Leg Spasms Driving Me Crazy.

[Ravenwolf]

I have developed severe leg spasms. It first started when I was on hemodialysis. I could not sit in that chair for 3 hours. I am on PD now and it is much worse. I am sitting here now  at my computer flinching like mad. It now afflicts me 24/7. At first it was just a tingle. Now it is full blown pain directly in the backs of both thighs. It is at it's worse when I sit for a while. It is a painful, pulling sensation that wracks my whole body. It hits me, lets up for a short time, then hits me again. If I stand up it's gone. Same when I lie down. Some say it is restless legs syndrome but, does it get that severe? I am art my wits end as the meds I was given don't work. Is anybody else having this or similar problems? I was tempted to start drinking again, such was my frustration. That would cause another problem though.

[Willis]

Yes, it could be RLS because I've had it to the point were I couldn't sleep. It got worse right after I started PD. My nephrologist prescribed Clonazepam and that did start to help immediately, but only lessened the symptoms--they did not go away completely. Clonazepam is supposedly a controlled-drug and my doctor was nervous about prescribing a higher dosage or even giving me more than EXACTLY 30 pills per script with no refills. I guess it's one of those drugs that are considered a potential for abuse. However, as I said, it did help some and I haven't any side effects that I can tell.

Now I'm an independent type willing to try things and I don't always tell my doctor right away. Of course, I do my homework first! Another nephrologist had prescribed Mirapex (Pramipexole) for years before it was FDA approved for RLS (it was developed for treating Parkinson's) and it worked reasonably well and I'd never had any side effects from it either. I had not used it for awhile because my RLS had mostly subsided before I went on PD. However, I still had a small supply of the Pramipexole that was still well within the expiration date. I'd never had any side effects from it and from research it didn't seem that it was contraindicated when used with any of my other drugs. So I gave it a try along with the Clonazepam and that worked for me! No more RLS!

When it comes to taking drugs, I've always been a minimalist and think most doctors over-prescribe. So when I start something new and my body reacts I'm quick to find the cause. In this case the RLS got better so I experimented a bit by taking first just the Pramipexole by itself to see if that was the actual effective drug in this case. Within a few days minor RLS symptoms re-appeared. I'd already been taking the Clonazepam with just partial effect so I knew what that drug could do. But taking these drugs together seem so far to have been effective in treating my RLS. I've been on the Clonazepam/Pramipexole combination now for about 8 months with no side effects and no recurrence.

I realize everyone is different so this may not work for you or anyone else and side effects are possible from any medicine. But you can do your homework on these drugs then ask your doctor if they might be a solution to your problem.

 

[cattlekid]

I have the problem with the leg spasms as well.  Not as severe as you have indicated, but they can definitely be a problem especially if I have been sitting all day at my desk or in meetings.

What has helped me is a low dose of Requip (ropinerole).  This is another Parkinson's drug.  I take .5 mg at night before bed. 

Like Willis said, check with your dr. first. 

I do find that exercise helps for me - nothing major, just getting up for a walk down to the next floor and back seems to keep the daytime spasms at bay.

[sullidog]

Clonazepam made me sleepy but worked for RLS

[Ravenwolf]

Thank you everybody for your input. I have requip, clonazepam, and xanax around the place but haven't tried them in combination. The reason is, if you use them up too quickly, you catch hell trying to get more. So I try to keep a supply of all of them on hand, like backups.  I have never been afraid to mix meds so, I may try a "cocktail". When you are in enough distress, you quit being so meticulously careful. I have also found that doctors usually under dose you at first so, they can increase the dose if necessary. I have never waited for the doctor to tell me this. I will double the dosage on a med in a heartbeat. An R.N. told me long ago that, you can generally double doses of almost any med. That has worked for me in other cases. I believe it will work for this also. I'll post the results.