on going possibly

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on going possibly

Postby Reffin on August 17th, 2004, 5:23 am

Hello - I'm a 58 year old male, live in Europe, work in the arts, look - no sorry feel - 13 1/2 on a good day.
About 14 years ago, I got 'flu, went swimming before it was really better, got whammed with aches, fasciculations and cramps mainly in calf muscles but also hands and arms, chronic anxiety (had never suffered that before) and frequent panic attacks provoked by totally normal things like crossing a bridge, being in a car. They landed a plane specially for me once, I and they thought it must be a heart attack. Wasn't. Air France gave me a free ticket to cheer me up. Good old Air France. (Actually did havea minor heart attack 5 years ago though, cured by a couple of stents and the traditional blowing up of a small balloon inside the artery clogged by stress 'n' cholesterol sandwiches). Thought the cramps/muscle-fatigue/tremors were maybe m.e. /chronic fatigue syndrome. It mostly got better over about 5 months, except for the calf muscle fasciculations - really strong, visible to everyone, kept my girlfriend awake at night sometimes as they made the bed shake! - which never left but were sometimes better, sometimes worse: made worse by impending illness, 'flu vaccinations, hangovers and tiredness in general.
Then about 3 months ago it all flared up again, and to cut a long story short was diagnosed, in the absence of anything more likely, as "Myalgia-cramp-fasciculation-syndrome" here in Germany where I live. The docs had been looking at the same websites as me, so we agreed, with some relief (but this was after emg, nerve tests in my legs showing slight damage to one nerve in one leg and a different nerve in the other leg, neck scan, prolonged exercise tests to rule out lactose stuff, tons of neurological tests etc.)
It's started to ease up again, but the cramps and tremblings are stronger than "normal" and bloody hell I do seem to have a lot of anxiety. I wonder what is cause and effect here. So many similar or very similar conditions seem to include anxiety, that I wonder if the sufferers just get naturally anxious, or if anxiety triggers or predisposes or worsens it, as seems often to be the case, or if something is causing the cfs *and* the anxiety too.
It occurs to me that it world be a good idea, though probably impracticable, to establish a (deeply subjective, of course) database of things that bfs/cfs, call it what you will, sufferers thought just MIGHT be relevant, in case some pattern or clue emerges, rather than the necessarilly more anecdotal and distributed things in accounts like this.
For example, when the trembling's worse, I get symmetrical red colourations on the inside "heel" of the palms of both hands; and my response to temperature has changed: if I get up to pee in the night (NOT all that common yet lol) and it's cold, I start to feel REALLY cold, and VERY fearful, as if a switch has been flipped. Equally, I sweat tons if I eat a hot curry etc. (whiich I still do, 'cos I love cooking and eating them) or if it's hot outside, which I never did before. This is probably totally irrelevant, but who knows? Hypothalamus involved with temperature control? - hey, isn't that something to do with anxiety too....?
The hospital prescribed 400mg of Carbamazepin a day, which, having looked at the long list of "frequent to very frequent" side effects, I'm postponing starting till I talk to one or two other people.
Ok, that's my bit. Sorry about probable spelling errors - I can spell, but am using British software on a French computer with a German keyboard.
Bye - hope we all get better soon. I find Monty Python or Absolutely Fabulous does help a bit, but then I'm British.... <smile> (I detest emoticons)
Reffin
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