I really need some advice. I just don't know how to treat what is going on with me.
I had my first major attack that led to my dx in Dec 08 with an official dx Feb 09. It was localized to my right arm and including spasms, spasticity, parasthesia, severe itching and beginning atrophy. It reversed to just medium level parasthesia.
I have had other smaller episodes over the couple of months since even after starting DMD's in march. I developed some pain and spasticity in my hip that came and went. Ended up doing a solumedrol treatment in May that helped.
The hip spasticity just sort of was there and got aggrivated the more I walked.
Ok so on to my problem. I take 4mg of Tizanidine HCL (generic for zanaflex) 3 times a day for the spasticity. That usually keeps my in check, but I had a traumatic episode in the family last month and the hospital required ALOT of walking. I ended up buying a cane. After we got home I finally realized I was having a relapse. I am totally paranoid about my legs going as bad off as my arm did back in Dec. My dr started a Solumedrol Treatment. One side effect of that med for me is that every muscle loosens up like jelly (good and bad but a nice change) and now the pain in my hips and legs from being spastic for so long is just un bearable.
I notice that I am ok when I wake up but the more I move the worse it gets. Yesterday I had to sit in a Dr waiting room for 2 and a half hours with my Brother in Law who had the accident. Sitting there was excruciating. They were doing construction next door and the whole floor was vibrating and I am sure some of you can imaging the agony with that.
I tried taking 250 mg of vicodin yeaterday (I can't stomach any more than that) and I tried 1/2 mg of xanax. There was no change except the severe need for a nap.
What do you out there suggest or do when you are having an attack and your legs are screaming at you to stop moving.
I am afraid to just lay around through this and then not be able to get up later.
Is it better to keep moving and fight through the pain?
I have a PT coming to my house next week so hopefully I will learn more then, but for now, any suggestions for relief are very welcome.
Sorry you're going through such H*ll! I can relate to the spasms in the legs, deep hip flexors, etc. Really hurts. On a bike ride the other day, both feet decided to spasm, and I couldn't unclip fast enough and wound up arse-up in a ditch!! Took some 20 minutes to subside. The longest hip spasm I've had is 45 minutes, and that was tough - I can't even imagine 2+ hrs of it!!
I take 5 mg of Valium at bedtime, and that helps ease the spasms, but certainly doesn't get rid of them completely. At least I can get back to sleep after they subside!
On the river last week both legs from the hip to the toes spasmed for about 20 minutes. Luckily the water was flat through that section, and when I couldn't stand it any more, I asked a canoe buddy for a sip of whiskey from his flask. Two slugs later,they started to subside (coincidence?).
There are several things that make my leg spasticity worse: stress, too hot, too cold, being sick, overdoing it, and being inactive. For me if I am too inactive, I really have can have some problems with pain. Sitting in one place too long is a killer, and if throw a blanket over my legs, the extra heat and weight even makes things worse. However, walking around too much or overdoing any kind of physical chore is also a killer.
What works for you or what causes the spasticity and spasms will be unique to you. Make a mental note next time of what works and what doesn't and be alert to what may trigger them (if it was me, I'd be laughing to myself while I read this post and would be saying it was the MS causing this dumb dumb--who is this person anyway? LOL).
Seriously, sometimes a lukewarm bath with candles with soothing music really helps. With MS, you have to develop some "me" time. Don't let yourself think that it's being selfish. Stress and a hectic lifestyle can really make things miserable for a person with MS. The PT is a really positive thing and can offer other suggestions for you. If the pain gets unbearable, call your neuro's office.
I experience spasticity in both my legs now, knee cramps and the left hip can get really painful, there isn't much that i can do to change it. I stretch, flex and do low impact exercises to try to get them strong, i'm pretty great in the mornings but i cant do anything that requires me to use them, if i do they are jerky spastic and out of control by night. I work with the low grade spasticity but I dont let them get to the out of control stage because i pay for it for days afterwards. THe key i've found is to recognise your limitations, being able to read your body and to stop regardless of what you think needs doing because it's not going to do you much good if you push yourself beyond your limits and then you cant do anything at all for 2 or 3 days, so know your limits.
Ok, dont pass out in disbelief but i dont use any medications, zip, nadda, nothing. There is a theory behind my madness though, theory being pathetically simple that the pain is worse when the meds have worn off and you end up taking more and more just to keep on top of it. My way the pain is always there to let me know NOT to do too much, masking the pain makes me over do it which in turn makes the pain worse tomorrow. I do draw the line when my tollerence is really tested and at this moment i would gladly cut off my right arm with each painful pulse, all i did was brush my hair and that was enough to let me know i pushed my body before it was ready, at the moment my theory is being really tested . I'm not a nutter who loves pain, its just for me when the pain meds where off, the pain seems 1000 times worse and i just dont handle it as well.
For my hip i've had to use heat packs, yes i know heat is the enemy but it doesnt seem to cause a problem if its just one spot, a hot bath would have me pass out with fatigue but the heat pack gives me a little comfort. I've not found anything that works when my knees cramp or spasm, the pain is emense, a shock and takes my breath away, i hate it the most when it wakes me from a good sleep.
I dont think i've helped you, advice i'm trying to give is that you need to give your body a brake, rest more when your legs are telling you to stop, pushing it doesn't work believe me i've tried. Listen to your body and stop when it tells you too.
Since I was dx in 2000 (dx took two years/four drs. and my neuro sometimes says he's still not 100
Since I was dx in 2000, the only symptom I've had is optic neuritis, and not as bad as
some--but now I've identified what I think are spasms which I originally thought were due to a bad mattress. Three mattresses later and it's finally dawned on me that a bad mattress doesn't make you scream in pain seven hours into the day when you reach for a glass in the kitchen cupboard. Sometimes I can barely get out of bed to pee at night. I've never had anything hurt so badly. I won't take pain meds, so I take Alka-Seltzer w/2 aspirin several times a day and that helps. I also box, which I refuse to give up and I feel so much better afterwards. And I am constantly stretching whenever I'm sitting, I do yoga but I am so scared....is this crippling? How do the relaxants work? BTW, the only shoes that relieve knee/hip pain, improve posture are a good pair of Swedish-made clogs,
which I started wearing before this spasm-thing because of knee problems, but they seem to make walking easier--like you all say, when a spasm happens, you never know what can happen and maybe the clogs have kept spasms from starting while walking.
Thank you so much for being here. I've been avoiding learning anything about my disease because I thought it was optic neuritis and that was it, and a relapse would occur to my eyes if I actually had one (which I didn't believe I would). I never thought that I could develop another symptom. Is this what happens? New symptoms endlessly?
The vicodin and xanax won't touch your spasticity. We have an excellent HP write-up from a pain doc that explains why.
I'm not sure, but you may need to switch spasticity meds. Baclofen takes longer to get into your system at a full dose, but if it helps it will be totally worth it.
For me, when I'm less mobile, I'm worse strength wise. I can't stand alot either. If I keep moving at a bearable pace I'm better. Maybe you can do it in small spurts because the length of time you are getting in seems to be wiping you out.
Can you call your Dr. to ask him to consider a switch? He may just do it over the phone for you and save you the trip....
Hi Shell, I am so sorry you are dealing with so much all at the same time, it really *****..
Sweetie, Please don't mix alcohol with you medications, it's not ever a good idea...
Second, it's ok to listen to what your body is asking you for. When we are stressed and the MS is having it's way with us, than a nap can be a friend. Are you having "Bone Pain"? That is most like;y being caused by the Spasticity and there are drugs to address it. It is difficult to know which one will help the most.
I know I am not being very helpful, but wanted you to know I am keeping you in my prayers.. Be kind to yourself.. that isn't being selfish and you deserve it..
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