Interested in others' similar experiences with rls

Hi

I can only sympathise! I have the foot pain in my left foot. Oddly it doesn't hurt when I stand on it. I couldn't manage roping role or pramipexole but have recently moved on to Neupro patches. I take clonazepam (klonopln I think) to get me to sleep. I also take tramadol mostly in the evening about 7.30. I have had MRI and nuclear brain scans and the neurologist has concluded that I have severe RLS. I have only had this since April last year. One of my GPs said some months ago that RLS is a horrible condition. I agree!

I have had RLS  since 1996. I dreaded the aftermath of a hip operation and having to be seated for a lot of the time. However, until I came off the painkillers, my rls disappeared after my operation. My doctor now gives me dihydrocodeine tablets. I take one about 6pm when my rls gets really uncomfortable, then one before I go to bed. I used to take 2 at 6pm but sometimes woke in the night so now I split them. These tablets are the only ones that have ever helped. If I get rls in the day, I Get up and walk around or try to do something  to distract me. I sometimes used to be up in the night doing ironing or walking round the house. If I visited friends, I had to stand up most of the time to relieve the awful discomfort. I used to get so frustrated and tired. To go to the cinema was impossible unless the film was brilliant and took my mind of the symptoms. Strange they haven't found a cure when it is known that distraction or standing up helps enormously but only for a short time. Good luck.

Hello loanarrange,

I have a suggestion, don't know if it will work or not but there are times when we get to the point where we will try anything for relief of pain or discomfort.  I have gone through times of these restless legs, joints feeling as if they are being forced apart - deep ache in the muscles that only movement can relieve.  I use Olbas Oil,  only a few drops because more will cause burning,  rub this into the area's that you are feeling the discomfort - wash hands after, you do not want this oil any where near your eyes.  It is not expensive and can be bought at a pharmacy or supermarket.....   a few drops only goes a long way,  the relief is .....well a great relief!    It may work,   is worth a try.

Warmest regards

Jessie x

Hi,

I doubt foot pain has anything to do with RLS/WED. 

2mg Ropinirole is a bit high but probably too low for augmentation and the 3pm onset sounds like augmentation.

Either way a dopamine receptor reset seems the way to go. That means an opioid like methadone for a month and no Ropinirole. 10mg of methadodone is very small and will 100% take RLS away.

Sleep apnoea means you stop breathing and your body fortunately kicks it in again or you die, keep using mask. Try nasal pillows instead of mask.

A Neurologist will likely know little about apnoea.   

Please search for articles in this forum on the Monash University FODMAP diet.   I have chosen food according to this diet for about a year and it has brought me great relef.   No drugs  but a fairly restrictive diet until you sort out the foods you can eat without a problem.

This is free with no one making a profit.

If you need more information then let me know and Ill help.

Graham

l toohave suffered from RLS for a long period of time (5 years or so) and during that time l have been taking pramipexole with only limited relief. Presently l find that a doseage of 0.018mg taken  am and pm is the most effective but unfortunately insomnia has kicked in and l find that short spells  of sleep in total approx  5hours are max.  Symptoms are mostly right sided affecting my foot, leg and upper body and are relieved by movementt (walking) and massaging but now episodes have extended in length (can be up to 2-3 hours) and frequency.

l see a consultant Neurologist annually but apart from changing my medication he is lacking in ideas-  its very much of a case of managing your own condition and theres nothing more to be done about it. .

I sympathize and empathize. I have been cursed with this demon disease from hell since, well, forever. I had it as a child, adolescent, and now as a middle aged adult. My symptoms are a really awfully bad tickle in my legs, starting in my thighs and moving down into the calf and foot. Horrible. Imagine a metal bristle brush across the bottom of the foot over and over only inside the legs. 

Drugs. Drugs are the only way to get releif as far as my experience goes. Homeopathy is crap. Soap at the foot of the bed is crap. I'm on Mirapex and Lyrica, sleeping about 6 hours a night now. 

Best of luck to you. 

I have sleep apnea, treated with CPAP.  No relation to RLS, I'm thinking.

I have RLS (or PLMD more corectly in my case) for a very long time (around fifty years) and have been using a CPAP machine for more than twenty years. The RLS has been relatively calm until recently when I had a knee replacement and that shook the hell out of it. Now I find intense pain and discomfort around 7:30- 8pm and I am taking a 0.125 mg tablet of Pramipexole hydrochloride which seems to help and another when I am going to bed. Last night I forgot the second dose and had a hell of a bad time for an hour or so.

I keep serching for a long-term, permanent solution to this problem, but I don't think one exists and to have two sleep disroders - as you and I do loanarragnem- is very unkind I reckon