No Pain

[Joyce Heward]

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.

 

[jaminhealth]

A friend with CFS/ME says "no pain" issues. Major malaise.

 

[Joyce Heward]

A friend with CFS/ME says "no pain" issues. Major malaise.

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.

 

[jaminhealth]

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.

 

[IrisRV]

Define "pain". I have had flu-like muscle aches strong enough to keep me awake or to wake me up at night, but I wouldn't call that pain, except in the very general sense. I've also had the lactic acid burn feeling in my muscles, but again, that is pain in only the most general sense in my book. I've had some long and painful periods with a sore throat and ear pain, but they were not a consistent part of my ME/CFS.

Thank you. I have all the other symptoms, including severe malaise, but no pain.

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 malaise

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.

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.

If you have any doubt about your diagnosis, you should ask what criteria your doctor used to diagnose CFS. If he or she is not using a real diagnosis criteria, but going instead by something like "You're very fatigued and have a few other symptoms I can't explain, therefore I'm going to call it Chronic Fatigue Syndrome", you should ask for a more rigorous diagnosis based on a real diagnosis criteria. You do not want to accept a CFS diagnosis, for which your doctor will tell you there is no treatment, until the other possible treatable causes of your symptoms are definitely eliminated. It would be tragic if you were brushed off with the "untreatable CFS" diagnosis and left to languish if you actually have a treatable condition.

I hope for your sake you don't have ME/CFS. Fight the CFS diagnosis until they've clearly ruled out other reasons for your symptoms. Get your diagnosis verified by a doctor that actually knows something about ME/CFS (few doctors have a clue), if at all possible.

If you do have ME/CFS, and it sounds likely you do, welcome to the club no one wants to be in. This is a great community. There is lots of information, help and support here.

 

[Joyce Heward]

Thanks for your info, Iris.

The doctor I saw is new to me, as I moved about 6 months ago. He gave my symptoms as a basis for his diagnosis, and explained why he thought they didn’t fit with a thyroid problem. He was very kind and patient with me. My ten min appt went on for 40 minutes!

I have the post-exertional malaise, even from just brushing my teeth in the morning, well, afternoon. I am very, very fatigued, all day long, and my sleep is affected. I quite often don’t get to sleep until 3 or 4 a.m. and then it’s using audio books to drift off with. I’ve gone through all the Discworld series by Terry Pratchett in 6 months. I don’t want to leave the house, and I don’t want to see anyone. I am too anxious to drive. I drag myself out of bed up lunchtime to show willing. I can’t face housework. Everything is too much effort. My cognitive function has deteriorated. I can’t bear loud noise. Etc etc. Everything but pain and headaches, which, since I’ve been looking online, most people seem to suffer from, so I thought the doctor had got it wrong.

My recent blood count came back in range, including for the thyroid, which is what I thought my symptoms were.

I do also have emphysema which accounts for my getting breathless, and would probably cause a reproduction in cardiopulmonary tests

We got a little rescue dog to help me exercise (because of my emphysema) but I can’t cope with even the shortest walk. It wipes me out completely. My partner, who Lexi adores, takes her. In fact, he has to do everything, poor sod.

I’m having a blood test for celiac disease next week, and he’s sending me to talk to someone to get their evaluation.

Thanks again, Iris, for your kind welcome, and information. I will do what you suggest.

 

[Joyce Heward]

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, 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.

My doctor thinks I have CFS, and I’m trying to find out more, before I try to come to terms with it, and agree with his diagnosis. I was doubting it because a lot of people with CFS seem to have chronic pain and/or headaches according to various lists on symptoms, and I get neither, well, at the moment anyway.

 

[Joyce Heward]

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.

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.

 

[Cort]

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.

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)

 

[Joyce Heward]

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)

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.

 

[Cort]

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 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.)

 

[Joyce Heward]

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 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.

 

[jaminhealth]

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.

 

[Joyce Heward]

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.

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.
Thanks @jaminhealth