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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sleepstate | @sleepstate | Oct 19, 2023

In reply to @rjjb "Taking 2 Tylenol pills at bedtimes eases my RLS." + (show)

I take hydrocodone during the day for narcolepsy so I try not to take anymore tylenol. Since I stopped the Trazodone it has been much better. I switched to a pill actually made for sleep so I'm out before it can really bother me too much. It's been pretty mild since I stopped the Trazodone. I had gone to Quetiapine right after and found out that was causing me some serious problems too. I finally just told my Dr I'm done with these psych meds to solve sleep issues, I want something specifically for sleep. After what I've been through with these other drugs, risking addiction to a sleeping pill I have to take anyway is not high on my list of concerns, So a good thing to do would be to research medications and supplements you are taking to see if any might be contributing to the pain.

3dogs | @3dogs | Oct 19, 2023

In reply to @sleepstate "I take hydrocodone during the day for narcolepsy so I try not to take anymore tylenol...." + (show)

Thanks I will...I had read about trazadone possibly causing some people to have worse symptoms, so when I retired, I stopped taking trazadone for 30 days. For 30 days I hardly slept and didn't notice much difference in my legs but maybe I needed to be off longer the problem was I was not sleeping. I am worried about trying other stuff to sleep as I have so many reactions to medications. but maybe I need to research this again and try again.

3dogs | @3dogs | Oct 19, 2023

In reply to @sleepstate "I had terrible RLS for years and found out the Trazodone I was taking for years..." + (show)

Thanks, I will research more...

sleepstate | @sleepstate | Oct 19, 2023

In reply to @3dogs "Thanks I will...I had read about trazadone possibly causing some people to have worse symptoms, so..." + (show)

I took the new sleeping pill last night and didn't sleep at all. Now I have a sleep text across town in an hour and so tired, I keep falling asleep. I have me alexa waking me up every half hour. I hust took a nodoz, I don't think I can't get there if I don't. My son went and sold his truck for a motorcycle, he was my ride. Not on that tho. Uhh.

rjjb | @rjjb | Oct 20, 2023

I take a pramipexole tablet, 0.5 mg (prescription),
and occasionally 2 Tylenol tablets at bedtime for my RLS.
They do help me get a good night's sleep.

sleepstate | @sleepstate | Oct 21, 2023

In reply to @rjjb "I take a pramipexole tablet, 0.5 mg (prescription), and occasionally 2 Tylenol tablets at bedtime for..." + (show)

I have a bunch of that too. I ended up falling asleep when I wasn't supposed too then got a bad tooth ache and couldn't sleep when I was supposed too. I hope the tests didn't get too screwed up.

celticxian | @celticxian | Oct 21, 2023

I have had RLS due to taking an antidepressant. I now take Iron to get rid of it.

jmb73 | @jmb73 | Oct 22, 2023

I have severe RLS- so bad that my leg and foot jump. In the evening, it would start when I sat in my recliner. I am 79 and have had this most of my life. I have a new PC and she ordered Ropinirole-.25 mg. I can increase the dosage, if necessary, as it's not a controlled substance. It is working!! I have slept through the night since I have been on it and no more problems in my recliner. It's for Parkinsons and RLS. I take it 1 hour before bed and have a small snack so it won't upset my stomach. I would recommend you ask your docs about it.
Hope this helps.

3dogs | @3dogs | Oct 22, 2023

In reply to @jmb73 "I have severe RLS- so bad that my leg and foot jump. In the evening, it..." + (show)

I've taken several meds for Parkinsons and RLS and had a reaction. I have reactions to many meds...blah I will double check if that is one that I tried, but pretty sure I tried this.