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Restless Legs - Any suggestions as seen many doctors and medications

Posted by 3dogs @3dogs, Sep 25, 2023

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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tim1028 | @tim1028 | Oct 12, 2023

Just for informational purposes, there are not a lot of experts in Restless Leg Syndrome, even among neurologists. In my opinion, the national RLS Foundation, http://www.rls.org ,offers the best and most current information, including a comprehensive list of resources and physicians who are expert at this baffling syndrome. It is best to stay with those who are specialists, like those at Mayo Clinic, a recommended Center of Excellence for treating RLS. They also put out a newsletter for members called "Nightwalkers"

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reillyg1013 | @reillyg1013 | Oct 12, 2023
In reply to @3dogs "I've seen several references to the RLS foundation, but when I looked at it, they wanted..." + (show)
@3dogs

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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I understand your concerns, they offer a great deal of information without you joining. I opted to join , first of all because I was desperate, spent 2 months with little or no sleep after I stopped meds ,but mostly so I would receive the newsletter “Sleepwalker” through the REAL mail, plus access to all the webinars. They only send out 1 email each month.

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1 reply
3dogs | @3dogs | Oct 12, 2023
In reply to @reillyg1013 "I should’ve also mentioned that you should check with your doctor, as it can interact with..." + (show)
@reillyg1013

I should’ve also mentioned that you should check with your doctor, as it can interact with some meds

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No, they know I am taking extra magnesium already so just changing to this one but will update dr on the kind of magnesium I'm taking. In fact, that was one thing that a neurologists said was to up my B, D (in range but very low side) and magnesium.

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3dogs | @3dogs | Oct 12, 2023
In reply to @reillyg1013 "I understand your concerns, they offer a great deal of information without you joining. I opted..." + (show)
@reillyg1013

I understand your concerns, they offer a great deal of information without you joining. I opted to join , first of all because I was desperate, spent 2 months with little or no sleep after I stopped meds ,but mostly so I would receive the newsletter “Sleepwalker” through the REAL mail, plus access to all the webinars. They only send out 1 email each month.

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Thanks, and I will check it out again as I can live with 1 email a month.

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akhw | @akhw | Oct 13, 2023
In reply to @3dogs "I've seen several references to the RLS foundation, but when I looked at it, they wanted..." + (show)
@3dogs

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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I have had only 1 solicitation since I joined & that was for a membership renewal one year after I joined.

The quarterly newsletters are usually full of information. For instance, my husband got little to no relief from pramipexole, ropinerol……only augmentation. It got worse, earlier in the day. We discovered that the only thing that would work for him was oxycodone. One of the newsletters discussed augmentation, ferritin levels & oxycodone.

That’s my 2 cents. I’m sure that some organizations solicit heavily, the RLS Foundation hasn’t.

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rjjb | @rjjb | Oct 13, 2023
In reply to @3dogs "I've tried Pramipexole and cannot take it...in fact have tried several meds for RLS and had..." + (show)
@3dogs

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.

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Two Tylenols at bedtime might ease the pain of RLS.

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csherman66 | @csherman66 | Oct 14, 2023

I have an acquaintance who has a prescription from her Doctor for medicinal marijuana. She says it helps

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3dogs | @3dogs | Oct 14, 2023

Thanks, I live in a state where pot is now legal and have not tried smoking any, but I did try gummies after reading it helps some people. Not sure I noticed anything the couple times I tried them, but I need to try a different one. They have several different THC & CBD strengths and can make a difference and the guy helping me was out of the one he really thought would work better so I bought the next one he suggested. Think there was 8 or 10 in the box, and I still have 6 or 7 left so not sure I gave it a good try but might try that again. Funny it's very different than from the 70's and I didn't like the high from them...LOL I need to look it up again but think they recommend the one with higher THC over CBD so maybe will try that and see as it's getting crazy, I cannot even sit and watch TV at night or like last night I was up at 2am for hours just walking around the house. FYI I know someone who has inoperable cancer and pot helps them.

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1 reply
reillyg1013 | @reillyg1013 | Oct 15, 2023
In reply to @3dogs "Thanks, I live in a state where pot is now legal and have not tried smoking..." + (show)
@3dogs

Thanks, I live in a state where pot is now legal and have not tried smoking any, but I did try gummies after reading it helps some people. Not sure I noticed anything the couple times I tried them, but I need to try a different one. They have several different THC & CBD strengths and can make a difference and the guy helping me was out of the one he really thought would work better so I bought the next one he suggested. Think there was 8 or 10 in the box, and I still have 6 or 7 left so not sure I gave it a good try but might try that again. Funny it's very different than from the 70's and I didn't like the high from them...LOL I need to look it up again but think they recommend the one with higher THC over CBD so maybe will try that and see as it's getting crazy, I cannot even sit and watch TV at night or like last night I was up at 2am for hours just walking around the house. FYI I know someone who has inoperable cancer and pot helps them.

Jump to this post

As an RLS suffer, I tried every combination of gummies offered, high THC , low CBD and vice versa- none of them helped. Since I live in a legal state also, I moved on to vape pens, hybrids, again, no relief. I don’t want to jinx myself because I’ve spent years as a “Nightwalker”, but following advice from RLS foundation, I’ve had more sleeping nights than not. Please check out their website- lots of free information there without having to join.

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sleepstate | @sleepstate | Oct 19, 2023

I had terrible RLS for years and found out the Trazodone I was taking for years made it 100 times worse than it was without it. So I would do some research on medications and supplements you're taking to see if any might be contributing to the pain. I take magnesium which helps and I have one of those heavy duty wand massagers that really helps. I put it between my feet or calfs on just over halfway to high with heat on. If I leave it long enough it will actually numb the pain for a bit. Taking these new sleeping pills I have work well enough that I'm asleep soon enough to not bother me so much.

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