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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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@ranpattiwagner Thanks for your message about Pramipexole.
I have been taking it for a few years. It's no cure for me, but the only
thing that lets me get some sleep. I probably would die from
lack of sleep without Pramipexole. I keep hearing about 'augmentation'
but hope it won't be a problem for me.
@missjb
I am in total agreement with @missjb
Pramipexole is the worst drug out there, and all stated from @missjb, is true.
Thank you for sharing the word regarding the side effects along with augmentation with pramipexole. I don't know why this drug is not removed from the FDA.
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1 ReactionPlease tell us why pramipexole is such a terrible medicine.
ALL dopamine agonist for restless are no longer first line treatment as you can AUGMENT on them. The classic augment issue is drug addicts. They need more and more of the drug to get the same effect. They end up overdosing and dying. The difference with restless legs and a dopamine agonist is that we just end up having to increase and increase the medication. We don't die we just get REALLY BAD restless legs that dopamine agonists will not help
Can I get a one dose gabapentin for rls in the UK so why have I been given 3 split doses for RLS? I need it to sleep not during the day makes no sense.
@rjjb Augmentation is more than just needing higher dosage. It also means the dopamine agonist drug just doesn't work. And, it messes with a person's own dopamine system. All of us have natural dopamine in our bodies and having it function properly is important to our wellness. Augmentation messes our dopamine "system" (as I understand it) and makes one feel awful--as well as unable to sleep, I believe.
Google "augmentation from dopamine agonist drug" for a better description.
Also, in the United Kingdom (England, Scotland etc etc) they no longer allow these drugs to be prescribed for restless leg because they cause problematic loss of inhibitions about having sex and spending money. Someone who was rational can become sexually promiscuous and running up debt. Google this--it was in newspaper reporting a while back. Also, someone on our forum wrote about that being her exact experience.
Most dopamine agonist drugs have been prescribed by our primary doctors (internists and family practice doctors) who treat the gambit of conditions, not just RLS. It took sleep medicine to take off and doctors within sleep medicine to become specialized in RLS for augmentation to be recognized. These RLS experts saw these patients with RLS who began to have symptoms of augmentation (suffering terribly) and figured it out--that the dopamine agonist drugs were the cause.
Do look at the RLS Foundation website for explanations that are better than mine. Search on the home page of our forum for "augmentation" and you can read descriptions from posters here about how terrible augmentation was for them.
Your question is very important. Many people were put on dopamine agonist drugs years ago and have had no problems yet--making them mystified why these drugs are considered "bad."
@missjb you are so correct and right-on!
Thank you for explaining about augmentation with RLS so well.