Exercise is a tricky topic in fibromyalgia. Scan the titles of studies touting the positive effects of exercise in FM and you might be excused for entertaining visions of FM patients happily bicycling, running, doing jump jacks, and pumping weights.
People with fibromyalgia are not running marathons – or even running
That would be a mistake. Yes, exercise studies indicate that regular exercise is helpful but most exercise prescriptions for FM are so limited that, according to the American Heart Association, they still don’t provide enough exercise to protect FM patients from the adverse health consequences of having a sedentary lifestyle. Even after doing the prescribed exercises people with FM would still be described as being sedentary.
That’s about as good as it gets. Moderate to high-intensity exercise usually causes FM patients to suffer from pain and stiffness for days, and high attrition rates in exercise studies are common. A recent survey on Health Rising suggested that post-exertional malaise may be a bigger inhibiting factor than pain in FM. Whatever the exercise protocols touted for FM, PEM is indeed alive and well in the disorder. This study attempted to figure out why it was happening.
IL-6 – Key Anti-inflammatory Factor
Thus far, studies suggest that neuroendocrine and immune problems may be blunting FM patients’ ability to exercise. Several anti-inflammatory factors including ACTH, cortisol, IL-10, and IL-1RA are up-regulated during exercise. All these factors appear to be attributed to IL-6 secretion by the muscle cells. Increased IL-6 production also appears to be associated with a reduction in pro-inflammatory cytokines.
Prior studies suggested poor muscle repair was contributing to the PEM in FM
Growth hormone (GH) also plays a role in keeping inflammation under control during exercise. Growth hormone released during exercise regulates the synthesis of IGF-1, which in turn regulates the production of pro-inflammatory cytokines and helps repair muscle microtrauma. Two past studies have found reduced growth hormone production during exercise to exhaustion in FM.
Studies suggest reduced growth hormone production during exercise in FM may be allowing pro-inflammatory cytokines such as TNF-a and IL-1b to activate the pain receptors in the muscles.
These researchers proposed that an impaired muscle repair response and a blunted anti-inflammatory response was causing FM patients to suffer from both muscle damage and an overwrought pain response after exercise.
The Study
They took blood samples from 20 FM patients and 16 healthy controls, inserted a catheter in a vein, and then exercised them to exhaustion while drawing blood three times during exercise and then 60 minutes after the exercise. Two and four days after the exercise more blood was drawn, and their pain sensitivity was measured. Serum GH, ACTH, IL-1β, IL-6, IL-8, IL-10, IL-1RA, and TNF-a were measured.
Results
Anti-inflammatory Response During and Just After Exercise Takes a Hit
In contrast to the former studies, exercise was not associated with reduced growth hormone levels. Three important anti-inflammatory factors — IL-10, cortisol, and ACTH — however, were significantly reduced in the FM patients during exercise.
Reduced anti-inflammatory cytokine production was present during exercise
Cortisol is a hormone that affects metabolism and reduces inflammation in the body. This study follows on the heels of several others finding that FM patients tend to under-produce cortisol in response to a variety of stressors including hypoglycemia, “static muscle work”, and an exercise test,
Reduced awakening salivary cortisol is also present in chronic fatigue syndrome (ME/CFS). Cook recently finding of altered gene expression levels in the cortisol receptor (NRC31) post-exercise in ME/CFS suggests cortisol problems paly a role in the exercise issues in both FM and ME/CFS.
Since IL-10 levels are believed to be triggered by IL-6 production by the muscle cells during exercise, IL-6 levels were expected to decline in the FM patients, but they didn’t. It’s possible that FM patients’ muscles are pumping out normal levels of IL-6, but the signal IL-6 is producing to create more anti-inflammatory products such as IL-10 is not getting through.
The reduced anti-inflammatory response during exercise could very well play a role in the pain FM patients experience during moderate to intense exercise. If anti-inflammatory cytokines are not preventing pain receptors from being activated FM patients could experience increased pain during exercise.
The Post-exercise Period
What about in the post-exercise period? It’s in the hours and days following the exercise, after all, that the real hit in both FM and ME/CFS occurs. It’s the mysterious pattern of increased pain and fatigue following exercise that is so debilitating. Did the same pattern hold?
It didn’t. The study found no difference in the levels of anti-inflammatory markers in FM patients vs. the controls in the days following the exercise. The study also did not find that the pain or muscle stiffness or any of the symptoms the FM patients experienced after exercise were associated with decreased anti-inflammatory markers.
The Immune System and Fibromyalgia
The role the immune system plays in FM remains a tantalizing mystery. The pain, stiffness, and depression found are classic signs of immune activation and inflammation, but consistent results in immune studies are lacking. As in ME/CFS the immune system has proved a tough nut to crack.
A cytokine studies review finding evidence for increased cytokines (Il-Ra, IL-6 and IL-8) was belied by a recent study finding reduced levels of different cytokines ( IL-4, IL-5, and IL-13). Another study suggested Il-6 production in response to a challenge was greatly reduced in FM. A 2010 review reported:
“There is some support in the literature for relationships among FMS symptoms and cytokines; however, there are discrepant findings related to whether proinflammatory and anti-inflammatory cytokines are elevated or reduced in persons with FMS and whether their levels correlate with the core symptoms of this disorder.”
Short term Inflammation All That’s Needed?
It’s possible that inflammation doesn’t need to last long to produce its effects. A response to “stress” that was similar to what showed up in this study, appeared in the Dubbo studies – albeit on a much longer time scale. In those studies an increased degree of immune activation early in an infection increased a person’s risk for coming down with ME/CFS.
Short periods of exercise-induced inflammation could trigger microglial activation and/or an increased sensitization to inflammatory byproducts (aka Miller’s reduced dopamine hypothesis) in ME/CFS. Exposure of the central nervous system to inflammatory agents in laboratory animals can result in prolonged microglial activation in the absence of any evidence of inflammation in the body.
Another Direction
Inflammation is not the only potential source of exercise-induced pain. The Lights have found indications of immune dysfunction in their gene expression ME/CFS/FM exercise studies, but receptors associated with assessing muscle damage and sympathetic nervous system activation appear to be more important. Increased levels of lactate and pyruvate in FM patients’ muscles have been found in several studies.
A recent fibromyalgia mouse-model study suggests that long duration pain triggered by exercise is produced differently from the pain produced by inflammation. It suggests that ion channel dysfunction of the sensory nerves associated with the muscles could be causing that pain without the involvement of inflammation.
It’s possible as well that the reduced anti-inflammatory response during exercise – which has now been seen in several studies – contributes to the ion channel or other exercise associated problems in FM and/or ME/CFS. There are lots of options.
A Growth Field
This study found that something did go wrong with the immune system during exercise, but how to translate that into the post-exertional relapses FM and ME/CFS patients experience after exercise is unclear.
This research and others are opening the door to understanding what happens to people with ME/CFS and FM when they exercise. It will take time and much more research to fully understand what is happening, but the sheer range of factors being looked at – from cytokines to cortisol to muscle metabolite receptors to brain functioning to aerobic capacity to muscle oxygen consumption to pH levels to mitochondrial functioning (take a breath) and probably more is gratifying.
Andrew Lloyd recently joked that exercise studies are great for researchers seeking to understand ME/CFS and rough on the patients who engage in them, but it’s very encouraging that researchers are now focusing so intently on what is the defining characteristic for ME/CFS.
Hi Cort,
Wondering if you’ve seen this
http://www.ncbi.nlm.nih.gov/pubmed/24231834
Also got an email from ProHealth promoting it….the science seems kinda shake. Wondering if you were planning a post on it.
Best,
Steve
It’s definitely possible. There’s lots of evidence that oxidative stress levels are raised in ME/CFS and anything that can lower them is a good idea.
GREAT article Cort! Thanks for such an informative writing! Always appreciate ALL that you do….
Thanks Anita 🙂
I had Fibro for more than a year before I got ME I was diagnosed by a Rheumatologist for Fibro early winter 1990 . The pain was mod – severe often. I had NO PEM, none, nadda. I could walk miles, or ride my bike miles and did almost daily (my bike). I got infections easily it was started after respiratory virus. I couldn’t smoke cigarettes as much I got ill, my immune system did go down I kept getting infections in my lungs and throat. I got a severe virus March 16, 1991 with partial paralysis (ex got it 4 days later) and had sudden onset diagnosed by Infectious Disease Specialist Aug 1991 who was well known for HIV/AIDS and ME, I was told I had ME and given info on it back to 1934. On my med records states CFS (?) thanks to CDC? That was it, game over and extreme PEM (its not malaise, that has to be changed – it’s a relapse and worsening of all symptoms PER, or Collapse?)
I’m rather shocked at the findings 36 people is very small study. Also surprising notations that pain can be measured via blood tests Two and four days after the exercise more blood was drawn, and their pain sensitivity was measured. Serum GH, ACTH, IL-1β, IL-6, IL-8, IL-10, IL-1RA, and TNF-a were measured. this is the first I have heard of pain being measured, if they can why isn’t it used regularly, if it is well proven? As far as I know until possibly now is that medical has no way of measuring pain in a valid manor and is subjective to the person. Some high pain tolerance some low. I often have extreme pain from generalized dystonia. It would also help people who need pain medications who are getting hit on very hard and often refused pain medication and governments are making it worse. thanks Cort (wow I sat up and typed that (rare able to) – side tracked)
Actually, as I remember, I hope correctly, I think the pain was measured by pressure threshold devices – I didn’t mention them. They sound like they are devices that push down on a point until pain is elicited. So I’m afraid still now direct measures of pain…Sorry for not being clearer about that.
Pressure points for Fibromyalgia 18 (I had/have 21 for Fibromyalgia alone ) You are correct in pressure applied. Thx
Cheryl, if you did huge amounts of exercise on a daily basis and were getting mod to severe pain, when were you getting the pain and how do you know it wasn’t caused by the exercise?
Didn’t have that kind if pain or level if pain from bike riding unless hit by car(s) been riding since kid. . Riding bike to work and after or anywhere else in city was not huge amount if exercise ti me and little to no pain. After Fibromyalgia location of pain , some are areas worse than other tender points. Chest back neck worst, for me. other trigger points followed as in less pain. I couldn’t ride as much as did prior , work was a bit if a push there abd back. Could still walk miles, was not on regular basis And the infections and intolerance to toxins after , even flying. Was last time I flew There was no PEM/PER
i tried the french oak wood extract-robuvit- and i just felt worse. like so many of us i’m extremely sensitive to sooo many things! re: steve’s message if anybody wonders what i’m talking about.
I wish someone would figure out the sensitivity issue. I suffer from it as well…it’s got to mean something really important about these diseases
Previous posts on HealthRising on this topic, that I became aware of recently, have been the biggest breakthrough in coping with my Fibro that I have had for a long time. This “post exertional destruction” phenomenon (as one commenter a while back called it) is SO true!!!
http://www.cortjohnson.org/blog/2013/04/17/are-oxygen-starved-tissues-causing-pain-and-fatigue-in-fibromyalgia-and-chronic-fatigue-syndrome-mecfs/
And this one:
http://www.cortjohnson.org/blog/2014/02/05/poor-oxygen-uptake-may-core-exercise-problems-chronic-fatigue-syndrome/
I have found this on the internet too now:
Noninvasive Optical Characterization of Muscle Blood Flow, Oxygenation, and Metabolism in Women With Fibromyalgia
http://www.medscape.com/viewarticle/804318
I want to make a few observations that might make sense to someone. I succumbed to fibromyalgia while very fit and exercising a lot. Cycling was my main form of exercise.
One of the earliest problems that I noticed, while I was still very fit, was that I could not “squat” without major pain from the muscles at the point where they attached to my knees. Furthermore, I rapidly became breathless and light-headed. As I was so fit and strong still in other ways, I did not let it bother me. I partly presumed that off course squatting down would cut off blood circulation.
But I certainly gradually succumbed to building-up pain and stiffness in all limbs, neck, shoulders, chest and armpit area and eventually my keep-fit lifestyle was OVER.
It absolutely rings true to me, that vigorous exercise leads to hours afterwards of “post-exertional destruction” followed by days of added pain and stiffness. I have constantly waged a battle for continued mobility and found out the hard way, by experience, that I need to keep all physical exercise to low intensity levels and ideally, in a state of relaxation of muscles while exercising.
But what I find particularly interesting, is that certain positions in which I try to coax myself into increased mobility, particularly the squat (trying to restore those knee muscles), in a pool with my weight supported by water, I still become breathless very rapidly even though the pain is minimal due to the support of the body weight. The same occurs when I try various static stretches that put a similar “strain” on the leg muscles – even with my body weight totally supported.
So I wonder whether there is some effect at work, of blood flow being abnormally restricted perhaps due to myofascia rigidity in major areas of muscle development. I have impressively large leg muscles, even in my post-athletic, fibromyalgic days. It is frustrating to be physically strong, and known to be physically strong, and suffer from pain and lack of stamina, which others can be quite cynical about because of my known strength. But I have seriously lacked muscular flexibility, and frequently tore muscles once I was succumbing to (undiagnosed) fibromyalgia. Which took forever to heal – if in fact the scarred tissue (in calves and hamstrings) has ever gone away.
I strongly agree with researchers dismissal of actual heart and lung problems – while I now avoid high exertion due to the after-effects I know I will suffer, I know that on various exercise machines, I can maintain an impressively low heart rate while generating a reasonable power output. Personal trainers have commented that at the low intensity levels, I am performing like a typical athlete. I WAS an athlete once! And I can even dig deep, press through the pain, and put out impressively high power levels for several minutes, with heart rate going to normal healthy athlete levels for the power output. But the pain at the time is bad enough, and I know the post-exercise pain will half-kill me. So I don’t let myself get tempted into macho “exercise machine competitions” with other gym-goers even if I know I could out-do them.
As I have said in some of my comments, I do believe that high job stress was the major factor in the original onset, and changing my career completely to something enjoyable and low-stress is a major factor in me making a partial recovery. But becoming aware that I need to limit my exertion at all times, has really helped me to keep the ongoing pain levels lower.
I have also suffered from inexorable weight gain, and this is SO true and frustrating:
“…most exercise prescriptions for FM are so limited that, according to the American Heart Association, they still don’t provide enough exercise to protect FM patients from the adverse health consequences of having a sedentary lifestyle. Even after doing the prescribed exercises people with FM would still be described as being sedentary. That’s about as good as it gets. Moderate to high-intensity exercise usually causes FM patients to suffer from pain and stiffness for days…”
In desperation, I have been on the Atkins diet for a year now and have gone from 150kg to 120 kg – and my weight has plateaued there – still some 30kg overweight for my height!! (I was 85kg while well and fit). What can I DO???? The excess weight has always placed strain on my muscles, eg when climbing stairs. I am seriously lacking in agility for any tasks that involve getting down on the floor or climbing anything.
I am sure this is the direction that research needs to go in for Fibro. I also hypothesize that similar damage is being done in people not only when exercising past the mild level, but simply when stressed – maybe the myofascia is playing a role in constricting blood flow merely when stress tension is present? Especially when sitting in a sedentary job? I know people who succumbed to Fibro when they were sedentary, and NOT exercising at all.
I have for the first time recently discovered practitioners in my region where people can now get myofascial release therapy and also hyperbaric oxygen therapy, and have my first appointments with both in the next few days. Some of us Fibro patients are experts in the state of the research and treatment options – it is in our interest to be, unlike GP doctors and even specialists!
Good luck with the myofascial release and hyperbaric oxygen.
Your experience with your low heart rate and still impressive energy outputs is really interesting as is your problems with the squatting. I wonder if that means you’ve had progressive autonomic nervous system problems.
To throw something else into the mix. Most of my exercise is walking – which I think is probably the least tolerable kind of exercise for me. My post exertional malaise symptoms don’t involve my legs -which have been getting the “big” workout – at all. Almost all the muscular pain is in my upper body – particularly in my torso – and particularly along my rib cage…
Why using muscles in my lower extremities would translate to more upper body pain is a puzzler for me…
I do think that this type of research is going to be what unravels FM and ME/CFS.
That does fit somewhat with my experience too – torso, rib cage and neck are just “always sore”. Possibly walking does make this worse for me too. But what I am talking about is attempting to break into a jog for “a whole 60 seconds” (wow!), say. That will leave my legs stiff and sore for a whole week. So will too much burst of energy on a bicycle or exercise machine.
Actually, riding a bicycle or stationary cycle especially aggravates the torso, rib cage and neck.
I suspect that these symptoms have to do with the burden of the weight of the head, which we are carrying all the time. Possibly the constant muscular load involved is enough to throw the muscles into fibro exertion malaise. Try a neck brace, perhaps? I haven’t gone that far.
The Qi Gong massage practitioner I go to regards the chest and sternum area as very important in the whole issue. It seems the Chinese medicine specialists do know about fibromyalgia (but I don’t know what their name for it is).
I didn’t mention, because it has been so much second-nature for years, that one of my very bad symptoms years ago was terrible pinching sensations right in the middle of my chest, as if both sides of the rib cage were squeezing in on nerves in the middle. Here is my logical self-treatment that I started doing, and it worked: I go over on my back on a large inflatable exercise ball, with a small dumbells weight in each hand, and arms extended so the dumbells rest on the floor. I then do a workout, moving the dumbells up and down along the floor, to above my head and down by my sides; another workout, is bringing them up together above my chest. I have been doing this for probably 15 years every morning and it is so second nature I have forgotten to mention it.
The Qi Gong practitioner nevertheless can still dig into some of the sorest nodes on my whole body, in that general area. I am quite optimistic that he is actually making a difference to the nodes themselves, his technique is amazing. He is brimming with optimism, as though practitioners of his approach fully expect to be able to effect a “cure”.
I think many FM and possibly CFS patients suffer the same phenomenon. The post-exertional pain/malaise is system wide.
I think we underestimate the role of fascia as well – deep fascia is the most innervated “organ” in the body and contains thousands of sensory receptors for pain, temperature, chemicals and others.
Since fascia is connected over our entire body, dysfunction in any area can be felt somewhere else. Imagine if your shirt was tucked in to your pants too tight and every time you lifted your arm, your shirt would pull, but you wouldn’t feel the tightness on your waist – you would probably feel more pain at your shoulder.
Once fascia become inflamed and muscles restrict, trigger points develop in the muscles and further weakness and restriction ensues. If they aren’t treated (and they rarely are), secondary Tp’s are recruited and things really start to go wrong.
I know some think that fascia and Tp’s are a bit of hocus pocus but I think we have been quite remiss in our understanding their role in chronic pain. Anyone who is interested in kinesiology would be aware of the recent phenomenon of taping athletes with injuries – this is fascial movement therapy.
I was 23 years into my illness when I met with a very intelligent clinician at a hospital pain clinic. He was originally trained as an anaesthesiologist which was the foundation for him to develop a very sophisticated understanding of pain in the body. I had such tremendous restriction and pain in my neck that I could no longer do a shoulder check when I drove. Injections in to various muscles in my neck over the course of months (yes MONTHS!) eliminated the pain and restriction.
I still remember the day he said to me “I am not sure what to do about your FM, but I can certainly help with all of this myofascial dysfunction – we can get rid of a lot of your pain”.
‘maybe the myofascia is playing a role in constricting blood flow merely when stress tension is present?’
That’s a really good way of describing something I experience under emotional stress. A sort of tightening feeling right over my body that is reluctant to release and just saying muscle contraction don’t quite hit it. Physical movement seems contra but actually releases everything. Physical work outs for me equate to a 15 min or a two mile bike ride – on good days – and that can leave me with post exertional stiffness, soreness and, most horribly, burning legs, sometimes burning all over if I’ve really pushed it. Like so many, so frustrated after being an extremely strong and active person. Burn out springs to mind.
I totally understand the pace management …then often boom and bust!
My early experiences were very similar to yours. Breathlessness on certain movements and low pulse rate re output and pain in the same areas, and having to downgrade from a very active and physically fit lifestyle. I did not realise I had pain in my pecs and armpits until I started trigger point self therapy…ouch, they are tender little suckers!
After two years of this I eventually showed up hypothyroid and thyroid hormone replacement helps a lot. Definitely one to look out for in FMS
Great article, again. Thanks so much for all the terrific research.
There is so much that points an autoimmune element in FMS. My particular experience is as an auto immune thyroid patient for who thyroid hormone replacement eliminates or minimizes FMS symptoms. I was originally diagnosed with FMs and, classically, thyroid issues were not being picked up in blood tests until signs became overt. I will never know whether my FMS is a manifestation of thyroid disease or vise versa, but I sure fit in to John Lowe’s theory.
I note that all the main points here are also reflected in hypothyroidism.
Not everyone with hypothyroidism suffers from the whole range of FMS but for those that do, the symptoms of autoimmune thyroid disease and FMS are alarmingly similar…..nay, the same! I would love to see more medical studies on the relationship between the two, or whether it is another variant of autoimmunity that works on both thyroid and CNS. I came across a study that showed a link between hashimoto’s and vestibular dysfunction (which I also have) concluding that it is highly possible that antibodies present in Hashi’s could also be attacking the vestibular system in some Hashi’s patients.
Dr. Bateman has stated that, I can’t remember what – 30 or 50% of her patients are hypothyroid! That’s definitely an under-explored topic in these diseases.
The really scary bit is so many doctors just rely on lab tests (stating the obvious) and even autoimmune markers aren’t always that reliable making it even more illusive.
nope, it’s the virally induced lack of neurotransmitters, worsened by the overdose of adrenaline you get during activity
‘they’ don’t know because it’s hard (expensive..) to measure neurotransmitters, Leonard Jason told me, so they focus on cytokines and stuff
in 5 years, remember this comment ;D (if Cort doesn’t delete it..)
If you are interested, you can get fairly reliable neurotransmitter testing done through urinary organic acid testing. This is what is used for cancer testing and is fairly affordable. Serotonin is assessed by measuring 5-hydroxyindoleacetic acid (5-HIAA) , Homovanillate (HVA) and vanilmandelate (VMA), are by-products of dopamine, norepinephrine and epinephrine metabolism and these three tests can give you a good look at your neurotransmitter function.
That was an excellent article
Hi Cort,
I have thought for the last several years that my pain was caused by a link between damaged mitochondrial and oxygen not reaching the affected areas. I have had so many tests performed and been prescribed everything in the book including narcotics. I have requested supplementary oxygen with my bipap and oxygen therapy when I exercised, but the various Doctors have just brushed off my request as not accomplishing anything. How do I convince them to change their position? Thank you for your time and research. Sincerely, Chris
I just get ill after any exercise.Malaise,flu like symptoms.I am now trying an immune support echinacea drops.