Having Bad Muscle Spasms - any input?

[Virginia]

I have started having really bad muscle spasms in thighs and hips and down upper part of left leg. This morning it was 11:15 before I got up. I had hurt so much from about 6 on. I do Yoga and deep knee bends. I also take calcium and magnesium and vitamin D3 at night. Wonder why this has started? It is really bad. The spasms are deep and unrelenting. I also seem to ache in those areas along with it. I don't know if the spasms are so bad that they cause me to ache or what is going on.

If I go to see my Neurologist he would just want to put me on Baclofen and I do not want that. It seems that everyone who goes on it has to keep upping the dosage and it seems to carry a lot of weight gain. All this would depress me.

Anyone have any ideas?

[SalpalSally]

So sorry Virginia, how's the weather? It's rainy and yucky here in SWOhio and I'm a bit spasmy myself. Stretch and rest is what is best, IMHO!!

Feel better soon..:o





..

[Cherie]

My spasticity is worse when weather is bad and also when myt B12 levels are low. That's correctable and the weather changes. Spasticity is also tremendously helped by stretching for me.

[Gary]

I have never had any weight gain with Baclofen. And once I adjusted to it I wasnt bothered by the fatigue. Unlike the Zanaflex. I do keep some Valium around if it becomes intolerable so far I have taken 1 & 1/2 pills in the last 12 months.

I agree with the others if I let it get out of control, and with the chronic MS pain I have it does happen, I don't do any type of exercise or walking around it will get to the point that I cant get out of bed on my own power.

[Virginia]

I do yoga and deep knee bends and did them yesterday and the two days before, but I have decided that I will skip today to see what happens.

It is rainy and yucky here today also, but this is different from what I have been experiencing with the weather. I definitely can tell a difference in my MS with weather changes, but I have been doing that for so long that I know what it is. This is VERY different. It is extremely deep pain. I don't know any other way to describe it. I was alright, or at least as usual, yesterday. This happened overnight.

Virginia

[stillstANNding]

Oh, Virginia, so sorry that you are hurting w this. Would heat help relax this? You'd have to do a large heating pad one hip at a time for about 20" at a time. Only on skin that has feeling.

Re: baclofen, I was recently Rx'd this and have no idea what to do w it as I do not have spasms. The stand in neuro (real specialist is on sabbatical) saw a quick involuntary movement and said it was a spasm. I researched the drug and though I read that after you reach the optimal dose for you, you do not have to keep raising the dose or take drug holidays?????

Don't put up w the pain. No upside to that.
ANN

[Virginia]

Actually, my Neuro did not suggest baclofen. I was wrong. He gave me a prescription for Neurontin over a year ago. I got it filled, but was afraid of it and also I had not felt I needed it. So he gave it for the nerve pain that I have I guess and not the muscle spasms. I do have nerve pain, and have had some pretty bad episodes, but the last couple have been in the muscles. Guess I will have to wait and see what he says. I am not due to see him until March.

Gary, maybe this is the reason you have not had any weight gain. I was thinking of the wrong medication.

[agate]

Hi Virginia,
Just this evening on the NBC national news there was a segment about how yoga can actually do harm:

Only registered and activated users can see links., Click Here To Register...

It's at the very end of the broadcast.

One yoga instructor interviewed on the program says that "the vast majority of people should give up yoga altogether."

I'm not opposed to yoga myself but when I tried a couple of yoga DVDs I noticed how I couldn't do many of the positions, and they seemed very difficult even for an average person with normal mobility.

I was having bad muscle spasms a few years ago, and my doctor sent me to physical therapy. That fixed the problem for me--but I do have to keep up with the regular exercise program I learned in PT.

[funnylegs4]

Have CP and bad hip spasms

I have spastic Cerebral Palsy and have almost the exact same problem. It gets to be a HUGE PAIN IN THE BUTT in winter because the cold makes muscles contract. I can do things in summer that are almost impossible in winter. It drives me up the freakin' wall like no tomorrow sometimes. My mom even suggested a move to Florida so it doesn't effect me so much. Anyway you are doing the exact right things to help. I take B vitamans and something called "Calmax" which has the same things you take in it. "Calmax" is super absorbable. Google it and see if you can get it. It might work better than what you are taking. Do a lot of stretching. The pain might be due to the spasms messing up your alignment. I am very aware of my alignment now and I get almost no pain anymore. Just the spasms themselves which still make my body do things that make me look stupid like falling or dropping things a lot. Looking stupid is a lot better than being in pain.

[Virginia]

Agate, I did watch the video of the news. A little disturbing although I do not do the kind of Yoga that a lot of them were doing. I do a gentle kind that is stretching and supposedly strengthening. I am pretty careful about what I do now because I know that any little mishap could end up being a disaster for me at this point. What the average person could get over, I cannot. It has started me thinking and I wouldn't mind having something else to replace it, but I don't know what it would be. My Neuro sent me to a PT one time for something else and I asked her about MS and she said they didn't do much with it there. I have wondered about getting bands and trying to use those, but again I think one needs to know what they are doing before starting. I am going to ask my Neuro again when I see him, but that is not until March. Thanks for the link to this video.

Funnylegs I will look up Calmax and see what I can find out. I considered the cold, but I had been under heavy cover (and it really was not that cold) all night so my body was not cold. My alignment is something I need to work on because I do not sit the way I should in front of the computer and in most places as far as that goes. I suppose you mean you just try to sit right and stand correctly, etc. I start out trying and then forget to continue to do it. I will keep the stretching going. I don't know how you can have spasms and not have pain. This was just really a deep pain. Thanks for the input.

Virginia

[agate]

Virginia, if there are PTs who are knowledgeable about MS, I haven't found them yet. There probably are some, though. I just wouldn't wait around until one happened along.

You're in pain and need help. When I went to my regular doctor (family practice) about pains I was having, she recommended a PT place, and I went there. This happened three different times, with three different pains, and the places she recommended were good, IMO.

Any good physical therapist will get familiar with what you can and can't do right away and work from there. There might not be much attention to the MS. If you have problems with heat and the room you're in is too hot, for instance, you might need to ask if it could be cooler because the therapist might not realize you have problems with heat.

It wasn't just the exercise that helped me, I suspect. In PT they also used "electrostim" and ultrasound.

You can have spasms without pain. I've had them often, usually in my face and arms and hands. Since there's no pain, I'm often not aware of the spasm unless I look and see how bent out of shape I am. With the face, I sometimes feel a slight tight sensation if the left side of my face is doing its drooping thing.

[Gary]

Virginia, I personally will never take Neurotin again. I felt so much better when my Dr took me off it. His opinion is most of his patients do better after taking them off it.

[Virginia]

I saw my PCP today and forgot to mention the B12. We started talking about my back and leg pain from last September, and before I knew it she was going to get me scheduled for an MRI of the back just to make sure that I do not have a herniated disk. It probably is a good thing because when I left her office I went to a Department store for a while and my back and down my leg hurt so bad I was afraid I was not going to get back to my car.

I did remember to ask about going to see a PT and trying something other than Yoga and she said she would send me, but first wanted to make sure everything is alright with my back.

This is not fun.

Thanks guys,
Virginia

[Cherie]

Virginia,
Speaking for myself, I have been there...many times. Was told I have herniated discs from L1-5 and was a candidate for surgery. Nerve pain and leg weakness all part of the package. Drugs were not giving the desired outcome both with pain relief and with the "gimpyness". However, I finally found the right combo of exercises (thanks to a really sharp PT) that I can stick with as maintenance. And when things occasionally ramp up, a good massage therapist can help me find relief and remind me of some of the moves I had let slip. If you don't already have a team of "trainers" (I like that word because the doc, PT, massage therapist and husband all know me well enough to train themselves and me to look for things I could be doing better) that know your body and what it can do, start putting them together. I hope the MRI shows nothing that cannot be tweaked.