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Restless Legs - Any suggestions as seen many doctors and medications
Hi, I’m new to Mayo Connect but here goes…I have had RLS (Restless Leg) for about 40 years and it started with just occasional problems to now it’s daily at 66 yrs old. I had an unacceptable reaction to a few different meds like Gabapentin and also other meds used to also treat Parkinson’s and the last one they wanted to try had so many BAD side effects that I said no as I have reactions to many types of prescription medications including over the counter Antihistamines, Aleve etc. I do take extra B-complex, Vitamin D, Magnesium, Potassium, tried Iron etc. I often get leg cramps or ankle and foot cramps and remember my mother having them all the time. It doesn’t seem to make a difference if I exercise or not and mine will start late afternoon or evening. I toss and turn at night and I’ve actually made a hole in my sheets before because of moving my legs/feet so much. Occasionally my arms will also bother me. Heat, support stockings, warm shower or bath can help sometimes, but have noticed what works today will not work tomorrow so it’s what do I want to try tonight as again its rare if I skip a day. Just adding to my leg issues … 8 years ago I had an extreme 3 disc fusion in my lower back that was successful, but I woke up in the hospital with both legs and feet numb, which is common, but mine did not go away. About a year after surgery a neurologist said I had some nerve damage in my legs which might or might not go away, plus ankles very tender. Numbness is now mainly in lower calf (so much better) and feet plus ankle tenderness. Told I had neuropathy probably from the back surgery. I can live with sore/numb but the RLS is bothering and need to find relief. I recently moved to another state and my new doctor (after he touched my ankle and I nearly jumped off the table on him) had me go to a neurologist. With his testing he said I did not have neuropathy and he ordered spine CT which was fine, blood work including for RA etc. and all fine. Anyone, have suggestions? Again, I can live with the numbness, but the restless legs are what bother me. Not only is it uncomfortable/ache for me, but I start bouncing my legs, feet, Stand up/down, walk around and back to tapping my feet etc. so I annoy everyone.
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The Restless Leg Syndrome Foundation, http://www.rls.org , has a gold mine of information about RLS and its treatment. Mayo Clinic is considered one of a limited number of Centers of Excellence for RLS in the U.S.
For me daily oral iron and a low-dose medication (Pramipexole, 0.125 mg) is the combination that has kept my RLS well managed.
I took extra Iron for a year with no results, but my new doctor said to quit after my bloodwork. No difference after quitting either. I was given Pramipexole several years ago but had a reaction to it. Several meds for RLS have given me reactions including gabapentin, ropinirole, and pregabalin. While my legs bother me at night, the worst is early evening when I just want to relax and watch TV.
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1 ReactionYes I liked Dr. Gott's articles and i believe in one of them a reader mentioned the bar of soap under the sheet. Don't remember if the bar of soap was wrapped or unwrapped.
Just fyi I bought some magnesium glycinate and Tylenol today so will try that. Do you take your magnesium in the morning or at night? I have been taking in the morning as my RLS starts bothering me late afternoon to early evening.
Just fyi I bought some magnesium glycinate and Tylenol today so will try this to see if it helps...thanks
I've seen several references to the RLS foundation, but when I looked at it, they wanted donations and well...guess I'm cheap as have tried so many things from people and doctors over the years that not sure I want to be solicited constantly. Not saying they would but found it interesting that the first thing I see is a pop up to donate in order to join. It's like my father in-law who has Alzheimer's and the WORST by far and I mean by far was the Alzheimer's foundation for soliciting. Poor dad was giving away hundreds of dollars a month due to solicitations and he has Alzheimer's and didn't realize...sometimes he was sending checks 2 or 3 times a week. My sister in-law caught it and took away his checkbook and only donated to a few organizations that dad had donated to for years. He was not only receiving calls but mail like 3 times a week after week after week. Needless to say, I stopped donating to them after all that, but it makes me wonder on the RLS foundation when the first thing on the website was wanting money.
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1 ReactionI hope it does help you. Are you taking any pramipexole tablets (0.5MG)?
If not, ask your doctor about it.
I've tried Pramipexole and cannot take it...in fact have tried several meds for RLS and had a reaction to them all. Thats one of my issues is that I have reactions to many medications.
I am following RLS foundation guidelines which suggest to take in evening. I take 1 hour before bedtime.
Best of luck- hope it helps you!
I should’ve also mentioned that you should check with your doctor, as it can interact with some meds