Rheumatoid arthritis - including exercise intolerance

So, as someone Dxed with both juv-onset rheumatoid arthritis (now called juvenile idiopathic arthritis) and now ME, I was looking into something and came across this:

Is the Exercise Intolerance in Rheumatoid Arthritis and ME/CFS Similar?
https://www.healthrising.org/blog/2...e-in-rheumatoid-arthritis-and-me-cfs-similar/
As someone without a biology background, I don't know if this blog article is legit or not. Hoping some folks here can tell me. I searched for this blog post on this site and didn't see that anyone had previously posted it, which makes me suspicious of it.

 

Hi @SunnyK

Health Rising is a legitimate website, having just completed its 10th anniversary. The founder, Cort Johnson, is a long-time ME veteran.

This is his steady blog about ME, Fibromyalgia, Long COVID etc. He has interviewed several scientists who research these diseases, and more. I understand he also attends ME conferences and reports on them.

I think there is probably info about Cort's website on ME-pedia.

Hope this helps.

ETA: fixed punctuation

 

Fatigue is a big – and mysterious – issue in RA as well. Fatigue is common,yet the medications which improve the joint problems in RA have smallor quite modest effects on fatigue.

This is just plain ignorant. There is no mystery to fatigue in RA. It is due to cytokines. The most dramatic aspect of the first trial of the TNF blocker infliximab by Tiny Maini was that not only did it abolish signs of joint inflammation but the patients' fatigue vanished within a day. All the effective biological treatments for RA will have as much impact on fatigue as on joint inflammation.

No doubt some people with RA and other inflammatory arthritis have other reasons for fatigue - maybe ME - but that is beside the point.

 

Thanks, @Hutan @Trish @DokaGirl @Jonathan Edwards for giving me more information about Cort and also links to research and other relevant threads on this site. You all are incredibly helpful. And thanks to whomever renamed and moved this post to the appropriate place. When I've recovered from holiday (i.e., 6+ weeks of family events) PEM, I am going to spend a lot more time on this site getting to know the various forums, reading posted articles, etc.

Honestly, I sort of panicked when I read Cort's blog post on "exercise intolerance" in RA, because I was diagnosed a week ago as having ME, and reading the blog post made me wonder if I was misdiagnosed--i.e., if my PEM and other symptoms were due to the RA (although my juv. onset idiopathic arthritis is a slightly different disease than adult RA, most of the treatments are the same) rather than to ME. (My tendency, especially with my health stuff, to go into Occam's razor mode--why think I have yet another health condition when my symptoms could be explained by something I already have?) I think the panic is partly that the ME clinic folks were FAR more understanding and helpful and knowledgeable about my symptoms than any other healthcare professional I've seen in the past 28 years, and I don't want to have to stop seeing them. (Also, before my appt at that clinic, I talked to my rheumatologist, the same doctor I saw back in grad school because he was highly recommended and who's been practicing for at least 35 years, and he said that my symptoms--the PEM, the dizziness, the nausea, the heart palpitations, chest pain, etc.--were NOT symptoms he's seen in other RA patients with normal inflammatory markers but debilitating fatigue.)

But it's also that, in the US at least, exercise is *highly* recommended for anyone with RA. The major research/advocacy organization in this country for rheumatological diseases, the Arthritis Foundation (for whom I volunteered at one time) has a patient publication called Arthritis Today it sends to AF members, and I actually ended my AF membership because they wouldn't stop sending me AT, which went from articles summarizing interesting current research and reviews of arthritis-friendly gadgets and such to article-after-article on exercising and dieting to lose weight. (I know this is anecdotal "evidence," but I've had some of my worst RA flares when underweight and know of several people whose RA was not well controlled when they were at so-called healthy weights.) I've pushed myself to exercise too hard over the years believing it was necessary for the management of my disease, and if I go back to the assumption that exercise is essential for RA management (and I do know that, if one can do it, muscle strength is helpful for joints, so I'm not discounting it entirely), I will have a very hard time giving myself permission to rest and not do the exercise push.

Hmm...maybe this post should've been in the "Emotional Support" forum.

ET: Adding: I realize that Cort's blog post is actually about research that supposedly shows exercise may not be the best thing for RA, or at least not well tolerated, but as others have pointed out, there are holes in his argument and very possibly holes in the research he cites, though I would need to look at that. I am certain the majority of doctors in this country will still recommend strongly a regular 150-mn/week-of-moderate-exercise program for folks with RA.

 

This is interesting, Jonathan, especially in relation to my experience with RA. Do you know of studies for other biologics than infliximab that show substantial fatigue improvement? I first went on etanercept (one of the first biologics for RA--couldn't do infliximab because it's given by infusion, and I'm not a good candidate for infusions for various reasons) in 1999 and have been on it ever since. It has mostly kept my inflammation under control but has done not one ounce of good for my fatigue. This could be because my fatigue is due to ME, not the (j)RA, but I have had three well-educated and -respected rheumatologists tell me over the years that there just aren't medications out there that treat RA fatigue effectively. So I'd been led to believe that the biologics would not, as you say, "have as much impact on fatigue as on joint inflammation." But again, I'm going by what three doctors have told me--I assumed they based their statements upon research, but they certainly could've been missing something.

 

There is always a lot of pressure from healthcare professionals and charities to exercise but I don't think there is any reliable evidence for exercise being important in prognosis for inflammatory arthritis. It is important to retain mobility but that can be done by loosening up gently each day. Children are different, I think, because they do not have a sense of taking responsibility for their own independence and mobility. They may sit in a pushchair if encouraged to, and get stiff. I think physios have an important role for keeping young patients mobile but not for adults.

If inflammatory arthritis is not controlled it will be associated with fatigue. If inflammatory markers are normal there may be fatigue for those struggling with damaged joints but I never came across anything like PEM as I hear about it in ME.

 

Thanks, Hutan. I did check out the LIFT thread--quite a fun read, with everyone's wry remarks. I'm saddened (but not surprised, given my experience with the medical field in the US, at least) that CBT is still touted as an effective treatment for ME, or for RA, or for any non-psychiatric illness. I've had CBT in the past as a treatment for anorexia and anxiety, so I have a reasonable understanding of what it is, and while certain CBT exercises were helpful to me for, say, body dysmorphia, I can't see how I could "think" my way out of the symptoms I experience with my fatigue. And as for exercise intolerance with RA--well, I know I'm not the only one with the illness who would LOVE to be able to exercise more and not have it leave me bedridden afterwards.

 

I would respectfully suggest that they have not got an accurate message across. I knew Tiny Maini well and was involved in other TNF inhibitor trials. I initiated the use of Rituxan and also had experience with Actemra, etanercept, Humira etc. Fatigue responds well to all of them. I have spent hours looking at trial data. That is what it says. There will be people whose fatigue does not get better but that to me suggests some other mechanism.

 

Thanks, Jonathan. Definitely, in my own experience, fatigue comes along with inflammation, though my fatigue long ago with severe joint inflammation was nothing like the fatigue I've experienced for the past 28 years. In childhood, I would need naps and would go to bed early, but I didn't have sleep disturbance (other than when pain was severe) or nausea, dizziness, chest pain, sore throat, and I definitely didn't have any sort of cognitive impairment.

I agree with you that children with JIA need some physio help, and I trust now that pediatric medicine has evolved such that young patients are gently encouraged to move rather than shamed into it. (I was regularly told by my doctors that if I exercised more my arthritis would improve, as if exercise itself could stop inflammation.)

 

Wow--well I would definitely defer to you with your research experience, Jonathan. My doctors were probably going upon experience with specific patients rather than upon solid research. Thanks!