I got ill about 15 months ago. My symptoms led me to spend a lot of time worrying about dying and for various reasons I ended up spending time on-line with another community called AboutBFS - which basically is for people who are terrified they have Motor Neurone Disease because they have muscle twitches. Anyway, I got over that, but in the process realised that people with benign Fasciculation Syndrome (BFS) have a great deal in common with CFSers, thankfully without the profound fatigue. I'm working on the theory that CFS and BFS are different aspects of the same condition. I'd be very grateful if any readers could reflect back their symptoms and see if they have much in common. This is how things went for me:
Completely well, then for 4 weeks - rib pains and tenderness, followed by a sudden illness with lowgrade fever (37.7) for 48hrs or so, a vague dizziness and feeling slightly faint, nausea (never quite enough to vomit) a little bowel looseness, and on the 5th day of this, all my muscles began to twitch, mostly my calves, every few seconds a small contraction, and blips randomly elsewehere. For 2 weeks my heart rate was up around 80 (30 more than usual) even after my fever abated. I also got tingling hands (like carpal tunnel syndrome) and sleep disturbance, waking at 4am for many weeks.
Another thing (of particular interest) was that around the time the twitching started, I got suddenly loads of floaters in both eyes, with just a little bit of soreness. Otherwise vision is fine.
15 months later - much more tired than I used to me, but it falls well short of total fatigue - I'm still able to function well. Still twitching, still floaters, still chest/rib pains. The nausea was horrible and lasted 4 months. That was the worst symptom.
Saw my GP and a gastroenterologist - full bloods and exam = normal. (no surprise there). I know I'm not dying, and am probably "weller" than most CFSers. But I really want to know why I got ill and what's going on here. My idea is that its postviral, and probably enteroviral, maybe coxsackie B. - which can theoretically account for nearly all the specific symptoms I have, and have read about in connection.
Those of you with CFS - can you describe for me your muscle behavior - do you twitch ? Also how many of you had definite worsening or onset of floaters ? These are fairly specific symptoms and big clues I think. Any other comments would be read with great interest.
Thanks for reading this far !
Take care all of you.
Last edited by mod-anon; 05-22-2009 at 11:05 PM.
Reason: removed profession
It sounds as though you are getting the run around...I honestly don't wish what I have been through on anyone....
You might want to read the post that Jen started..."Is it CFS?" If you haven't already..
From what I have learned and been through ...There are viral and bacterial problems that cause these problems.
In my own opinion, majority of doctors say it is CFS. But then they say....I don't know the reason..
There are many reasons for Chronic Fatigue.
Whether it is Thyroid, Epstein Barr, Cytomeglovirus, any herpe.
Whether it is Lyme Disease, Mycoplasma Pnumonaie, or Chlamydia Pnumoniae.
And on and on.
The key to each of us individually is to find a specialist or a doctor that will listen and think of these unseen problems and test for them.
Your blood work maybe be okay for the things your doctor tested for but what about the unseen world??
You been tested for any of the things I spoke of above?
I had floaters something bad and still have one or two. From what I understand these are bacteria...what a lovely thought ugh!
I hope you can find some answers here on the board to help you.
And hope you find a protocol that helps to get you well quickly.
As I have learned there is no magic pill that will cure you over night. It takes years and years of the proper treatment and supplements to get your body up and running again.
Ok, doc, I'll bite, heres my rundown, I started with fatigue and calf pain, achilles tendon started killing me on one leg. could not get rested, started getting charley horses every nite, then it was my hands hurt and cramp, then my elbows, intermittant low grade fevers, irritable bowels, then sore shoulders, and neck. Tired all the time. Started getting ear pains and popping but nothing wrong, toothaches couldn't find anything but I did end up with 2 root canals and 2 extractions. Then the twitches started, started in my legs around the ankles and knees, they have since expanded to entire body, face arms, legs, trunk, ribs are like the hardest painful tickle feeling. Also started having bouts of almost like going into shock and passing out but I never did pass out, found out that was some kind of blood pressure thing kept dropping suddenly causing sudden weakness, heart palpitations, culminating in a "heart event" went through the usual stuff culminating in cardio cath, all clear arteries, diastolic dysfuction, hypercholesteroism.
Pain kept increasing, it was like I was falling apart in the space of a few months developed neuropathy in feet and hands, developed palsy of 3rd cranial nerve causing double vision, started having full blown trigeminal neuralgia, made the toothaches, ear pains, and nerve zaps seem like a fond memory. Twitches are constant, thousands per day but they don't hurt!
My pain is severe and chronic, my fatigue is bone crushing most of the time. You mentioned floaters, the vision thing was also one of my first symptoms looking back, I could not get a pair of glasses made that I could just see out of, I blamed allergy, tired, cappy optometrist, but nothing helped, that had been going on for over 5 years then the floaters started ,I have had them for over 5 years also. In the last 2 years I have had daily eye pain,can't find a reason and photosensitivity to the point of wearing dark glasses indoors. I have a great GP, a neurologist I love who has run every kind of test including LP, mri's, emg, untold blood work, I've now started seeing a Rheumy, she's running more tests including a sleep study(that was fun, but no problems just intractable pain during sleep that keeps waking me up)
I don't remember any of this starting with an illness myself, I feel like its more of a metobolic disorder that just has gotten to the point that it has disordered all of my systems, cns, both sensory and autotomic, my endo system, you name it, it just doesn't seem to be able to work right. And under the pain,burning, twitching, funky vision, nausea, loss of bowel and urinary control and your heart flopping around is I'm so tired, I am so freaking tired I can't move, but I can sleep for hours and it does not help. I also have found I get like a sensory overload where sound, light, movement around me just starts to make me feel anxiety, stressed. I'm 48yrs old and have never been a wimp about anything, I was a full-bore type A personality. I played competative sports into my late 30's and always had physical jobs and was generally considered a 5' tall keg of dynamite, I'm not fat, or depressed. and believe it of not I had a sharp mind once, now I can't trust myself to try to cook on the stove, there have been many near misses with that.
I am fms/cfs, I have a neuro, rheumy,opthomologist,cardiologist,pediat rist,I'm not dying either at least not from this stuff, just 48 going on 98. Good luck to you, funny you thought Lou Gerhigs, crossed my mind to along with MS and about a hundred other things. Anyway, keep twitchin'
Ok, doc, I'll bite, heres my rundown, I started with fatigue and calf pain, achilles tendon started killing me on one leg. could not get rested, started getting charley horses every nite, then it was my hands hurt and cramp, then my elbows, intermittant low grade fevers, irritable bowels, then sore shoulders, and neck. Tired all the time. Started getting ear pains and popping but nothing wrong, toothaches couldn't find anything but I did end up with 2 root canals and 2 extractions. Then the twitches started, started in my legs around the ankles and knees, they have since expanded to entire body, face arms, legs, trunk, ribs are like the hardest painful tickle feeling. Also started having bouts of almost like going into shock and passing out but I never did pass out, found out that was some kind of blood pressure thing kept dropping suddenly causing sudden weakness, heart palpitations, culminating in a "heart event" went through the usual stuff culminating in cardio cath, all clear arteries, diastolic dysfuction, hypercholesteroism.
Pain kept increasing, it was like I was falling apart in the space of a few months developed neuropathy in feet and hands, developed palsy of 3rd cranial nerve causing double vision, started having full blown trigeminal neuralgia, made the toothaches, ear pains, and nerve zaps seem like a fond memory. Twitches are constant, thousands per day but they don't hurt!
My pain is severe and chronic, my fatigue is bone crushing most of the time. You mentioned floaters, the vision thing was also one of my first symptoms looking back, I could not get a pair of glasses made that I could just see out of, I blamed allergy, tired, cappy optometrist, but nothing helped, that had been going on for over 5 years then the floaters started ,I have had them for over 5 years also. In the last 2 years I have had daily eye pain,can't find a reason and photosensitivity to the point of wearing dark glasses indoors. I have a great GP, a neurologist I love who has run every kind of test including LP, mri's, emg, untold blood work, I've now started seeing a Rheumy, she's running more tests including a sleep study(that was fun, but no problems just intractable pain during sleep that keeps waking me up)
I don't remember any of this starting with an illness myself, I feel like its more of a metobolic disorder that just has gotten to the point that it has disordered all of my systems, cns, both sensory and autotomic, my endo system, you name it, it just doesn't seem to be able to work right. And under the pain,burning, twitching, funky vision, nausea, loss of bowel and urinary control and your heart flopping around is I'm so tired, I am so freaking tired I can't move, but I can sleep for hours and it does not help. I also have found I get like a sensory overload where sound, light, movement around me just starts to make me feel anxiety, stressed. I'm 48yrs old and have never been a wimp about anything, I was a full-bore type A personality. I played competative sports into my late 30's and always had physical jobs and was generally considered a 5' tall keg of dynamite, I'm not fat, or depressed. and believe it of not I had a sharp mind once, now I can't trust myself to try to cook on the stove, there have been many near misses with that.
I am fms/cfs, I have a neuro, rheumy,opthomologist,cardiologist,pediat rist,I'm not dying either at least not from this stuff, just 48 going on 98. Good luck to you, funny you thought Lou Gerhigs, crossed my mind to along with MS and about a hundred other things. Anyway, keep twitchin'
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