Dealing with BFS: Life Ruined?

Highlights Only
S

spinninghead

Member
BFS may be "benign" in that it won't kill me, but it has destroyed my quality of life. I don't know if that is just because of the way I deal with BFS or if the symptoms are awful enough to give me some valid reason for feeling like the quality of my life is truly poor. But the bottom line is that it is hard to ignore jumping, buzzing, twitching, cramping muscles and just go to sleep or read a book.

On the subject of sleep and rest: I'm new here, and I don't know how any of you sleep if your calves and muscles are "having a party" 24/7, but I don't think I've seen that discussed much. My calves, in particular, feel really tight and twitchy and regularly go into hard spasms and cramps. When they are not cramping they feel like they will do so at any moment, which keeps me constantly on edge. I'm totally exhausted because I never get more than an hour or two of sleep at night. Some nights I'm twitching and have spasms all over my body (face, neck, arms, hands, rib area, stomach, thighs, calves, feet). I am beginning to wonder if I am going to have to give up a 22 year career because there are so many days that I am just hanging on with my fingernails! Sleep deprivation is serious after weeks and months of it. I have a position with a lot of responsibility and stress. I'm not sure I can continue to function much longer.

Seems like the twitching gets worse with lack of sleep, but then I can't sleep because of the twitching. :confused: What a cycle! :crying:

I find that I am beginning to arrange my day around whatever I think might help reduce my symptoms, i.e. cut down on exercise, alcohol, caffeine, leave off certain medications, etc. I seem to be totally focused on my body's symptoms and what is twitching and whether or not it is going into a cramp. Sleep, forget real rest, has become an obsession although I am not taking any drugs to make myself sleep. I hate taking drugs because that opens up a whole new bag of side effects and possibilities to be examined and analyzed.

I have been reading comments on this forum a lot lately and all of you have given me great comfort. I am about 99.9% positive I have BFS. I can't get in to see a neurologist until some time in 2006 and have been twitching and having muscle cramps for a couple of years with absolutely no weakness. In fact, for most of my life my muscles were the first ones to cramp during group exercise (In aerobics class I'd be sitting off on the side massaging my leg or foot and this was 20 yrs ago) and have always been a bit twitchy. It has only been within the last 6-9 months that I've reached the point where it's really cutting into the quality of my life. I am almost inclined to use the word "debilitating". I hate that word, because *** sufferers and many others give true definition to debilitation. But . . . . what the heck, I feel that I am becoming more and more debilitated in that I can't engage in my normal activities, either because I am exhausted or because my muscles are cramping.

So THANKS to all of you who have such a rational and compassionate way of responding to people who are hysterical with fear (the way I was when I started reading this forum). Your calm assurances go a long way with people who need to hear just what you are saying at the moment, and I can't tell you how much it means to me to find this community.

Now, finally, to the issue of quality of life in general, how is BFS changing your life? Or can some of you find a way to almost ignore severe symptoms and just live life normally? Can most of you manage to sleep well? My symptoms are pretty bad 24/7, and I'm really struggling with how to live with this.

Sleep is a big focus of mine (you'd never know it would you?) because I never experience it any more. How do you sleep?

Sending a big howdy to all,
~ ~ Tex
 
Oh, and P.S.,I posted here a few times under the user name 1GoodNana. Somehow I managed to get my user name or password screwed up so I just set up a new one as TexasGirl.

Maybe this one will stick. :LOL:

Tex
 
Hi and welcome TexasGirl!!!

BFS really affected my life in the first six months (been twitching, buzzing, you name it sensations for 19 mos. now) I couldn't sleep due to this new constant "feeling" in my calves. Sometimes in the evening, a "thumper" type twitch will start in my bicep, tricep, leg etc. and will go on for what seems like forever. It about drives me nuts. How do I cope? I take Ambien to sleep, otherwise I never would. I don't like to take pills of anykind (except my vitamins), but I'd never sleep otherwise. I'm sure you'll get lots of great advice from others and how they cope, but I need my Ambien.

I literally twitch 24/7 in my calves, and everywhere else on and off (seems like other places go in cycles)

How old are you, btw (if you don't mind my asking ;) ) I'm 43 and otherwise in great health.

Ginny
 
Hi Ginny!

Thanks for your response. I am 58 and seemed to be in good shape/health until all of a sudden I realized that I was twitching and having muscle cramps and it just was not going away. I have 2 elderly quite ill parents (dad has Alzheimer's) and I have to take care of both of them since I am an only child. That, in addition to a 60-hour work week, was already putting me under a lot of stress. But then I just realized that I was having more and more episodes of muscle cramps and that I could actually see my muscles moving beneath my skin. That's what really freaked me out. It's just creepy watching my own body move when I'm not making it move! It's like having little animals living under my skin. Yikes!

Anyway, after many months of just trying to ignore the ever increasing symptoms which I had originally thought would end, I finally did the usual Google search and came up with ALS. Ohmigod! Here I am 58 years old and have ALS symptoms, or so I thought. Further Google searches eventually brought me here to this forum where I began to read everyone's posts. I just knew I had found a home. The symptoms mentioned by most people were exactly like mine.

And yes, I definitely have myoclonic jerks. I didn't even know what it was. This just started in the last couple of months. As if twitching and cramping all over 24/7 is not enough, now just in case I ever do get relaxed enough to begin fading off to sleep, I experience the BIG JERK. Myoclonic jerk = Big jerk to me. Over and over and over if I am lucky enough to be able to begin fading off to sleep. The BIG JERK is going to keep me awake for sure! In fact, I was just over on the couch finally beginning to get relaxed enough to fade into the blissful twilight of sleep and then the BIG JERK hit . . . almost knocked me off onto the floor! I jerked so hard that I don't see how I can keep doing that and not break something. So, now I'm over here on the computer -- it's 2 AM in Texas. :crying: My alarm will go off in 3-1/2 hours so that I can get ready for another lovely day at work with no sleep.

Thanks again for your response, and I look forward to being part of this community of wonderful people.

Cheers!
Tex

P.S. Are you able to function okay the next day when you take Ambien? I'm afraid that if I take a sleeping pill, I will feel so groggy the next day I won't be able to really do anything. Of course, the quality of my days now with no sleep are not any good at all so it's probably a moot point.
 
Hi Ginny. That's an interesting question you pose about BFS. My initial response was that it has decreased my quality of life, but the more I thought about it I think BFS has actually increased it. Yes its true that one cannot completely ignore muscle twitching and other symptoms that continue all day every day, BUT I have to consider my mental state too at this point. Seeing that a few months ago I was convinced I had the dreaded *** then for a bit MS, it has given me a different perspective on things. The joy and relief I felt when my neuro tests came back okay was something I've never experienced before. I see things differently now and I'm much more thankful for everything I have been blessed with. And to be honest, I don't notice my twitching NEARLY as much as before. After 5 or 6 months of twitching and a BFS dx I'm just used to it. Yeah the bigger thumpers and very noticable and the cramping sensations but I think my brain has just accepted them as part of my normal body functions.
Oh, so THAT'S what myoclonic jerks are. I think I get those but I think I was having those long before BFS came into the picture. I'm not for sure that's why I would have but usually it would happen when i was drifting off to sleep. Occasionally I would kick or throw my arm, but it almost felt like my body was trying to kick or move but I was asleep and couldn't, then with a big thrust I would jerk. I always thought that was weird but I never really worried too much about it. I think that would occur during more stressful periods.
 
Johnny,

I don't have the magic dx yet that eliminates dread diseases, and won't be able to go to the neuro doc until 2006, but I am certainly grateful I found this community otherwise I'd be a basket case right now. So to the extent that I am convinced I have BFS and not something life-ending, I am very grateful and much, much more relaxed about it. I'll even be more relieved to actually hear a neurologist say "you're fine".

I must have the type of BFS that includes severe cramps because you can't really get on with life and ignore them when your entire body is twisting and cramping. I hear people say that often, i.e. "I just ignore the twitches and go on". For me it goes way beyond twitches although not all of the time.

Last night was a particularly bad night where about every 10th twitch turned into an actual cramp although they were short term ones. I only had to jump up and try to massage a crampy muscle about 100 times. It's an icky visual, but if you can just imagine a worm on a hot stove and what that critter would be trying to do to get relief . . . that was me last night. I thought I would lose my mind. Lucky for me that it's not usually that bad. I have absolutely no idea what brought it on so I have no idea whether I'm in for another night of torture or not. And again, let me say that there is NO weakness. Fatigue but no clinical weakness. Even after a night like last night, I'm still 99.9% sure I have BFS. But I can guarantee you that during the night I felt that I had ZERO quality of life, and I forgot to be grateful for anything.

You just don't know what's going to happen from day to day, and I think that contributes to the decrease in my quality of life. Right now I'm still in the stage where I feel like some unseen puppeteer is jerking me around and frankly, it really is pis*ing me off. There are hours and even days and weeks of my life that are being taken away from me because of a disease with the word "benign" in the name????

Okay, enough whining. I'm glad I can come here and have my say when it gets really nasty. I'll work on being grateful, but it would sure help if I had more than 10 hours sleep in the last 30 days.

, you mentioned Ambien and I'm calling my internist right now!

what is the dosage you take? I think they have 5 mg and 10 mg tablets. Any side effects? This drug is supposed to be prescribed for short-term use. How long have you been taking it?

I am really interested in hearing suggestions for ways to cope with symptoms whether it's drug therapy, natural therapies, mind-body connections, whatever might work for you. Right now, just ignoring it does not seem to be working for me although I wouldn't be surprised if over time I begin telling newcomers the same thing (at least I hope I'll be able to say "I just ignore it" ;) ).

Many Thanks!
 
Hey TexasGirl,

I had the same thing with the nuero appointment they told me I could see them in 6 month.

Now I'm thinking, if I have something then six months was WAY to long.

So, I had to play the medical game and go to the ER and tell them about my symptoms. I told them it was not an emergency and to see me when possiable. They did the basic Neuro tests, touch your nose, jump on one foot, moon walk. Ok, not the last one. :LOL:

What it did is got me refered to the Neuro in 2 days insted of 180 days. And I had piece of mind 2 days later insted of loosing my mind for 180 days. It was well worth the $50 ER visit.

Just a thought...
 
strangefeeling,

That was a very creative way to get in to see a neurologist. I never thought of that! I have some insurance issues to work out before I can go to a primary care physician who can recommend me to a neurologist so it's still going to be a long while for me. My new insurance does not go into effect until January 2006 so I can even begin the process until then.

I don't suppose you have any equally creative ways to sleep at night or suggestions for ways to have a good quality of life with all of the recurring symptoms? :unsure:

Tex
 
I have also been prescribed Ambien. I take 1 5mg tablet at night, as needed. I don't take it every night. My neuro prescribed it for me during my last visit in September and she gave me 6 refills. She was not worried about it being addictive like some other sleep aids were. We talked about that because I was concerned about addictiveness. So far, I have not had any side effects with it. The only thing is that I have had trouble sleeping long before my BFS diagnosis. I notice that if I take one, within an hour I fall right to sleep and it is a hard, solid sleep, as I don't hear my husband come to bed at all or hear every sound in the house, which is what it was like for me before. But around 2:30 or 3:00, I wake up and then can't fall back into a real sleep, even with the Ambien. The pill ususally gives me around 4-5 hours of good sleep and then I dose and wake on and off all night.
 
Sharon, thanks for your response. I, too, have suffered with chronic insomnia most of my life. So it's not as though I am going from 9-10 hours of sleep to no hours. The most I ever got was 4 hours on a good night. Now, a good night is more like 2 hours. I can't tell you how many nights I just watch the clock and realize that it's going to be another night where there is zero sleep! That is so depressing.

I've put a call into my internist to get a prescription for Ambien. I don't know if she will just call it in to the pharmacy without seeing me, and of course, I can't get an appointment for weeks! I've been going to her for 15 years so maybe she will do it.

Cheers ~ ~ Tex! :)
 
Groan TG-how frustrating for you that you can't get an appt.

I'm not sure if this will make you feel better, but when I first started noticing symptoms and was convinced I was dying (before I discovered this board,) I went through a period where I couldn't BUY a good night's sleep. Here is how my doctor explained it to me...

The problem with the myoclonic jerks is this; you are already severely sleep deprived. All bfs symptoms get much worse when you are exhausted. Because of sleep deprivation, as soon as you lie down, you fall almost immediately into rem sleep. The suddenness of this causes your body to actually think it is dying, thus you have more myoclonic jerking than you would normally. It is a very viscious cycle.

I used to lay down to sleep and jerk up violently every night with this sense of impending doom that I was going to stop breathing and die. Try as I might, I could not fall asleep. (And I'm usually a pretty good sleeper.) No sooner would I start drifting off, and up I would be with a sharp, loud, terrified gasp. Even when I took medications the first few times, it still kept happening. I actually made my husband stay up and watch me fall asleep so I could be assured I wouldn't die in my sleep.

It is very strange to look back on it now. It took consistency with meds and a very patient husband to get me back on a normal schedule of restful sleep. I didn't take ambien, I think I took pain meds and muscle relaxants because of the crampy pains I was having.

I'm not sure if this helps you or not, but in my experience, once I broke the insomnia cycle, my jerking improved almost 100%.
 
Oh-and Texasgirl-have you made an appt with your gyn?

Menopause can cause lots of leg cramps because of the hormonal changes going on in your body. Lots of times it is easier to get a gyn appt than a neuro appt. Just a thought.
 
YES, it has definitely messed with my quality of life. I can't complain too much because there are so many diseases that are much worse, and the people who have them would surely trade places with us in a heartbeat, however....I have poor endurance, fatigue is a problem, I have muscular aches and pains, I have annoying buzzzzzing and vibrating. My sleep is affected, and I am always trying to plan around my overall feeling of feeling crappy!
 
TexasGirl,

BFS has definitly changed my quality of life. In the beginning I was just like you, all the crazy symptom were keeping me from sleeping and it definitly was dragging me down. It was a vicious cycle I could sleep because of the symptoms and the more sleep I lost the worse the symptoms got. I was afraid of med.'s to but I couldn't take it any more so I went back to the Neuro. and he gave me Klonopin 2mg and told me to take it a little while before bed each night. Klonopin has an anxiety med. in it so it helps you relax, but it also has a antispasm med. in it so it helps lessen some of the more bothersome symptoms, for me anyway. I don't feel drugged in the morning, or any other neg. side affects. I also liked the fact that it wasn't one of those meds. you HAD to take daily for it to work, if I don't feel I need it I don't have to take it, but there not many nights like that. I still have symptoms during the day, but their not nearly as bad when I get a good nights sleep. So while my quality of life is not PRE-BFS it is wonderful compared to what it was when all this started. What ever you try, try something, go to the Dr. and ask for help. I know how horrible it is to feel the way you've been feeling, and I hope you find some relief. :)
 
Wow Buzzygirl, you sound like me when you say "always trying to plan around my overall feeling of feeling crappy!" I hate that feeling. It's like the only thing I focus on is symptoms and even if I'm feeling okay, I'm afraid it will change in a flash and then I will be feeling crappy again. So, to a great extent, I'm sure I am my own worst enemy because even when I feel okay, I still don't relax and enjoy.

Cinderella, one of these days I will likely want to talk to a neuro and get Klonopin. I want to put that off as long as I can. Right now my twitching is much, much better although we all know that can change any moment.

Julia, what is going on with my parents is a nightmare. Even if I were well, that would send me into the dumper. But between their situation and my own which also includes significant depression, it seems like there is no light at the end of the tunnel. Honestly, there are times when I am as disoriented as my dad who has Alzheimer's. I am so fatigued and I know that chronic anxiety is taking me down a notch or two a day until the bottom is sure looking a lot closer. I can't go to a neuro until 2006 and have just simply decided that I have BFS based on everyone's descriptions. Their symptoms are my symptoms exactly. When I found this forum, it was "ohmigosh". I couldn't believe it. My symptoms exactly. Like, miguel4life, I am confident that you are a BFSer, and I'm sure that when you and I both finally get to a neuro, he/she will confirm that diagnosis.

RyanBabz, sleep apnea can cause all kinds of things, and one thing is for sure. BFS and lack of sleep and increased twitching go together. Good luck with all of your tests, and I hope you can get to the bottom of all of this very soon. Whatever the diagnosis, it will be benign based on all of the information you've given us but I know it can drive you nuts. And I kind of hate that word "benign" because the quality of your life can be destroyed by a "benign" condition. I'm glad it's benign but I sure wish other people didn't just blow it off as no big deal. Hopefully once you get a diagnosis then you'll get the right treatment and things will start looking up.

Ginny and ristinaL91, I cut the Ambien in half and it didn't even make me blink much less put me to sleep. I have been with my parents for several days and not really able to try a full pill which I am going to do tonight. I hope it will give me a good night's sleep because I have a HUGE report to do tomorrow at work and honestly right now I'm so tired that I don't think I can remember how to tie my shoes!

Thanks to all for your comments! Here's wishing everyone a good night's sleep. Since I never experience that myself, it's really the nicest wish I can offer besides "hope you stop twitching". ;)

Cheers!
~ Tex
 
As I've written before, bfs has had a huge negative effect on my life, particularly my family life and my career. In my case it is simply the fatigue (including exercise intolerance) and physical stress. The twitching per se doesn't bother me that much (I don't like it, but can deal), and I sleep ok, and I have no als anxiety.

[In my 20s and 30s I had terrible terrible insomnia, so I do sympathize there. And I have periodically in my life had health anxiety, so I sympathize there too. But now it is simply the exhaustion caused by 24/7 constant all over fxs.]
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top