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Recently diagnosed BFS

PostPosted: August 18th, 2014, 7:04 pm
by JMH1504
Hi, I have been diagnosed with BFS by a neurologist approximately 6 months ago. I have constant foot arch (now seems to be migrating to the outside of my feet) and calf twitching in both feet and legs. In the calves I get random "big" twitches along with pretty much anywhere else on my body (thighs, buttocks, arms, back, shoulders). I get tingling in my feet and toes. Internal buzzing/vibration feeling in my feet, pelvic area and now legs. Now getting random muscle pains/stiffness (mostly calves but also thighs, hamstrings and arms). Frequent twitching in eye lids. Widespread parathesias all over my body (including the feeling of having a "hair on your chin") which come and go all the time. Also getting a tightening feeling in my hamstring and calf muscles of my left leg on bending my head forward (not sure if this is BFS related or more to do with that I have degeneration of both cervical and lumbar discs in my back???).

Anyway, enough of the symptoms, I am having great difficulty learning to cope and living with this condition. It feels as though it is gradually getting worse and as a result I am having difficulty functioning at work, relaxing and sleeping.

I have a loving and supportive wife and 2 magnificent kids but this condition is greatly affecting the way I relate and spend time with them. My anxiety is out of control (I constantly think it must be something else going on). I am hesitant to exercise (previously very active and love my sport) for fear that it will make everything flare.

I would be extremely grateful for any tips/advice/reassurance on how to cope with this extremely annoying condition as it is impacting on the quality of my life and that of my family.

Re: Recently diagnosed BFS

PostPosted: August 19th, 2014, 4:27 pm
by dARR
Hi!
First of all congrats on ur diagnosis! You can put any fears of als etc behind you.

On dealing with the condition: I have had very similiar symptoms to you for the past 4+ years. Not one second of one day in that time has passed without a twitch. All I can say is that all the little aches and strains go away once you put self testing behind you and stop focusing on the way you walk/stand/ run etc. The reat of the niggling symptoms reduce when stress levels go down after a year or so. Unfortunately for me the twitches have never stopped or got any better but you really do stop noticing them!!! Your body just kind of tunes them out after a couple of years so you can't feel them anymore!
My advice is : exercise, eat better, and try to forget about it.
People find that various benzos work too.

Good luck,
Dar :D

Re: Recently diagnosed BFS

PostPosted: August 19th, 2014, 8:13 pm
by emmie.s
I would say that what you describe is what so many of us here have gone through and are going through. I myself consider myself much much better (of course after having this for years and years, I have my bad months/years and my good ones). Yet even then, if I look right now at my foot arches, I bet I would find a tiny twitch. Same for my calves. They are the most common place to twitch, and many people twitch there but don't notice.
Here is my advice: focus on getting more sleep. Tackle that first, and your symptoms will likely improve. They won't go away completely, but they will improve.
Also, try to forget about this...I know initially it will be nearly impossible. But I promise it will get to the point that you will say "hmm, my eyelid is twitching for hours now. What's for dinner?" (that is exactly what I just said, BTW). Also, know that you're not special. The paresthesia, the tightening, the near-cramps, the hotspots, the vibrations, the random little ones, the big thumpers. So many of us have had ALL of those symptoms, plus more, at some point. I know I did, so take comfort that so many here have "been there, done that" and yet here we are, years and years later, stronger than ever.
Good luck and God bless.

Re: Recently diagnosed BFS

PostPosted: August 23rd, 2014, 3:32 pm
by jebmd
Hi there,
I can totally relate to the hamstring/calf symptoms-they have been going on for me for the last 6 months on and off. I have diagnosed myself ( and my colleague agrees-I am a physician) with piriformis syndrome-massage and exercises are helpful for this. If you trust that your neurologist did a good clinical exam and you had a negative EMG then you need to relax-I would not stop exercising or doing things you enjoy-this condition rips away enough of our lives don't you think? I do find that clonazepam (Rivotril is the trade name in Canada) is useful at night to sleep especially where the leg symptoms are concerned. I also prescribe this medication for restless leg syndrome for my patients.
Keep thinking positive you already have a benign diagnosis (as annoying and persistent as the symptoms are).
Joanne

Re: Recently diagnosed BFS

PostPosted: August 30th, 2014, 8:21 pm
by elliottok
This sounds pretty much exactly what I'm going through right now. Same symptoms and timeline.

Re: Recently diagnosed BFS

PostPosted: August 30th, 2014, 9:17 pm
by veryworried123
I agree with the above

90% of overcoming bfs is mental you can learn that the easy way or the hard way like many of us including myself

But I don't reccomend it

Time will help and as my Nero said "just stop giving a *beep*"

Re: Recently diagnosed BFS

PostPosted: September 1st, 2014, 1:16 pm
by jcmommie
If you are like me, you have symptoms coming from a variety of places--atypical migraine, spinal stenosis & disc degeneration, and plain unexplained twitching from a hyperactive nervous system. For the spinal stuff, you may find a few visits to a physical therapist would be beneficial. They should focus on stretching (daily!) and strength training in all the muscles that help support the spine/core strength. An added benefit of a daily exercise routine is the daily reminder that you CAN exercise, because you don't have a neurodegenerative disease that prevents you from exercising. From all the reading I've done, those of us with hyperactive nervous systems absolutely should exercise, eat whole foods/low sugar, controlled carbs, supplement with B vitamins if needed & magnesium. Moderate exercise is better than extreme marathon training or Crossfit (I may hear argument here!), as these may exacerbate twitching. Hope this helps.