Twitching for 8 Months: Morning Woes

O.k... I have been twitching all over for almost 8 months now. Some days I get a grip on this stuff and other days like today I am a total mess. This morning was so terrible for me. Not only was my whole body twitching, but I was getting these jerks all over my body. I guess kinda like myclonic jerks but smaller. I don't even know how to expalin it. This only happens in the morning especially after I get up and then lay back down. I just broke down this morning with this and feel like I can't take it anymore. I just want someone to tell me what the heck this is and that I'm going to be o.k. I know I have had tons of tests but I keep thinking that the doctors are missing something. I know it's not ALS. I'm not afraid of that anymore but I am afriad of what is causing this. I'm sure I will calm down in a few days but I am having a weak moment right now. Any support would be great. ~Leslie

leslie,you are defnitely not alone!!!! this morning i thougt about posting something similar... feet and arms, everything twitched like crazy after a few days with decreased twitching. just started my fifth month of twitching and some days i am so positive,then i don´t care about twitching and think some day this condition will be gone or at least not concern me any more. on days like today it´s very hard to stay positive, even if i know that it is not a serious illness i am suffering from... every few minutes one gets reminded that life is now different from how it was before, and you don´t know why... and that it might stay like this forever... i am tired of this but i think one day i will get used to it and will be able to really don´t care. on days like this i tell myself that i am on the right track, but sometimes its two steps forward and one step back (one step forward and two steps back also happens...) but the destination is in each step!! bfs is benign but sometimes it just sucks....

I totally understand how frustrating it is to deal with these symptoms. I had twitching in the back of my thighs as I sipped my morning coffee. I had a one jolt twitch in the back of my tongue as I drove to work. I get those little jerks all the time. It really is just more manifestations of the hyperexcited nerves we know we had. I still remember the week before this all started and how differently my body felt. It baffles me how my whole body could be effected so suddenly and for so long. As everyone well knows I have tested my self silly and probed many articles and neuros and still just some educated guesses but not clear answers. I just keep remembering all of you out there and know that this is a real phenomenon that just has to be accepted with a bit of mystery but ultimately with fact based hoped that it is nothing to panic over just cope with. I cope with my meds (wish I did not need them but I do) and doing everything a healthy normal person does. I shop. I eat out. I work hard at my job. I do aerobic dance from 6:30 until 7:30 pm even if I feel dead tired at the end of the day. I jog a couple miles and relax at the spa every chance I get. I plan holidays with my family and friends. Basically, I keep living like I always did but maybe I pamper myself a little more. I take lots of vitamins and now an amino acid to give my nerves lots of support in being as healthy as they can be.Bottom line, use this craziness as an excuse to indulge yourself in healthy ways. You deserve and need it.I wish we could get together in person occassionally. We are so not alone.Krackersones

Thanks Sylvia & Krackersones. I feel better now. I don't know why I let this stuff get to me. It's not like I haven't experienced it before. It's just so weird cause the last few days I have hardly had much twitching. I thought the new medication I was taking was finally working and then today I felt like a popcorn machine. Some days this is just hard to deal with even if it is benign. Thanks again for your responses. It really helped.~Leslie

Maybe today should have been National BFS day as I, too, had my worst morning in a long long time. Twitching everywhere and a lot of it at the same time (usually it just roams around except for my calves where it is non stop). Took a klonopin and it helped a bit, but eventually I couldn't handle it mentally and took a xanax to just calm down. It helped, but I know what you are talking about when it just builds up on you and even though you are pretty sure its "benign" you still have that doubt. After work I forced myself into a very long jog (7.5 miles! about twice what I usually do) and that definitely helped. Still twitching, but I'm mentally stronger at the moment. Get out and get some good exercise - walk, wii, anything. It will help and we are here to support you. You have supported others, including me, and now you deserve some in return. Keep up the good fight!MIke

Thanks Mike. I know how you feel with the non stop twitching in the calves. Mine go crazy in the mornings. This is the craziest thing I have ever been through. With the help of this board, I have calmed down. I also take Klonopin and it does help the twitching a bit but it also settles me down. ~Leslie

Hey Barbie. I know exactly what you are going through. I began twitching after my son was born and had a hepititus immunization. Long story short, my son is 6 now. I tried numerous meds and I don't think it was the answer for me. I am still twitching. Sometimes it's bad. Believe me, you will always have some doubt in your mind about this. You will NEVER have your answer as to why. I know in my heart that the shot I got did this to me, but that has not been proven. In time, you will come to peace with this. I don't think any of us will be symptom free EVER. I think we will be twitching forever! Be patient, it will take a while. However you will be on here as a "veteran twitcher" and giving advise to someone else. I promise!

I've had this crap since 2005 and it has been a roller coaster ride. Just remember that that is what it is - you hit bottom and you climb back up. Symptoms wax and wane, your responses change, life goes on. When you're in the dregs it is hard to see out but you will come around - you know you will - it will cycle and soon be climbing out of it. I just had a really bad bout and I can feel it starting - just today - to pull back and no matter how miserable I was yesterday it now matters less. Give it a little time and be kind to yourself.

Hi,I tried to pm you a few weeks ago, but I don't seem to be able to.I posted in the middle of the night and I am at my wit's end and am not sleeping and for me it has been about 13 years, so I still get really upset sometimes.I called my neuro recently because he had given me Botox injections which have apparently failed this time and once again I found myself saying - I know this is benign (he is at a Movement Disorders Clinic and has many Parkinsons patients), it will not kill me, it could be a lot worse. He said the "benign" only indicates that is not one of the nasties, but that in no way did he ever intend to minimize the effect this is having on my quality of life. It was so good to hear him say that. It did not change anything, but it was good to hear.This problem sure does mess with your life at times and it is frustrating.I guess that is why we come here and write where there are other people who understand.Shirley