The one thing consistently recommended for fibromyalgia is exercise. The one thing we would rather not do is exercise because of the pain and fatigue it causes and the post-exercise malaise as well.
And yet, for me, it is a necessary evil regardless of how difficult it is. But it is quite difficult. It is necessary given the amount of rest I Also need due to my comorbid vertigo. All that rest and downtime is really causing a lot of pain issues.
What I mean when I say exercise
I mean mild to moderate exercise that we very, very slowly work up to. Not jump right into. Infinitely slowly build up to. You can start as I did as little as two minutes a day and very slowly increase that as you go, up to one would hope 30 minutes three times a week. I can do 20 minutes on my stationary bike (level 1) three times a week, with some mild stretches. Pacing is very important here. Just because it is a good day doesn’t mean you do More, because that could easily flare you up. And no one wants that boom and bust cycle. Just be consistent in your slowly increasing pace. That pace can be as slow as you want. I tend to stay at one level a week or so. But that entirely depends on what my body is telling me. Some levels require a more extended time level. And that is totally fine.
When I was at the pain clinic and it took me six months to work up 20 minutes on my stationary bike I thought that Sucked. But they thought my progress was pretty good. So what I thought was very slow was actually at least consistent and paced Progress.
Conditions that complicate exercise for my other than fibromyalgia
It is rare that we have fibromyalgia Without comorbids. And comorbids can really interfere with our capacity to exercise. And limit what Sort of exercise we can actually Do.
- Chronic dizziness and vertigo- This means I cannot do any sort of head movements, bending and such. So I only do walking or my stationary bike. I also can only exercise in the early morning when my symptoms are less because my medication is working, sort of, and even then, there are consequences. I really need to crash after for a few hours to get even limited functionality back. I have to say, I think exercising with an unmanaged vestibular condition isn’t recommended. But at this point, it has been unmanaged for too long and I am losing mobility due to pain. So it flares my symptoms up a whole lot but I really have no options here.
- Joint hypermobility syndrome- Some of my pain isn’t fibromyalgia pain but from my joints. And specifically my knees have always been very bad for this. Exercising causes a lot of knee pain. So I need to also do physio exercises to strengthen my knees. I have no idea if this works because my knees hurt like hell still. So I have to make sure I only exercise a certain amount of times per week with downtime, and take care of my knees after each workout. Also some types of exercise are just out of the question. Oddly, one of those is yoga- I really overextend myself and it causes injury. I’m thinking of getting knee braces.
- Chronic migraine- I can’t exercise with a full-blown migraine. So this can really mess up any routine. Exercise is said to help with migraine disease, so that’s good. But it sure as hell interferes with trying to do it, so that’s bad.
Specific problems with fibromyalgia and exercise
- Pain- It isn’t pleasant. I mean, you never exercise to the point of extreme pain. But it always hurts. In ways you think it shouldn’t. Like the more you exercise the more areas actually begin to really hurt more and more. Like my knees, my hip, my lower back, my shoulder, my neck. I am not sure what to do about that, other than try to limit the times I workout per week. And monitor the places that hurt excessively. But everywhere else will hurt while I exercise and after. Obviously. The first 10 minutes on the stationary bike is always painful and quite hard to get through- but then it decreases. I never really understood this endorphins concept. I mean, I do stretches. And physio exercises. And I pace. And all that really happens is that I do gain endurance, as in, I can eventually do a bit more of it. At no time does this feel good. So I have no idea how people get that vibe from exercise of any sort.
- Weakness- After exercise I am so weak I can barely walk or function. I have to lay down for a few hours. It would be impossible to go up or down stairs, for example. Just extreme weakness. Jello legs.
What happens when I do not exercise
I have a bit of an extreme example of what happens when I do not exercise. And do not Do anything. And rest too much.
We already know if we are in one position too long it will hurt, so we need to move about. Being completely inactive is like that but way worse. When my vertigo was unmanaged I couldn’t function at all. I couldn’t do anything without flaring the symptoms up severely. I basically just rested all day long.
All that resting was brutal on my fibromyalgia pain. But I couldn’t even sit upright for long without the vertigo flaring. So hard to do anything at all. So the fibromyalgia pain got worse. My muscles got weaker and that just made the pain even Worse. As you can imagine this did not improve my functionality. It is like a fibro flare but all the time. And it became pretty painful to just lay down, which is about all I could even do. So that is a problem.
So I know complete inactivity due to vertigo really is a bad idea for fibromyalgia. And it has impaired my ability to exercise at all even since my baseline pain is way worse than it ever has been in the past. So not cool.
Things I have to do in addition to my exercise bike
- Epsom salt baths to ease the muscles after
- Pain creams on my knees/ ice for my knees
- Physio exercises focused on strengthening my knees
- Immediate rest to calm down the vestibular symptoms that flare up. A good 2-4 hours depending on the day.
- Stretching before and after- just gentle stretches.
- My medication- which at this time is Flexeril and with exercise I need my max dosage. This is all I currently have to manage the pain and it doesn’t really do much at all.
Benefits to exercise for fibromylgia in my opinion
Exercise does not seem to have any benefit at all in pain management or helping with the perception of pain. So baseline pain is currently still higher than normal from my lack of exercise for a year. Flare-ups remain as painful. Nor does it help with fatigue management. I think it actually flares up certain areas of pain that wouldn’t normally flare-up. And I rather do not like that. Especially the knee pain. But maybe over the long term that wouldn’t happen, who knows? But my experience for longer-term, it hasn’t helped at all with fibromyalgia pain intensity in the past either.
All it seems to do is help with actual muscle maintenance. As in, when I was completely inactive and resting too much, this flared my pain. Some consistent activity manages that. And I do not want my muscles to atrophy and make my pain worse. So, basic maintenance. Maintaining mobility and functionality. And endurance. These are all good things, of course. This takes time and regular mild/moderate activity.
In regards to the difference to No activity compared to Some exercise, yes, there is a difference in overall pain. Like I said, if we sit too long, stand too long, lay down too long we will notice the pain with fibromyalgia. So my complete inactivity duration with vertigo did massively increase my fibromyalgia pain. Modest activity (minor exercise, minor stretching, mild housekeeping) all helped reduce this slowly by getting me to move. So it does, in that sense, help a great deal in pain intensity.
For people already doing moderate amounts of activity in the day from normal living activities and not disabled by vertigo, I cannot say what improvement in pain intensity there would be from exercise. I was never able to exercise and work simultaneously- too much pain and fatigue levels already. I was only ever able to exercise when I wasn’t working- as a sort of Replacement activity for the Lack of working.
However, I have noticed in the past (prior to vertigo which is hard to tell now) it helped with mental clarity and stress reduction. I do a lot of things for stress reduction and this was one component to it.
So literally this is a small, but important, facet of fibromyalgia management but really just a component added to all the other things we do to manage our fibromyalgia. I do it because the vertigo was decrease my capacity to function physically and increased my pain. And without work as a form of movement, I need some sort of replacement activity for basic movement. None of my exercise is aimed at anything other than maintaining basic functionality.
What I do for exercise (not on the same day. About 3-4 times a week)
- Walks (15 min)
- Stationary bike (20 min level 1)
- Physio specific stretches and exercises (on the day I walk)
An overall review of exercise research stated:
A variety of exercises were used as treatment for FM symptoms, with positive results. Most of the reviews investigated the effects of aerobic exercise and strength training. No serious adverse events were reported. The largest effects of exercise were seen in terms of improved pain intensity and quality of life. Altogether, exercise may be an effective treatment for FM symptoms. Thus, aerobic exercise and strength training are effective programs for the treatment of FM. By summarizing the findings and effect sizes of the reviewed studies, we observed that the evidence for improvement of pain level and quality of life was the strongest. The results have potential to influence evidence-based practice. Future studies should analyze the long-term effects of exercise.Science Direct
As you can see with this review of the research exercise can have some positive results. “You may be reluctant to exercise for fear that it’ll aggravate your symptoms, but research shows that regular moderate exercise lessens pain and improves function.” Mayo Clinic
I have never experienced it lessening pain but I agree it improves functioning. Certainly, maintains functioning. It helps with endurance as well. Like how far I am capable of walking- but it doesn’t change the pain level for that because pain and walking are very variable. Sometimes walking for 10 minutes causes a lot of pain, sometimes you can walk longer before a lot of pain starts. But exercise will make it possible to walk for longer- it just doesn’t control the level of fibromyalgia pain we may or may not have during that time. Like I said, it is maintaining the functionality but for me, it isn’t doing anything for the fibromyalgia pain levels. I want my body to be capable of doing things when I can do them. But it doesn’t change the fact I need to pace and everything I do has consequences. Or the fact pain is variable and some days it is just severe.
But that is in my experience only. At this time. And I am only capable of 20 min at a time. Even in the past prior to vertigo I only ever did 30 min 4x a week moderate exercise on the stationary bike, plus walks, and some physio exercises. And that didn’t help with pain management either. So maybe if someone did more than that it would. However, for me, maybe because of the hypermobile joints, exercise is always a painful venture. So I’m not sure I would be the sort that would exercise an hour or more for fibromyalgia pain reduction while simultaneously increasing pain in other areas.
But I do believe any sort of exercise is good. Even a 20 min walk 3 times a week has some serious benefits. And the benefits to exercise are plenty. Even if not for pain reduction. With my knowledge that complete inactivity due to the vertigo massively increased my fibromyalgia pain I do know I need to do some mild/moderate activity even with the dizzy/vertigo consequences.
So I will continue to do whatever I am capable of doing, whenever I am capable of doing it. Problem is, sort of screws me on the vertigo side of things so sort of wish I was still on the meds that made that at least bearable for a portion of the day. But, if I do not maintain some level of motion and activity given the level of rest I need to do with the vertigo (and that’s a lot of downtime in the day) I’ll be using my cane for more than balance and vertigo– it will be because of pain and difficulty walking altogether.