Joyce Heward
Member
I don’t have pain or headaches. Is this common with a CFS/ME diagnosis? I am reading both in symptom lists.
A couple of people have told me, elsewhere, that they didn’t have pain in their early stages.
Thank you. I have all the other symptoms, including severe malaise, but no pain. I was thinking my doctor might have been going down the wrong path with his diagnosis. You’ve reassured me, if that’s possible.A friend with CFS/ME says "no pain" issues. Major malaise.
Pain is not an absolute criteria in any definition. What's critical is not simply malaise, which can arise from many conditions, but post-exertional malaiseThank you. I have all the other symptoms, including severe malaise, but no pain.
That said, some of us are so impaired that even everyday activities like taking a shower or walking across a room is sufficient exertion to cause malaise or exacerbation of symptoms. In that case, the patient is constantly in a state of post-exertional malaise and may not recognize that it is the result of exertion. It's just ongoing malaise as far as they know.Post-exertional malaise (PEM) PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2-day cardiopulmonary exercise test) and impaired cognitive function after exertion. There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS (SEID) from other conditions.
Thanks, bestazy. Yes, I know it’s not fibromyalgia. I have a friend who is badly disabled with fibro, so I know a little more about that than CFS.Hi all ! I'm new here. In my view hat's CFS, not FM. I get that all of the time when I do anything using my arm or leg muscles. However, that kind of pain goes away when we stop what we are doing. FM pain is all of the time even when at rest. I've had CFS for over 25 years now and never went on to develop FM even though my muscle pain started in the second year of CFS.
Thanks, jaminhealth. I will look at supplements and alternative medicine when I’m happy with the diagnosis. At the moment, I keep forgetting my regular medicines for my other ailments so daren’t start anything else just yet.My friend works with about 100% supplements and is on the other group PR, and her latest doctor she is seeing works with Auyervedic medicine.
Lots of people with ME/CFS have pain - most people do - but studies show that a significant subset of ME/CFS patients do not experience pain. (You are not alone)I don’t have pain or headaches. Is this common with a CFS/ME diagnosis? I am reading both in symptom lists.A couple of people have told me, elsewhere, that they didn’t have pain in their early stages.
Thanks, Cort. I wondered if the doctor was going down the wrong path because I didn’t have pain or headaches.Lots of people with ME/CFS have pain - most people do - but studies show that a significant subset of ME/CFS patients do not experience pain. (You are not alone)
I think you're just on one end of the ME/CFS/FM spectrum. Dr. Bateman talks about people on the different ends of the fatigue/pain spectrum. (Of course get everything checked out to be sure that it's anemia or something like that.)Thanks, Cort. I wondered if the doctor was going down the wrong path because I didn’t have pain or headaches.
There’s so much to learn about ME/CFS.![]()
I did think I was anaemic, and when I checked the blood tests, my folate is low again, so the doctor has put me on a month of folic acid. It will be interesting to see what difference it makes to my symptoms.I think you're just on one end of the ME/CFS/FM spectrum. Dr. Bateman talks about people on the different ends of the fatigue/pain spectrum. (Of course get everything checked out to be sure that it's anemia or something like that.)
I’ve just been prescribed 5mg bog standard folic acid, the same as I’ve been given in the past. I’ve got an appointment at the surgery on Wednesday, so I’ll ask about Methyl folate. I’ve noticed a few people have mentioned that it’s a better choice.Methyl Folate is what I take...it's the more active form of folate. I usually take 400mcg daily. It's also part of the protocol I take for lowering homocysteine.