Struggling with Muscle Pain and Twitching

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garymills

Well-known member
Sue,

I take neurontin 600 mg/three times daily and it helps with the muscle pain. I guess i have extreme exercise intolerance, because I can't do anything without muscle pain. Hasn't helped much with the twitching. I also try to get plenty of sleep. I do notice a big correlation between lack of sleep and increased symptoms.

As for emotional help, that's a tough one. I just try to stay positive and not worry. I keep reminding myself that two drs. have said no als. I have to say it is getting a lot easier to believe as time passes.

Good luck,
Gary
 
Personally, I can't answer your two questions separately. In my case, the emotional component DIRECTLY impacted my physical symptoms.

I'm going to sound like a broken record, so some of you may want to stop reading now...

I tried taking supplements (after discussions with my GP) and found little to no benefit. I have become very aware that taking supplements may help with one symptom/problem, however other problems tend to crop up. This has only been my experience. I now take a very balanced approach. For my meals I try my best to eat the recommended portions (starch, fruits/vegetables, protein, milk, fats/oils) from the Canadian Food Guideline. I also exercise daily in which I incorporate aerobic & weight-training. Fortunately I have never had problems sleeping & always get 8-9 hrs a night. I do take a multi-vitamin daily.

The most important aspect (and the most difficult) to controlling this condition, in my case, was mentally. I was very fortunate to have a fantastic GP & Neuro. Their reassurances really helped.

I did however still have doubts. I was able to understand that I trusted my Doctors & believed them, but I was still really worried. I did a lot of reflecting over several months & realized that I was obsessing over this condition but more importantly that I was being selfish, I was only thinking of myself. I realized just how lucky I was. A great wife, two wonderful kids, a supportive family, a good job, roof over our heads & groceries in the fridge. I really look at things differently now. I have much to be thankful for - just getting out of bed in the morning & being able to walk - look at Christopher Reeves.

I no longer focus on my twitching and muscle aches. I have resigned myself that I have this & it will most likely be a part of my life forever, albeit a small one - that's my choice. Once I realized this and started focusing my energy into fostering relationships with the people who really mattered to me, the other stuff didn't or hasn't bothered me nearly as much.

There are many times on this BB that I make sarcastic comments. My intention is not to start fights but to downplay this benign condition. If you have been diagnosed with BFS, be thankful, it could be a whole lot worse. Find out what is really important to you & focus your energy in that direction - BFS just isn't worth it!

Good luck to all of you.

Dale
 
Sleep does wonders. Getting a good amount of sleep not only keeps you healthy but there is no way you can worry whilst you sleep. It's waking that causes some trouble. When I really notice the twitching I move around and do something like walk to take my mind off of it. Busy and active, like Nole said. Hang in there (I say this as my left eyelid seems to have a mind of its own). Better go for a walk!
 
Thanks to everyone for the postings! I really enjoyed reading them and related with you all. I think many are in agreement that the worrying is the worst part of BFS. That's the part I struggle with the most.
I do want to mention that sleep, staying hydrated and lowering my stress level helps a lot. Exercise makes me feel better but can cause the twitching to increase. But I think my heart likes the exercise, if it has a choice in the matter..ha ha.
I was on a short vacation last week visiting my sister and she mentioned that if she could do anything over again (she's healthy) she wished she didn't spend all the days, years worrying over things that never even happened. I thought about it and realized that I have spent the past 2 years worrying and preventing myself from truly enjoying the moment or my family.
Thank you all for helping me realize this too...as many of you have shared this and are probably are thinking....good one Sue, it's about time! ha ha.
Perhaps this will be a good year for many of us...at least I'd like to try and make it that way!

Sue ;)
 

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