New here and questions

[twitchinstinks]

WOW has this been a hard 15 weeks. I go to the neuro next week and I can't get there fast enough. I have never been someone to think they have something or worry like I have over the lat 3 and half months. I got very sick in April and had both a sinus infection and a staph infection. I became very stiff in the legs after the infection and found it hard to move up and down the stairs. I got over both infections and the stiffness went away but the spams came with vengance. I had and still have them everywhere.I am 36 year old mother of 2 technology teacher. I am constantly on the computer but about 3 months ago I began having WIDESPREAD muscle twitches all throughout my body. 2 weeks before the twitches I had fatigue and muscle stiffness. Mostly legs but I have had them in the tongue, the jaw, the shoulder the arms the butt, the arches of my feet and my hands. EVERYWHERE! THis week I am having them in my ribs. (Intercostal spasms) The ribs, really? I don't have any real muscle weakness that I notice. Meaning that I can still do my everyday activities without much ado. I do still have occasional stiffness of the legs which make it hard to go up and down the stairs. It comes and goes.Now a new symptom I am having muscle cramps on both hands underneath the thumb and the arches of my feet. I have facial numbness occasionally or what I would moreless call muscle tension of the face. My blood work came back normal except for Vitamin D. It was low and I am on 70,000 a week iu's of it for 3 months. I have been taking this for 7 weeks now and it really isn't changing anything. I am going to a neuro in 8 days and I can't wait. What could this be?? Is this BFS... they should rename it to AFS Aggravating fasciculation syndrome! I am going nuts! Oh yes- Thanks in advance!

[dreadpirateroberts]

Sounds oh so familiar! Many (or even most) of us here had some type of flu bug before all of this started. For myself, it started slowly (a twitching finger) but a couple of months (and large amounts of hysteria) later, it ballooned rapidly. 24/7 in my calves (also very common here) and randomly but often everywhere else. I'm betting heavily that you have BFS. So hang in there and let us know how your appointment went. He'll probably run a bunch of blood tests, do and EMG and an NCT and a lot of poking and prodding. Every neuro is different, though. Good luck.

[MarioMangler]

Welcome to the board! Sadly, your experiences sound very familiar to most of us here. We have all been through the early stages of BFS before. The early stages of BFS are the worst.

The good news is that BFS is perfectly harmless and has no greater significance than "your nerves are hyperactive". That's it, that is all that is going on with you. Now as for why your nerves are hyperactive, that's the million dollar question that is probably different for everyone. Your BFS is probably different from my BFS, and is probably different from other BFS. We all have the same symptoms, but I'm sure the lead-up to everyone's symptoms is probably a little bit different. For you? Probably the virus caused it. That's just the way it goes sometimes, sometimes viruses kick off BFS and then it hangs around in your body for a while.

Which unfortunately leads to me the bad news. The bad news is that your body is probably going to be like this for a while.

The best advice I can give you is to use the search function on this board and start poking around into other peoples' BFS experiences. Read the kind of tests they have had done, the kind of issues they have dealt with, and (in a lot of cases) how people have managed to cope with BFS and how it doesn't really bother them anymore. Those are the people you really want to read up on. In particular I'd check out either my own old posts, or posts from a user named Basso. Or just anything by Arron, GaryM, SuziQ, highpriority, or a host of other people I don't remember off the top of my head. There are lots of people who have had BFS for a very long time, and for most of them it scarcely even bothers them anymore at all. That's the kind of approach you are probably going to want to take when it comes to first understanding and dealing with BFS. It's not going to kill you, hell, it's not going to really even hurt you. But it WILL drive you crazy if you let it and if you let yourself veer off into crazy land.

Don't worry if that happens, by the way. It happens to almost everyone at first. Heck it happened to me. Just be aware that BFS is a bit of a mind trip, but in the end that's all it is. A mind trip that can be controlled if you know how to do it.

Best of luck in your journey, young BFS sufferer. We'll be here to help you.


P.S. Oh yeah and as you've already discovered, Vitamn D tablets? A waste of time. Supplements 99.99% of the time aren't going to do anything. Save the money and go out and get yourself a massage. It will help you more.

[twitchinstinks]

Thanks all. THis is the first peace of mind I have had. It helps to read all about the vibrations and buzzing. I have that too. I wonder how much of my hand cramps are from being on the computer and my arches hurting because I make myself do those stupid strength test.BTW I can stand on one foot on my tippy toes for 38 seconds. HA! Who can beat that. I have been lifting and unscrewing things like crazy too. BFS is a mental disorder as well. I am convinced. I was septic from an infection last year and ended up in the hospital for a week and really didn't think anything was wrong then well until it was in my face with a 104 fever but now I am thinking about how to do my will and who will get my china. All jokes aside this is driving me insane!!!!!!. My spasms pick a day meaning today is intercostal day! My ribs are going nuts. Last week it was neck and face mostly and the week before it was the legs. Why does it move around but yet i still have twitches everywhere it just picks hotspot of the day. Does anyone else have that?

[jro]

I am trying to post less to keep my mind off this stuff but I had to respond to you and let you know that I had the same onset you describe (including tongue, stiffness, tight face, and ribcage twitching!) over two years ago. My symptoms were not preceded by an illness but I've read a virus does not always produce typical illness symptoms. I still have no diagnosis despite every test under the sun. The last neuro I saw last month said bfs made sense as a way to categorize what I had but I don't know if that is any different than the "I don't know" dx I have gotten from other neuros. I can tell you that Klonopin helped me with my symptoms and two years later I have no weakness whatsoever. I just worked out tonight and had as much energy and strength as anyone else in the class if not more. All the advice you have received in this thread is top notch. By the way, I am 38 year old female. You are not alone.

[Barbie800]

Hang in there! Sounds like you have classic BFS. I have had body wide twitching for 16 months now. Even the inside of my ear has twitched. Luckily, it seems to be decreasing since I let the anxiety go. Your story is like everyone elses here. I bet any money that your neuro exam will be fine. It stinks but it's benign!

[twitchinstinks]

Thanks everyone. Really. This has ruined my summer. Literally. Yesterday was the first day I had any peace. Does anyones arms or legs ever feel heavy? I can still do what I need to do but it feels like they weigh 30 pounds.

[Jul965]

Hi All,
I am new here too and have questions. My twitching began in both calves about 11 months ago. I also twitch randomly in arms, back, shoulders, but 95% of my twitches are in both calves and a bit in thighs. REALLY makes it hard to relax and the anxiety that it generates has sometimes taken over my life. I am better now as far as the anxiety goes, but still obsessed with thinking this thing can't be normal and MUST be the harbinger of something sinister. I have been to a neuro and had EMG, and MRIs of spine, all of which were essentially normal. Also had a slew of blood work--all normal. I am awaiting results of potassium and calcium channel antibody tests, but doubt they will show anything. Also I have brisk knee reflexes, equal on both sides which the neuro finds puzzling and says is "not normal". I have always been an athlete (I am a 59 yo female) and play loads of tennis and power walk/jog several times weekly. Personally, I think my knee reflexes have always been brisk, but the fact that the neuro goes "hmm" about them creeps me out. I have had no atrophy, weakness, tripping, etc at any time during this ordeal. The neuro doesn't "think" it is anything bad, but wants to keep following me (I have another appt. in Oct). One questions I have is that the oddest thing is that the twitching in my calves is worse in the morning when I first wake up and move/stretch my legs -- it starts up immediately and if I want to go back to sleep, it is too annoying (and anxiety provoking!) to do so! I guess I feel that after a night of rest, my calves should not be twitching! It stops when I get up and walk around but comes back to some degree (seems to get less as the day goes on) when sitting. My dear husband is very supportive even though it must seem a little crazy to others that one has these weird symptoms! He measures my calves for me every few weeks -- no atrophy! I feel a little silly worrying so much about something that does not progress but know I can vent here and everyone will understand!
I would be interested to know if anyone else here experiences the twitching calves when they stretch their legs before getting out of bed. It would be greatly reassuring to me if this is also a common experience.
BTW twithinstinks, how did your neuro appt go?
Hope all was negative.
Julie

[MarioMangler]

I am better now as far as the anxiety goes, but still obsessed with thinking this thing can't be normal and MUST be the harbinger of something sinister.

That certainly doesn't sound like you are better with the anxiety.

You're 11 months in with no weakness or progression into anything. It's time to stop thinking this is a harbinger of something. And for Pete's sake, stop measuring your calves on a regular basis. You're going to give yourself OCD on top of having BFS.

My guess is that pretty much everybody here twitches violently in their calves when they first wake up and stretch. That's just kind of how BFS works.

I feel a little silly worrying so much about something that does not progress but know I can vent here and everyone will understand!

You can vent and we can understand. We have all been there before. However, that doesn't make the worrying any less silly. Obsessing and panicking (which is what you are still doing, despite your post) over something that is benign and progresses into nothing isn't just silly, in my opinion it is on par with having a low grade mental illness. This isn't to say that you are any crazier than the rest of us, we are/were all like that in the early stages of BFS. You just have to learn to recognize it for what it is (a mental problem, not a neurological problem) and nip it in the bud to make it stop happening. Otherwise you'll just be like Sisyphus, doing the same pointless thing over and over and over with no actual results to show for it. You just keep doing it (panicking, worrying, measuring calves, self testing) because it is what you have always done. Again, this doesn't make you any crazier than the rest of us, but it does make you crazy. To a certain extent we are all crazy. The goal here is to learn how not to be crazy.

You twitch, and your twitches mean nothing. So what? Go outside. Stop torturing your husband. Go on vacation. Enjoy life.

[twitchinstinks]

To begin with had them all the time and I mean all day everyday except when I was moving. I had them very violently in the morning. I called it my morning dance. It was the worse time of the day. This stuff will drive you nuts. Again things could be worse.

[simon_w]

Hi Julie

To respond to your specific question about the twitching being mor noticeable when at rest, e.g. the morning. This is very much the pattern that I experience after 22 months. I wake up at 4am because I need to pee and, as soon as I am haf awake, I am aware of forceful and unpleasant twitching, mostly of the calves but also brief twitches in multiple other sites. It stays like this making it hard to get back to sleep but when I finally get up in the morning and start moving around I become almost unaware of my twitching, although the aclves continue to visibly twitch all the tiem.

Hope this helps
Regards
Simon

[Jul965]

Thanks Simon and twitchinstinks. I am reassured that our symptoms of early morning twitching is similar. It is so weird to feel like popcorn is going off in your calves as you just lie in bed. Must be some chemical miscommunication that is more pronounced in the early morning hours,similar to variations in hormone levels that occur in the body at different times of the day. Guess we will never truly know what causes it. The good thing is that we have this forum to discuss it and obtain and give support to one another. It has been a great comfort to me!
Julie

[jro]

When I stretch my legs at night or in the morning, I often get a weird crampy feeling in them. I also get more twitching in the morning especially in the calves. If I am busy and moving around I feel mostly normal.

[Barbie800]

It amazes me that so many of us have the worst twitching in the morning especially after streting or getting up. I can wake up and not feel anything but as soon as I stretch I have twitches going off everywhere. What is that? That fact that this happens to so many of us really tells me that we do have the same thing going on.