can put me in bed for a few days. I have said for years I felt like the pots aggravated Miami CFS and FM pain. I do hope they can find a resolution to this, many of us would get our lives back
When a person has POTS, there isn’t much question. And 30 beats a minute over lying to standing is very common in our POTS world. When a person hikes from 65 lying to 165 standing – now that’s tachycardia and there is no denying POTS. Then comes the issues with regulation and fainting to get you down and allow your heart to slow itself down. It’s on overdrive trying to get blood to your heart and brain. And getting more horizontal and not vertical improves blood flow and helps for it not to have to pump against gravity. Why people try to stop the fast heart rate, when it’s trying to “save” you — just doesn’t make sense. We stand and fidget, allowing our leg muscles to help in the blood flow pumping problem. We may fidget sitting – same compensation on our part – even though we may not realize why we are doing it.
They know that everyone’s heart rate increases upon standing – but how fast does it recover and/or does it continue to climb.
That being said – it’s true – there are times when a once pretty severe POTS person will pass a 10 minute tilt test. But, usually, by the 45 minute mark – it will show up again. I think only an electrocardiologist is the one that does the extended test. (And it was very important in my case. It told us a lot.) And by the time the test was over – it’s good I was strapped to that table because my legs went water and I was hanging there. Not a complete pass out – but close to it.
Then to check subset types – you have catecholamines tested – both lying and standing. If your NE levels go above 600 standing – they check you for adrenal tumors. If those aren’t there – you get a subset type of HYPERPOTS. So you are pretty much always in a fight or flight mode (severe anxious feelings and as one of my friends described – being locked in a room with a hungry lion) when you are standing. And you have tachycardia creating heart pains. Feelings of near faints, room spinning, brain fog and usually naseau goes along with it. Some have migraines and blurred vision. And this all leads to chronic tiredness. Whether this is CFS – I’m not sure. But we do have fatigue. It’s like we run a marathon from the simple act of standing up.
Then, let us get too hot and over vasodilation – creating more blood pooling – creating more naseau as the blood isnt in the core. Dizziness from not having enough blood to our head. Weakness, brain fog. Think about a shower — now that will get you if you get the water too hot. Can’t stand there long enough to enjoy the shower. Try to wash your hair and arms overhead causes more issues with POTS. Most of us try our best not to put our arms overhead. So, no matter our age – be it 8 or 88 – a shower chair is our friend. Then we are wiped out from the whole adventure.
I understand people wanting to fit in a spot. And I understand how we all grasp for an explanation and a DX. But if you have POTS – you will know it and there will be little question as to whether you fit in this catagory. I wish this on NO one.
We can’t regulate our body temperature usually, we can’t adjust our equilibrium, have issues with pressure changes. And we have circulation and full body dysfunction. This is a sort of electrical system problem with our body. We have no energy as our circuitry is broken.
This is just about POTS…..I can get on a soapbox about the autoimmune system and inflammation too and how that’s all connected. Mast cell syndrome, Ehlers Danlos and POTS – the trilogy. And then there is the pain. Be it Ehlers Danlos or FMS. Where does one leave off and the the start – for some of us with both things?
POTS is based on hikes in heart rate, not blood pressure changes. And of course, having all the symptoms that go along with it. A good doc, will rule out all other possible things before you get the POTS label. But……they still don’t know the why…..
But only one soapbox today……
Would the CellTrend test identify adrenergic antibodies that cause this phenomenon?
And might IVIG or Rituximab help?