95% Better

[Gerard]

Ok, I had:
- severe burning, paroxysmal & migratory
- widespread twitching
- poor swallowing
- weak voice
- weak, extremely untidy handwriting
- perceived generalised weakness and lethargy

.... and after four years, it's all pretty much resolved except for the twitching which is way less prevalent, angry and bothersome than it ever has been. My $0.02 worth? It's all anxiety, with hyperventilation and the effects of chronic insomnia thrown into the mix.

[Gerard]

Oh and forgot severe cramps too. Not gone completely, but pretty rare.

[emmie.s]

I could've written this post myself. Cramping, cramp like feelings, widespread twitching, hotspots that lasted for months, swallowing difficulties, perceived weakness, waking up 6-7x a night, waking up with arms that have fallen asleep, pins and needles, burning feet (still get), and ratcheting/shaking.
I think that diet modification helped a little, but acceptance that "yes, I am a twitcher, so what?" and getting my anxiety under control helped a whole lot.
New twitchers, take note.

[donnastar]

Thanks for checking in as these types of posts are so reassuring! Happy to read your both 95% better. Any specific suggestions other then de-stress and sleep more? How did you get your anxiety under control and learn to accept "I'm a twitcher"? I'm fortunate for the times the symptoms are less prevalent and angry as you say Gerard, but do have times they are bothersome. Right now my new hot spot is my tongue along with my usual feet twitches that are causing my toes to move and the numb hands waking me up at night. Appreciate the advice?

[Gerard]

Sure.

1. Sleep. Getting a decent sleep affects your whole being, and lack of it undoubtedly makes BFS worse. When I was at my worst, I was averaging 4 hours of broken sleep a night. Looking back, I now wonder how I functioned at all. Do not rely on sleeping pills (the benzodiazepines in particular are highly addictive, and withdrawal of them exacerbates neuronal hyperecitabilty/BFS); instead concentrate on sleep hygiene techniques (google it).

2. Hyperventilation. This is part & parcel with anxiety, and I believe is a key component in the development of BFS. Breathing exercises can work wonders - a NZ physiotherapist by the name of Dinah Bradley has a useful book available on this very subject.

3. Under supervision of your doctor, get off all "nerve stabilizing" drugs like tegretol amitryptilline, nortryptilline, gabapentin. They all have their own problems, and you don't need 'em. This is a benign condition. Suck it up.

4. Proton pump inhibitors for GERD cause hypomagnasemia (low body magnesium) and I'm sure that when I finally, after ten years, managed to come off mine, my BFS got a whole heap better. These drugs have been dispensed far too freely over the last decade.

5. Stay hydrated. Sip water throughout the day. When dehydrated, circulating catecholamine levels are elevated which will worsen BFS.

6. Last, but most importantly - deal with the anxiety. Easier said than done, when you are probably of an anxious disposition anyway and now have symptoms that can be associated with an awful degenerative disease! I think they key here is listen to your health professionals, and the advice of others here. You are *not* the exception. Also, don't fall into the trap of feeling anxious about feeling anxious. You're an anxious person. There will be good days and bad. It's okay. Live your life, there'll be no sudden epiphanies, but one day you'll calmly notice you're a hell of a lot less anxious than six months ago...... and that's pretty much the battle won.

[emmie.s]

Excellent advice Gerard.
Here is what I would add:
1) Stay away from Dr. Google and internet searches. You will always find what you are looking for, and by that I mean that if you do a search "is ____ a sign of ALS?" chances are you will find it, and find undue worry. Instead, listen to your doctor and just put a little bit of faith in the fact that you have a benign condition. Also, consider taking a break from this site as well. Other members' negativity will affect you, even subconsciously, and just add to the needless worry (ie, if they're worried should I be worried to?) which will affect your sleeping and exacerbate your symptoms. I remember many a day that I would wake up feeling great and thinking positive, then I checked in on this forum and some member's ignorant and negative-thinking comments and anxiety would affect me, ruining my day.
2) for the numb hands: in my case, I realized that I was so sleep deprived, that when I did fall asleep, it was so deep that I wouldn't switch positions at night. I hypothesize that during normal sleep, we move during light sleep stages to get more comfortable, but I was so tired that I didn't do this, hence the numb hands/arms. Just a hypothesis, but it is interesting to note that once my anxiety was better, I didn't have the problem anymore. I also switched pillows, so that may have helped!
3) Acupuncture helped me quite a bit with regards to relieving the anxiety, and sometimes (but not always) it helped stop a hotspot. Of course, the downside is that its pricey, and a single session won't do it; you need a few to see benefits. I could see how yoga/meditation would have the same effect.
Good luck!

[donnastar]

Thanks so much Gerard and Emmie for taking the time for your suggestions and advice, very much appreciated. I am sure I'll re-read this post when things are acting up.

[muppetdog]

I totally agree with your thoughts about benzodiazepines, it seems that even when used sporadically, when you stop them they seem to intensify the symptoms 10 fold. I had a Dr get me to try Klonopin for a couple months and although it did help my body to settle down a bit, coming off of it takes about a month or so of hell with an increase in symptoms. It also made me really depressed. I tried Xanax for sleep for a while and although it knocks me out, I get to pay for it later.

Another crappy drug is Lunesta. I weened my way off of that and I think it has made a huge amount of difference in how I feel in the mornings and with my symptoms. Its interesting to know that after a couple months of hell with sleep and other stuff, that I can sleep with out it.

I was also one of those people who would wake up a ton of times a night and had no idea why. For me, it seemed to be something physical that causes it but seemed to settle down after 6 months to a year. I know sleep disturbance is not uncommon in a lot of ailments but it was way out of the norm when It happened to me. Most of the time I was thinking, "you got to be kidding me. How in the hell can my sleep be this messed up?" I still wake up for extend periods of time here and there, but so do a lot of people I know. My cure is a good book and no computer.

emmie - I get the numb arm thing also. I think it is positional but also I think there is now a predisposition to limbs going numb easier than before acquiring these symptoms. I will wake up sometimes and have to get out of bed to shake the two dead stumps that are my arms back into feeling. It hurts like a mother, but as you probably know comes and goes and after it wakes you up and you work it out for 5 - 10 mins it does go away. At least for me. It's strange that ever since all this happened for me about 3 years ago, my legs and other parts of my body will go numb easier when sitting or learning in certain positions. Guess that's just part of the crap.

It is great to hear someone getting 95% better. I am still suffering to the point of debilitation at times, mostly with fatigue and burning but still hold out hope

MD