(Darden has been working on her fibromyalgia/ME/CFS for years and has made substantial progress. In this post she outlines what’s helped.
Alternative medicine practices have been most helpful for Darden
Dr. Teitelbaum recently asserted that his patients receive the most help from alternative medical practices. It’s interesting, in that vein, that all the things that have significantly benefited Darden come from the alternative medical field, few are paid for by insurance companies, and several involve adjustments we can all make.
At the end we present a poll asking what your experiences with Darden’s suggestions are. Please note that fibromyalgia and chronic fatigue syndrome are complex disorders that usually benefit from multidimensional approaches to treatment; i.e. single treatments will probably most like score at their best in the moderately beneficial levels – it’s the combination of treatments that’s the key.
Please note as well that Darden is a patient not a doctor who is relaying her experience. Check with your doctor before making changes to your treatment protocols)
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I am weary of reading about studies on the cause of fibromyalgia pain. Theories about altered pain perception, disordered sleep and immune dysregulation, etc might be interesting to a medical scientist but they are not particularly helpful for a person suffering from fibromyalgia.
Darden Burns has been working on her fibromyalgia/ME/CFS for over ten years
What is needed is a list of strategies that are helpful for patients keeping in mind that each person is unique and what might help one person may not help another. There are no absolutes when it comes to health and this is particular true of complex conditions such as fibromyalgia and chronic fatigue syndrome.
My suggestions are based on my personal experience of living with fibromyalgia pain for twelve years and ultimately finding treatments that resulted in significant reversal of my symptoms, communicating with others from my blog “Fibro Friends” for the past seven years, and sharing information with other patients I met at a fibromyalgia clinic where I spent three months.
1. Rest & Pacing
Most fibromyalgia patients report improvement from symptoms from resting and not “over doing” it physically. This is easier said than done because the threshold of activities that one can “get away with” varies from day to day and set backs occur after the fact. Nonetheless learning to pace one’s activities and adhering to a schedule of activity interspersed with rest is a good strategy. I personally adhere to a strict bedtime and meal schedule and take a short nap every afternoon after lunch.
2. Avoid Drugs
Darden believes impaired detoxification pathways mean avoiding drugs is the best option
Impaired detoxification is common in persons with fibromyalgia and avoidance of stimulants, depressants, pharmaceutical drugs and toxic chemicals can make a big difference in feeling better. This includes alcohol, caffeine, sugar, pain relievers and additives in processed food. Unfortunately many physicians prescribe drugs for pain, depression and sleep, which become less effective with time and in the long run make a patient worse. Particularly dangerous are the drugs Lyrica and Neurotin, which cause cognitive impairments and have severe withdrawal symptoms.
3. Treat Small Intestine Bacterial Overgrowth (SIBO)
Many Persons with fibromyalgia have gastrointestinal issues or Irritable Bowel Syndrome caused by an overgrowth of bacteria in the small intestine. SIBO creates a condition of toxemia that overwhelms the liver’s detoxification capacity and leads to nutritional deficiencies and is a major cause of fibromyalgia pain. It is diagnosed with a breath test that measures hydrogen and methane gas and is treated with specific antibiotics, diet and prokenetic drugs to stimulate gut motility. For more information on this disorder click here and read my post .
4. Gentle Physical Therapies
Traditional deep tissue massage is often too strong for fibromyalgia patients but more gentle forms of physical therapy can be helpful. I recommend BowenWork and Feldenkrais training. Both therapies are very gentle and remarkably effective methods of relieving pain and improving physical function. Bowen Work stimulates healing through subtle moves that release tension in specific areas of the body and Feldenkrais addresses patterns of movement and posture that can cause pain. For more information and to locate a practitioner go to: usbr@bowtech.com and www.feldenkrais.com.
5. Hydrotherapy
Alternating warm and cold showers has been an effective pain reliever for Darden
Warm showers finishing or alternating with brief cold showers can take the edge of fibromyalgia muscle pain and help with circulation. When I was sick with fibro I took 4-5 showers a day and when I had a bad night I would get up in the middle of the night and take an additional shower. It was especially helpful for me take a shower before bedtime, a practice I still maintain. Whole body cryotherapy in a cryosauna is also very effective at relieving symptoms. I do not recommend hot baths and saunas as they can aggravate symptoms.
6. Chiropractic Adjustments
Many fibromyalgia patients benefit from regular chiropractic adjustments that provide some relief from muscle and nerve pain.
7. Low Histamine Diet
Studies show that many people with fibromyalgia have problems with mast cell activation and are particularly sensitive to histamine. Avoiding foods with high levels of histamine can make a big difference and prevent fibro flares as well as migraine headaches. These foods include alcohol, black tea, fermented foods, cured and aged meats and cheeses, tomatoes, pineapples and citrus fruit.
8. Supplements
Darden found only three supplements helped her
The supplement industry is rife with claims of various supplements for Fibromyalgia Syndrome. There are only three supplements that I know of that are truly beneficial for fibromaylgia patients. They are magnesium, which helps with constipation and tense muscles, malic acid found in apple cider vinegar, which can help reduce small intestinal bacterial overgrowth, and ginger root, which helps digestion and is also a potent antihistamine that can help sleep.
9. Grounding
Lying on the ground outside or on a basement floor that lies directly above the ground can help with severe episodes of pain or “fibro flares”. The contact with the electromagnetic force emanating from the ground has a calming effect. I do not recommend “Earthing” pads or products, which claim to have the same effect but can become agitating if used long term.
10. Exercise
Very mild exercise has helped
Exercise is a tricky and sometimes impossible activity for persons with fibromyalgia depending on the severity of the condition. Overdoing it can result in a flare-up of symptoms and compound pain and exhaustion so one needs to try to stay withing one’s threshold of tolerance. Stretching is particularly bad for the adhersions that build up in the connective tissues in fibromyalgia however mild exercise and movement such as walking, Tai Chi or QiGong well within the limits of one’s capacity for exertion can be beneficial. Wearing compresion garments while exercising may be helpful. I also highly recommend The Miracle Ball Method, a program of “unexercises” developed by Elaine Petrone to heal chronic pain. www.elainepetrone.com
10. Oral Systemic Balance
Many persons with fibromyalgia have TMJ symptoms and breathing difficulties. Specially designed oral appliances fabricated and adjusted by dentists can improve breathing, restore balance to the nervous system, improve posture and relieve TMJ and body pain. The therapy is very expensive and time consuming however I believe that it addresses a key source of stress for those suffering from both Chronic Fatigue and Fibromyalgia Syndromes. For more information go here and read my post .
You may want to add a “No Answer” or “Not Tried” choice for some or all of these questions. As it is, if you make a mistake and click on a response, there is no way to delete the response to leave the item blank.
Did it – thanks.
Other choices not offered in the survey are: “worse”, and “much worse” — descriptions that accurately reflect my response to some of the strategies listed. In these cases, I answered “not very much” which implies some improvement: however, significant deterioration (sometimes lasting for months) was the reality for me.
Gosh I seem to need to stretch if I don’t do it for awhile. Interesting about grounding. It’s controversial but so easy to try why not? I read a small European study today that showed a mostly raw vegan diet helped some. Also this article re memantine. Thanks for your suggestions Darden.
http://www.emaxhealth.com/12410/memantine-drug-shows-promise-fibromyalgia
Stretching definitely helps me – if I do it moderately – if I do it too much I run into problems but moderate stretching is definitely a plus
Some of the suggestions are more about beliefs (lying on the ground) than good science. Mast cell activation and histamine release? I don’t think that’s proven for fibro patients as a whole.
Some drugs, like alcohol, marijuana, opioids and in combination are ancient and effective for painful states like fibromyalgia (at least 30 percent of fibro patients use opioids for pain with good response).
I’m a little disappointed at the rigor of this article. Yes, rest and the right exercise helps, yes some medications help (trial and error of many is warranted). A lot of the other info lies within the placebo/belief realm at this time.
I agree with you, Shakota. I also read Dr. Teitelbaum’s book and thought he was full of crap. You can summarize his book by saying “do a million medical tests, find everything causes fibro, and then use a lot of no- science supplements to cure it”. I can’t believe people buy it.
finally someone has said what I believe about this doctor!
Check out a post we did on Teitelbaum and you’ll find people who got a relief using his protocols. Others did not….
I know 2 people who worked directly with Teitelbaum, and received no benefit from his approach, and spent thousands of dollars on his so- called treatments… a shame.
It is – but it’s not an uncommon occurrence even with good doctors. I’ve spent thousands of dollars to no effect with very good doctors as well – doctors who have done very well with other ME/CFS patients. It’s a toughie!
I have read Dr. Teitelbaum’s book and followed many of his suggestions. Several of his suggestions have helped me MUCH MORE than any other doctor or treatment plan. Those that did not work I simply discarded. I have had CFS and Fibro for more than 12 years so have tried a lot of different ideas. I really do not understand the negativity toward Dr. Teitelbaum. Much of this negativity comes from people who have not given his ideas and suggestions a fair try. Many are angry that he makes a profit, but show me one doctor that does not make a profit!
Most alternative therapies are indeed unproven…it’s an eclectic list for sure.
I’m not sure that promoting pseudo-science helps the cause as there’s no way to distinguish it from placebo, though addressed in the right context it at least provides awareness of what CFS/ME patients are resorting to… for what its worth. (i.e. does lying on the ground help because the act of being prone causes physiological changes, or is there some electromagnetic connection, or is it neither or something else?)
But posts like these highlight the dilemma that this blog faces… is this to be an evidence based blog? An unbiased aggregator of everything that’s going in the CFS/ME world? What sort of curatorial responsibility is required or implied? And how does one sort the wheat from the chaff in terms of a newsworthy post?
On a side note, there’s a difference between ‘not very helpful’ and ‘not helpful/didn’t work’, which might help the poll’s clarity.
It’s difficult to have evidence based treatments for pseudo science defined conditions such as Fibromyalgia and “CFS”. Until there is some accepted proof as to what these conditions are it will be impossible to provide “evidence-based” treatments.
For many, avoiding un-needed toxic drugs is a step in the right direction.
I think by ‘evidence based’ I mean that there should be some relatively solid scientific studies or theories that should support the treatment, even if they haven’t been applied to CFS/ME yet. If we agree that CFS/ME is a medical condition, then it makes sense that we should be looking for rational medical fixes.
Allowing pseudo-scientific remedies to be equally considered with evidence-based ones just muddies the waters and encourages the more gullible/desperate out there to pay for useless treatments… not to mention the wasted time having to debunk them.
Treatment of what? If there is no agreement on what the condition is then how can there possibly be evidence that a treatment is successful?
It is an interesting situation where some vociferously condemn “woo” treatments but at the same time take anti-retrovirals and cancer treatments such as Rituximab when there is little current evidence to support those treatments either.
At this point, extremely toxic drugs from well known pharma companies such as Roche should be given the same skepticism as though from your local snake oil salesman. At least my taxes or insurance premiums don’t typically go into the pockets of my local snake oil salesman.
I am curious as to what evidence-based treatments are out there for “CFS”. According to the CDC, it’s anti-depressants, GET and CBT.
Don’t get me wrong, I’m not saying that because something is untested, that it is woo. I’m just saying that there’s a scientific process for a reason. We come up with an idea for what is wrong and then we test it. If the tests fails, then we alter our hypothesis.
There are many treatments out there that fall into a gray area, and that’s okay for now. But that doesn’t mean we should accept or tacitly promote abject woo just because someone thinks that it works.
In this post, there are several suggestions that fall into the spectrum of woo or pseudoscience, the most egregious being #9 Grounding. It is so obviously junk science that to include it brings the entire post (and the rest of the content on this site) into question. If dowsing for a good electromagnetic spot to ‘ground’ was included, would that help spotlight how ridiculous this is?
Cort does a great a job of trying to walk the tightrope of content management for this site. But as more and more people become readers, it also important to become that much more careful when it comes to what sort of ideas are presented here and to make an even greater effort to contextualize them. For instance, the disclaimer in the beginning of this post is a great start. But it does beg the question, if we need a disclaimer to begin with, then how worthwhile is the post to begin with?
Pacing and ME/CFS and safe exercise. It seems to me they we should be talking heart rate variability maximum heart rate caps (VO2 max or Dr Nancy Kilmas formula). For me walking is a no go and exercising is supline I know others in the same boat that find it hard to keep heart rate under max cap when walking.
On #6, I have used a Chiropractor for years even before FMS but now find that it makes me flare unless it is IMMEDIATELY followed by a massage. Thankfully my doctor’s office has a good LMT but prior to that I was having to drive to a separate location and just pray she didn’t cancel on me, if she did I would flare for a week.
On #8, you should make sure you get Organic Unfiltered Apple Cider Vinegar with “mother”. I use Braggs brand.
I found CranialSacral Therapy 100% effective for my pain levels. It was amazing! I was using it for almost 2 years, but unfortunately my LMT left to have a baby and be a stay at home mom and I have yet to find a suitable replacement. Combined with Acupuncture (immediately prior to the appointment seemed to work best if I could swing it, as my therapist said it allowed her to get in deeper with the CST) it would give me pain relief for almost 10 days
As a note on #2, I have refused all Pharma because of the permanent side effects I have from use of Neurontin (and Topamax) many years ago. It took me 4 tries but I finally found a doctor that isn’t a pill pusher and in fact says it doesn’t help. I use this doctor as a secondary but primarily use a Naturopath as much as I can afford it.
I also had a lot of success with pain reduction using advanced-bio (I think I’ve got the name right) cranial sacral work and am trying to find someone to replace the person who I worked with before I moved away.
It was the one thing I knew would work for me to reduce or eliminate a pain flares and or other painful areas most visits if not all of them.
I had seen a chiropractor for around 20 years pre-illness, and finally stopped when I didn’t think it was still helping. When I went back a few years after becoming ill it was very painful to have done. I think it was largely because I had lost most of my flexibility I had prior to illness.
Maybe it broke up adhesions. Personally I believe a good thing to do if one can stand the pain of it. I would try Rolfing too for that reason if I could.
I feel there are many eastern/ alternative techniques therapies that work even though we don’t yet understand how or why they work yet, and that doesn’t mean it is only the placebo effect.
There is just so much we don’t know about how the universe and or how the body and mind works. When I read a little bit about quantum physics, I realize just how little we do know or understand, and why that means a lot of things are possible and one day will be considered valid. Can anyone imagine how much more advanced medicine will be 100 years from now thanks to science?
Re mast cell activation and histamine – many ME/CFS patients do have a history of intolerances/mast cell activation. The symptoms for mast cell activation are pretty similar….
it may be a sub set of ME/Fibro patients that are helped…
Interesting enough, I have done all these things, one at a time. I have not found one in particular to be any more helpful than another, but I do agree with Cort that it takes all these things to help. I do rely on medications to keep my comorbid disorder pain from interfering with what I need for the FM and for treating my ME/CFS.
I have also found low dose Co-Q10 helpful, but I am on Crestor and statin drugs are known to deplete Co-Q10, so that might be why. (Of note, I cannot tolerate any higher dose than 50mg, so I think everyone’s treatments should be individualistic.)
Low vitamin D and B12 is also important to treat and I think patients should be able to discuss what they use with their doctor. Mine keep an eye on both these levels.
I also take Ubiguinol and generic Align. I find both helpful, so I don’t think I would limit suggestions to only magnesium, malic acid, and ginger root. I personally did not find malic acid helpful, magnesium at anything more than very low dose irritates my already irritable bowel. I cook with ginger and have for years because of gastric erosion and esophageal dystonia. THAT is probably the most helpful for those problems, but I never associated it directly with FM.
Good tips for those of us who are a work in progress.
Seriously, no hot baths….I live for my hot whirlpool tub, it relaxes my muscles and releases tension in both body and mind. As for medications, I must agree about the Lyrica, but other medications are very helpful…trazadone for sleep, nucynta for pain, etc. I personally find any kind of massage very painful, but the self massage of qi qong I find is more gentle because I am applying the pressure.
:)…
You see, if I took a hot bath a day I would be in real trouble. I find them exhausting…obviously different things are going on. I wonder what everybody with FM or ME/CFS could tolerate – what treatments (other than pacing) are successful or helpful for everybody.
I have had all kinds of trouble with showers, warm showers, hot showers, cool showers, standing, sitting, warm baths, hot baths, cool baths … You name it. Even when I have help with bathing. I finally have resorted to using those adult disposable washcloth thingies and with that I can manage to stay reasonably clean if I only do one section at a time. No idea why a water bath is so difficult.
That’s what I do….I’ll bet it has something to do with the autonomic nervous system
It is common for people with fibromyalgia to be sensitive to temperature extremes of hot and cold. The more severe cases like you describe cannot tolerate even mild differences. When I was really sick I vacillated between feeling too hot or too cold and exposure to either aggravated my condition. As I got better I could take warm showers as long as I finished with a quick cold one. This gave me the benefit of warming up my muscles without getting too hot or cold. Whole body cryotherapy where one is exposed to extreme cold temperatures in a cryosauna for only two minutes was also helpful. One gets the benefit of improving circulation and reducing inflammation but is not in the chamber long enough to get chilled. In any case all these hot/cold therapies are palliative at best.
My daily hot baths keep me functioning, and have for many years. A shower is a poor alternative. Also so important for me is a good night’s sleep, tricky when in pain, but possible for me with a small dose of benadryl.
I do find if I make them too hot they exhaust me, so water temperature seems to be important.
I realised after reading something on this site about this, that hot spas do leave me flushed, overheated and prone to tightness. But seeing I take my spas at public swimming bath facilities, I immediately tried starting with the spa, and then going into the main swimming pool, which being a cooler temperature, cools my body down.
Plus I had discovered to keep the exercise gentle, even in the swimming pool. I do wonder whether the mechanism is the same for the body finding heat buildup a problem, and finding over-exertion a problem.
Since changing my approach, I believe that the spas are helpful on net. I do gentle stretches while in them. I also frequently go from the spa to other exercise, like walking, cycling, rowing machine, cross-trainer machine, etc – and then into the swimming pool to cool down. On a really warm day I will even go straight to the beach to cool down in the sea.
Sometimes if I am still feeling too hot after coming out of the swimming pool, I will hang round in the fresh air for a bit while still wet, and/or take a cold shower.
I find this mandatory cool-down really beneficial.
I also find that self massage is helpful and don’t have any adverse effects. I apply pressure to tight muscle bands and “knots”. Because I’m doing it myself I get feedback on exactly the right spots and the amount of pressure and this seems to be effective.
I really like that Darden found mostly a kind of I don’t know how to say it – low ball and safe approach to FM – pacing, bodywork, gut rehabilitation, hydrotherapy, “grounding” – which I think of simply as a kind of meditation. Some of these I think are about slowing the body down….allowing it to reset and heal.
I imagine that’s what the cold showers do. (I cannot tolerate much in the way of showers by the way – particularly hot ones – they exhaust me…)
FM and ME/CFS are heterogeneous disorders. It’s clear that people get real benefit from other supplements. For some people drugs are very helpful. They would have difficulty functioning without them.
I think Darden’s findings indicate that either there’s many ways to skin a cat or there are many different kinds of cats.
I agree. I have often thought that there may be several different disorders called “fibromyalgia”or variations of the condition. I actually wrote a blog post about this called “Fibromyalgia – a Syndrome of Variations”, which was an attempt to describe the variations along with associated treatments. Check out http://fibrofriends.typepad.com/fibro_friends/2012/05/fibromyalgia-variations.html. There are commonalities in all the variations of fibromyalgia and Chronic Fatigue Syndrome. In my opinion these conditions require a number of different therapeutic modalities to facilitate healing, but the particular combination of treatments will be different for each patient since we are all unique.
I know this is a treatment that has been debunked and apparently there’s no science behind it, but has anyone had any success with Guifenisin? There is a fibro meetup in my town and the lady who started it swears by it. I’m tempted to get some non salicylate products and give it a try…..
A specialist I am in contact with, says that it seems to help around 15% of his fibro patients.
Here is a story of someone claiming it is an important part of their cure:
http://www.chinesefootreflexology.com/freedom-from-fibromyalgia/
Holly: What do you feel are the top three things that have made the biggest difference in overcoming fibromyalgia in your life?
Heidi: The Guaifenesin protocol, Qi Gong, and following my true calling.
I am open minded on the Guaifenesin protocol – I used it for years; then stopped it for 3 years, and have now started it again. I have definitely experienced improvements in my condition but am not sure what factors have what importance. This is all further confused by my having undiagnosed sleep apnoea as well; it was after getting a CPAP machine 3 years ago that I decided to stop the Guaifenesin as I was getting so much new benefit anyway.
I agree very much with other 2 of the “big three” stated by Heidi in that link: changing career to something you love doing would be my number one recommendation to anyone with fibro if you have not already done so. I am surprised that the Darden Burns Top 10 does not mention this. I also very much agree with Qi Gong massage, particularly if you can find a practitioner who knows about fibromyalgia.
I would also include pacing, and paced exercise – making up in long time spent on it, for the lack of ability to actually sustain a proper workout (in sweat and heart-rate terms).
I think that as many beneficial approaches as possible is more likely to provide significant benefit, than looking for one or two magic bullets. I am doing a lot of things. In another comment above, I mention that I do a spa first (almost daily) with stretches while in the spa, followed by some kind of exercise for a good long time – 1 hour or more – carefully paced at low intensity – followed by a deliberate cool-off with a gentle swimming pool session (and more cooling tactics if necessary).
I have also been taking large doses of Magnesium for years; taking Malic acid on and off; and have done the rounds of numerous manipulative therapists and massage therapists. Deep high-pressure massage tends to not help; I have found a really great Qi Gong practitioner who understands fibro, and have just found another amazing multi-disciplinary massage practitioner who is great with myofascial release techniques and gentle “muscle layer” massage, including with silicone cups. I try to get a massage about every fortnight – I would definitely do it more if I was willing to spend the money. I get a LONG session each time – no 20-minute quickies; the therapist needs time to work through the many inter-connected tensions over your whole body.
I have certainly been there, done that with frequent Chiro and Osteo and other manipulation. Now I just go to a really amazing osteopath around once a year. Fibro sufferers problem is muscular tension and stiffness, manipulation is a waste of time and money until you have really got on top of this. I was very grateful to one particularly scrupulous osteopath who told me when I was being analysed by him for the first time, that I should be spending my treatment budget on massage therapy, not him. He was right.
A year ago I put myself on the Atkins/ketogenic/very-low-carb diet. It possibly helps my overall condition as well; but it is the ONLY thing that allows me to lose weight, which is something I desperately need to do, and keep it off. Coping with fibro is even harder when you are around 120 pounds overweight. My weight loss has hit a floor and I am experimenting desperately to try and find how to get more pounds off. It would be so much easier to cope if one was skinny, I reckon.
Thanks Phil – I’ll try it. Hope you can get some weight off but my highest adult weight was 180 and lowest 118. Can’t say I felt any different at either weight.
I tried the Guaifenisen Protocol for an number of months 8 years ago with no benefits. An interesting article by Mark London that thoroughly researches the use of guaifenesin for fibromyalgia can by found at http://web.mit.edu/london/www/guai.html. According to London’s research guaifenesin acts as a muscle relaxant by depressing transmission of nerve impulses in the central nervous system.
Thanks for that; the original person who told me about Guai for fibro years ago is an amazingly knowledgeable pharmacist – and he said he doubted that St Amand’s hypothesis about the mechanism by which Guai worked was right, but he still believed that Guai was helpful for fibro. He will be really interested by that reference.
It specifically states:
“…Avoiding salicylates and other possible chemicals and substances, taking guaifenesin, and going on Dr. St. Amand’s hypoglycemic (or other healthy) diet, may have a combined effect which could be significant, and which could lead to beneficial effects on fibromyalgia, but in a different way than Dr. St. Amand theorizes…”
It has a lot of other useful insights about Fibro too.
I think on balance I will continue to take Guai and avoid salicylates, as there are several reasons for benefit from this.
I think it is a mistake to lump FM and CFS/ME together as one illness, as is done at the very beginning of this article. It sounds to me like Ms. Burns may have FM, but not CFS/ME. Most people I know with CFS/ME, myself included, are completely exhausted by showering. Many cannot stand long enough to shower, and cannot tolerate any kind of hot water or the hot humid environment of a hot tub, as it causes a great drop in blood pressure and increase in heart rate. Every person I know with CFS/ME who has tried to go of all medications, including those for pain, heart rate, and blood pressure issues, has found the experience to be a disaster. Some ended up hospitalized.
I have been diagnosed with both illnesses. One started about two years before the other. When FM was my primary illness, gentle exercise was very helpful, and I did not need any prescription medications. Now that CFS/ME symptoms are my main problem, I take 12 prescriptions and many days am doing well to to complete my activities of daily living.
When I read CFS case studies, I am thankful I only have fibro.
But how much is there in the “pacing” aspect – can CFS sufferers find ANY pace at which they are improving condition and not self-harming?
I surmise that there is a vicious cycle early on in these conditions, where one is always (through lack of knowledge) either self-harming through overdoing the effort, or ossifying through lack of activity; generally following a burst of overdoing it. One can go down in a vicious spiral in this way, losing condition dramatically all the while. the solution is to reverse this – do NOT let yourself ossify, but pace yourself religiously to avoid the post-exertion malaise effect.
I do wonder whether CFS is fibro “triumphant”. But if it is, luck must have a lot to do with whether you end up going there or not. It can be many years before you get onto all the coping strategies that experienced sufferers like me can let you into in one hit if you find someone like us soon enough. Many people probably start researching too late, and of course are straight-out diagnosed too late.
Leslie the same here. Showers and baths are exhausting, a towel looks like cement blocks to me!
I appreciate others sharing what has and is working for them and hope I can take away something from each person that will help me to feel better.
I have recommended it before but we all forget, if you have been ill for 5 years (or possibly less) get a LIVER ULTRA-SOUND!! Regardless of liver labs! No head in the sand. Especially if there is MICRO-HEMATORIA in the urine!
If there is an issue, diet and herbals are very beneficial. RP
Richard,
What does a liver ultrasound reveal?
I’ve seen a Naturopath that has worked on my liver (among other things) for 10 years. (Sick for 19) Unfortunately, I’m only sicker & poorer.
This list is quite biased. There should be a catagory asking if the treatment did you any harm. I think chiropractic worsened my condition in the long term because I’m one of the fibro people with very stretchy ligaments. Also, I do *very* well on certain drugs, notably tizanadine (ZanaFlex). Avoiding drugs for six years was six years of pain I didn’t have to have. Also, with the single exception of Feldenkrais bodywork (which I praise to the skies), not a single alternative med treatment helped me and all left me poorer since most cost an arm and a leg. I call that a damage.
This has been enlightening. I will be researching some of the technique or advice you have mentioned. I am the leader of our local Fibromyalgia Support Group so as much info as I can bring to the group is important. Thank you!
P.S. Although I don’t agree with some of the information I feel it’s my responsibility to pass it on and let others decide what is good or not so good for them.
Grounding? Are you kidding me? What hogwash.
We all seem to be different, with no “Magic Pill” that suits everyone. A very hot shower would be a big mistake for me. Heat gives me problems. Cymbalta was originally for my depression (ME/CFS), but we found that it was helpful with my fibro, and if I cut back on it the pain increased. Acupuncture has been of help, but not every acupuncturist gave me the best treatment. The one I am with now has been the best, so when she referred me to the chiropractic clinic that she uses for herself, I gave it a try. The “treatment” put me in major pain, even though I had been very clear about my health issues and sensitivities. I had to go straight to my acupuncturist for relief, which wasn’t sufficient. My message therapist gave me the greatest relief to get me back to my “normal”. Vitamin D has made a big difference. (My M.D. says that everyone in the rainy sections of the Pacific Northwest should be on it.) Pacing has probably been of the most help, although I am still trying to figure out just how much I can do without repercussions. If I can stay away from sugar, it helps a lot. (That’s hard to do.) I stay away from gluten most of the time, which seems to help as well. Having good friends and moral support helps tremendously, and stress will shoot me down fast. Good luck to us all. Do your own research and trust your intuition.
I am finding, as I say in another comment, that heat is beneficial when followed by a deliberate cool-down. It was not beneficial otherwise, with that I am in agreement!
I have also come to love direct sunshine. I used to find it intolerable. Something among the many things I am doing, has changed me in this regard. It is possibly the very low carb diet that correlates with that change. I used to head for the shade or the air-conditioned indoors whenever the sun was out. I detested visiting hot sunny locations, and humid locations. My main holiday trip of choice tended to be to stay with relatives in a notoriously cold city with outings up to the snow line in nearby mountains a main attraction.
But now, I love direct sunshine. I love relaxing in it and feeling the warmth soothe my fibro-pained muscles. Not unlike the initial sensation I have always had in warm water. Lie back, relax, breathe, Ahhhhhhhhhh……..
But yes, overheating tends to linger forever, and result in sleepless nights, unpleasant sweating, and muscle stiffness worse than before. The solution I have discovered, is the deliberate cool-down. You can benefit from the heat, and then forestall the “ongoing overheating” malaise. Plunge into cooler water. I find a normal heated swimming pool good for a cool-down to some extent; the sea or some body of unheated water might be necessary if the swimming pool still keeps you too warm. Cold showers really don’t allow heat to transfer out of you as quickly as actual immersion.
Very sound advice, thank you!
For those who can’t shower, ever tried sitting down (I do) and using lukewarm water?
ps: message was meant for Wendy
Does anyone happen to know if there is a test to measure mast cell activation? I have heard before of this issue being common in ME/CFS and an issue w/ histamine and possibly low DAO enzyme. I LOVE oranges and pain hasn’t gone up since they’ve been in season but I limit it to 1-2/day. To note, I do have hayfever/seasonal allergies (ones associated w/ Spring and Fall) and it used to be severe until I got antigen injections from 5-14 yrs old…then barely needed allergy med. Before that I had sleep apnea and ALMOST had to have my tonsils and adenoids removed but they shrunk w/ treatment thankfully. GI Effects (from Genova Diagnostics) test results should be in later today after over a month or waiting. Woohoo! Hoping if need treatment it shows up here…haven’t done the SIBO test yet b/c cost. Have the kit.
I have been on a low histamine diet for years although I didn’t know it. I basically have adverse reactions to foods with histamine. I knew these reactions were not allergies so its enlightening to finally understand what causes the reactions. Diamine Oxidase or DAO is the enzyme that breaks down histamine in foods. There is only one lab in the United States that tests for low DAO levels – Dunwoody Labs. Several months ago I started taking DAO supplements before meals. It seems to be helpful – less reactive to foods, better sleep and most significant improved gut function. I have been treating SIBO for the past 9 months but reached a plateau in my recovery. Now with the addition of DAO supplements my bowel movements are now normal for the first time in 20 years. It appears that SIBO and histamine intolerance are overlapping conditions and that it is important to treat both. I plan to write my next blog post about this intriguing subject which I think is an important piece of the puzzle for many folks with CFS and FMS.
I got the Histame from Swanson. I was wondering if this is the product you are using. I tried one yesterday just to make sure I was not allergic to is. Seems Ok. They are really expensive to take before everthing we eat. Please let me know which one you use and if you know what the best deal on it is. To add to the misery of CFIDS since 1982 I got sever SIBO 4 years ago. Tried the Xifaxin, but because I use Vicoden once or twice a day, it’s never going to work. Trying to get off the Vicoden. Thought doing the low histamine thing would help in that area. So confusing with all the overlapping crap that we deal with. I also do bone broth(grass fed) daily and eat mostly organic and made from scratch. It’s the little cheats every now and then that hit hard. Following diets is vital, but I need a cook. Just getting too old to keep this up. One step forward and three steps backward. uggggggggggggggggggg
Just to weigh in and say that all of these items can be tracked on your Health Rising FibroMapp. Personalise it so that you can track things and what is and isn’t helping.
some of these techniques may help a little, for real pain relief I need prescription medication. I have the neuropathy in my legs and feet that is very common in fibro and only gabapentin helps. now before you say that is a harmful drug, let me tell you the pain is so bad when I stand or walk any length of time , I get severely nauseated. I do pace myself and never ever push myself. and the one that I so disagree with is laying on the ground. if I layed on the ground/floor in my basement I would be so stiff I would hurt for days. and the hydro therapy I use is a hot bath . never followed by cold. any coldness causes me an instant flare. most of this stuff is pop medicine and has no real value.
For what it’s worth, I’m on Lyrica (pregabalin) and I noticed a big improvement in cognitive function after I started taking it. I’ve asked around, and I think I’m unusual in that respect, but it’s worth repeating in case there are other unusual people like me.
Also, my friend with Fibro (which is not the same as ME/CFS, and I hope people aren’t conflating the two) took Gabapentin in high doses, which completely changed her life.
It’s helpful to have this list of treatments as an option of some things that might be worth investigating, along with hundreds of other treatments which might be worth investigating, but for anyone reading – it’s worth remembering that there are more than a million people with ME/CFS, and this is one person’s experience.
Also, I must confess that the phrase ‘working on her fibromyalgia/MECFS’ got my hackles up a bit – it gives the impression that others aren’t recovered because they aren’t ‘working’ hard enough. I know that you know this, but just wanted to reiterate it for the sake of those others reading – some have been trying for decades to get better, and have tried everything going, and have still not recovered. IT IS NOT YOUR FAULT. Chemo doesn’t cure every person’s cancer. Just because something works for one person, doesn’t mean it will work for everyone.
I like your comments.
Of course we are all working hard to manage our conditions. The suffering in fibromyalgia is severe and there are no easy solutions for getting better. The best we can do is support each other and share things that have been helpful remembering that we are all unique.
Well, I certainly have learned some new words by reading these comments. Thank you!! Now, I have some new things to try.
I am so relieved to hear others talk about dreading to take a shower, I feel so unhygenic now that I don’t shower everyday but I just don’t have the energy.
Taking a shower is exhausting.
🙂 It took me a couple of years to figure this one out. I couldn’t take a shower before work one day and discovered I did so much better – that was it for me.
The thing that helped me and eventually got rid of my FM was DHEA, actually prescribed by a Dr. in Hattiesburg, MS. It actually worked! and in 3 days my pain was gone!!!
This is true. I was in severe pain and thought I cd not live with that pain. I hope this post will help someone else. sd
That’s really something. It just shows that some things work really well for some people….What a mystery these disorders are…When we open our recovery stories section please add your story…
I did a total Teitalbull back in the early 90’s, wasted $2000 on quackery tests, then costly special vitamins no gain. There are four kinds of fibromyalgia according to a Holland researcher who has studied us since I believe 1991. Not all medications are bad for us. Yes vitamins are good if we get enough because some leaky guts don’t absorb right. You have to get the right kind of exercise for you and take it slow and easy
Magnets, yeah right, what a waste. Acupuncture, with tens electrodes work great to stop those nerve pain paths. Bowen massage worked great and still works for me. Hot soaks, common sense, love it with tons of the peppermint Epsom Salts from WalMart supposed to be for feet but I love it all over my body. I don’t eat white food, like sugar, flour etc. But I love my lite Folgers Coffee. We are all in different stages and different types of the disease.I have fought the good fight since 1991 after a bout with cancer. What is working for me, maybe hooey to you and hooey to me in 6 months.
Rest and pacing should be two separate questions.
I rest and take naps that are very helpful. I often take naps whether I want to or not, I am just too tired to stay awake.
Pacing is not always an option and is a different activity than rest. And, I do not pace as much as might be helpful. My body does not force me to pace as it does to rest.
I tell you, it’s really hard dealing with this. When I was working I was able to afford more treatments, but it was so hectic. I got a little bit better, but eventually got so many other medical conditions that I had to go on disability. Now, I have too many conditions to treat in addition to the ME/CFS and fibro, that I can barely keep up. I have many meds that I have to take for kidney and breathing and other problems. And, I also have hypersomnia that keeps me extremely tired all the time. I just don’t do much anymore, and have to take days off from everything.
I cannot emotionally and mentally afford the ups and downs and roundabouts that believing or trying to give such things a chance puts me through. It is enough to try to pace and to prioritise getting myself to the toilet and putting a microwave dinner in the oven and then managing to go back and take it out sometime before it becomes stone cold. I frankly get tired of reading articles by middle class or upper middle class people who have income to spend on various treatments and doctors, and spouses to support them through good paying jobs, etc. Some of us are living in the desert of the UK trying to survive with government benefits and the NHS which will do no testing beyond a few blood tests after we are diagnosed with Fibro or ME/CFS. I am sure that most of you have seen the plethora of media over the latest pseudo-scientific article in the Lancet of all places. This is going to hit so many of us very hard. I cannot get any doctor to even say the word ME or ME/CFS. They act like it does not exist. Even when I manage to get sent to a specialist such as Neurologist or Pain Clinic, I get nowhere. In the case of the Neurologist, when I explained symptoms such as paralysis or semi-paralysis for hours at a time, jerking and shaking episodes that are so jarring I am left with a headache for hours, and an inability to stand or sit upright for an hour or more, I am told that they “don’t know how to help me” and that I should stop taking Pregabalin, the drug that saved me from suicide by allowing me to sleep and have some hours of respite from the pain most days. They offer me no alternative for these symptoms. In the case of the Pain Clinic, the Pregabalin was their solution, and then 6 sessions with a gentle acupuncture therapy which did no good at all as it was spread out every 2 weeks one session. What a waste of government money. Anyway, I live alone and have 3 hours of care a week. I feel so frustrated by all these types of articles when I cannot even brush my teeth or comb my hair for days at a time, and often am left in pain needing to go to the toilet but cannot move, or not able to bathe more than once a week because of the post exertional malaise. The hot water really helps my muscles, but the exertion of taking the bath makes me worse within 24-36 hours and that worsening of ALL my symptoms lasts for at least 3 days. Sometimes it is cumulative if I have also done other things that come up which cannot be avoided. I know that you can’t fix this. BUT I would like more acknowledgement that people are living such an extremely deprived life and cannot get access to most of these things; and that many are actually so frustrating in their effects as trying them, perhaps with a cost, even lets say £10 extra in a month, means we get hopes up, have money and expectations spent despite our natural desire to be balanced; and then once again the despair when they fail. Just about everyone we encounter fills our minds with ideas about how we can make ourselves well or at least better. But they don’t give us their time, attention, and money to make that a possibility. I appreciate positive suggestions but at this point, they are like thorns that stick to me when I am trying to walk from point A to point B without falling. Hope you will forgive my analogy. Just very down this week with the latest onslaught of media hype in favour of the psychiatric lobby.
I want to add that previous to getting Fibromyalgia, and possible ME (undiagnosed) I was working and/or married and had some money to spend on therapy for migraines, and even just after I was diagnosed with Fibromyalgia. At that time, I saw a very good Chinese doctor who did proper Chinese acupuncture twice a week on me, as well as Chinese herb medicines and Thai massage. I was not in the run down and severely disabled condition I am now, 12 years later. The massage was terribly painful so that I would make quite loud noises sometimes during the treatment. The acupuncture was mainly uncomfortable. Both of these worked well, although they did not cure me. My functionality improved quite a lot and I had periods where I was able to at least get back to about 50% of my lost health. However, this is no longer possible. But also even before that, I got regular massages from a very good therapist, which benefited me by enabling me to do self massage sometimes now when the pain is very bad. It does make a big difference. I use a heating pad also which can alleviate some types of pain for at least an hour. At the stage I’m in, getting a few hours of lessened pain on the worst days feels like heaven. I was told by a Neurologist that he thought Pregabalin was causing my cognitive and motor function problems. I pointed out that they were the same symptoms I had before going on it, and that it had helped me to sleep through at least 6 hrs a night. I see no point in blaming it for something that predated its use. I used to be a professional classical singer. I find that when I am able to, sometimes singing provides relief for a time. It produces a total body memory of healthy function, plus those happy chemicals start to flow and happy memories with it of what it was like to feel immersed in sound made by my own healthy body. Unfortunately I now live in a block of flats where I have received noise complaints in writing and in a rather intimidating way from the management because I sang in the daytime or evening full voice for 5 or 10 minutes maybe once a week. Well, yet another roadblock to getting some relief. I am on hoping for a bath lift chair to be provided for me soon, as warm baths really do help when I don’t have to do much else. It seems that I now qualify for some help from Social Services, after several years of being told I am not sick enough.
What a shame you can’t sing! I was yodeling a bit and found it quite relaxing..I hope you can find a better place where you can sing..If I was there I probably would have sent a letter to management thanking you for singing…
I also do my very best to buy high quality organic fruit and ready made products using organic ingredients and no additives or preservatives. I have to eat frozen dinners made by a company that caters to the elderly, but they are generally pretty healthy. I avoid chemicals as much as possible, and take multi-vitamins, D3, and electrolytes added to 1 liter of my filtered drinking water a day. This has helped the throat spasms that were happening, it seems. I found a product which has no additives, sugar, or anything else and is easy to use. I buy it online rather than the expensive sports drinks, etc. which have stuff I do not want to consume. I am going to go over this list again and see if I think any of the other ideas are worth a try. It’s a rough ride for all of us.
Because of all the layers of illness that encompass the disease and over 32 years of it and now at age 71 I am just to ill to do all the stuff Darden has done. I am doing some of it, but just to worn down. If I could have someone come and live with me and guide me through all of this it would be doable, however, unless a person has the wealth and ability to find someone to come and do this, I don’t see how someone like myself can follow through.
I will keep this valuable information close to me and do what I can do on my own.
I know the magic bullet does not exist and it’s just doing the work.
Maybe exercise is a better way to help a fibromyalgia patient because it makes individuals be more movable which I believe can relieve muscle soreness to a certain degree. But, how about improve one’s immunity? Can it be helpful to relieve the soreness? Maybe it should be given a try. If anyone is interested in it, check out the Immune Repertoire Sequencing Services from CD Genomics. Hope it will be helpful.
What can low income people who, don’t have means to the different types of foods and therapy! My sister suffers from Fybromyalgia , She is always tired and and in pain. I need help to help her get better. What direction can she go in that will get her to the road to feeling better?
Kindest Regards
Concerned Big Brother!