Post Exertional Malaise and Diagnosis

[Lucie]

I'm sure this has been talked about somewhere, but I don't have the strength to find it.

Can a person have post exertional malaise and *not* have ME/CFS? My doc said FM and ME/CFS were essentially the same thing. I also recall Dr. David Bell saying something similar.

I feel like I'm in the middle. I don't have the extreme pain of FM, but I didn't have a viral onset to my cratering symptoms (anaphylaxis prior to onset). The major ongoing symptom is the bodily depletion and post exertional malaise after too much activity. Each time the PEM takes me permanently to a lower state of functioning.

I thought my doc had diagnosed CFS, but it is not written down. Two docs have said "probable."

Another question I've wondered about is, Did those who tested positive on XMRV and the viruses in the NIH study have viral onsets or did any have other onsets?

Glad some of you have better cognitive function than myself and are able to explore the papers and posts and retain the info.

Thanks,
Lucie

 

[Frankie Dene]

I'm a bit tired too but in the Webinar talk by Dr Bateman (around July 11 2010 with Dr Rocaniello )he said that he believed those with PEM are the true ME/CFsers. (Other symptoms also need to be taken into account of course) Certainly it seems to be a crucial symptom for diagnosis

 

[helen41]

I was frustrated trying to convey to my Dr and others just what PEM feels like. I had my exertion tested as part of a research study in California. They measured my ability to exert myself 2 days in a row. Day 2 my measurement was 32% less than day one, and normally people remain the same. I know it usually takes 2 days for my symptoms to really show, so I can only imagine what the measurments would be then. It's a real, debilitating problem

 

[rlc]

Post exersion malaise can happen in numerous medical condition. most people with any kind of serious illness are going to feal worse with exercise. Chronic fatigue is also a symtom of numerous diseases. Do you have any failed test resualt? what have you been tested for. You may have CFS but i would be very careful about excepting it as a diagnosis without being properly investigated. Once you have it as a diagnosis it can get very difficult to get more tests done, did they find the reason for anaphylaxis? Have you been checked for thyroid problems, adrenal problems, diabetes, celiacs, vitamin D and B12 defeciencys, sleep apnea, hemochromatosis and lupus these are things that can be misdiagnosed as CFS. hope this helps please make sure your docs investigated all possibilities. they do make mistakes
.

 

[lucy]

I need help to understand something about PEM. I have DOMS, delayed onset muscle soreness or as they also call it mechanical muscle hyperalgesia - lots of lots of pain in the muscle after some activity. The pain starts about 1 day after the activity, lasts for 4 days, and half a year ago I would always have 1 day of migraine afterwards. Moreover, only some muscles hurt, I guess only those, participating in lengthening contractions, just like in definition of DOMS. Examples of activities are: walking on a flat surface 40 mins is ok for my legs, while 10 mins slightly down can hurt so that I change my gait not to use those sore muscles (I put my legs in front of my like wooden logs). Another one: Cutting 60 cm of cardboard with scissors, left my thumb muscles in pain, or watching through the telescope I had pain in the muscle around my eye. As i understand it is different from PEM. I am slightly more tired when I get doms, but not to the extreme, like 20 percent more tired. So, do I get it correctly, that PEM is different? Also, does anybody else have such doms? I constantly run into this kind of pain, because after feeling better for a while, I have hope I am on the road to be ok, and try out a short walk up and down. I noticed there is zero improvement - if I do this walk one Sunday, and try same the next week, next week is 50 percent more painful than previous one. As any animal would stop for a while at least, after I get those 4 days of doms, my intentions to have such walks dissapear

 

[heapsreal]

i think doms can go hand in hand with pem. I definately know what u mean by repeated the same walk a week later and feeling worse, i think this just shows how slowly we recover from aerobic type exercise, but then we cant exercise enough to improve our fitness. I think what your exerience is a type of pem, but sort of like a very rapid detraining like effect. I have tried many times to improve my aerobic fitness and always come crashing down, a couple of times tried to 'push' through the pain barrier, but this just made me crash harder and faster. The only exercise i have found that i can do is weight training, but not your typical type where your huffing and puffing, i keep repetitions low and make sure im not breathing heavy, sometimes only doing 1 rep at a time. i also keep total workouts very short and no more then 2 times a week and i dont hesitate to take a week or 2 off as i have learnt trying to push it ends up in a prolonged crash. It really sucks for people who were gym junkies pre cfs.

cheers!!!