Living with Fear of ALS: 10 Years On

Greetings all. It's been about a year or so since I have been around. Nothing really to say other then I hope anyone reading this gets through the hell that is "fear of ALS".I have had bfs for close to ten years and nothing much has changed. I twitch. I cramp. I ache. Everywhere. I live with it.Sorry not much else to say right now. I will lurk around for awhile and see if I can helpDD

Can you check the post ALS or bfs. It's the post right on top of yours and tell me what you think of it ?

Long time no see, inzTwoToneTunes. Thank for checking in!

Been a reall long time Johnny . Good to see you

since you both have gone through bfs for awhile I wanted to take this opportunity and ask you about one symptom that have not got any better for the last year. I could care less about my twitches at this time. they have decreased in duration and strength however, my initial symptom were legs feeling heavy after exercise or minimal exertion of the muscles in thighs and calves. Last night I was performing a cultural folkloric dance for my church and teaching kids how to do it. the dance is called Dabki. legs strength/endurance is needed to perform it. I was able to do it however after I was done, my legs felt so heavy that I could not walk properly. now my question is "does this mean weakness of muscles" This feeling was never there before BFS started. I used to dance but never felt the heavy feeling and inability to walk without that heavy feeling and the feeling of collapsing. but that feeling only last for about 15 minutes and after I relax the heaviness is gone and I can walkwhat do you guys think of it?

I understand that. but they are heavy I am not imaging that. when I walk they were very heavy. they are real. I don't know what to think of. do you think the heavy feeling is associated with my thoughts?but if that's the case why my legs were slow and I could barely walk . that's what scaring me.

You are misunderstanding me. Yes, the heavy, tired, fatigued legs are VERY real. I've been down the same road. What I experienced weren't imagined symptoms and experiences. What I'm saying is that these real symptoms are not associated with a nasty disease and are nothing to worry about.

Get it all the time. Actually that is one symptom that scared me quite a bit. It does not matter whether you feel your twitches or not. You are twitching and your muscles are fatiguing faster then normal because of it. Some people think that just BFs itself causes muscle fatigue or "post malaise syndrome" or just the fact that your muscles are constantly working out causes them to tire faster. Who knows really but either way our muscles just don't have the stamina to keep up. The fact that you CAN dance at all ends the question of ALS. What happens is your muscles just say enough is enough. I have had my legs seize up. They felt like lead. Very heavy. I still work out regularly and it doesn't matter, if I work my arms they feel tired and heavy easy. If it's my legs they do the same. It is frustrating but you get used to it. When BFs started it real scary. I would ride a bike and pray that when I got done they would not feel that way but it did every time. I used to get so scared . Eventually I just got mad at BFs and decided to kicks it's a@@ ) while it kicks mine. One more thing. Don't forget we are getting older by the minute. That has nothing to do with BFs. DD

Want to expand on this a little. The bigger the muscle the more we feel it. Your legs have big muscles that require lots of energy to move. That's why cramps hurt worse in the legs , they are bigger. With twitching the muscle never rests. I don't care who you talk to with BFs you twitch all over, doesn't matter if you "feel" it. BFs is a systematic "disease" . So your legs are never at normal rest. They are fatigued before you even start dancing. Our 2 mile hike is like a 4-10 mile hike.The bad news is you would think that all that working out with give us ginormous muscle. Sadly it doesn't work that way DDKeep dancing.

So I am going to suffer as long as i have bfs. There is nothing to do about it. It interferes with my daily life my legs get fatigued and sore so quickly. How long do I expect this feeling to last. I have been suffering for one year now. It improves a bit but still get the fatigued soreness after working out my leg muscles.

Nobody really knows. I have had this for almost 10 years. I know some that have gotten better to the point that they don't feel the symptoms as much. It depends on your outlook on it. Change your mindset. Everyone has something. For us it's BFS . It really is true what you read about the symptoms. The more sleep you get, good diet, consistent exercise......does help. However the biggest thing is your mind. I remember seeing an ALS specialist and he was reassuring me about everything. He said that if I stay tensed up about this that it will make everything worse. He is right . Try not to think about it as a suffering thing. It's what you have. One of the reasons I left this place is I got killed by other vets on my take on BFs. I own my BFs. As soon as I looked in the mirror and said. "Ok. I have a disease. BFs". Things got better for ME. I owned it as a disease. I wasn't giving up just excepting it. Having said all that I bet you will have periods where your legs won't feel like that. BFs waxes and wanes like that .DD