I have been getting weaker and weaker for the last 10 years, and the rate of degeneration is increasing. I was diagnosed with Inclusion-Body Myositis (IBM) 3 years ago on the basis of my symptoms. I was getting weaker faster than is typical so last year I underwent the nerve tests and a muscle biopsy. These did not show the damage typical of IBM so the neurologist thought maybe I didn't have IBM.
Another doctor diagnosed the severe pain I feel all over my body as fibromyalgia. Another diagnosed the hot-wire-under-skin pain and the clumsiness in my hands as peripheral neuropathy.
The neurologist gave me some prednisone and the pain in my right upper arm went away. Apparently that pain was caused by polymyalgia rheumatica, an odd disease that only affects necks and arms and can be treated only with steroids. I wish I had tried prednisone earlier, that arm hurt for over a year. Nothing else responded to it, and it made me dizzy so I stopped taking it. Arm did not resume hurting.
The neurologist gave up on me a week ago. He decided that I have chronic fatigue syndrome because he could not think of anything else it could be. My symptoms don't match those of CFS, the onset was different, and frankly I think the diagnosis was just because he didn't want to waste any more time on me. He said he would send me to the pain clinic but they never called to give me an appointment. He also recommended me for cognitive behavior therapy but they said they were full up.
These are my problems:
-extreme weakness of arms and legs
-cannot rise from sitting position without pulling myself up with arms
-cannot get up from floor at all, even with arms
-occasional foot drop
-weak and clumsy hands, cannot even open candy wrapper
-calf muscles tight, rigid, cramping often (even though I take tizanidine, a muscle relaxant, to help them)
-jaw muscles tight and rigid and painful
-arm muscles soft and useless, like jellyfish
-thigh muscles which were soft and squishy turning hard like calf muscles
-intense pain in chest, often
-moderate to severe chronic pain in muscles and joints (even though I take diclofenac as anti-inflammatory)
-intense and intermittent nerve pain like red-hot-wires under my skin (even though I take Lyrica)
-no stamina, used to hike 10-15 miles a day, now cannot walk more than a block without resting
-fatigue, cannot stand for more than a few minutes, cannot carry anything heavy for more than a few seconds, must rest books on table or body to read
-dizziness whenever I move my head too quickly
-insomnia at night and napping in daytime from exhaustion (and pills)
-disturbed sleep (I snore too)
-exaggerated startle reflex
-cannot bear cold
-no longer enjoy music
-can't stand loud noises
-problems eating, too much trouble to chew
-gastritis (take omeprazole)
I have found dozens of diseases that have some of these symptoms but all of them have OTHER symptoms that I don't have. Not all of these have to be caused by one disease (I assume the sinuses and stomach are separate problems)but I have the feeling that the weakness, pain, clumsiness, and fatigue are all caused by one malfunction.
I think that my mitochondria are not turning oxygen and sugar into energy and that is why my muscles do not contract on demand. I think they have gone anaerobic on me and that is why they are painful (and possible why they are stiff).
If anyone out there has any ideas I would be glad to hear them.