Have Doctors Gone Too Far on Exercise For Fibromyalgia?

Discussion in 'FIbromyalgia and Pain Research' started by Cort, Jun 2, 2016.

Tags:
?

My doctor has strongly recommended exercise to me

  1. Yes

    26 vote(s)
    56.5%
  2. No

    14 vote(s)
    30.4%
  3. I've found exercise to be VERY helpful in alleviating my pain and other symptoms

    3 vote(s)
    6.5%
  4. I've found exercise to be MODERATELY helpful in alleviating my pain and other symptoms

    4 vote(s)
    8.7%
  5. I've found exercise to be SOMEWHAT helpful in alleviated my pain and other symptoms

    15 vote(s)
    32.6%
  6. I haven't found exercise to be helpful in alleviated my pain and other symptoms

    4 vote(s)
    8.7%
  7. Exercise has made my pain and other symptoms worse

    33 vote(s)
    71.7%
Multiple votes are allowed.
  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    There is no question that physical exercise can be helpful in fibromyalgia. It's generally described a "first-line treatment for FM; i.e. it's the first treatment doctors often prescribe. Exercise is almost certainly the best studied treatment option for FM. Dozens and dozens of studies have shown that moderate exercise can have significantly positive effects and more studies are coming out all the time.

    exercise.jpg
    Over the past two years no less than 18 studies have examined exercise in FM. In fact so many exercise studies have been done that in 2014 a meta-review of meta-reviews of exercise in FM was done.

    Exercise is a hit in FM.

    Exercise and Fibromyalgia

    Let's look what the studies say about the benefits of exercise. A recent meta-review indicated that the exercise prescriptions for FM are quite mild; we're not talking about running marathons or in many cases running at all. A meta-review recommended that exercises of slight to moderate intensity be done twenty to thirty minutes, two or three times per week.

    Exercise didn't have any impact on sleep, had small impacts on pain, fatigue, depression and quality of life. and medium impacts on physical fitness.

    Whether its Tai chi, yoga, swimming or walking it doesn't seem to really matter. (Some indications suggest resistance exercises may be a bit more helpful.)

    A recent study aimed at increasing the number of steps taken a day from inactive (@4,000) to almost active (<10,000) steps a day found that doing so had positive outcomes on Fibromyalgia Impact Quotient, pain intensity, pain interference and depression scores.

    Woman-walking-cross-co.jpg
    The Fibromyalgia Impact Quotient did, in fact, drop twelve points - a significant amount - but at the end of the study it was still at 54 out of a possible 100 (with zero being FM has no impact; i.e. no FM). Pain intensity dropped from 6 to 5 but 5 was still nowhere being pain-free (0 = pain-free). A similar pattern prevailed across the other measures; according to the statistics there was very, very little chance that exercise was not the cause of their improvement (p<.0001) but how much better were they?

    One indication that the researchers might have been more pleased with the study than the patients were showed up in the 6 and 12 month follow ups. By the six and 12 month follow up most of the patients had returned to their normal activity levels. That hardly suggests exercise made a radical difference in their lives.

    The medical community seems almost driven to overstate any positive findings. The meta-review referred to earlier found minimal effects of exercise on pain and fatigue and depression but note its conclusion (below)- and think what a busy doctor who might take from that.

    There's nothing inaccurate about this statement - it's just incomplete. Exercise does reduce pain, fatigue, etc. but while the effects are significant they are also small. (Only in medicine can something have significant and small effects at the same time….)

    The fact that physical exercise and cognitive-behavioural therapy are considered first-line treatments for FM may say more about how effective the medical profession is in treating FM than anything.

    The Mayo clinic does a fairly good job with exercise and FM. It acknowledges that exercise is probably the last thing a FM patient feels like doing and that it may help reduce your pain.

    If you have fibromyalgia with painful tender points, deep muscle pain, and fatigue, exercise is probably the last thing on your mind. Yet, exercise may be just what the doctor ordered. Whether it's daily walks,stretching, swimming, yoga, tai chi, or Pilates, low-impact exercise programs can keep you fit in spite of your fibromyalgia -- and may help reduce your pain, as well.

    It's too glib "exercise may be just what the doctor ordered", however, makes exercise sound as if it might be some magic pill.

    The list of positive effects the Mayo clinic attributes to exercise is a long one
    • Burning calories and making weight control easier
    • Giving range-of-motion to painful muscles and joints
    • Improving a person's outlook on life
    • Improving quality of sleep
    • Improving one's sense of well-being
    • Improving aerobic capacity
    • Improving cardiovascular health
    • Increasing energy
    • Placing the responsibility of healing in the hands of the patient
    • Reducing anxiety levels and depression
    • Relieving stress associated with a chronic disease
    • Stimulating growth hormone secretion
    • 'Stimulating the secretion of endorphins or "happy hormones"
    • Strengthening bones
    • Strengthening muscles
    • Relieving pain
    All these are undoubtedly true. (Notice that relieving pain is the last one mentioned). What’s lost in the translation though is the context. When FM patients read increased energy - they probably envision abundant energy; when they see pain relief - they probably envision freedom from pain; when they see improving quality of sleep they probably envision waking up rested.

    The studies indicate they will probably get a small reduction in fatigue, a small reduction in pain and maybe a little better sleep. The disconnect between the medical profession appears to be offering and what it is offering is immense.

    By the way studies do not, as the Mayo Clinic suggests indicate that exercise increases serotonin levels, or endorphins. Nor do most studies suggest that it rebalances the autonomic nervous system. It may help with HPA axis functioning and inflammation, however.

    patient-doctor.jpg
    This is not an anti-exercise blog, or is it meant to suggest that FM patients shouldn't exercise. Maintaining physical fitness is important and exercise may help you stave off serious future problems. Plus studies indicate that it generally does help but if your doctor looks at you and says you just need to exercise or believes exercise will play a significant factor in returning you to normal health, perhaps you need to find another doctor.

    The medical community has a great desire to find something that helps. Helping people, after all, is why doctors become doctors and doing so helps them legitimize themselves. Overstating the potential of a treatment, however, can leave patients questioning their doctors and themselves.

    One question is why, given its moderate effects, exercise has so captured the imagination of research funders. One meta-review examined more than 70 FM exercise studies. As of this writing nine more were underway at clinicaltrials.gov. A recent study asked whether walking in a mature vs a second growth forest was more beneficial in FM. I am all for getting out into nature but is yet another permutation of an exercise study going to move the bar in FM?

    How have you done with exercise? Has it been a great help? A moderate help? Not much of help? What does your doctor say about it? Let us know.

    Your Donations Keep Health Rising on the Web

    [​IMG]
     
    Last edited: Jun 3, 2016
    Simon likes this.
  2. TigerLilea

    TigerLilea Well-Known Member

    I don't have FM so can't answer the poll. However, my sister-in-law has FM and moderate exercise in the form of walking did help her a lot in the past. She now has arthritis on top of the FM so her pain is much different now. :hurting:
     
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Well there's a good vote for exercise :). (Feel free to put in vote for her. ) Sorry to hear she has arthritis to deal with now although exercise is actually recommended for arthritis for many of the same reasons. ..

    I think the mantra is now that if you can move and be active you should definitely do so because there are real consequences to not doing so.

     
  4. Katie

    Katie Active Member

    I've had FM a lot longer than ME/FM combined. With just FM I found keeping active really did help in many ways, my body was looser with less pain but as time went by, even when I tried to continue some exercise ie swimming or walking my endurance went from 42 laps down to 1/2 and walking from 40 min to 5-10. Drastic change.
    I wear a fitbit but I'm only walking an average of 4000 steps which is very inactive. I also do stretches or gentle movement of my body like with Qi Gong and as long as I don't do more than 5-10 minutes every few days I'm ok but no where near the "exercise twice a day and go to aquafit at least once a week" so says my newest physiotherapist-whom I thought understood what ME was about-but nope. I'm bringing print-outs on ME and PEM next time!!
     
  5. bobby

    bobby Well-Known Member

    I know virtually nothing about the reality of FM, but I have wondered if the proposed benefits of exercise are the same blatant lie as it is in ME? Staying active (gently) does make sense if you have a lot of stiffness and pain, but I've learned that some illnesses are just not logical (at least not until we discover the underlying mechanism).

    @Katie ME + FM, oh boy, that sounds like such a tough balancing act, with some things being good for one condition, but detrimental for the other...:depressed:

    I'd love to learn more about this stuff, so I'll keep on reading here :)
     
    Katie likes this.
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    There have been sooo many exercise studies in FM that I think this is a real finding; getting exercise, getting the blood flowing, keeping the muscles as loose as possible - it's all helpful. I worry that it's oversold a bit though and I really can't understand why, when there is so much to learn in FM and so much more to go to find effective treatments, so much money is still being dedicated to exercise.
     
    Justin likes this.
  7. madie

    madie Well-Known Member

    It's very helpful to hear that studies show exercise to be helpful, but not very. So much noise about a small gain! But it's great to hear about anything that helps, even a little.

    I have CFS and FM, so strenuous exercise is out for me. I've found the combination of boswellia and slow stretching to be very helpful for deep muscle pain.
     
    UK Margaret and Katie like this.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I've found stretching to be helpful as well.
     
    Seasprit likes this.
  9. bobby

    bobby Well-Known Member

    there's lots of exercise studies in ME with 'supposed' benefits on paper, because they use criteria that include people who don't even have ME. are the FM patient cohorts usually more accurate than they are in ME? (trying to learn here :))
     
    UK Margaret and Justin like this.
  10. Roseann

    Roseann New Member

    I consider exercise getting your heart rate going above resting 25 minutes 3 times a week and not just stretching, metitation or Tai Chi. When I was younger, I was able to take long walks or go on the treadmill and it would help my fibromyalgia. But the older I am getting, I no longer can do any these or any aerobic- type exercise as my pain gets tremendously worse.
    I would recommend doctors say "light" exercise. I hope the researchers can find a way where FM people can really "exercise" again.
     
    bobby likes this.
  11. Phil Hayward

    Phil Hayward Member

    Cort - this is one of my core beliefs about FM, that I have commented about frequently.
    In the poll at the top of the thread, I ticked BOTH boxes, for: exercise has been VERY helpful with my FM, AND exercise made my pain and other symptoms worse!

    I have experienced both things; but in the last three years I discovered how to "keep it beneficial". We need to look at our physiques, in the same way that athletes look at "aerobic threshold". It is now decades-old knowledge, that focus on aerobic training lifts the aerobic threshold; that is, the athlete is capable of a higher intensity of exertion "aerobically", without the body going into anaerobic condition and then needing to recover, clear out lactate and so on. Different people also recover from anaerobic exertion - going over the aerobic threshold - at different rates. Great athletes can deliver bursts of higher-intensity exertion more often, recovering more quickly in between them. But being able to "keep up" without going anaerobic at all, is a major plus.

    In the case of FM sufferers, I believe we have a severely impaired ability to recover from anaerobic exertion (and indeed even intense exertion of any particular muscle over a short period of time) - where an athlete might just reduce their intensity for a few minutes and be "back to normal", we remain swamped with lactate for DAYS, during which time we have probably been generating even more lactate. ESPECIALLY if we are deliberately exercising! This is why exercise makes us worse!

    BUT if we avoid the intensity that creates lactate - and I also recommend a ketogenic diet to ensure burning fat for energy, not sugar - and exercise at steady aerobic or lower levels ("fat burning" is a lower level than "aerobic") I believe we gain all the benefits of exercise and avoid the downsides. PLUS, the aerobic threshold rises, so we become capable of more and more without "overdoing it".

    My spectacular rebound from FM in the last 3 years (after 20 years of hopeless battling) owes more to this hypothesis than anything else. I do believe that "multi-disciplinary" protocols are best, but "exercise of the right intensity" is the essential ingredient of all success stories. Devin Starlanyl has largely got this right in her writings; and she cites an extremely important study - Wigers and Finset (2007). I believe the Wigers and Finset study proved a success with so many of its participants because it included exercise at the right intensity, and gave the participants very definite directions on this point. Trigger point therapy was included; and I believe that this and numerous other treatments WILL speed up recovery IF the "right intensity of exercise" is part of the protocol.

    In fact stretching, for example, is only painful and likely to provoke injury if progress is not being made with flushing out the toxic, glue-like ground substance in the myofascia; and I believe exercise at the right intensity, and diet and de-tox, achieves this. I would add, plenty of water consumption with magnesium at doses as high as can be tolerated. Hair Mineral Analysis Testing can also help address imbalances and identify toxic elements that need "flushing".
     
    madie, Cort and bobby like this.
  12. Seasprit

    Seasprit Member

     
  13. Seasprit

    Seasprit Member

    Over my many years w/ FM/CF/EBV, I have found warm pool exercise to be most beneficial with the least negative side effects. I had several rounds of Physical Therapy with a warm pool exercise program geared specifically for my body. I was very fortunate to have a PT w/ fibro experience and she purposely aimed at low repetitions and easy stretching in the water both before AND after. She felt this mitigated some of the muscle reactivity. I continued this routine w/some additions in a local warm pool for many years....usually 2X a week.
    However, even at its best...I would leave the pool feeling really good and within hours, I would experience the "rigor mortis" setting in. The psychological "good' feeling of experiencing my body as more active, was far more possible in the pool than on land. This was a big motivating factor in keeping up this routine inspite of the consequences. It also helped me maintain muscle tone and kept me from gaining more weight. Like many, I experienced the fibro weight gain of around 30 lbs but that has remained pretty constant over the years. So I recommend foks who are interested to find at a pool based PT program and have a program created for your particular body issues. Make sure to start slow and be gentle with yourself as you learn a routine. Afterward, find a local warm pool which is really essential for foks with fibro....water temps should be around 86 degrees. You can check with your state Arthritis Association that has lists of warm pools. I happen to really like being in the water and if that sounds like you, give it a try!
     
    Last edited: Jun 2, 2016
    Belladonna likes this.
  14. fibroite

    fibroite Member

    I am currently going to aquatic therapy which I've found to be extremely helpful plus it is the only alternative type of therapy that my insurance covers. However the exercises I've been given to do at home has been a complete failure on my part. When I am feeling any mode of energy I use it to do work in my home which is a priority for me due to the minimal time I have at this point. I've also been seeing a MFRT massage therapist recommend by the urologist at UCSF for another chronic physical problem I have. The most dramatic change has been my sleeping every night with only a rare night when I can't sleep at all. For me this is huge as before I would go 1-2-3 nights without any sleep, 3 nights was unbearable & didn't happen too often but 1-2 night was on a regular basis & terrible especially when people would say you need some sleep! My answer to that is what person in their right mind would choose not to sleep every night! I truly believe that after 10 + years with FM my family still thinks I can make choices with FM rather than believe I can't. My Dr has never actually talked about exercise for FM. I found a study I believe was done at Stanford on the benefits of aquatic therapy so I asked my Dr & he was more than willing to put through the referral's. The only hang up is you can only get so many referral's & then your on your own. I would love it if I could continue with the AT for a much longer time span but I'll take whatever I can get for now.
     
    Katie likes this.
  15. fibroite

    fibroite Member

    By the way Cort I've looked up several clinic trials which I have no idea how to read. Any help?
     
  16. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I think trigger point therapy is a really good idea. This morning I went on a walk with the dog....It wasn't long but I did a walk last nite and here I am - muscles painful and burning - like nothing I ever experienced to ME/CFS/FM....just a little walk......It really feels toxic and myofascial - not at all like the burn I used to get prior to ME/CFS.
     
  17. Vicki

    Vicki Member

    It took me about 2 months after I had to take early retirement in 2010 before I could walk more than about 40 feet and then, only slowly as I have a severe heart condition as well as other health problems that affect my activity (besides FM). But I DID very gradually over a 2 month period work up to 3-4 hours of slow walking with regular stops to allow my heart beat (and chest pain) reduce to its normal slow medicated rate.

    I genuinely believe you have to take it slowly and find out what exercise works for you. You CAN exercise with FM (or moderate CFS).
    Most people with chronic pain and fatigue (for any reason whatsoever) attempt too much and resent the exercise as it may cause more pain (and fatigue).

    Sure, there are going to be many things you can't do. That's ok. Accept that.

    You have to be in tune with your body and have a positive attitude. Instead of calling your activity 'exercise', call it movement and remember that old saying "move it or lose it".

    e.g. after my first lumbar back surgery in 2008, I was not allowed to sit for more than 15 minutes at a time. I had to alternate lying flat or walking. In the evening when I was really tired, when watching tv, I got up every advertisement break (I timed it - they were every 5 minutes except at the start of a movie when the first ad break was 20 minutes into the movie). I might clear the dinner dishes. Get a glass of water (which was healthy in itself by keeping me hydrated). Brush my teeth the next ad break. Walk to the bathroom and back to the lounge the next ad break..... and so on. I broke every day's activity or non-activity up, no matter how small, into 'breaks' or movement sessions.

    Secondly, I took up a hobby and gave myself a reason to walk outdoors besides the 'exercise'.

    These days I can't do as much walking due to an old foot/ankle injury, so I do 20 repetitions of one exercise before I get out of bed. 20 repetitions after getting out of bed. My heart meds keep my heart rate very slow. But it doesn't stop me stretching.

    When my foot/ankle pain is too bad to walk around (and I've just been through 3 weeks of being housebound and having to use a walking stick some days to walk around my apartment), I do simple stretches while seated.

    If I can't do 20 repetitions and only 11 or 12, I don't beat myself up about it. I just do something every day.

    And so on............ Some days I am really too fatigued, but I can always get up and down and walk around the room. Be sensible about your exercise regime. It doesn't have to involve weights, aerobics and going to a gym. It doesn't have to be formal exercises as healthy people might do regularly. It doesn't have to be a sport. You don't have to walk around the block. Try walking the distance of 2 houses and back home. If you have a house and garden, walk to the front fence and back to the front door twice in the morning. Work up to doing this morning, noon & late afternoon.

    When in rehab recovering from my first back surgery, I would walk to the end of the hospital corridor and back 3 times a day to start. When all the other spinal patients were laying in bed watching tv, I would walk around to the next ward and back. I found laying in bed made my back ache too much. Laying in bed caused physical pain for me. But standing up straight actually didn't hurt at all. I made goals for myself.

    I'm not saying it was easy or pain-free. But starting with small baby steps and increasing the distance slowly makes for longer walks that one can manage.

    If you can afford it, go to a good physiotherapist to teach you small muscle flexing exercises. Surprisingly, these lead to much stronger limbs and muscles. Lean how to relax each muscle, or part of your body, in turn. Pain makes you tense up. Dehydration causes the tissues to constrict and tighten (increasing pain).

    Learn how to move and walk in slow motion. Doing stretches or non-aerobic exercise (i.e. not increasing your heart rate) may not make you fit, but it WILL keep your muscles from atrophying. It may be that you CAN do light stretches that keep you supple without causing worse pain. And of course, you don't necessarily need to know all the technicalities of how/what/when/why, you just need to be willing to try.

    Instead of thinking about what you can't do, work out what you CAN do. If you can't find a way to exercise/move, find a physiotherapist experienced in chronic pain conditions who can help you. If you can't afford a physiotherapist, research on the internet.

    Be proactive and take control of your pain. I've had moderate to severe pain for 36 years and I still, no matter how bad a relapse, always find my way back to a manageable or tolerable level. I always find a way to something positive.
     
    Seeksassy and Katie like this.
  18. Edie

    Edie Active Member

    I bought myself a recumbent bike, as my spine has deteriorated too much to use the treadmill. I only bike for 10 minutes a day. I was surprised at the cognitive benefit I received that lasted all day. It also helps with the pain for a few hours. Wish I had the energy to do more! Got to be careful not to bring on the crash!
     
  19. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Glad to hear it Edie - thanks for passing that....I think a recumbent bike is a great idea. I rather think that walking might be the hardest kind of exercise. I used to try rowing in the gym but I think probably went at it too hard.
     
  20. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Re
    Really interesting fibroite...

    So aquatic therapy which I guess is a bit different from swimming has been very helpful but other exercises have not been. Has it helped with your pain, energy, cognition?

    And myofascial release massage has been really good for sleep - that's very good to hear.......I hope that message gets around.
     
    Katie likes this.
Loading...