RLS: I have had rls all my life I... - Restless Legs Syn...

Restless Legs Syndrome

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RLS

Artsy profile image
10 Replies

I have had rls all my life I understand how everyone feels. I went to the Dr a month ago and tried to explain to him that I feel exchausted and can't stand the medicine I wish they could find a cure. He just looks at me and prescribed more. So frustrating I know I can't just stop my meds because I have such pain in my arms and legs. I used to not be able to describe rls to anyone but I know how to now pain. I tried to stop my meds on my own never again I would have to have pain meds first Now I'm taking extended released meripex. I like it better than the regular meripex I don't have the bad side effects I take it around 6 in the evenings and I can stay up do what I want and it doesn't make me sick.

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Artsy profile image
Artsy
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10 Replies
Mopsy1950 profile image
Mopsy1950

I know it's so unfair and cruel,all we can do is sympathetise with each other ,I have the same problem with doctors to they make you feel like a hypacondric ,will send you a hug not much but. do understand how you are feeling

Artsy profile image
Artsy in reply to Mopsy1950

Thanks I always ask the Dr if I have never seen them before have you ever experienced rls? I guess i got tired of some of them just acting like well lets give you this medicine and dismiss me. I just know if they ever experienced this they would work more on a cure for everyone instead of just throwing complicated meds to us.

Mopsy1950 profile image
Mopsy1950 in reply to Artsy

That's where I am now Artsy ,not in very good place useless doctors

Hi Artsy, i am glad you have found a med now that works well for you. The slow release meds seem to be better for alot of people, rather than the regular ones.

SuperMNew profile image
SuperMNew

I, too, have suffered many years with the RLS, but recently (6 months ago) it got so bad that I finally sought medicine so I could sleep. Prior to the 6 months, I was taking loads of calcium and magnesium which seems to help relax my legs, but recently, nothing has helped besides ropinirole. And that has had less lasting affect. I have been using Mucuna Pruriens, a 40% extract preparation of L-Dopa that works better than ropinirole. The only problem is that it doesn't last long enough through the night. I must get up and take more. So, at 2 or 3 in the morning, when the first dose of Mucuna wears off, I get up and take powdered Zandopa, a quick-acting form of pure L-Dopa, and it goes to work within 15-30 minutes. I get back to sleep and can get a decent night's rest.

I should mention also that I am beginning a series of procedures on my leg veins. It's interesting that the doctor that is performing what is called "Endovenous Laser" treatments of the larger veins in my legs has himself had RLS. He's also had the vein laser treatments and it has completely healed him of RLS. He tells me that my RLS symptoms are classic for inflammation in the legs which is caused by veins whose valves do not work to push the cleansed blood back up to the heart. So the "dirty" blood causes the inflammation which causes the RLS. He said to me that 80% of the people who come to him for vein therapy have been cured of RLS. That's pretty significant. Apparently the larger veins in the legs stretch with age and become ineffective at cleansing the blood as we age. Since I have tried most everything all of you have mentioned, I am very hopeful this vein treatment will benefit me. I've had two treatments so far (and insurance does cover the cost), and there will be 12 more. He tells me the inner vein structure begins to take over the "load" of transporting the now cleansed blood back up to the heart which the weaker, stretched-out veins have been failing to do.

I realize that many of you think this is a neurological problem, and it may very well be, but when you get desperate enough for sleep, you may want to seek out a doctor or a vein clinic you can work with. (Go on line and look at this therapy and read about it.) It's worth a try. Taking prescription drugs seems to have a limited useful life for most of us, and some can end up causing more problems than RLS.

God bless to all of you.

Mopsy1950 profile image
Mopsy1950 in reply to SuperMNew

I hope it works for you I have been getting my veins injected I'm down to 3 months now go back beginning of next month ,not many veins left to do but it hasn't helped my RLS at all ,really pinned my hopes on that ,so just remember it doesn't work for everyone ,hope it does work but just letting you know not always

SuperMNew profile image
SuperMNew in reply to Mopsy1950

There may be something else at work here with you besides your veins. There is with me! It's called food sensitivities. I've tested it out and for me there are two issues: foods that I am allergic to cause RLS, and my veins have an impact as well. I was tested for food sensitivities, and 20 foods that I eat all the time I've become allergic to. I've cut them out; now I am working on getting my veins in shape. My RLS is almost gone, and I still have more vein work ahead. I expect total relief. The doctor working with my veins in world-class! God bless you Mopsy! I hope you can figure this out for yourself.

Mopsy1950 profile image
Mopsy1950 in reply to SuperMNew

Thank you will try anything

Retren profile image
Retren

Retren I would be interested to hear his explanation for those of us who have had this condition in childhood My first attack took place when I was 10 years old.

Artsy profile image
Artsy

Mine first started when I was 8 years old. I would rock myself to sleep at night when I would go to bed. I have had this all my life some people understand about this problem but some may never because they have never experienced this. My grandfather had it so bad my mother and a few cousins so it runs in the genes. At times it's been so bad I would think why do I have this. I remember a dr told me one time it's a complicated medicine now I understand what he meant I wish I never started it so I'm going back to the dr that started me on this requip now I take meripex er. And ask her what do I do now because it scares me to think about ever getting off of this. I haven't seen her in 10 years I go to another dr. I hope this makes sense

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