Bad muscle spasms & cramps
AnonymousJanuary 30, 2007 at 10:40 am
I am starting to have second thoughts about how good my neurologist’s job is doing on me…
He is feeling good about how well the plasmaphereses has helped on my motor nerves, (I have been having plasmaphereses for one week per month for about 10 months now), in that I can walk better, though still need the wheelchair for long distances due to fatigue. That “F” word comes on me so quick now, after a day out in the wheelchair I have to come home and sleep.
Bit, in the progression of the CIDP, it went into my autonomic system, (small
fiber atrophy), hitting my “guts” bad, and every time it hit a different ogan, I’d be put on more pills pertaining to it. (It’s hit the nerves controlling my diaphragm, heart, digestive/swallowing system, bladder, and bowels.) It has left me with shallow breathing and lung infections every two months, tachycardia now controlled by pills, bad nausea all the time with pills helping to “dump” the stomach now and anti-nausea meds used all the time, eassy choking and fluids/food coming into my windpipe so that I am told by nurses this is where lung infections will come easy to me, pills to make my bladder spasm so I can urinate, though having incontinence now, as well as bowel incontinance has started.
But here is what has me “scratching my head” and finding what he said a bit incredulous. I have had muscle spasms for about 3years now. I have been reading your forum now for about 9 months, when I found you on the net.
It seems like 95% of you all have muscle spasms of some type.
I get them all over my body, and besides feeling them, many times I can watch them as the muscles in a certain area like my arm or leg come up and spasm and twitch for about a minute or so. About two years ago, one of the doctors on my team put me on Flexeril 10mg three times daily. That seemed to help me, and the spasms calmed down.
But of recent, they have come back with a vengeance! The worst areas are my legs and my fingers. When I lie down at night, you can see the muscle in my legs come up and “knot up”, causing much pain. I have to jump out of bed and keep trying to find some movement to stretch it in the right place to stop the spasm. It wakes me up while sleeping many times, and has left me to sleep in a fetal position, to keep them away. And in my fingers, I smoke and often have the cigarette between my index and forefinger, and out of the blue those fingers will spasm and sometimes I drop the cigarette…painful and dangerous…
I get lung infections about every two months, and last month had a bad one, and was back and forth with my Primary Care doctor about it. In the middle of it, I told him about how the muscle spasms had become very bad now. I reminded him I was on the Flexeril, and asked him if either the dose could be increased or a better med could be given. He took me off the Flexeril, and gave me valium instead, (of which is not working …).
So, I called my neuro, mentioned the very bad spasms problem, mentioned about the flexeril to valium.
HIS RESPONSE WAS THAT MUSCLE SPASMS WAS NOT A SYPMTOM OF C.I.D.P., AND THAT I MUST BE HAVING AN SIDE EFFECT TO ONE OF MY MEDS.
I find this incredulous, since watching this forum for a few months, EVERYONE seems to have muscle spasms, some slight and some bad.
WHAT ARE YOUR VIEWS ABOUT THIS?
I would be very interested in some of your responses, especially from some of you getting the bad spasms. I want to copy some of the responses from you guys, and HAND IT TO MY NEURO, (looking at him cross-eyed, as if “what the hell are you talking about???).
Thanx for your responses,
AnonymousJanuary 30, 2007 at 12:25 pm
I have deep muscle twitches, asymmetric, I can get them anywhere in the body.
My nuero does EMG (nerve conduction test) to see the improvement of the twitching. He has even seen the twitch in my leg during one study (he does the studies himself).
Unfortunately I stopped reacting to medciation (IVIG) but the twitching was much much better when it was working.
If you aren’t happy with your nuero seek out a new one. I don’t have lung problems, and although I am also a smoker, maybe smoking isn’t the best idea with lung infections. Hate to be the hypocrite. 😉
AnonymousJanuary 30, 2007 at 12:49 pm
Hi Ken, sorry to hear your still fighting the muscle spazms. Why not use flexeril and valium? I do and it helps quite a bit, I take them together at night and get through the night with limited break through pain. Why are you smoking if you have lung problems? Stop the smoking and give yourself some breathing room. There are also natural ways to relax the muscles and reduce the spazms, I’ll look them up and post them for you. Don’t be to hard on your dr, they are still practicing at their trade, they are learning new things about gbs/cidp all the time. Muscle twitching, spazms, cramps are normal with gbs/cidp. Some drs need to be schooled more in this area, and in the area of residuals. Take care of yourself, Ken.
AnonymousJanuary 30, 2007 at 11:56 pm
I have muscle spasms in my legs primarily, just like you I can watch the muscles moving. But I am so used to it, that I can usually ignore them. I am not going to lecture you about smoking (I actually took it up two years ago to help me with the unbearable pain in my feet, which it did.) Of course, I had been a smoker years ago before I got CIDP.
When I started up again, it was one of the few “normal things” I could do at that time. I couldn’t walk, couldn’t read (cataracts), had a hard time watching TV, & smoking was something I could actually do. I just wrote this so that you don’t get more smoking lectures, life with this disease is rough enough, maybe we need to seek pleasure in any small way that we can? But yes, muscle spasms are definitely from the CIDP!
AnonymousJanuary 31, 2007 at 9:54 am
I use a calcium/magnesium/zinc supplement. You need the combination as each helps the other with uptake and absorbtion. Also, have you tried “Kelp” tablets? Some people get good relief with them. When trying something new to your body, remember that it takes time for it to work. I try to apply the 30-day rule ~ try it for 30 days (faithfully!) without changing anything else that you do. Chances are you would know by then if it is helping (maybe sooner). Best wishes in finding what works for you 🙂
AnonymousJanuary 31, 2007 at 10:21 am
Since you live in California, have you considered medical marijuana? Here is a quote from an article from THE LANCET Neurology Vol 2 May 2003.
“In an experimental model of MS, there is
evidence of tonic control of spasticity and tremor by
I usually try to find scientific evidence of usefulness of alternative methods – pubmed has others more recent that may provide additional information.
AnonymousJanuary 31, 2007 at 3:45 pm
Thanks for the reply.
I have medical marijuana for the taking. I use it when the nausea comes on bad, and they are trying to get me to gain weight as they may be putting in a feeding tube.
It comes in pill form, (back in my hippy days, it was called THC,…LOL), and now it’s called Marinol. And my doctor well supplied me with it.
BUT I DIDN’T EVEN THINK ABOUT USING IT FOR MUSCLE SPASMS.
During the day, I don’t like to use it unless absolutely necessary, because it DEFINITELY gives you a buzz, and I want to keep a clear mind. So, I really don’t use it that often unless really sick.
BUT, HEY, if I use it at night when the spasms are bad, “I guess I’ll have pleasant dreams!!! (LOL)
Thanks for that reply, and I’ll let you know how it works.
AnonymousJanuary 31, 2007 at 9:59 pm
Muscle spasms, cramps, fasciculations were the most predominant sympoms for me. I’ve been taking quinine in pill form and in Tonic water with gin. LOL
Still have some tough nights where the only relef is to get up, wake up the nerves and try to find the right way to stretch.
The bad part is that stretching one way causes a spasm in another muscle.
Oh well, we all have our ways to endure. Good luck.
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