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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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Sometimes compression socks are great and other times the annoy me. I have both knee high and then anklets with and without toes cut out. I use the wire thing to help put them on but getting them off is a chore. I've had a reaction to all of the prescriptions that people have mentioned to try. my ferritin levels have been checked and are good, but have been told that there is a possibility that my Iron levels are good, but my brain is not getting the msg and thinks I'm low in Magnesium. What works the best or more consistence for me is heat wrap on my back, tramadol, CBD gummie (60mg CBD / 1 mg THC). Its made a world of difference in my life.
There is a supplement that I use it helps me alot. I use to get the restless leg tablets and dissolve under the tongue it worked for a while then it stopped. I started slicing raw ginger in see through pieces and put it between my heel and my sock for bed and take 2 ashwagandha supplements works like a charm. I had RSLS so bad I would fall asleep in a tub of really warm water for relief but when I got out my legs would be worse then before I got in the tub.
I've had RLS for about 40 years. The only thing that has given me some
relief is pramipexole 0.50 mg (prescription).
It seems like I have had RLS since I was a child and I'm now 78. I have been on ropinerole (Requip) for 20? years and my doctor wants me off it because of findings that it's not the best med for RLS. I already know that gabapentin is not effective with bad side effects so I asked what else could I take for severe RLS. He ordered Dipyridamole for me and when I looked it up, it was a blood thinner that was used to prevent blood clots after heart valve replacement. (!) I did research on it and found that just recently it has been found to help RLS both the disturbing movements and even helping with sleep. It's an adenosinergic agent similar to aspirin. I cannot tolerate aspirin or NSAIDs so I had the pharmacy hold off on filling the RX until I can find more information on the medication. Does anyone have experience with dipyridamole or Persantine? Please relate your experience with it especially the side effects and how effective it was in controlling the RLS. Thank you
Benfotiamine 300mg | 200 Veg Capsules | Enhanced Absorption | Supports Overall Health | Increased Bioavailability and Nutricost Alpha Lipoic Acid 600mg Per Serving, 240 Capsules - Gluten Free, Vegetarian Capsules, Soy Free both available on Amazon have been a god sent for my RLS - and no side effects - takes about 2 weeks to see results
I have had RLS for many years. The only medication that has given
some relief is pramipexole 0.50 mg (prescription). I am finally getting
some sleep with this medication, instead of walking the floor all night.