Crippling Electrical Burning and Twitching

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LaurentHCH

Well-known member
i really don't know what this is but it is not bfs and begninanymore. my new electrical burning in hands, fingers, feet, toes and randomly in any place are 24/7 now along with the twitching. this is progression and i cannot stand this anymore. not sleeping for four nights due to the pain. this crap drives me into selfdestroyance. and suicide? cannot cope this anymore. the twitching ok, annoying, sometimes feary, but acceptable. not the pains...
 
Laurent,I hate to see you in this condition. I think just about everyone on this board understands the frustration you are feeling. This sucks. We're with you. Please, PLEASE take care of yourself right now. If you feel that you just can't deal with this right now, please get some help as Gary suggested. Don't let your symptoms take over like this. It will pass, or you will get some answers. Please take care. -Matt
 
Laurent,This syndrome is a waking nightmare.As gary said you really need to reach out to someone no matter what time of the night it is, how busy they are etc. please ask for help and the people close to you or the people who are trained in this will help you.You are not alone,Darr
 
I 100% agree with Gary, Matt, and Darr...I know I have experienced your symptoms at some point with this and I have to say, once my anxiety came down, so did many of my sensory issues including the pain....but your thoughts of suicide, I can relate to in a very real way...I was rite at that very point because I wasnt eating, sleeping, or participating in anything with my family or friends....You can move past this point, but you have to reach out to someone, anyone and get some help like Gary said....do not sit and dwell on these thoughts and feelings. There is always tomorrow and everyday brings with it the chance for things to change if you allow it too...We are here for you as well Laurent, please take care Robynn
 
You really need some reassurance. I have had the SAME issue as you. It's ALL caused by the worrying and anxiety. Your just aggravating a bfs flareup. Do your very best to just....relax. You have had bfs, and you have accepted it. I can tell by your recent posts your very uptight recently. You have to just realize, it is temporary, and will go soon enough. It's just a flare, just an aggravation. Were all here for you, and just go see your doc, and maybe ask for some tranqs or such to help you at this hard time if need be. The pain will ease. The electric shots will pass. You do not have some weird disease that has never shown itself in history before. You will be ok. Pm me if you wanna talk. I know your symptoms. :D)
 
Laurent,There are a lot of fellow BFSers on the chat room who are concerned about you right now and we'd love to be able to talk to you. Here is the link. We're here for you....
 
Laurent,I have followed your posts closely over the five months I have been here. They have brought me much comfort in some dark times so please let me return the favor.I saw the Director of the ALS Center the the University of California SF and she specifically told me that ALS nearly never presents with pain and burning. I too was experiencing pain and burning in my muscles that I told her about. Not quite the same as you describe, regardless her comment still stands, ALS does not present with pain first. There is no doubt you have something going on. That is obvious. What is not obvious is that it is a pathological disease. I think this is just another oddball symptom of BFS, which I am sure has been shared on this site before by somebody else. Of the people I know, I recall Chrissi I believe having pain issues like you describe. Please don't make a quick, hasty decision especially on limited sleep. I have slept like total crap these past three nights. I do not know why. I do know that this lack of sleep is sending my anxiety through the roof. I am like a newbie all over again the past three days. Trust me. Suicide is a taboo topic for many. However this topic is best left to those who are actually suffering from diagnosed mortal illnesses and not for people who are overstressed due to an unknown condition. I remember a sad story on this board that I found from five years ago. I will try and search it out. The bottom line is that a woman who had BFS could not deal with the stress and she decided to end her life. Her daughter came back to report to a person on this board that after the autopsy was performed, they found absolutely no evidence of ALS or any other neurological disorder. This is a sad example of what can happen and what I DO NOT want to see from such an important member of our community. You are cared for here and as I mentioned, thank you very much for your previous contributions and helping others on here in their own journey.Sincerely Hoping you find peace,Greg
 
Laurent,Please don't jump to any conclusions as your symptoms are still within the reasonable limits of what could be benign. So much of what you described I know I've experienced to some degree in the past. At the very least, it surely isn't ALS as I know you have feared in the recent past. I know sometimes our symptoms seem to mimic "progression" which sends us into a tizzy fearing the worst, but almost always that progression subsides just like every other hotspot and onset of wierd symptom we BFSers have the unfortunate pleasure of experiencing. If the pain is so severe that it is affecting your sleep then you MUST see a doctor and get it under control. Driving a car, using heavy machinery, and making LIFE decisions, with little to no sleep is a dangerous proposition at best. PLEASE get some help and then check back to let us know how you are doing.-John
 
Laurent, Please listen to everyonkne here. I too contemplated suicide at one point during this mess. I've never been so scared and hopeless. I wanted to share with you that a very good friend of mine has Fibromyalgia and has twitching, trouble sleeping due to severe pain, and deep burning sensations in her arms and legs just like you are describing. How do I know this? Because I was talking to her sister one day about my twitching, pain, and burning and she said "I didn't know you had Fibromyalgia too!" I didn't know what to say. She suffers with the same things I do. When I told her of my ALS fears she laughed at me...seriously...she thought I was joking. That's the difference between someone who doesn't worry and a person with severe anxiety. I went through a spell last month when my son was very ill; I had no sleep and extreme stress and my symptoms went crazy. They were horrendous Laurent. Your feelings are making you think things that just aren't true. Please talk to someone now. Don't wait.
 
thanks to everyone responding and trying to help me. however i don't fear als that much, i have been on als forums for to long to know it is not. and it is not anxiety, it was when all this started with twitching three years ago. i am not anxious at all but there is something going on which no doc can explain to me. it is not about fear but about pain and discomfort. and i cannot imagine i want to bear this much longer. i was that good after taking up tibetan medicine even better than ever in the last 15 years. i cannot explain why this did not hold longer than four weeks.
 
Laurent,please read this. What you are experiencing (sensory stuff with chronic fasciculations lasting years) is most likely not linked to any neurodegenerative disease. Despite common misinformation, MS patients rarely have any twitching. It is likely you have acute polyneuropathy that is often pretty painful and comes with a bunch of sensory issues. Go to your neuro asap, this is easy to threat. There are few diseases like that but none is fatal and all respond well to treatment.
 
thanks doc but i don't have pareses at all and the whole stuff is going on for almost four weeks now. with gbs my condition would normally include paresesand weakness. moreover as twitching began three years ago this cannot be an acute illness. i refuse to visit further western doctors. they just give you unhealable diagnosis as with my skin and rheuma-problems but no concepts of treatment and prevention. they have no clue about all this.
 
You do not have to have pareses with acute polyneuropathy as it involves both motor and sensory nerves. Could be demyelinating neuropathy (not sure for english spelling) with recent flare up. Really, even if it was CIDP, its treatable. You should get to your neuro asap and get an EMG to resolve the cause.Personally I do not think its related to your fasciculations but who knows. And if it is, its not motor neuron disease, which is the best news in this bad situation.
 
my sort of pain waxes and wanes. it is mainly like stabbing under the skin with very fine and hot needles. can pulsate or stay at a place for several seconds or minutes, then go away and come back at a compete other place. actually it reminds me on the twitching, it is the same behaviour and sometimes even accompagned by them.
 
Laurent,Just a quick comment about radon. I also live in a high radon environment. I had a radon mitigation system installed in my home a couple years ago. But in talking with the radon experts, having radon in the home only 'slightly' increases a risk of cancer. So, for example, 1/1000 people who live in a high radon environment will develop cancer because of it and you hvae to live in the home for like 20 years. So please do not dwell on the radon. -Matt
 
Hope your starting to relax there buddy. Try not to let this crap get to you. Lot of people including myself on the forum look up to members like yourself. When you lose it...we lose it. Stay at it man.
 
Laurent, there are times when all have wondered and felt totally powerless against the myriad of symptoms. I'm lucky that I have a wonderful Physio who before his Physio days was a post traumatic stress councillor for the Met police in the uk. When I was going through a bad time with BFS he explained that the body prepares itself for pain and distress. In simple terms lack of sleep, high anxiety plus being in a depressed state puts the body into a fight and flight mode. This means that the body will produce large levels of adrenaline. This sensitises nerve pathways and muscles stimulus, as we suffer more and more with BFS are nerve pathways and muscles become super sensitised to adrenalin release. It then doesn't take a lot for the muscles and nerves to react in a disproportionate way. His words to me where "ask you doctor for cognitive behavioural therapy and while you are waiting take anti depressants.You need to get sleep and take your body from a high state of alert and allow you mind to relax. Go see your doctor and get some sleepTake care
 

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