Quote:
Originally Posted by in_newengland
I no longer suffer from the pain but I endured it for many years. Once, in 2000 and again about 2009. I have the more general version, that the drs call chronic fatigue syndrome and the muscle pain and weakness is considered a part of it.
I am very thankful to be rid of the debilitating muscle pain. You can read my other posts where I speak about it. I am also extremely sorry that you still have it. It ruins your life totally.
I endured visits to probably 50-100 doctors over the years and no one offered any help at all for the CFS. Finally, in the mid 90s one dr who had the illness herself, did help me with diet and allergy shots. I had become allergic to almost everything. Obviously I was unable to work. The pain component had been so bad for this dr that her husband used to carry her to the bathroom. She was able to get rid of the pain and also to control the rest of the symptoms (brain fog, fatigue, weakness, headaches, feeling like you have the flu, etc.) because, being a dr, she had access to the best knowledge available.
At that time I had not developed the pain of fibro yet. That came after moving out of my house and straining my muscles moving boxes and furniture. It was accompanied by chills, fever, and dizziness which took many months to subside. I took anti virals which helped, I think. Then I was able to see a fibro specialist in Boston. His advice to all of us (there were so many of us, that he held group appointments) was aerobic exercise. Many protested that they were too weak and in too much pain to exercise. I was one who complained that there was no way I could exercise. Everything I had read said to exercise but how do you do that when you are so weak and in pain every time you exercise?
His advice to me was twenty minutes a day of aerobic exercise in a heated PT pool. This consists of stretching, moving in the water, gentle exercise. I went to the Y and joined an arthritis class that was held in the heated pool. Luckily the instructor knew about fibromyalgia and cooperated with the dr in setting up the right kind of non strenuous exercises for me. I went several times a week to the pool and did the easy floor exercises she gave me at home. It took many weeks but the pain did eventually go away.
I continued to suffer from the other symptoms but at least the pain was gone--until I came down with a virus abt 2009. I tried the gentle aerobic exercises in the warm water pool again. Once I went to a rheumatologist and he was absolutely clueless and unhelpful--they will put you on medicine that doesn't work and they often advise exercise--but the wrong kind of exercise, such as strengthening exercise, will only make you worse. You should not be putting extra weight on the joints or you will end up with osteoarthritis as the muscles are too weak to do the work and the joints will take all the stress.
Yes, it is terribly frustrating to have this illness and get absolutely ZERO help from doctors. I am not telling you I cured it "with a bit of exercise." I am telling people that this is what a highly respected fibromyalgia specialist recommended and that it took quite a while but it did work for me. For those of us who suffer and have suffered from this debilitating illness, we need to stick together, not attack each other.
If you are not familiar with this site, you might give it a try. Fibromyalgia | Phoenix Rising ME / CFS Forums I sincerely wish you the very best of luck. |
First of all, as far as I can see nobody is attacking you, I just state common knowledge about Fibromyalgia. By the way, CFS and fibromyalgia are two different illnesses. They have some similar symptoms, but CFS is curable, fibromyalgia isn't.....yet. Here some of the symptoms we fibros are having:
Pain is the core symptom of fibromyalgia, but not the only one, there is a whole lot more symptoms, but everybody talks about the pain. Different people feel the pain in different ways. Fibromyalgia pain may be felt as:
Chronic pain
Deep pain
All-over pain
Aching pain
Radiating pain
Shooting pain
Tender pain
Other very common fibromyalgia symptoms are:
Sleep disruptions
Chronic fatigue
Problems with memory and thinking clearly (sometimes called "fibro fog")
Problems with depression and/or anxiety
Irritable bowel syndrome,
restless leg syndrome,
headaches and or migraines,
Frequent facial/jaw pain and/or limitation in jaw opening, sudden tooth pain (without having a bad tooth
that region, dry mouth, blocked sinuses
chemical sensitivity, light and noise sensitivity
numbness (with me it started at my legs and now I have numbness nearly all over my body
and others
Thank God, you normally don't have all the symptoms at once, lots of them come and go, what is always
is the pain, the fatigue and depression and of course the numbness.
Exercise does help if you are very, very careful and don't overdo it, but it can have backlash very easy. I have fibromyalgia now for 35 years (I am 62 now) and had every treatment under the sun as far as I can see, when I look what is new.
Medications - nothing really helps against the pain, some work for a while and than nothing or other symptoms get worse, like insomnia.
Acupuncture didn't help me, but I know it can. Maybe I haven't found the best acupuncture doctor, I can't say. Vitamins and mineral deficit doctor (I don't know the proper name) (I had big gaps there), but it didn't really help with the fibromyalgia. Physiotherapy on land and in water, what always help for a while. Cold chamber treatment at a rehab clinic for fibromyalgia and rheumatism for 6 weeks, that was the best therapy, but to find cold chambers isn't easy to find. By the way, that was in Germany, I am only in the US since 11 years and the health system sucks here. You can't even compare it to the German or other European countries health system.
Anyway, you were lucky that you had CFS (and yes, doctors that treat fibromayalgia often treat CFS the same and you feel better. But fibromyalgia is not curable.... yet. They don't know the cause, so they can't really treat it to cure it. And that is a fact.
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