Does anyone else have muscle twitching in recovery?
AnonymousMay 18, 2011 at 6:16 pm
Ever since I started to recover, about six weeks ago, I’ve been getting a lot of random muscle twitching all over. Sometimes my left eye will twitch for awhile, then my leg muscle will twitch, then it will be my arm, then it will be my abdomen. Just the weirdest thing. I never had that before I got GBS so I’m guessing it must be related to the disease?
I mean I’ve had nervous tics before, when I’ve been overly tired, usually around my eye. It would annoy me for a day or two then go away when I got enough rest. And it’s only happened now and again, not a regular thing.
This twitching is a little annoying, gets worse at night and then it’s a bit hard to fall asleep but I know it could have been so much worse for me so I remind myself to be grateful I’m only having twitches now instead of being in a wheelchair.
I just wondered if anyone had that too. My doctor didn’t seem to know if it was normal with GBS or not but she’s a new neurologist, still an intern actually so I’m guessing I might be the first GBS’er she’s treated.
May 18, 2011 at 6:27 pm
welcome to the club, drag that it is
I took twitching to be a sign that nerves are starting to fire off again. I dunno if this is scientific but it felt positive.
May 19, 2011 at 7:29 am
I had twitching and then major leg jerking. While sitting in a wheel chair I remember my legs flying upward like a jack in the box. Welcome to club twitch. We’re here for you. Be well.
AnonymousMay 19, 2011 at 10:03 am
I had muscle twitching for a LONG time….still do and I am a year and a half post. It was so bad, I could see the muscles jumping sometimes. I have had the jerking that the other member refers to as well, head jerks and hand ones. The twitching is mainly in my arms and legs, but occasionally, my abdomen and back. It is very weird, but painless. After a while, it will become your “new normal.” 😉
AnonymousMay 19, 2011 at 5:04 pm
Specifically, a fasciculation or “[I]muscle twitch[/I]”, is a small, (and, in my case repeating) local, involuntary muscle contraction followed by relaxation visible under the skin probably caused by the spontaneous discharge of a bundle of skeletal muscle fibers (muscle fascicle) as they degenerate, regenerate or whatever it is they are doing.
Fasciculations have a variety of causes, but the one that concerns us is due to disease of the motor neurons.
A fasciculation usually will not cause an entire limb or digit (finger or toe) to move.
Generally speaking, when I feel better (CIDP) I do not fasciculate!
AnonymousMay 20, 2011 at 1:00 am
[QUOTE=northernguitarguy]welcome to the club, drag that it is
I took twitching to be a sign that nerves are starting to fire off again. I dunno if this is scientific but it felt positive.[/QUOTE]
I also have muscle twitches. I hope its just part of the recover process. However I have a felling like one member stated its the “new normal”
They have made my legs and arms jerk, move without my doing, hands as well. So far not in my face.
My wish would be to have a Dr tell me this is the best it will get. At lest then I can further adjust. My depression and anxity is at the top. Maybe get a Dr to at least let me know what is going on.
October 3, 2008 dx with GBS the day my life changed — for the better or worse. From the first drip of IVIG it seemed I was algeric to it. Aseptic meningetus. Wasnt realzed until after the 3rd dose. Then IVIG stopped.
Honesty from the medical world would be great.
Having us speak to others who have this will be a comfort to the familys nd Dx’d.
AnonymousMay 20, 2011 at 5:04 pm
Thank you all so much for your wonderful replies. I appreciate them so much and the reassurance that this is just a normal part of GBS recovery. I guess what I was worried about when I asked my doctor is that the GBS might be coming back. 😮 I know I shouldn’t be worried about that because it hardly ever happens but like anyone, I still worry.
Wishing everyone good health and a more complete recovery with each day.
May 24, 2011 at 8:26 am
[QUOTE=Tom Fetterman]I have always thought of the “twitches” as being a positive thing. In an abstract sort of way, I envision an electrical battle being fought underneath my skin…..kind of like good vs. evil …..Luke Skywalker vs. Darth Vader…and we know who wins!!:)[/QUOTE]
I’m glad I’m not the only Star Wars geek on the forum:D
may the ‘force’ be with you
AnonymousMay 27, 2011 at 2:56 pm
I just wanted to comment that I started taking alpha lipoic acid regularly, one pill a day, don’t know the dosage, and I have noticed a decrease in the twitching. I have also added in some other supplements and changed my diet (gluten-free and dairy free) so it could be coincidence or related to the other changes. I would recommend trying the ALA to see if this helps with the twitches.
May 27, 2011 at 9:29 pm
Lots of good comments here.
For the 1st 2 months I had fasciculations or twitches that gradually went away. First it was in the calves, then the forearms. In the begining it was pretty bad as if something was crawling under my skin. 7 months into GBS I am in the rebuilding stage and they seemed to have stopped. Very normal from people I have talked to.
AnonymousMay 31, 2011 at 11:40 am
I was diagnosed with GBS in July 1990 (almost 21 years ago) and I still have
twiching in my calf muscles. At first this alarmed me but now I have become used to it. I was even referred to a neurologist in 2006 and had an EMG done and could find nothing wrong. I am very active, excercise and walk daily so I assume that this is just part of life post GBS. Please let me know if anyone else still has twitching 20 years post GBS.
AnonymousMay 31, 2011 at 12:13 pm
[QUOTE=JackP]I was diagnosed with GBS in July 1990 (almost 21 years ago) and I still have
twiching in my calf muscles. At first this alarmed me but now I have become used to it. I was even referred to a neurologist in 2006 and had an EMG done and could find nothing wrong. I am very active, excercise and walk daily so I assume that this is just part of life post GBS. Please let me know if anyone else still has twitching 20 years post GBS.[/QUOTE]
I’ll be 20 years post GBS in September and yes, I still twitch in a few different areas. It isn’t severe twitching nor is it something I notice on a daily basis. However, I may have become accustomed to it and rarely notice when it happens.
Hope that helped!!
AnonymousJune 1, 2011 at 11:25 pm
common to the onset and diagnosis of GBS and CIDP.
It is also a side effect of medications such as anti-seizure and many other meds. Neurontin is a good example. Why? Because such meds deplete calcium at a higher rate than for normal people not on these meds.
The loss of calcium as an issue can be found in the ‘full prescribing information’ of many pain meds we take.
Taking supplemental ‘calcium citrate’ plus magnesium and vitamin D together can help this problem, but it’s not an overnite cure. Takes about 3-6 weeks or so.
I too ‘twitched’ often at first. One or the other of my legs would just ‘jump up’ 6-8″s until I found this combo, which is one that works in concert to help a person asorb rather than just take in these key supplements. Tho blood tests measure what’s in your blood? Swimming around? The only way to really know that there is absorbtion is via biopsies. Don’t know about you? But, I’ll pass that prospect for now.
Another point? If your doctors have done any ‘full metabolic tests’ on you anytime recently? Ask for a copy. Sometimes the key borderline lacking issues aren’t considered critical by the labs..and aren’t asterisked [*]. Sometimes docs only look at those ‘*’s. By getting access to test results? You can address a lot of the marginal aspects and correct them to your benefit. Good luck.
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