My Muscular Struggles with Astro

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astro1984

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Dear All!First I thought I could get rid of this matter but it is not so:Short summary (you could ready the whole story using the search function by typing "astro"!):- 2004 general muscle pain and fatigue- 6/2005 starting with general twitching, some kind of stiffness, muscle pain, light crampy feeling- 10/2005 total remission apart from slight twitching till- 4/2006 again general twitching some kind of stiffness, muscle pain, light crampy feeling+extreme fatigue/being exhausted- 12/2006 total remission apart from slight twitching till- 1/2009 again general twitching some kind of stiffness, muscle pain, light crampy feeling+extreme fatigue/being exhausted/depressedAll the time till 2002 slightly elevated creatine-kinase by 35-50 % of normal figure, regularly ongoing deep exams at highly reputated specialised clinics including several emg, MRT etc. with no pathological results- Diagnosis: BFCSNow my questions to the experts:- Concerning timeframe: Could it be to have periods of 3-6 months of constant BFCS and then come back to almost normal condition again? And then start again with ugly periods?- Triggering BFCS: All the time I made the experience of some kind of viral illness (e.g. cold)+stress+starting with physical exercise after a long time and then everything starts again?- Extreme fatigue: At this time I am developing such a severe fatigue that I could sleep from one minute to the other even at daytime ongoing,common to you? Any help?- Responding muscles to the too much exercise: Since one week my left upper arm muscle is buzzing and twitching like hell, could this be for such a long time of a week as a response to the gym?- And the last nagging question: I have always the feeling of being ill like if you have a cold but with no real fever or raised body temperature since everything started again a few weeks before, I am also feeling really cold and freezing due to my body as if I would have an infection all the time. Common to somebody?- Any help to get rid of this situation again? Shall I contact the clinic again for further testing like a muscle biopsy? Is it maybe not BFCS....(Shame on me!)To everybody out there: Thank you for everything, great community and forum! ;) All the best :confused:
 
I'm no expert but have given unqualified answers to your questions below;1. My understanding from the literature is that a not insignificant number of BFS patients have a relapsing and remitting course with long periods without symptoms interspersed with periods of symptoms of varying intensity2. As far as I understand it, no-one really knows what triggers BFS but I think one of the theories is that a virus damages the connection between the nerve and muscle. It would therefore be logical to expect to experience symptoms when you have some sort of viral infection. Likewise, stress hormones affect the body's immune system and this in turn will enhance the injury that a viral can cause to the relevant nerve/ muscle connections. And as regards exercise, if you ask a muscle that is 'playing up' to do more than it is used to doing, then it is understadable that there will be some increase in muscle symptoms at that time. All your symptoms seem to fit in with a 'textbook' description of BFS, i.e. triggered and reactivated by infections, stress and exercise. The fact that this is the case is very reassuring.3. I have struggled to keep on top of my fatigue with my BFS symptoms and haven't worked out whether it's the BFS or my anxiety that exhausts me. My hunch is that it is the latter in my case. Lifestyle management of this anxiety would probably help reduced the fatigue if only I could be disciplined enough with myself to do it!4. I went through a phase of 'checking behaviour' whereby I would do lots of intense exercise to convince myself that I had no weakness. When I did so, my symptoms would flare up in the affected muscle groups for at least a week.Since trying to control my 'checking' (or 'selective attention' as the clinical psychologist whose assistance I sought for the anxiety, called it!) I have had fewer exercise-induced symptoms but still have unexplained 'bad days' (like today for example)5. I wonder whether the general ill efeling is a reflection on the virus infection that is triggering your falre ups? Stress can itself cause symptoms that could be mistaken for an intercurrent illness such as a viral infection. One of my BFS symptoms is an odd sensory disturbance which I have seen other people refer to on this website... something like cold water raunning through your legs. Initially I thought these were the early symptoms of a flu bug so this too may be relevant in your case.6. There is no shame in doubting the diagnosis. I am a physician with BFS and should know better than to fret about more sinsister causes but I have expended a ridiculous amount of nervous energy in worrying about ALS. Your description sounds very typical of BFS and totally unlike anything more alarming but this is not a professional opinion obviously because I am not a specialist nor have I examined you. Seeking reassurance from a specialist is always a good way to help overcome irrational fears of more worrying problems but nothig about the details you've presented sound alarming to me, as an allegedly 'educated patient'! Hope all goes well. This website has been immensely useful to me, because I used to feel so isolated and I find reading about other people's symptoms, being identical to my own, highly comforting.Regards from New ZealandSimon
 
Astro,I'm another relapser, and am back on the board because I'm having symptoms again. I too have the muscle aches and fatigue(new to me this time). I also had tingling this relapse, and I've been getting cold very easily. Just chills that run through me. I've also had a few relapses where I've felt awful - just not myself - sort of sick, but not easy to describe. The first time I had this (3+ years ago) my fatigue was awful. I'm sure a lot of that was anxiety, as I had a regular doc and a neuro who weren't familiar with BFS and agreed with me that something must be really wrong.I come back to the board because I need reassurance that what I'm experiencing is "normal" for BFS, and it sounds like you fit the pattern. And I'm going to wait it out again, and be thankful that I have times when it's not bad at all. Sounds like if you can get through this little bit you'll be in the clear for awhile. Hang in there!
 
Same to me...but my subject would be "after 3 1/2 years".The 2 times twitches/other symptoms were noticed with more evidences were when I gained a lot of weight in a short period of time.2005: After ran a marathon, I stopped exercises, gained 30 lbs in 3 months.December 2008: I was on a diet for 3 months (sept-nov)...in december I stopped the regular exercises, ate a lot, and gained 8 lbs in a month. Since now, 12 lbs in 2 months.Do you know it can be related with it (gaining a lot of weight in a short period of time)? Does it make sense?
 
Same to me...but my subject would be "after 3 1/2 years".The 2 times twitches/other symptoms were noticed with more evidences were when I gained a lot of weight in a short period of time.2005: After ran a marathon, I stopped exercises, gained 30 lbs in 3 months.December 2008: I was on a diet for 3 months (sept-nov)...in december I stopped the regular exercises, ate a lot, and gained 8 lbs in a month. Since now, 12 lbs in 2 months.Do you know it can be related with it (gaining a lot of weight in a short period of time)? Does it make sense?
 
Hello GGKK!I read your post and it made me wonder whether the stress on your body of a change in weight (which could apply equally to rpaid weight loss as weight gain) could result in changes in the stress hormones in your body, like cortisol etc? If so, then I guess this could well have been the trigger for your recurrence. Having read the posts of other BFS suffers on this website, I am left with the impression that sometimes symptoms will recur without rhyme nor reason so maybe the weight change was a coincidence. Who knows?! In any case, the end result is the same, i.e. highly annoying symptoms that cause ansxiety and stress! I have found great comfort in learning that I am not alone in my symptoms and that there are so many of us around the world all twitching away!I hope your symptoms abate soon.RegardsSimon
 
Interesting coorelation between the exercise and your symptoms. My symptoms are back right now, and I went from being in awesome shape last Jan-June to being completely out of shape now (moved the family, didn't have a new gym, etc.). I just started the 4 times a week exercise thing again hoping that it will regulate me again and my symptoms will decrease. That's the annoying thing about this. It has different origins and triggers for everyone, and therefore different solutions for everyone as well. I do think that exercise is beneficial because it takes our mind off things and generally reduces anxiety. I'm just glad this group is here so I don't feel like such a freak!
 
Your symptoms of muscle fatigue and pain along with the twitching sound like fibromyagia. It waxes and wanes. Have you seen a rheumatologist?Linda
 

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