Fasciculations and Pain Issues

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LaurentHCH

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i don't know if this crap is related but i not only have more fascics recently but experience a lot of pain in the feet, the hands, the back, elbows, knee. some are present all the time, others seem to come suddenly for several minutes. i am not very amused about that;-(
 
There are some theories that BFS is from a benign auto-immune reaction, and if this is found to be true, it would explain why alot of us get joint pain with this. My wrists, back, ankles, knees, and fingers, the all rotate with the pain. It sux but it not deadly and its not Rheumatoid Arthritis, its just what BFS does :mad:
 
I get pain off and on in a lot of areas. some may be related to BFS but I'm sure much of it is related to getting old. I'm not amused by any of it.
 
A couple of things about pain and BFS.Theory 1Increased twitching cause’s muscles to become tighter right? which causes more resistance during movement which will cause you to exert more power to make yourself move. The more energy you need to move will cause your muscles to become fatigue faster and will also cause micro tears in your muscle. Plus the more resistance you have wears you out faster. ALL this causes increased lactic acid in your muscles and blood which causes muscle pain. (whew, breath) I believe we suffer more from a condition called "post exertional malaise" then exercise intolerance. Most of us CAN exercise, we just don’t want to because the pain. Think of it like someone training for a marathon, they try their best to avoid lactic acid build up. That is what limits their muscles from functioning at a sustained, peak performance.One of the many sucky parts about BFS is you would think that all this increased twitching would give us ginormous muscles like in our calves!! But nooooo the natural neuropathy that takes place, which means limiting nerve juice, keeps our muscles from bulking up that way. Which can also explains why als does not cause pain in muscles. Thats why I believe that keeping your muscles loose and drinking water and Gatorade is much more important than just about anything you do for BFS.Where do you guys live? Is it cold? Cold weather makes my muscles, joints much more sore and painful. BFS causes muscle pain but that always reassured me that I did not have als. Pain is not a symptom of als. Plus lack of movement, anxiety, and the neuropathy that BFS causes makes for a strong guarantee you will have pain.If you add all that up, muscle pain is a very likely symptom of BFS.I remember getting into a lengthy discussion about BFS being auto immune related a couple of years ago on this forum. (you can look it up on my post history thingy as my most lengthy posts) and to this day I am still not sure what I think. If it were a TRUE auto immune disease we would be much much worse by now OR if we were not worse but kinda in auto limbo, prednisone would make us feel better. (it didn't for me and others) I agree with JTJ, it’s mostly age, which sucks by itself. BFS makes your body feel about 20 years older, which makes me about 60 right now. Fantastic. :mad: Glad I don't feel 60 everywhere! :oops: Old age is 100% fatal. BFS is not. Keep truckinHope that helped.BTW spellcheck, no matter how many times you tell me to capitalize als I refuse to give that s.o.b that distinction! (insert middle finger smily)DD
 
at least in my case it is not a muscle pain....it is nerve related. some are even very close to the skin.....as i used to do sports daily and in high intesity i know how it feels like when muscles hurt....these pains are completly different......
 
ChauBao, I experience this also. It feels like nerve pain. I told my neurolgist about this and he wasn't concerned (big surprise). He gave me Gabepentin to try. It seems to help. The pain waxes and wanes. No clue what it is but I bet it's related to BFS.
 
I get the nerve pain occasionally - I think it is due to having tense muscle which irritate the nerves...sort of like pain from a tight piriformis but in other parts of the body. It is an unpleasant electric shock feeling. If I can get the muscles to relax in the area (and the area inward toward the body's center of the pain) the pain goes away - sometimes ROM exercises help (sometimes not) but it's worth a try. This isn't too much different then what DD was saying in that the tension in the muscles over time causes problems, a disequilibrium in your body structure can also throw things out of whack.
 
I get those electric zaps that hit the outer skin,i get muscle pain from the deeper twitches and i get ligament pain like i have just twisted my ankle.The last one is very strange as it feels i cant walk on it without being in a lot of pain but if i wait a minute or two i can then walk off as if nothing has happened.
 
@steve: your case is very interesting to me as we both have similar symptoms and both had a cancer exam before all this started. anxiety was our shared trigger...maybe we just overstrained the nervours system. the pains i hate most are the sharp ones directly following fast and fine twitches as i feel them today in both legs.
 
Pinprick, your saying it's peripheral neuropathy? My neurologist never mentioned that to me. Mine comes and goes. I went a month with no pains at all then all of a sudden it came back then left again. Would this happen in PN? Just curious as I see you have Small Fibre Neuropathy.
 
@PrickLedPin: thank you very much for your help on this! however i did not have any vaccins for over 10 years. and i won't do any anymore. my system was overloaded by the fear during a cancer exam, i am quite sure. and it still depends on factors like mood, anxiety, tiredness, coffeine etc. i remember having had those pains much more after all this started two years ago. emg and ncv were both fine. it was gone for almost a quarter of a year and i was very optimistic that i was cured as i wrote here in another thread. did notice only a few twitches and almost no pain until i came here and read the uk study in the experience-sector, letting freak me out about als again. from then on the whole stuff is back again. one thing i need to mention: as as a result of sports and vegetarism i had a lack of b-vitamines why i supplemented b12 and b9 (folic acid) in the last months: my folid acid goes through the roof now. it seems i have overacted, the plasma level is 10 fold the max limit. there is no report saying folic acid can be toxic but it is known to cause hyperexibility. maybe an explanation for my flare up!?
 
It may be good to mention here that the usage of these terms (PN, PNHE, etc) and their subsets can vary somewhat depending on if you are in the US, Europe, etc. All the general definitions are the same but what they are attributed to and their classification may vary. It is best to get your neuro to clarify things for you in this case.Pinprick - my symptoms took off after I had a bad virus (my doc said it was prob H1N1 but I literally couldn't get out of bed to go to her office); no vaccination. There is no reason for nerves not to eventually heal though if the virus is dispelled & they are no longer under assault. This is where body patterns can kick in and cause some persistence as nerves heal much more slowly than tissue, etc..
 
A vaccine is made of the outer layer (or parts of the outer layer) of the virus with other "stuffs" and NO ADN virus. In fact they are creating "fake" virus.Either it is a vaccine or a virus, both may then "induce" all those problem we have since there will be an immune response (antibodies will be created).Antibodies are like "bombs" in the blood that when they encounter the real or "fake" virus will kill them (obviously the "fake" virus will not be killed, it is "fake").When the "war" is over they are still active in the blood ready to kill the next same virus.The problem encountered in the auto-immunity is that those "bombs" are making a mistake and try to destroy our own cells because there is some similarities between the virus (or fake virus) membrane and those cells membranes even when the virus is not anymore there.In PN, the target is the nerve cells.In Ulcerative Colitis it is the bowel cells (the husband of someone i know got that).In Psoriasis it is the skin cells (a friend got that)... etcThe "destruction" degree can be very high like in Guillain Barre Syndrome that falls in the PN definition (GBS kills Peripheral nerves).That's why i suspect we are at a low degree on the scale.The electrical circuit is functioning but is somewhat damaged and short-circuits, misfires are happening.Since that "damaged" circuit is between the brain and the muscle for example, what happens in the brain will "influence" what will effectively happens at the other end of the wire. If you are "stressed" (real stress, caffeine, ... etc) you transmit that "excitation" through a "malfunctioning" wiring and hence more twitching for example.I use Lyrica to dampen all that while it is really not a miracle (+ no coffee, tea).Baclofen is an other option but is addictive (calm down nerve cells).... there is other pills but all call down the "brain" usually (one end of the wiring).... or time (years may dampen the immune response).-----You can see that like a house is built. Some "stupid" guy is removing bricks on the walls. So, a brick is removed. At an other time an other brick is removed... an so on. At some time, one part of house will fall down (the first twitch). At an other time (may be months) an other part (an other twitch somewhere). Then there is so many bricks removed that a big part of the house fall down (the "flare up" of twitch). At the same time, the owner is hiring a company to repair. While it is repairing a wall fall down. Immediately workers moves to repair this wall but the "stupid" guy is making the "bad" job in an other part of the house. So it is continuous repair/destruction (demyelisation/remyelisation seen with some peoples here after more than one EMG/NCV). Some destruction may be not repairable... (like the trembling i have on left side mainly).
 
Pinprick - Yes this would be true (good explanation BTW) if you had an immune system disorder. If you have been tested and do not have an immunity problem then this would not apply (just pointing this out to those who pop in and only read the last few posts as they may feel yours is a global response). I know several people here do have varying degrees of immunity related issues so it is certainly pertinent for them. However most of us should heal over time given good conditions just as we would from any other injury - perhaps not back the way we were in all cases but this is the same for any injury to the body.
 
I have been gathering lots of information about ALS patients in my country (Japan).I have read atleast 20 cases, their stories and how their symptoms presented from actual patients.Many have different ways of initial symptoms but when they had muscle pain, they were all similar.Ill post on here some of their stories. But its their story, Im just translating it.Case 1: He used to ski alot, but one winter, after a day of skiing, both of his legs hurt so much he couldnt walk down the stairs. He couldnt ski the next day. After that, he couldnt tip toe, he couldnt run at full speed, and these symptos NEVER got better. Later he was diagnosed. (no mentioning of twitches)Case 2: She had shoulder pain for 2 weeks that wouldnt go away, went to her chiropractor and realized that her right hand was bony with no muscle. Later diagnosed. (no mentioning of twitches)Case 3: He started with fasciculations (one of the rare cases). His fasciculation was LOCALIZED at first WITHOUT a hot spot in his right shoulder and arm, but now AFTER A FEW YEARS, its widespread all over his body. Other symptoms followed after a couple of months. His left hand became not weak, but strengthless (if thats even a word). No strength could be applied to that hand. He then asked his friend to massage it for him, but when he did, it hurt so bad he screamed as he pulled his hands away. Thats how bad it hurt. The shower head felt 2 times heavier. He had Babinsky and hyperreflexia. Later diagnosed.Case 4:One summer, he went hiking with his son, but soon after got pain in his legs that woudnt go away for 6 MONTHS. The next year, he couldnt run up hills or stairs when the year before he was doing that daily as his job. (no mentioning of twitches)Others cases Ive read somewhere: the pain is so bad you cant touch it. They cant live without pain killers.Ive looked into many others but these are the ones that had muscle pain.From these experiences, I would say that muscle pain involving ALS is not ordinary pain. Its so painful one cant even touch it.Also, out of all patients Ive read, almost all had twitches after weakness (if they mentioned about twitches at all, since most didnt).And with definite confidence, I could say this. I mean this applied to EVERY patient: almost all patients developed definite symptoms (not the twitches or the perceived weakness or the tingling feeling, I mean real symptoms like not being able to walk for a mile or hold a cup of coffee, those sort of symptoms) within 6 months and ALL, I mean EVERY patient had definite symptoms within a year.Im only 2 months since Ive started having twitches so Im still freaking out. But those of you who have had it for more than 6 months, theres pretty much no chance it could develop into ALS.
 
I spoke with a patient with @@@ and he was well advanced.The only pain he said he had was in his stomach which stopped after having a peg fitted.His first symptom was twitching and then Major Fatigue.@@@ starts in various ways in different people an there is no such thing as normal.
 

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