I have had MS for 22 years. If I have done physical activity it can be difficult to sit afterwards.. My legs tighten while sitting/ can feel a current go down my leg then my leg pops up/ if I try stretching the muscles fight it and my legs go crazy- kind of a pain and dancing legs. I also have to be choosy on chairs. If they hit the back of my leg wrong, it sets them off- moving- tightening- can't sit. Car rides are okay for the first hour then it all starts.. Whatever position I land in when I get in the car is where I stay. If I move my legs at all they start tightening and moving. I am sensitive to touch and a hand on the top of my leg can start it all. Likewise pants cannot be too tight. I am wondering what really is the cause, the MS or RLS and what would be the best treatment to endure a long car ride? Help
It's very important to educate yourself. Contact your local Multiple Sclerosis Chapter (you can google it) and they will help you with any questions that you have, they also have a lot of booklets that are free. Has your doctor discussed MS treatment with you? The sooner you start the better off you may be. The MS treatments are not a cure but can slow down the progression of the disease. Also look for support groups in your area. The ones that I've been to are very positive and helpful. Good luck and you're not alone
Try experimenting with a higher dose. If you are taking 10 mg 3 times a day, for instance, try adding a half or whole pill to one or more of the dosing times. You might also take note of when the spasticity seems to worsen. If it's during the afternoon, for example, you might want to increase only the afternoon dosage.
Increasing the dose in small increments of 5 mg or 10 mg is a safe way to go. You'll know you took more than you needed when your legs feel too weak to stand or walk for very long.
And remember that baclofen doesn't stay in the body for very long, up to six hours. So if you are taking it twice a day, morning and night, you could try adding a dose in the middle of the day.
I'm pulling up right behind you with having MS for 16 years. It has constantly been an ongoing struggle as you well know! It seems that every few years something new occurs and right now it's pain that I can't even comprehend!!! Sitting at times is difficult for me as well, I have to prop my right leg up so the pain I feel running down my leg isn't as severe. I too am planning a car ride and the only thing I can suggest is placing the seat (I'm thinking you'll be in the front passenger seat) in a reclining position. It seems to help me. Exercise and stretching is supposed to be good right? Not for me it isn't! If I exercise it feels good while I'm doing it but the day after, like you said it's a go "crazy-kind" of pain! When I mentioned the pain to my neurologist he thought it may be a slipped disc and suggested an MRI. If it is a slipped disc, it sounds to me like surgery is needed to correct it. I think not!!! I think the pain involved with MS as with every other symptom is a mystery. I'm afraid you and I will just have to endure and make the best of it.
Wow, does this sound familiar! I think we have similar MS tenures--I was diagnosed in 1992. My "dancing legs" have been an issue for years. It started at night, when I would lay down and try to sleep. The legs would be inactive for the first time all day, and after a while one or the other (never both at the same time) would have to move every 30 seconds or so. And, as you described, if I didn't move the leg it would move itself by popping up. Then the tension would slowly build, the pressure, and it'd go again. In time it started to happen in the passenger seat of the car, sitting on the couch, or other times when my legs weren't supporting me. It severely impacted my sleep, and I would spend many nights "walking the halls." And it's still a problem. Coming up on 2 AM as I type this, after dancing myself out of bed a couple hours ago.
Over the years I've tried lots of things. Quinine pills, varying degrees of sleeping pills (from Benadryl to Rx), walking up and down the stairs, stretching. I've had lots of opportunity to study the phenomena as I lay there awake kicking the covers, in hopes that if I described it properly and accurately someone would have an answer. So far the best solution has always been getting to sleep before the legs started to go!
RLS or spasticity? That's the question. I've had lots of people tell me it's one or the other many times. Or done research and convinced myself back and forth. Maybe it's neither, just a weird MS leg-nerve thing. My Neuro put me on 60, then 80 mg of Baclofen--just around bedtime--years ago, and recently added another 20 mg earlier in the evening. Did this work? I'm not sure. Does the Baclofen in general help or not? I don't know. I've never NOT taken it to find out if there's a difference. But, again, it is 2 AM, and I'm sitting here rubbing one ankle with the other heel trying to get it to quiet down.
Unfortunately, as with many things with MS, no one has ever been able to categorically tell me it's THIS or THAT. Or hand me any magical solution. But when I see someone describing this so well, I have to respond. If nothing else than to say you're not alone in trying to figure this all out. Or, like ilovewritingcalligraphy, to say it's not a slipped disk!
Like many of those above, I have had MS for over 20 years. my legs dance and tingle with pressure when ever I sit still for awhile. My doctor suggested compression socks, but regular socks make my feet hot and that makes things worse. I take 20 mg of baclofen and 4 mg of Zanaflex four times a day. It does help some and I can tell when it's time for more, I take both pills before bed. I also read on The People's Pharmacy about placing a bar of soap under the sheet to calm restless leg. It sounds crazy and has no scientific proof as to why it helps some people, but it works for me, I use a small hotel bar. I also read where some people carry a bar of soap in their pocket.
From the post I am reading I would guess it is indeed the MS and not RLS! The last longer car trip was much better. I called my family doctor and asked for something to help short term for a car ride and if I can't even sit to watch tv in the evening. He prescribed a low dose of diazepam 2 mg ( take 1 or 2 ) which allowed me to ride in comfort the whole trip. It lasts for 4-6 hours and you can't drive while taking it. It was nice not counting the seconds until we would arrive at our final destination!!!! I've been working through the leg stuff with exercise, stretching and a heating pad with moist heat for years.. I would rather stay off daily meds for it as long as I can endure it. I know the muscle relaxers can make you sleepy and I deal with enough fatigue all on my own! I'll just keep plugging along and counting my blessings daily...
Yes, indeed we do sound very similar. Hearing your response with the popping leg ( where you feel the current run down your leg then up it goes... ) and the other issues I guess I am inclined to say it is probably more the MS than RLS. I have managed to get by with the exercise, stretching and a moist heating pad - most of the time. There are times where none of the above bring any relief and I go a little crazy. The last long car ride My family dr. gave me a low dose of diazepam ( 2mg ) - take 1 or 2 - and it relaxed my legs enough to make it through the whole trip. I am not on a daily muscle relaxant and would like to avoid that as long as possible. I have enough fatigue of my own!!!!!! The heating pad before bed ( legs propped on pillows ) seems to help relax my legs enough for sleep - most nights... I was in a place a few years ago after a bad attack where the nerve pain down the outside of my leg kept me from sleeping. Thank goodness that went away. ( Neurontin until the nerve pain healed- but that stuff makes you feel like a real idiot in your thought processes ) I guess I will continue to count my blessing that this is what I endure and I am still able to walk and function in life. I agree with the slipped disc idea for ilovewritingcalligraphy - it is not!!!!
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