Struggling with BFS for 5 Years

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What a nightmare! I am almost 7 years in and I would not have expected to write updates such as this one. Yesterday I was doing some running and I got cramps. NEVER had this before. I was at my usual pace. Last night, cramps to my adductors stretching my lower limb. Again, unprecedented. I slept nothing at all. With florid, profuse, fasciculations and worsening aches...Horror. I am at the lowest point ever and I really fear for the worse.
 
edado, do not worry. From my experience (after 7 years too), I can tell you that I am sure fasciculations are worse than 2-3 years ago. Does it ever get better in your case (e.g. good week, bad week)?The recent proceedings in the neuroimmunology has shown a lot of interesting things (like the gluten sensitivity causing fasciculations and even in one case mimicking full blown ALS). I wanted to exlude as many allergens as possible and only now eat vegetables, fruits, meat (unprocessed), rice and potatoes. No milk, eggs alcohol etc. I do notice improvement but only time will tell as it would take at least 1-3 months. I believe there must be an environmental factor as the symptoms fluctuate for many of us and continue for years.If you really want to have a break from fasciculations, I suggest going on the Tegretol 3x200mg.
 
edadoStar,I'll jump in on this because I'm nearly 3 years into this madness and having the worst flare-up since the start. Both my biceps have been fluttering for 5+weeks. They have not stopped for a second. I can just look at them bouncing in several areas of the muscle. Little twitches, big twitches, machine gunners, all going at once. Its very distressing. In addition to that, both my shoulder girdles have been acting up as well but those seem to be related to my body position. So, when I turn over in bed for example, one of my shoulder girdles will twitch for 30 seconds or so. If I turn to the other side, the other one will twitch. My tongue, chin, both eyelids, thighs, abdomen, legs, have all been firing away randomly. But the weirdest one for me is my testicle. Its actually twitching and has been nonstop since mid-November! So frustrating. So... I understand your frustration. Hang in there. -Matt
 
edado,Yeah, laying down in bed is the worst. I think I twitch the same all throughout the day but I'm just so aware of them all when I'm still. My twitches, especially the hotspots, continue during sleep. I've actually dreamed about my tongue twitching, or my shoulder twitching and instantly woken up to them actually twitching so I'm sure they were happening as I slept. For me, I'm usually so tired by the time I go to bed that I can just let the twitching go and fall to sleep. My biggest problem is that my wife gets up at 5AM and her alarm clock wakes me up. Then I become a human popcorn machine and can't fall back asleep. So I lay in bed from 5-7AM just twitching away.-Matt
 
Dear edado. It is impossible for me to sleep because I have also extreme twitches during the whole night. I am twitching since 6 month now. The last 3 weeks my twitches becomes more worse than ever....
 
Excuse me for butting in but just wanted to say how good to hear someone else say that "Anxiety isn,t the cause of BFS"....fed up of anyone I try to explain it to lecturing me that its just anxiety.....I have suffered this thing for years now and I feel all my efforts to overcome it are belittled by such people saying " Oh it is just anxiety" ... a saying they often accompany with a smug head to one side and pursed lips. BFS cant be summed up by one simple word or one explanation....That is why I come to this site, bad days are awful and noone outside of here really understands. Its not just the fear about ALS, it is a fear of BFS in its own entity. Like you I can see my fasciculations through my trousers etc. People think it is funny or sometimes as my hairdresser told me once " Kind of cute......f..ing CUTE"....lucky I wasn't the one holding the snippers. ( sorry about language Mr Administrator will try harder honest).So thanks that one comment has cheered me up as I sit up here in Scotland, twitching, feelling like I have more hot spots than the sun tonight. HxTwelve highlanders and a bagpipe make a rebellion.
 
You can see my twitchers under my clothes too. They are so extreme. And I am cramping every night... I cannot believe that this should be benign... in my case of course... really bad days and nights
 
Over the last 3 days I had at the best 5 hours of sleep per night. Last night it was 2 hours only. Twitching has been amazingly florid and powerful. I know I have used this terms in several occasions, but this condition is continuing to impress me. We are to the point that pretty much at any given moment anyone could observe my twitches also under the clothes in several different places. To the point that I almost feel scared that people may see it.My wife does, of course, but I am used to the idea.Sweating at night has been also present. I thought about Morvan Syndrome, but clearly this is not the case either. I have to work and I take the life how it comes.This time it really feels I am twitching away. It is a total full body non-stop. I have never been as scared before. Never.
 
FROM BAD TO WORSEYesterday evening, back from work, I had a relaxing hot bath.I was watching TV with the kids when my arms started cramping. Whet I mean cramping, I really do mean cramps to the point I could not stretch them. First the right, then the left. I got really scared. Once of those things totally out of the ordinary.I had to show my wife. I didn't want to, but I was shocked. She knows, as she can see, how the twitching is going. She was in tears. I was shocked. Another night with no "break".I have to go an be seen again. Things have changed. There is no question about this.We have to know what we are up against so that we are prepared.I believe that my "BFS" days are finished.
 
I agree with getting it checked, it resembles neuromyotonia by its nature but EMG could tell more. Has anything changed in your life that you could attribute this worsening to? Diet, medication, location, work environment (chemicals..)?
 
I have been reading your posts for a long time. I wish I could say something to help you, I think you are in UK. I am way up North. Do you have a good neuromuscular specialist to go to ? Not sure if you are NHS or private. I did both . Private first consultation costs around £200 for the full hour and £100 for follow up. EMG extensive is around £550. MRI can be expensive etc. Good thing about private is you can be seen within a few days and it is the best of consultants of your choice that you see. Also you get full hour so even if you don't opt for tests you get all the info on what may be wrong, what should happen to your case, what tests you should get done, and also advice about who to see on NHS. I am sure you know all this but I wanted to say something, anything. .My thoughts to you and family and hope you get to the bottom of this.I find lack of sleep is like being caught in a snowball, it starts off small, each night it gets bigger and bigger and the twitching gets worse and worse. Please take care. You have lived through this for six odd years...don't let it beat you. There will be an answer, but that answer doesn't,t need to be a doomsday one. Kids with the highest temperatures arent always the sickest. Let's hope you are going through a hyper responsive episode of a benign condition such as cramp fasciculation syndrome.Hx
 
The latest reply to my post remineded me that there are several readers and that my posts may affect their feelings.I had fasciculations now for 7 years and I can promise yoy that also my wife has them on and off. The long timers may be well aware of my most distant posts. She is fit and well.Also, besides apologizing for having been laking of self-awareness, I would like to inform you that I am still as strong as I was 7 years ago. This meaning, I am strong (more than most of my peers are due to regular training). In many occasions it was commented that I should reduce my training, which I have already reduced in great extent and changed.Also, in my early days I had MRI, then EMG (3-4 months on - 1 fasciculation on my right triceps, my first "hot spot"!), another EMG (15 months on circa - normal) and seend again by a very qualified Neuro 4 years on who also looked at Voltage Gate Auto-Ab (negative). However, it is clear in my specific case, that a progression has been taking place (from day 1), in terms of symptoms (twitching and cramps). This does not mean at all (see my wife), that others will experience the same. And, please, recall that I am still a more than average fit guy. No, nothing has channged around me.I work very long hours, and this has been always the case.There is something ongoing, but I knew it already before. Perhaps, this may be clarified. Perhaps not...
 
I have the worst days ever... twitching in my feet is horrible... sleeping, walking etc. impossible. Sorry,..my little finger feels weak... I have visited the neuro two weeks ago.
 

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