Exercise is highly recommended as an adjunct therapy for fibromyalgia. We’re not talking about pounding the pavement, however.
Intense aerobic exercise is not recommended for fibromyalgia
A 2010 review of exercise studies found that ‘slight to moderate’ intensity aerobic exercise sessions done two to three times a week worked best, and that appropriate levels of exercise result in improved fitness but only modestly improved pain. Another review that warned not to overdo exercise stated that “the latest findings…. indicate the fundamental importance of assigning workloads (i.e. exercise) that do not exacerbate post-exercise pain.”
Something is preventing many FM patients and almost all ME/CFS patients from participating in intense exercise. Four studies suggest that that “something” in ME/CFS involves a damaged aerobic energy production process.
Health Rising hasn’t covered exercise in FM before, but guess what? Some FM studies suggest the aerobic energy production system doesn’t appear to be doing well at all.
Déjà vu All Over Again? The Fibromyalgia Exercise Studies
Several FM studies have found problems with exercise. A 2013 study found reduced oxygen consumption during a submaximal and a maximal exercise test. A 2011 finding of reduced oxygen consumption (VO2 max), reduced heart rates during exercise, and delayed heart rate recovery suggested a familiar pattern of autonomic nervous dysfunction (increased sympathetic nervous system activation/decreased parasympathetic nervous system activity) was responsible.
The authors pointed out that 57% of FM patients met the criteria for chronotropic incompetence (an inability to get the heart up to speed during exercise). SImilar findings have shown up in ME/CFS.
Defying expectations, the stress response is on at rest in FM (and ME/CFS) and then poops out when stressful situations occur
The authors also noted that FM patients demonstrate ‘sustained sympathetic hyperactivity’ during rest (the stress response is on during rest), and a hypoactive or poor response to stress. This suggests that the stress response in FM is “on” when it should be “off”(at rest), and then tends to poop out when faced with work (such as intense exercise). A similar pattern has shown up in ME/CFS and interestingly, lupus.
A 2002 study finding of reduced oxygen uptake (VO2 max), ventilatory anaerobic threshold, and heart rate during a maximal exercise test in FM again suggested problems with aerobic energy production were present. These authors proposed that dysregulation of the autonomic nervous system (dysautonomia) were responsible. They also noted that resistance training can improve some aspects of autonomic nervous system functioning.
These findings suggest that whatever the differences in their ability to exercise, FM and ME/CFS patients have similar problems with aerobic energy production and autonomic dysfunction.
The Study
Pain severity is associated with muscle strength and peak oxygen uptake in adults with fibromyalgia. Hooten WM, Smith JM, Eldrige JS, Olsen DA, Mauck WD, Moeschler SM. J Pain Res. 2014 May 3;7:237-42. doi: 10.2147/JPR.S61312. eCollection 2014.
These researchers wanted to know if reduced aerobic energy production (low VO2 max) was associated with reduced strength and increased pain in FM. They had their fibromyalgia patients exercise to exhaustion while measuring their oxygen uptake and then did a separate muscle strength test.
It turned out that the FM patients with reduced aerobic energy production were significantly weaker and in more pain than FM patients exhibiting higher levels of aerobic energy production.
Simply being in pain can inhibit muscle recruitment – making you weaker.
The Triad: Energy Production, Strength and Pain
What’s causing this energy production-pain association? Studies have illuminated several possibilities.
- Pain – Simply the presence of pain could be reducing the muscle contraction needed to exercise properly. It turns out that activated pain receptors in the joints tell the motor neurons in the brain not to turn on the muscles. Even the anticipation of pain can reduce the efficiency of motor neuron activity. (An April 2014 study indicating that trigger point injections increased handgrip strength in women with FM and/or myofascial pain syndrome suggested pain may reduce strength.)
- Reduced Muscle Recruitment / Motor Cortex Dysfunction – Some research suggests normal muscle recruitment is not occurring in FM. Because stimulating the same muscle unit, again and again, puts it into a contracted painful state, more and more muscle units need to become activated for exercise to continue. Reduced muscle recruitment, then, could contribute to the painful, contracted feeling FM patients often experience.
- Reduced Blood Flows – Blood flows are critical not just to meet the oxygen demands of exercising tissues but to remove the toxins created during exercise. The reduced capillary density and blood flows found in FM could make it difficult to remove those toxins. At least as early as 2006, researchers suggested that muscle ischemia (low blood flows) both during and after exercise could be causing pain in FM and driving the central sensitization found. Problems with the microcirculation could, therefore, contribute to the aerobic energy problems, pain, and weakness in FM.
The authors argued that the next step is to determine what happens to capillary blood flows during exercise. Given the overlap in both exercise and muscle study results in ME/CFS and FM, those results could apply to ME/CFS.
This study also suggests finding an appropriate exercise regimen could be helpful. FM studies suggest that greater muscle strength is associated with better mental and emotional well-being and reduced oxidative stress.
Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia
An interesting jumble of energy production and muscle problems have shown up in ME/CFS and FM.
Low blood volume – potentially a critical factor in getting blood to the tissues – is acknowledged in ME/CFS but is hardly considered in FM but perhaps should be given more study given the issues shown in this study.
The similar muscle and energy problems in ME/CFS and FM suggest a research collaboration could be helpful.
Increased levels of oxidative stress, mitochondrial problems, muscle fiber issues, increased muscle levels of the toxins pyruvate and lactate, and reduced microcirculation in the muscles have all been found in FM.
Newton’s studies found poor pH handling and increased muscle acidosis in ME/CFS. Reduced muscle ATP production has also been found in ME/CFS. Studies suggest the muscles in both ME/CFS and FM patients suffer from reduced oxygen uptake.
A 2014 study finding normal blood flows but increased muscle and blood glutamate and lactic acid levels in people with chronic widespread muscle pain suggested normal blood flows may not be enough to remove the toxic byproducts produced.
The ME/CFS and FM fields remain stubbornly separate with few studies incorporating both types of patients. The energy production and muscle study results appear to be strikingly similar and findings from either disease could end up informing the other. With neither disorder getting much in the way of federal funding working together might be a good idea.
You know over the years I have tried to do as much as possible whenever I could before I had FM/CFS. I always wondered why I felt so tired and exhausted from just a visit 100 miles away to my mother-in-law’s. Love going but would go to work the next day feeling so tired and needed about a day to re-coup. I also remember I could never jog. Anybody else have this problem? I wonder if this is when it started?? I continued to work for the next 30 years but it was such a struggle unless I did not do much on the weekends. Now I feel like I need a crane to get out of bed and when I do, I walk around in a cloud until about 11 or 11:30 a.m.
BTW I was not overweight back then until I got to my 50’s. I always weighed about 110.
I know I am lactose intolerant but sometimes drink Lactaid Fat Free and still have problems. Have always had a problem with eating sugar and usually end up getting candida infection. Taking Acidodolphus (sp) helps immensely with that problem. Also, I do have small veins and whenever I get my blood drawn they use butterfly needles. Does that sound familiar to anyone? Something else I have noticed is that I have always had low BP.
Do any of you have type 0- blood? Always wondered if that made a difference.
Hope the above was appropriate for the above article.
JulieA
Hi Julie,
Small veins and low BP for me too. Purplish color legs after getting out of the shower, hands and feet always cold etc.
On another note, I have a friend who has been diagnosed with micro vessel disease – it’s controversial but a well known cardiologist agreed with her internet research. ( she was having chest pain among other cardiac symptoms and another cardiologist told her nothing was wrong.). This friend does not have fibromyalgia, and now with treatment feels fine, but would this micro vessel problem be the same issue that we’re talking about here only it manifests itself with us differently, maybe because of where the micro vessels that are damaged are located?
All of these studies, but WHEN are we going to get any benefit or help from . I read so many of these findings but worry I’m not going to live long enough to see a treatment or cure. All of this increased knowledge but my course of treatment hasn’t changed in 25 years. I’m still being prescribed muscle relaxers, antidepressants, and sleep aids. The same treatment I received when I was first diagnosed in 1997!
I too have very small veins and always request a butterfly needle with blood tests. In addition, I always have low blood pressure.
I have never had a tremendous amount of energy but I could work, dance, and take a two-mile walk before I got mono and then fibromyalgia and chronic fatigue. Interested where they will go with this line of research.
This sounds very much like it could be part of Ramsay’s disease with the periodic inability of some red blood cells to be able to curl up into the smallest capillaries. Dr Les Simpson writes of this in his book.
RAMSAY’S DISEASE Myalgic Encephalomyelitis (ME) And the Unfortunate Creation of ‘CFS’ Dr. L. O. Simpson PhD With Nancy Blake BA CQSW UKCP-Accredited Psychotherapist Experience, Comments, Controversies Including Suggestions for Managing Your Own Progress
Simpson PhD, Leslie O.; Blake BA CQSW, Nancy. Ramsay’s Disease – Myalgic Encephalomyelitis (ME) and the Unfortunate Creation of ‘CFS’ (Kindle Locations 3-14). . Kindle Edition.
I’d really appreciate your comments on this Cort.
I think there could be several possibilities. If the research you mention has held up I would be imagine it would be one of them. What do they think is causing the rbc’s to change shape?
Another I think might be autonomic nervous system dysfunction that’s causing the capillaries to tighten up. (I don’t actually know that the ANS is in charge of that.)
Reduced capillary density has been found in FM. That could I believe be the result of the deconditioning but I’m sure there are other better reasons – maybe an immune attack???. I am definitely not deconditioned!
There’s thickened blood as well – per Ken Lassesen’s experience.
What the heck – all these studies and no cure yet??? Why can’t all these educated doctors put their heads together and come up with a solution?
I had a terrible “Memorial Day Weekend”. Couldn’t go to a bbq – was in bed. I am so so so tired. I’ve tried everything I could. I feel like I have 1 foot in the grave.
Why isn’t the government giving enough funding to produce a cure (although don’t follow politics so don’t know if they are).
I am sick of being sick!
Every person – every person should email their representatives about this morass. It is only when we complain en masse that something will truly be done.
Agreed….the government to answer your question – is providing peanuts! (not even peanuts really).
I have FM and CFS, but clearly not ME because I don’t suffer from post exertional malaise. What that really means I don’t know but have considered that the fact I never gave up my daily exercise routine could account for the fact that I can exercise quite vigorously without any issues. In fact my body craves it and I have a hard time thinking of things to do that are free (as money is an issue), and that also comply with my spinal deformity. I have had symptoms since I was 10 – 15 so perhaps my brain is tuned into exercise that I have done all my life. I do get very tired from other forms of exertion though, just like everyone else. My best advice would be to keep exercising no matter what, but it may not suit everyone and may only work if you never stopped to begin with.
Do you have post-exertional malaise that comes from say, mental activity? Or is it more of an issue of fatigue and other symptoms?
I was a vigorous exerciser pre-CFS but unfortunately that didn’t help when I got ME/CFS – I can’t tolerate much exercise.
Thanks, Suella, for mentioning Les’ studies. They are also included in the little book I wrote for people with ME/CFS. (A Beginner’s Guide to ME/CFS) The shape changes in the red blood cell population which Les has recorded in his research into a number of chronic illnesses, in many articles, and his other book, ‘Blood Viscosity Factors – The Missing Dimension in Modern Medicine’ seem to provide a very simple and sensible explanation for the factors discussed in this blog. If red blood cells can’t get to muscles, the brain, and the endocrine system, they just aren’t going to work very well. Muscles cells exercising without oxygen, and without the removal of waste products, are going to produce our symptoms. Les suggests 6 g of fish oil a day, or 4 g of genuine EPO, which many ME people have found helpful, or B12 as hydroxocobalamin injections (which many doctors will prescribe anyway, for fatigue), or pentoxyfilline. The other thing is that early doctors stated that complete rest gives the best prognosis (this advice is now regarded as damaging – but Ramsay and Acheson reported patients who actually recovered – how many of us do that, these days?). Jason et al, in the journal: Fatigue, Biomedicine, Health and Behavior • Energy conservation/envelope theory interventions Leonard A. Jason, et al. Volume 1, Issue 1-2, 2013 report that keeping activity levels below perceived energy levels on a daily basis results in gradual improvement – (increased capacity for activity). I strongly recommend designing lifestyle to perform normal activities with a minimum of muscular exertion in order to be able to continue as many as possible of the activities of daily life, including jobs and study. Expending our precious energy resources going to doctors, hospital appointments, being offered extra exertion as ‘treatment’, just keeps us in a cycle of illness. If we saved that energy, and designed our lifestyle around conservation of exertion, we’d have a much better chance of being able to just get on with our lives. Doctors need patients, but what we need is our lives back. Demand the wheelchair, the recliner, the chance to rest whenever we need it, and watch us get back to our jobs and our studies!
Oh, and keep taking the fish oil – the acidophilus, as mentioned above – and, I find, CQ10 (120 mg) makes a big difference. At the end of the day, until someone comes up with ‘the cure’, all we’ve got is our body’s ability to figure out what to do – and the evidence (see Jason et al) is that if we rest enough to give it a chance, we can gradually improve……pushing ourselves to exert more is the very opposite of what we need to do.
Thanks for mentioning the treatment possibilities. I wasn’t aware.
You mentioned Coenzyme Q10 as a good treatment option and I would agree. I began taking this after I has some metabolic testing done showing low CoQ10 levels. Recently, a small research study was published illustrating that 300 mgs per day of CoQ10 brings serotonin levels in FM patients up to normal levels. So now I take 300 mgs and I can also justify not taking SSRI’s to my physician.
This second link below discusses increased oxidative stress and TISSUE damage in juvenile FM and reduced COQ10 levels.
I really, REALLY think this is an important component of a FM management program and the science (although limited) seems to agree.
But buy a good product – no Walmart CoQ10 !!
http://www.researchgate.net/publication/260195625_Coenzyme_Q10_Regulates_Serotonin_Levels_and_Depressive_Symptoms_in_Fibromyalgia_Patients_Results_of_a_Small_Clinical_Trial
http://www.ncbi.nlm.nih.gov/pubmed/23394493
I wasn’t going to post this as it is only potentially relevant but Cort’s above article changed my mind. This study has interesting implications for mitochondrial function and therefore, potentially, CFS/FM folks. You can buy NAD+ from the company or online;mine arrived while I am traveling and I will try it for FM when I get home. Probably another expensive crap shoot for us.
BTW, I took COQ10 for several months and found no difference in pain, fatigue, or anything else. I need a more expensive brand? So far no supplement or vitamin has had any noticeable effect. My theory is that if something simple really worked, we’d know about it. And these disorders are not simple.
http://hms.harvard.edu/news/genetics/new-reversible-cause-aging-12-19-13
BTW, Cort, I, also, have never gotten new posts by email when I check that box.
This is one of the few times where I would say, yes, you do need a more expensive product. Coenzyme Q10 has poor bioavailability and most commercial products are not formulated for good absorption – you will not create significant increases in plasma levels with these products. Many commercial brands are lipid based (not all) – CoQ10 is a fat soluble nutrient. However water soluble formulations improve intracellular distribution and maximal absorption. This has been well studied and documented for preventing hearing loss for people who suffer from presbycusis. Better yet, are the colloidal formulations. Coenzyme Q10 is an extremely well studied antioxidant.
I would think the most important reason to take CoQ10 would be to lower oxidative stress (where it has proven most useful for MS patients).
http://www.ncbi.nlm.nih.gov/pubmed/23659338
Chris,
Can you comment on Ubiquinol CoQ10? It is more expensive, but is supposed to be better absorbed. Here’s what is said about the product I use: “Ubiquinol is a reduced form of CoQ10 (ubiquinone). It is the form which is directly used in human metabolism as a lipid-soluble antioxidant.”
Based on your post, perhaps I should look further for the water-soluble formulation you mention.
Chris,
This is the protocol I followed. I did not investigate COQ10 variables, could not get the original report so just used a local COQ10. My sources say take with fat and is ok but if you have researched it more and found water soluble to be helpful, I’ll certainly check it out.
http://www.ncbi.nlm.nih.gov/pubmed/23458405
I’m going to first try NAD+ mitchondrial supplement while I research the COQ10.
Cort, I’ve never gotten a thread or individual new post after checking that box, unfortunately.
Thanks for letting me know….I don’t know if that means comments to your comment or new comments. Please let me know if you get this one!
Cort, I don’t get any new comment notifications even though I’ve checked the box. I miss posts because I forget to check back and we’re on to the next topic.
I was in the second most fit period of my life when I became ill. I had been a swimmer who worked out over 20 hours per week in high school, and when I became ill (12 years later) was taking 3 hours of dance classes 3 days a week. Got sick with “weird flu.” Two weeks later, upon return to dance class it was like I had suddenly become “out of shape”: couldn’t tolerate the aerobic portion of the class. I spent the next summer trying to get “back in shape” with aerobics at home, feeling sicker after each exercise session, but stubbornly pushing on, until I finally gave up.
Now, 21 years later, I find that I can do weight workouts (with heavy kettlebells) and I feel better afterward. Whereas if I go for a walk I feel worse. I’m guessing the resistance exercise increases blood flow to the heart and brain, while the walking does the opposite.
As a severe sufferer of cfs/me/fm, daily migraines, extreme pain almost constantly which feels like a lightening bolt, who can exercise? Most days I can’t leave my bed for many years now and people don’t understand. I was exposed to a very toxic substance and don’t believe it when people actually say that they exercise daily. I deserve the right to at least be able to try: Suvorexant and decide for myself.
Agreed!
Hello, In answer to Julia about being unable to jog as well as being bad at any kind of erobic exercise as a child and as a adult. One time when I was 28 (i’m now 52) I went on a long walk with my aunt. Approx 4 miles. When we came back I had to sit because I felt like I couldn’t breath and my heart beat was skipping and erratic, as my heart had been doing this for ever I made a appointment with a specialist who put me on a heart moniter for 3 days. Well at my appointment he said my heart showed several patterns over the days of very slow heart beat I believe he said but don’t quote me was 50 beats a minute at times and in the future I would need a pace maker? Well Ive seen many doctors since then and been diagnosed as mytral prolapse, heart murmur, a abnormal heart beat that was normal for me, to nothing? to this day I do not know? anyway I came down with Fibro or Me after a car accident in 2005, I had whiplash and seems that was the start of a slipperly slope. My main diagnose was Fibromyalgia and I have had very brief times (a yr) or so mostly symtom free, a couple of years ago I was put on a stimulant and started a dance class at first I couldn’t finish one song but I worked my way up in 3 months to be able to dance 3 complete set’s. I felt great, looked great! Then I crashed like we usually do but badly, I was bedridden and dehydratied badly. What had happen is I knocked my human growth hormone levels down badly!! I was put on replacement for a year along with other hormones from the pituary. now I’m off the hgh and waiting to see what happens. My feeling is all these conditions are related. I had horrible pain to begin with which over took the fatigue, once the pain levels diminished in 2009 the fatigue was horrible especially after I over do anything, but going back to point I always wondered back as a teen why I couldn’t skate like everyone else, why I couldn’t run? I didn’t have asthma, Mono they thought at 13 with enlarged spleen and liver, high temp which shows as a previous infection of EBV not active now ,but high levels over 400 in the panels-IGG, Iga and est, my thinking is maybe something to do with the heart and circulation being pumped to out muscles and though our bodys, I know how hard it is I went from being htpoactive, type A to feeling like I’m 75 but I still have hope!! There is always someone worse!1 With a terminal desease. I have to remind myself of this often. Be good to yourselfs and control your stress levels another high factor for us I have PTSD also, Rita
Trying Rebounding——-It’s GREAT,,,,,,,,,,,,,,,,,,
You commit an error, I can defend the position, write to me in PM, we will talk Orthomol Arthro Plus joint pain symptoms
Gosh, Cort, I don’t know how you manage to keep up with all this information! My brain feels like it’s going to implode trying to read, and digest, all the articles you send along to us. Of course, I’m glad you have answered this calling in your life; we all benefit. I so appreciate your hard work! 🙂
Microcirculation. No surprise there. As the article points out, similar studies go back some years. Déjà vu indeed. The key findings are pretty straight-forward. While these studies drag on, along with the years, who knows how long it will take to get some unified, yet individualized to each patient, approach to treatment?!
The supplements mentioned in the comments above are good. I take CoQ10 (ubiquinol form), B12, krill oil, etc. But I cannot take high doses of most supplements. If you consider what a lot of supplements do, besides the good things we WANT to help our ME/CFS/FM symptoms, there can also be a downside. For example, a number of things can lower blood pressure, like fish oil (I have neurally mediated hypotension [NMH]); or they’re too stimulating and cause my already high heart rate to increase and pound harder. However, I find I can often get benefits even at lower doses.
I met Dr. Les Simpson at a CFS group support meeting in Houston in 1999 or early 2000, possibly. What a lovely person! He was up in age back then, so I wonder if he’s still alive. He presented his theory of deformed RBC’s, why it’s a contributing factor to some of the main symptoms of CFS and how he treats it. He took blood samples from all of us, which he carried back with him to Australia (or maybe New Zealand?). Months later, we each got an individualized result of our test, with his recommendation to take high doses of evening primrose oil (EPO). I think (but I’m not sure) that he attributed the RBC deformity to a rigidity in the cells, and they tend to then pile up together in the vessels rather than pass easily through. The high doses of EPO didn’t work out for me, and they can have an estrogenic effect as well.
Gerry’s suggestion of rebounding (small trampoline) exercise is excellent. NASA has used rebounder “chairs” for astronauts returning from extended stays in no-gravity environments. Besides de-conditioning, they have trouble maintaining blood pressure. I don’t use a rebounder because I have a couple of low back discs that I don’t think would handle the repeated pounding, even though gentle. It’s been highly recommended for CFS/FM, and POTS, NMH, because it forces blood and lymph through vessels under pressure…or something to that effect.
Thanks to all who’ve shared. What a journey, ‘ay!?