Could I be suffering from CFS
Posted , 8 users are following.
I was diagnosed with GCA and pMR over two years ago! I have been on the steroid route with ups and downs!!
I continually have cold symptoms but it never turns into a full cold, just runny nose and sneezes!
I have pains in my legs and suffer from chronic fatique! This is worse after i have done any form of exercise! No matter how much sleep I have Im still tired and lack energy!
Im beginning to think that I am suffering from something else!
After speaking to a friend I researched symptoms for CFS and they seem to be all the symptoms Im experiencing.
Just wondered if anyone had experienced anything similar ?
0 likes, 6 replies
EileenH anne28129
Posted
Fatigue is a common component to almost all autoimmune disease and the experience is much the same whether it is PMR, lupus, rheumatoid arthritis - or CFS.
CFS is fatigue that cannot be explained by an underlying medical disorder - if you have a diagnosis of PMR/GCA with any specific markers then you have proof of an underlying medical disorder, an inflammatory one. I assume you improved originally on steroids? That alone suggests it isn't CFS because CFS doesn't improve with pred which deals with inflammatory problems.
I'd say it is more likely you have reduced the pred too far - at what dose do you feel better in terms of pain? The fatigue is ongoing, it must be managed by pacing and resting appropriately. And the fact it is worse after exercise is also typical of PMR: the actual underlying autoimmune disorder is still there in the background, chugging away and making your muscles intolerant of acute exercise. You develop sore muscles in response to exercise more easily and it takes longer to heal. All the pred does is mop up the inflammation to relieve the symptoms while you wait for the a/i disorder to burn out - which it does in up to 6 years for half of patients. This isn't a sprint - it is a marathon and you have to do your bit by taking the right dose of pred and lifestyle changes as required.
This link to a post on another PMRGCA forum has some links in it that may help you understand:
https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...
anne28129 EileenH
Posted
Thank you so much Eileen for the quick response!
I understand that my initial diagnoses was correct and my pain has been under control for several months. But, the other symptoms are still with me, especially the tiredness and flu like symptoms!
I also feel sickly for large parts of the day !
EileenH anne28129
Posted
I hate to have to say it but that is quite "normal" with PMR or GCA - especially if you try to do too much during the day. They are as much due to the underlying autoimmune disorder itself as the symptoms we call PMR or GCA - the immune system is attacking your body tissues just as it would attack invading microorganisms so you feel as if you have flu.
I rarely suffer from fatigue for two reasons (I believe at least): I don't compromise on dose, I take what I need to live well, and I know what my limits are and very rarely exceed them. Very occasionally - travelling or on holiday usually - I have less control over what I can say no to and after a couple of days I may hit a brick wall of fatigue when I feel very nauseated and just have to lie down and sleep. Mostly all I need is a couple of hours in bed and I am human again but if I continue to do too much I know about it.
anne28129 EileenH
Posted
Thanks Eileen
Ill take your comments on board and start to say NO when Im asked to do things that I know will tire me out!
Forgot to say happy and healthy 2020
ptolemy anne28129
Posted
My mother had CFS. There was no way she could do any exercise, she was so tired. She just sat in a chair and found that she was very cold all the time. I have PMR and I have been suffering from deathly fatigue recently probably caused by adrenal glands having to wake up, could this be what is happening with you?
janet06653 anne28129
Posted
Six years ago when I was 63 I was diagnosed with GCA and PMR .
the first 2&1/2 years I was tried all of the time and felt worst after exercising. Then I retired from a high stress job requiring long work weeks. In the first 1 &1/2 years of retirement I slept long nights and had frequent naps.
I have just tapered off Pred for the second time and am on weekly doses of tocilizumba. I have modified my daily work outs and now take a practical approach to my life. I am more relaxed and have come to terms with my 2 diseases. I do not need to nap and my workouts do not leave me sore. I suggest you keep your Dr informed on how you feel It is no use coming off pred too quickly. These 2 diseases are life changing, but I now enjoy each day, I travel, ski, swim, walk, and enjoy friends and family.