BFS: Remission Possible!

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DancingQueen2Lindy

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Hi all,I just wanted to share my experience with you all and give you some hope that BFS can lessen (or go into remission).I haven't been on this site in ages since I realised that BFS was basically triggered by my anxiety that I thought I had ALS. Well........I don't have ALS.........and my symptoms have basically gone away to levels that kind of make me laugh now LOL!You might be thinking that BFS can never make you laugh. Well....it sure does with me. Once I realised that it was a cause of my own doing (always avoiding issues, never confronting my fears) I turned my thought patterns around so much that I actually snicker when I get the odd twitch. I've definitely conquered BFS and...no matter if I have this for the rest of my life, I'd have to say it's only a reminder to me that I should let off steam once in a while and not hold it all in.My BFS started (I think) after a 3 day fever so I'm still not sure if it's something that you actually catch or it's one of those things that basically you get when your body has said that enough is enough. Anyhow, I got severe leg cramps, got those high CK levels (scared the crap out of me as that was the time that I was reading about the link with ALS), got twitches that were so bad that they ran all over my back and had constant twitching in my calves. Well....that was then.........this is now.........Now......12 months on......I don't feel any twitches in my calves or anywhere else for that matter. Oh...I get the odd twitch now and again in some place that I've been workign on in the gym but it's only 1 or 2 twitches then it goes away. My secret? I basically came to terms with BFS being a condition brought about by my own undoing and decided to get back into life and HAVE SOME FUN! The fun turned out to be the best thing ever as it was the cure that I needed all along. Don't bog yourself down with thinking you have ALS. ALS is a RARE condition. I really feel for people that have it, but take note folks....Aussie scientists just isolated the defective gene that causes people to get ALS (Motor Neurone Disease here) so a cure is, hopefully (and I genuinely mean that as I know 2 people that have it) not that far away. Get out again. Don't worry if people see you twitching in public. Just have fun. Your happiness and laughter will hopefully lessen your symptoms in no time at all.If you ever get well enough again to not give your symptoms a second thought I can pretty much bet that they'll decrease in severity each and every day that you stop thinking about them. I do wish that you could understand me, but alas, I was in your place 6 months ago, feeling pretty sorry for myself so I understand if you think that what I'm saying won't change you overnight.Anyhow, I just thought I'd post this as there are so many other posts that seem to focus on the symptoms....not many positive posts (except the replies) coming out.If you read any posts that say not to get stressed over it....TAKE THEIR WORD! These guys and gals know what they are talking about! Just chill out. Relax. Do some meditation. Take a holiday. Whatever you do....don't think about BFS!I wish you all well in your journey of discovery.
 
this is another great post!! Someone else(OCD) I think left a similar post. I think we definitely need more success stories to calm and inspire!! I too went through my darkest of dark days since my BFS started, but as the months have rolled on and the more rational I become, I've noticed the twitching beginning to wax and wane as opposed to a constant nuisance!! I hope more people read your post. I do agree also that being active, laughing, keeping busy, and for me, answering my bodie's call for help my eating better and exercising have helped a lot. It makes me feel more in control in something that I once thought was way beyond me. I think people should also know that the very smallest improvements are still IMPROVEMENTS, and that anything sinister would NOT allow for that!! Thanks again for a great post, a pleasure to read. This site has helped so much.
 
I came back to check my replies from my post. I see not a lot of people posted to my thread about "moving on, I cant keep being conquered" but I truly understand. I hope I DID NOT OFFEND anyone or belittle ANYONE and their problems. I myself just kept focusing on the negativity I sensed on the board and said "I cant allow myself to keep seeing this, its just going to make me feel guilty for moving on and not being worried". Does that even make sense?I had my dark hellish days..and unfortunately at the time my twitches started again I was in my first trimesters of pregnancy and that was TOTALLLLLLY horrid for me. Here I am 28 expecting my first child and all I can focus on is DEATH! What a way to start out your FIRST PREGNANCY. Thanks to PRAYERS, PEOPLE ON THIS SITE, GOOD DOCTORS and a COMFORTING FAMILY I pulled out of the depths of despair. Became more RATIONAL and REASONABLE. Last January when I first had a set of twitches or actually I think it was before that..just Jan 31st was the first day I mentioned to a doc.... I was NOT worried, I had no care...I was actually annoyed but amused , baught magnesium and moved on. I never thought a THING about it until I googled this PAST time almost 3 months ago now. Nothing has changed. I still have the same symptoms I had the first bout of twitching. Only difference NOW is...IM PREGNANT and A LOT FATTER :sick: I read in my "what to expect when expecting book" that pins n needles sensation in your second trimester is COMMON and it happens due to horomones and fluids...also from pressure of your sciatic nerve. (she was on mine from the get go..I had to see a specialist) So before I even jumped on the MS Band wagon I NIPPED IT... Now my vision is blurry, I have floaters *which I've always had really* but before I jump on the Brain tumor band wagon, I know that blurry vision and floaters ARE COMMON during pregnancy as well- and the MOST COMMON symptom of a brain tumor has nothing to do w/ vision or floaters, unless well your seeing DOUBLES.Anyhow, I just REALLY loved seeing this POST and the POSITIVITY! This site REALLY NEEDS IT BACK! And I also wanted to apologize for giving up and getting a little aggitated at some for focusing on only the bad. Its part of OCD/Hypochondria and for some "human nature" , I've been there!!! I hope my apologies are EXCEPTED and I hope to con't to see GREAT POST such as these!!! God Bless everyone!!Remember to LIVE, LAUGH, and LOVE! We have ONE SHOT AT THIS LIFE!!!!! Make the BEST OF IT! ;)
 
PregnantNHappy, I couldnt agree more!! We definitely need more words of encouragement, success stories, etc.....I know this forum is teeming with fear and anxiety, which believe me, is well deserved!! But as we move past our initial "scares" and slowly back towards rationality, we need these posts to guide and calm those going through thier first months of BFS.
 
It can also increase in severity also! I am nearly 3 years into this and have developed even more severe muscle stiffness/tightness in my legs, muscle pain, and numbness/tingling in my legs and feet. I contacted the neuromuscular specialist I have seen in the past to see what my next steps in treating this condition will be.Swift_TaySwift20
 
Right now it really is impossible for me to say objectively whether I am better or worse than I was a year ago. Certainly some things that were issues then have lessened now.The one thing I am battling right now is constant fatigue, to the extent that I am almost considering investing in the notion that I may have CFS, though I really think I need to take a long view and consider whether I have ever felt worse than I do now, and I probably have, it is just that I have forgotten about it.If the weather were better I would go out and take a long walk, and if I survived that without total collapse I would maybe consider all's right with the world after all.
 
Suit up, warm up and go take that WALK PLEAAAAAAAAAAAAAAAASE Cap H. When I just had my freak out from my legs being tired at wal mart and back hurting (mind u im 7 months pregnant) I went Straight to Dr.Google...BIG NO NO NO. I took my anti anxiety meds, now Im up doing laundry, pulling weeds, and my boxer took me for a walk...IM FINE!! You are too, Get out there and PROVE to yourself..YOU CAN DO THIS! , CAUSE U CAN! :sick:
 
I myself am worse off that a year ago. Gas is more expensive and everything just cost so much more than a year ago. Oh, then there is the BCFS which has pretty much calmed down way down! :LOL:This is weird but sounds very appealing: "I just had my freak out from my legs" I'mmmmmm"7 months pregnant".....*beep*"I took my anti anxiety meds"....right on!"Im up doing laundry, pulling weeds"....bummer but weed does help!
 
lol Zeke. Weed. eh? I wish I did not get drug test. Maybe we should pack up and move to Canada. Just Kidding. Im new here. Just reading post. I have the random 'single fires'. People think I am nuts because it does not happen long enough for me to show them. They say "its in your head". Well yea, Seemingly so, but they are also really happening. Sorry I just thought your post was hilarious. Good laugh. Much needed.Abs :oops:
 
Capt H, I had the whole weak leg thing. Basically, my right thigh was tight as all buggery and I found that it was hard (and really weird) to walk normal without thinking about how to actually walk. All of that has gone now due to just realising that BFS is nothing terminal...annoying originally....but not terminal.To be quite honest, I have one of the most stressful jobs out there guys. I am the Property Manager for my Australian Government Department and also manage the Corporate Contracts section. I have days that would make your skin crawl from all the things that go on and have to be resolved. I guess you'd think that my BFS would be worse now right? Think again :) It went away to hardly anything cos I just decided that when things need doing they should get done there and then and not be put aside for another day. It's great actually. If it get's too busy I start delegating down. I'd recommend that if you can't do that then delegate up! My probs all came up when I focused on the BFS in a negative way. Just learn what it is and then try and forget about it. Seriously! If you forget about it the symptoms will get better and better. Just don't dwell on it as it's like putting gasoline on a fire.
 
That is good advice Lindyman. After developing BCFS, becoming very sick exhausted and worried about all the different and seemingly debilitating symptoms, I didn't know how I was going to work again or what I would be capable of ever doing again. The symptoms I've struggled with over the last year were sometimes very trying. Perceived weakness in my left leg, cramping in my feet, muscle stiffness, internal vibrations and of course surprise bouts of wide spread twitching, all made me feel very worried.Then I volunteered at my son's school for an activity there and, while it is of course no where near the same level of stress that you have, it was a crazy night. It was Halloween and everyone who came to the party was entitled to hot dog dinner. Well, there hot dogs hadn't been started early enough when I got there and it was mass pandemonium as we tried to feed tons of people as quickly as we could with hot dogs that weren't ready in time. Hot dogs, buns, soda, and foil tray were flying every where as we tried to keep up. It was a very hot and exhausting couple of hours with the line sometimes being 50 people long who were hungry and impatient. Anyway, when it was all said and done, I felt so much better about everything. I didn’t think about my symptoms during that time, it proved to me that I was capable of more than I thought and I was relieved. I still struggle with the symptoms a lot sometimes, like when I'm getting sick or after exercising, but am being treated by a knowledgeable neurologist and that has done wonders for me physically and emotionally. Just thought I would add my two cents as usual. :D) Sir_Trouserz
 
This is my first time to post something on this website. However, I have been looking at it for the past couple of months and have found great relief in the posts on here. I am a 21 year old mother of two and have been twitching for about two years. At first I thought just like everyone else on here that I had ***. It tortured me like demons and I fell into a deep depression. I would imagine that I was weak and it would become so REAL to me that I would actually physically become weak. It's crazy how your body reacts to what your thinking. So here I am 2 years later and am still walking, talking, and breathing and running and playing with my children. I want everyone to know that this BFS or whatever it is called is trickery of the devil to try and ruin someone's life. I've had all the sensations. Choking around the neck, pins and needles, weakness, buzzing, dizziness, etc. It's all lies from the devil. This BFS if you will notice will become increasingly worse when thought about. As I'm thinking about it I'm becoming twitchy. It's CRAZY!!! If everyone could somehow learn to take it lightly and not concentrate on it, you would see that it practically goes away with a few twitches every now and then. You have to be strong and rebuke the devil. Tell him that he will not have a place in your life and pray daily. God will give you peace and comfort and your life back again. I know it may sound like I'm a holyroller but trust me, god said that he would never leave us or forsake us and would go with us all th way to the ends of the Earth. Trust in Him and you WILL find peace!!!Love to all you twitchers!!!Katie :D)
 

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