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I want to SHOUT this from the mountaintop: the answer for RLS is low dosage Methadone! I've had RLS for 8 years and 4 years ago was introduced to Dr Christopher Earley at Johns Hopkins. I had been taking Mirapex, and immediately he switched me to 15mg of Methadone, and it was a life saver! It worked from Day One, and now 4 years later I'm taking the same dosage and it still works. I admit I was spooked when I heard "methadone" because like everyone, i thought that was for heroin addicts, but they take much higher dosage. Here's a page on the Johns Hopkins website that says 85% of RLS patients normally respond well to Methadone (http://m.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/treatment.html). So ask your doctor RIGHT AWAY to give you an Rx for 10-15mg of Methadone daily. And tell me if it works and spread the word! J.W. Hornsby, email@example.com
I want to try a TENS unit, and I thought to use my D'arsonval high frequency device. It seems to have worked. My calves feel calm and relaxed. You might try it if you happen to have one.
I have RLS....it is in my legs, arms, and hips. I am 74, confined to a wheelchair and can not walk a step. I haven't had much trouble with RLS for years until just recently when I stopped taking Mobic, and Vicaden (sp) I was wondering if that could have started it up again. I have only been off the pain meds for a week. I don't know how long it should take to get it all out of my system....if that is even the reason for the RLS to hit so badly again. I am getting shots in my knees, Euflexxa)
SusanHas anyone had any success with TENS (electronic pulse massager) used directly on the legs?
SunI had Restless leg syndrome for years until a family member talked with me and told me what she had done, and told me to try it and see if it would help me. So I did, and I couldn’t hardly believe the results I got by doing what she had told me to do. I’m so glad that I started this treatment. I feel like a whole new person. I sleep all night, and never get up and vicariously shake me legs just to wear them out so I could sleep. I have been doing this treatment now for around six years and it is still working for me. Every once in awhile my legs hurt just a little when I sit for a long time, but almost all of the time I feel great, Every night before I go to bed I take (2 Natural Calcium 600 mg with Vitamin D, I use Spring Valley. And 3 Natural Magnesium with Chelated Zink, I also use Spring Valley, plus I take 1 antidepressant pill called Amitriptyline 75 mg Tab MYL) I couldn’t feel better then I do right now.. Good Luck!!!
I have recently started Sinemet Rx drug 25/100mg, available generic, paid by insurance. I take only 1/2 tab 30-60 min. before bed. It has worked wonderfully! From the first night, I have not been roaming around the house. It has helped the pain too. It is an established treatment for RLS, older than Mirapex, but works in the same way (dopamine), is much cheaper. I didn't even find it listed on the treatment list here, but I am amazed how fast and well it has worked for me.
Has anyone been on Symmetrel or Sinemet for their RLS, and how did it work?
To the person with severe deep aching in legs and shoulders with low lymphocyte count- please get blood test for lupus. Low lymphocytes, aching pains and RLS can be associated with lupus, an autoimmune disease. Not curable, but treatable so you can feel better.
clonazapam prescribed, seems to help; also on Neurontin. My main problem is something diagnosed 25 years ago as MS; then about 5 years ago I was told it was NOT MS, but didn't know what it was! (Mayo Clinic). Maybe progressive myelopathy? I'm wheelchair-bound, legs often don't support me (age 75), with COPD, arthritis - but am active and positive. Where should I enter this info?
Magnesium 500mg - I take one once symptoms begin in my right leg and it has works great for years.
Re: Soap in bed touching lower legs — I put a bar of ivory soap inside a satin pillowcase and put my legs inside the pillowcase. That seems to prevent the sensations. I tried it with a cotton pillowcase and it did not work consistently but did sometimes. I think it is due to the glycerin in the soap which is a humectant. I haven't tried other kinds of soap but they might work also.
Re: Amitriptyline — It is not in any way a good treatment for RLS. It is the drug that was given to me for migraine prevention, and that did not work, but kicked my RLS into high gear, making me seek a doctor after I I had RLS so bad that I was literally suicidal. many drugs can help, but many can hurt RLS and this needs to be on EVERY RLS web site! We all are different as we say in the RLS community, but this is pretty universal for all with RLS.
Re: Amitriptyline — Amitriptyline is WELL KNOWN to excerbate RLS. Any tricyclic or SSRI antidepressant has that effect on RLS symptoms for 99.9% of us who have RLS and should be avoiided. People need to know this! It is well documented.
Re: Bladder fullness — it feels like I am full all the time and I can actually go all the time!
Re: Deep, aching leg pain — OMG! I have the same symptoms! I have had this condition intermittently for years. RLS was negative. In the last few years, I have also experienced the same type of pain in my shoulders. I just had some blood work most of which came back normal except low lymphocytes (18 - negative for HIV). Any idea what causes this?
Re: Deep, aching leg pain — I have a very deep aching pain in both my legs at night. Once I get up in the morning and start moving around it goes away. The pain wakes me up and if I stretch my legs it seems to help.
Re: No sugar within 4 hours of sleep — Lowing salt intake has helped sometimes. Also, taking magnesium seems to help.
bluecashRe: Mirapex — works great for me, If I don't take RLS returns
bluecashRe: Requip — I tried it worked for about a year then stopped working. Switched to Miraplex about 3 years ago and it works like a charm. If I don't take Miraplex my RLS comes back right away.
duzcittaRe: Medication side effect — My struggle with restless legs sydrome ceased immediately once I was taken off of prescription amphetamines. I have narcolepsy, and now that I am off amphetamines and on modafnil I have had no RLS at al.
JoannaBRe: Mirapex — I've only been on Mirapex for 3-4 weeks and the doctor said that it would take longer than that to really be able to tell if it was going to work.
AntidrugrepRe: Iron supplements — Just to add my two-bits-worth to anne's contribution: you don't have to have LOW ferritin levels to respond to iron supplementation. The limited studies that have been done (because there's no real money in it) show that many people respond to supplementation with ferritin levels in the NORMAL range. I test patients with RLS to make sure they're iron status isn't HIGH-NORMAL before prescribing iron, just to make sure I'm not going to overload them. If they respond, great. If not, no harm done. Iron is pretty cheap.
NiftyRe: Uncomfortable, compelling urge to move legs — My symptoms are in my lower right abdomen. I have intermittent stabbling-like pain about every 10-20 seconds. If I walk or move around, the pain goes away similar to RLS. I think it may be a very rare form of RLS.
otiscolakeRe: Exercise — i am on neurotin now. i stay away from caffeine and sugar. excercise heavily. that helps. never heard of tonic water but will certainly try it.
otiscolakeRe: Compulsive leg movements and jerks — i hav had minor rls for a few yrs, it is now getting worse, i tried mirapex and had bad side effect of it plugging my sinus up. now am trying neurotin.
TheLoopyLizRe: Requip — Helped my RLS symptoms, but made me INCREDIBLY manic, and scattered.
okiedokieRe: No sugar within 4 hours of sleep — If I consume sugar within 4 hours of bed, I can guarantee that I will have bad episodes of jerking legs
anneRe: Iron supplements — Do not try this without getting your iron and ferritin levels tested. My iron levels were normal, but my ferritin was low. This is the only non-drug therapy that consistently works for me.
anneRe: Avoid caffeine, alcohol and tobacco — stopped drinking caffeine and alcohol due to pregnancy; RLS got much worse but probably because of pregnancy. can't tell what cutting back in isolation has done. i've noted in the past that getting moderately drunk actually helps.
markzRe: Quinine (tonic water) — Can't tell if it helped or hurt.
markzRe: Exercise — Can't tell whether it helps or hurts for me
markzRe: Alcoholic beverages — in moderation (light drinking) or excessive (drunk) does not seem to help.
markzRe: Tingling-crawling feeling in legs — The involuntary jerk has the same weak feeling as after the doctor taps your knee to kick your reflexes.
markzRe: Compulsive leg movements and jerks — mostly in the evening as sleepiness approaches and into the first half of the sleeping night. Less so, but still occasionally other times.
© 2015 CureTogether. Data is submitted by members and does not constitute medical advice.