OMF: Muscle Biopsy and Plasma Study into Post-Exertional Malaise, David Systrom, 2022

Hutan said:
How interesting. I had a flare a couple of years ago now (I think, the years blur...) and I ended up with lumps. First one near my elbow, then I got them in quite a lot of other places, knees, ankles, more around the forearm, one at the base of a finger. The joint would get hot and sore and then I'd be left with a lump. I went to the GP, she wasn't very interested. Some of these lumps are marble sized, the ones on my ankles are the size of half golf balls. Some went away quickly, some slowly and some have stayed. Bubble wrap is not a bad description, they are firm, like a swollen lymph node.


I still have some large lumps. With considerable help, I got to a rheumatologist who wasn't very interested. I managed to get ultra sound, but only for the ankle lumps, why they could not look at some of the other lumps as well I do not know. I was told that the ultra sound scan just found that they were fat. The lumps are substantial and still there after all this time.

It's been so frustrating. These lumps would come up overnight, and I was really sick during that time. I know if I was a dog, the lumps would have been biopsied. I've considered paying to get them biopsied myself, privately, but it's a substantial cost and I'd need to find someone who would be curious and actually look at the tissue under a microscope.
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Ineresting. This sounds like a different issue. My lumps are not visible—they're under or within the skin/tissue layer, and not near joints. Nor are they as large as the ones you describe. Maybe we're all just lumpy.
 
InitialConditions said:
That's interesting. What is the disorder, if you don't mind my asking?
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Missed another reply, sorry! Lipoedema. There are others, including familial multiple lipomatosis and Dercum's disease.

The photos you see online are a bit misleading because they're usually of people with highly visible lumps and bumps. Most of mine aren't visible in that way; some of them are more flat rafts than nodules, and many are quite small.

Lipoedema and Dercum's are very uncommon in men, but familial lipomatosis seems to occur more often in men than women. From middle age onwards it's unlikely people would mistake any of them for a muscle problem, as by then it'll usually be obvious that it's subcutaneous fat. But when I was younger, I'd no idea—I just had points that were incredibly sore and tight if I touched them. They were over major muscles, and they weren't discrete enough for me to see that they were part of the skin rather than the muscle.
 
Sid said:
Same. I remember with horror school trips to various sports activities etc. after which I'd be floored the next day whereas no one else in class was. It wasn't PEM though. At the time it was just DOMS without flu-like malaise or orthostatic issues. I feel like I've been predisposed to developing ME/CFS for as long as I can remember.
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This was me too
 
InitialConditions said:
I don't think its the subcutaneous fat because the pain/soreness feels very muscular. I think I have issues with my fascia. Even before I got symptoms consistent with ME I always felt I had muscle issues — for example I have chronic problems with the IT band (essentially fascial/connective tissue) down the side of my thigh that affected me exercising, back when I was able to. They just got worse as my ME progressed. It almst feels like the tissue is scarred and hasn't repaired itself correctly. It's quite hard to describe. I don't think I've even brought it up with my GP because I don't think I'd get anywhere.

ETA: Oh, and I always had really bad DOMS growing up. I could barely walk some days after playing football. I would notice my friends/teammates didn't seem to be as affected. I wonder if I had some pre-existing condition or suceptibility to these sorts of issues, and my ME has just pounced on them.
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Exactly the same thing going on. 100% the same thing. I think it might not only be that ME sits on top of these symptoms, it might actually be the disease in its early stages.
 
DOMS is a new term for me (had to check the wiki). The mechanism (cell microtears) which results in cytokine increase, is what I believe triggered my PEM. It wasn't the duration of exertion that was a factor, it was the stretching of muscles in unaccustomed ways. I didn't have anything resembling DOMS before developing ME. DOMS could add to ME severity by adding to the cytokine load and possibly hormones or other chemicals related to DOMS.
 
Creekside said:
It wasn't the duration of exertion that was a factor, it was the stretching of muscles in unaccustomed ways.
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I think that's an interesting idea. I think duration can be a factor, but muscle stretching that causes a lot of micro tears could definitely be a major cause of PEM. The pilates that I did to try to exercise my way back to health was utterly diabolical in producing PEM - and that involved extreme stretching achieved with equipment. Would that fit with the idea that NSAIDS taken just before the exertion decreases the likelihood of PEM by reducing the response to the tissue damage?
 
Hutan said:
Would that fit with the idea that NSAIDS taken just before the exertion decreases the likelihood of PEM by reducing the response to the tissue damage?
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It would logically fit, if it reduces the inflammatory response and thus cytokines and other messengers. It never occurred to me to try that before exertion, and I can't test that now. Maybe someone with similar PEM triggering (uncommon muscle usage rather that magnitude or duration of exertion) could test that.
 
Creekside said:
It would logically fit, if it reduces the inflammatory response and thus cytokines and other messengers. It never occurred to me to try that before exertion, and I can't test that now. Maybe someone with similar PEM triggering (uncommon muscle usage rather that magnitude or duration of exertion) could test that.
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When I was mild I took ibuprofen almost daily to function, although that was when I already felt flu-ish.
 
V.R.T. said:
When I was mild I took ibuprofen almost daily to function, although that was when I already felt flu-ish.
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Did that allow you to avoid PEM that you otherwise would have expected to suffer, or was it just reducing some general symptoms? Aspirin and ibuprofen had no effect on my ME symptoms, although I didn't even know about PEM at that point, so I wouldn't have noticed "missing" PEM.
 
Creekside said:
Did that allow you to avoid PEM that you otherwise would have expected to suffer, or was it just reducing some general symptoms? Aspirin and ibuprofen had no effect on my ME symptoms, although I didn't even know about PEM at that point, so I wouldn't have noticed "missing" PEM.
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Im on ibuprofen constantly and don’t think that it helps anything ME-specific. It’s interesting because the bits it’s for I can really tell when I’m taking it late as it’s like they are on fire and x hours later you realise the inflammation has been calmed. And as I’m taking it before PEM and in PEM I’d sort of think I’d notice if it changed those other bits. What it has made me realise is how different certain injuries are to other bits that are not those?

And yet when I get PEM I have always had a very specific pattern of deep aches in hands/wrists and feet/front of ankles and I don’t think the ibuprofen does a darn thing for that. Which is strange given it feels either rheumatic or inflammation. It may be that when on high steroid as well as ibuprofen that did start helping that part a little but I can’t be sure. And as its probably also related to movement of a certain kind partly it’s very hard to isolate those bits.

I now also get a weird horrible thing in my legs which is very muscular and like a form of up regulation lasting for around 12hrs that happens about 36hrs after ‘exertion’. Given how bad that is I think it does nothing for that. Ie nothing inflammation reducing stops that reaction and I think it’s orthostatic related/electrolyte balance affected as I’m needing the loo so often etc during it

I used to have -for decades bone-deep pain which did the first years was calf-based after doing too much deep muscular much bigger than when I used to properly train as an athlete but wasn’t ill and had done as much to that muscle as you could ie a level you couldn’t achieve from exercise without ME but just from eg driving. Like something just happened and the effect from exerting that muscle was just multiplied hugely, so activities that would be causing something you might only just notice before were suddenly affecting your gait level.

in later years it moved round to the front and I’d say shin pain but it was tender constantly deeply sore all in the flesh at the the front. I had a hunch it was just from walking at work as it never went because I never got a break to that extent but it was worse when walking increased eg because car parks moved.

That has gone now I’m not doing that exertion on it constantly and not because of the ibuprofen *I think (sometimes I feel it but I remember it being constant and deep in comparison and genuinely thinking it was 'something else') because I can sometimes gets bits of it, so reckon the exertion still does the same. On the other hand it could be it has improved it (the chronic bone-deep but but not the acute) - I will never know because of the timings of both.

as these are all in the same general area as the horrible PEM lower leg torture I currently get then I can’t help wonder if they are different but the same ie the reaction from whatever over the years is operating differently in a very different body. And of course the bone deep pain was a cumulative thing vs the others being more ‘acute’

anyway that’s just some of the PEM stuff I’m picking out because of the ibuprofen question. Lots more going on re both PEM and fatiguability with me too (so wouldn’t want to give the impression‘that’s’ PEM on its own)
 
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bobbler said:
Ie nothing inflammation reducing stops that reaction
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My ME included muscle aches that didn't correlate with physical activity, but did correlate with other ME symptoms. On bad days it affected my whole body, but more often it was focused in my front thigh muscles. NSAIDs and pain relievers had no effect on the pain. LDN blocked that pain very effectively, and was more effective when taken sublingually, so I think that indicates that it was a brain processing of nerve signals problem. Maybe you have inflammation problems and brain misprocessing of the pain signals.
 
I had migrating muscles and joint aches during PEM earlier in my illness but no longer experience this in the last 20 yrs.

I pace so that I no longer get PEM, but sometimes I do feel deep muscle aches and fatigue after long walks mostly during the winter months.
 
Mij said:
but sometimes I do feel deep muscle aches and fatigue after long walks mostly during the winter months.
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Me too, but I think that's because 2.5 hrs of hiking in hills is honestly tiring. I'm just so thrilled to be able to enjoy long hikes again that I keep doing it. I don't know how long this respite from ME aches and lethargy will last, and the autumn weather is nice, so I'm taking advantage of it.

I honestly can't remember how sore/tired I would have felt pre-ME. Are my cries of "Ow, ow, ow!" on getting up from my chair after resting after a long hike normal? I'm also 20+ years older than when I last hiked pre-ME. Oh well, I'll just enjoy as much as I can while I can.
 
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