Experiences with BFS Sensory Symptoms

[simonw00]

Hi allI am keen to hear from anyone who has had BFS for any length of time, in regard to sensory symptoms. I have had helpful feedback via PMs from a couple of people (thanks JRO and RainDog) but would like to canvas others for their experiences. I am a week away from having had BFS for 18 months. During the first 15 months my symptoms were almost exclusively muscular, apart from frequent brief periods when it would feel as if someone was pouring cold water down my R lower leg at night. Over the past 3 months, my twitching remains much as it always has been (24/7 calves - have learned to block this out except at night when it is more pronounced - plus multiple brief episodes of twitching over the entire body each day - difficult to ignore but no longer a worry to be given how long I have had this), BUT I have had ever increasing alteration in sensation. Both lower legs feel odd all the time - the usual cold water sensation, and now tingly, sometimes like there is a cold draft blowing across them, along with a variety of other alterations in feeling. The exact location of the symptoms seems to move around a bit and from time to time includes my thighs and bum.I'd love to hear from anyone out there who has had BFS for a while and who experiences altered sensation. What are your experiences? Any tips for controlling symptoms etc...?Regards and thanks in advance for your assistance.Simon

 

[MarioMasher]

I have had big time sensory symptoms the last couple of months. The one that annoys me the most (and is quite common with BFS, if you read the archives) is a persistent feeling that food is always stuck in my throat. I swear to God, any time I eat food lately, my throat will continue to "feel" the presence of food, even when the food has long been digested. It's the weirdest feeling in the world. I can understand why people flip out when that happens to them, too. If it hadn't been for this board, I would have sworn that something was seriously wrong with me. But luckily, since I've been around for a while, I can recognize it for what it is. It's just a sensory symptom. My brain is telling my body things that aren't true.I would say that sensory symptoms have been my #1 most prevalent symptom since day one. For more than two years I have had a feeling that my glasses were still on my face, even after I had taken them off. I always feel like I am wearing a hat, even if I'm not. Again though these are all just sensory symptoms. You have hyper and jumpy nerves all over your body right now. If you stimulate them even the slightest bit, your body will interpret the signal as being much stronger than it actually is. That is what has happened to me (and continues to happen to me) with my face, scalp, neck, arms, and throat, and it is what is happening with you as well.It could also not be further from ALS, if you stop and think about it. ALS means dead and dying nerves and LESS feeling. With BFS we have hyper and jumpy nerves and MORE feeling. Anybody who claims BFS leads to ALS (or is even in the same ballpark as ALS) is completely full of sh*t. They are pretty much the complete opposite of one another. That's like saying that eating nothing but potato chips will give you plenty of muscle mass. Um, I'm sorry, but no. Nice try though.So yeah, that's what you have. That's what I have. Hyperactive nerves. Nothing more, nothing less. It could get worse, it could get better, but your nerves (and my nerves) are extremely sensitive right now. Heck, my dentist has such a hard time numbing my teeth these days that it's almost impossible for me to get a simple filling done. They literally have to inject my tooth with 6-8x as much numbing agent as anyone else in their office, just because I can feel pain so well in my mouth. When I go to a movie, I know that if it is emotional at all, my skin will tingle so much it will be almost painful. If the movie is sad at all, I will well up and cry like a baby, extremely strongly, and for no apparent reason.It's all just nerves, nerves, nerves, nerves, nerves.So now we come to your big question. How do you deal with hyperactive nerves? Ah, well that is the much better question. Once you get past all the "Could this really be something serious?!?" nonsense, you come to the much more appropriate topic of symptom relief. In my experience, I have found that only three things really help with nerve hyperexcitability:1. More sleep2. Mental Distractions3. Self-relaxation techniquesYou could always go on anti-anxiety drugs if you want, they seem to help some people. But again they really aren't fixing the problem. You still have hyperactive nerves. The only difference is that you're doped up now so you don't care as much. But again, in the physiology of your body, nothing changes. The big thing for me has always been NOT TO PANIC. When a new sensory symptom comes along (because believe me, it will - I never had any throat symptoms for the first 18 months!) just keep in mind that it's all just the same old sh*t that has always been going on in your body. Just because it has moved doesn't mean it has changed. Sometimes things move just because they move. Big deal. The "feeling" of food in my throat is no different than the feeling of glasses on my face, or a hat on my head. If you just accept it for what it is, and not stress over it (believe me, to a PNHE person, even a minor worry session is your body's equivalent of a full-blown panic attack), you won't give your nerves any adrenaline they can feed off of. And without adrenaline, the nerves will slowly (and I mean slowly) calm down and go back to normal.The problem with PNHE people is that our nerves calm down much more slowly than the average person. What might take 10 minutes for a normal person might take 2 weeks for us. So don't sweat it if sensations don't go away right away. You just have to realize that YOU are probably the one who has caused this flare-up. The true wisdom comes from learning from your mistake, so you won't freak out the next time this happens.Again, just to reiterate for anyone who is reading this (lord knows I would love if this post saves someone's sanity five years from now, when they dig it up in the archives), you don't have ALS. What you have is pretty much the opposite of ALS. You have very hyper and sensitive nerves, that register feelings and sensations and pain that probably isn't really there. And you have two choices now what to do about it. You can sit in a corner and pout and feel bad for yourself, or you can do actively go out and do something about it.And p.s. here's a hint-- repeatedly running to the doctor and getting test after test after test isn't actually "doing something about it."In my experience, the only thing that REALLY works (and is much better on your $$ and your sanity) is just learning not to worry about it.Oh yeah, and also never ever get another cavity. Because like I said, getting a tooth drilled when you have PHNE hurts like a motherf*cker.

 

[AllGoodHere]

Hi Simon - Haven't been around much, just stopped by as I have a break in my two jobs and this little visit seems better than vacuuming the house Yes, I continue to get sensory symptoms and for the most part ignore them. When they persist for days I admit they do become irritating so here is some stuff I have found that helps. Do some ROM (range of motion) exercises in the joint inward (like if it's your hand focus on your wrist) of the hyperactivity when possible followed by some stretches. This works ~80% of the time for me. Of course as Mario noted, extra sleep and relaxation techniques also help. For me - the method I use is determined by how I feel and what time of day it is as I wouldn't want to exercise much toward bedtime. Also a hot bath helps - I'm usually not into hot baths but they do help and also are great on cold days. If you can get your partner interested, add a few candles and .......you'll forget about the symptoms in no time.