Restless Legs Syndrome (RLS) Discussion Board

Hi everyone


Ive had RLS for 40 years, PLMD for 4 years and Myoclonic Hip seizures for 3 years (result of taking one Tramadol while on Trazadone and got Seretonin Syndrome) Don't take either now.
My symptoms aover the last 2 years have been relatively mild. However because I'm having a Hip Replacement in a couple of months I didn't want to take any chances of dislocating my hip because of the jerks so I've been trialing Ropinerole for three weeks. Was up to four 0.25 tabs per night.
I had no RLS at night but my Hip Jerks worsened during the day and I started feeling very anxious I so decided to stop taking it. Last two nights I'm now having the worse RLS, PLMD ever! Last night I got up and took my dose of Ropinerole as I couldn't stand it.
I'm now very concerned about my Hip Replacement and how I can withdraw from this drug.

Any suggestions?

If you did augment, these increased symptoms will go away in 5-15 days. That is likely little comfort at the moment! But, it should be better before you get the surgery.

Do you know what your serum ferritin level is? You could be low and increasing it could help both to tolerate such meds without augmenting and to reduce symptoms.

I have had both hips replaced, about two years ago. My RLS/PLM were worse before the surgeries. Also taking pain pills helped afterwards. Like Ann said, you may need to stop taking the Ropinirole and taking something else, if you are augmenting. Just make sure you follow the hip precautions, (they will tell you). I still don't bend straight down, keeping my knees straight) like to touch my toes, or pick something up off of the floor. I always bend my knees, and make them go outward, like I was bowl legged. That position keeps your hips going the right way.
My RLS and PLM was better after the hips healed.
Good luck

Four tabs of ,25 each is as high as you want to go...the new (2012) recommendations of some specialists are a max of 1 mg daily for that med. If you've already augmented on it, your max is zero, in my opinion. HArd to tell if you augmented though - did your symptoms start up earlier in the day as the days passed? did they spread to arms? if so, you may have augmented. IT's not impossible to augment inside of 3 weeks, Ann and I and others did.

You need to get off the ropinirole whether or not you've augmented, so it's not even necessary to figure out if you have. What you need to know is that the torture will end, and it's very very worth it to get off that med. The first three days are the worst, almost no sleep and incessant torture, but then you begin to see the light at the end of the tunnel. Giving in and taking the med will only prolong the torture.

I also think you should read as much as you can about WED/RLS so you can avoid triggers, and arrange your life so as to cause yourself the least grief, and in that way hold off taking meds again for as long as possible, or even forever.

Thank you for your replies. I didn't see them until today.
I have managed to come off the Ropinirole .....was OK after a couple of nights. I still however have RLS and PLMD and I'm very concerned about how that will affect me after surgery. Just the thought of having to sleep on my back is worrying as with PLMD ......which makes my body very restless and feel the need to turn in bed often, is of great concern.

I've been taking Co-codamol when I'm restless and that settles me down but still can wake in the night with PLMD symptoms. Don't want to get hooked on them either!
I'm in two minds about even having the op now. I will discuss all this with my surgeon on the 18 th January.

As a side point I was/am taking L-Tyrosene amino acids which was helping a lot last year but doesn't seem to help now. Has anyone tried it?
I'm going to ask my GP about my Ferritin levels.

So well done on getting off the Ropinerole. The fact that you say it was ok after a couple of nights just goes to show how different we all are.
Congratulations.
The cocodamol will indeed help with your RLS symptoms, I use it to supplement my (too high) Ropinerole dosage. The pain relief provided following your hip replacement surgery should go some way to relieving your RLS, discussion with your doctor should hopefully sort this out.

Also, please do have your ferritin serum checked and get the reading, the normal (20 ??) for non sufferers of RLS does not apply to us, you would want it to be around 100.

themadnana wrote:
As a side point I was/am taking L-Tyrosene amino acids which was helping a lot last year but doesn't seem to help now. Has anyone tried it?
I'm going to ask my GP about my Ferritin levels.

We have talked about amino acids and l-tyrosine before. Check in the non-prescription medicines section to find the posts. Some people feel they help; others of us have not had any luck. We're not sure if it's because it only helps in certain circumstances or why it doesn't help all of us.

Well here's a little progress. Just got home from seeing my GP. I explained to him about the Ferritin. He looked up my last iron test from 2 years ago and it was 20. I'm now on a course of iron tabs.322mg a day for three months.Not sure if that's enough. Any feedback will be welcome.
Not sure how I'll feel if this is what the problem has been along (40yrs) I read an article today which said that non anaemic iron deficiency can be linked to IBD........something I've had for ......40 years.

It would be great if you could get your ferritin up towards 75/100, and wonderful if this proved to have some positive bearing on any ongoing conditions be it RLS or IBS

themadnana wrote:Well here's a little progress. Just got home from seeing my GP. I explained to him about the Ferritin. He looked up my last iron test from 2 years ago and it was 20. I'm now on a course of iron tabs.322mg a day for three months.Not sure if that's enough. Any feedback will be welcome.
Not sure how I'll feel if this is what the problem has been along (40yrs) I read an article today which said that non anaemic iron deficiency can be linked to IBD........something I've had for ......40 years.

That's typical - the iron prescribed. It really does help some of us. Not all of us, but enough that it's worth trying.

If that is what is causing this...be sad, then mad for a moment, then be happy that it's finally over!

I shall keep you posted about my progress. Thank you for your interest and help.
I keep meaning to ask. Has anyone tried Halycon Bracelets? I got some 12 months ago and would say they have helped. Like all things there seems to be different reviews about them.

I haven't tried the bracelets but it's good for members to hear that you had success. Thank you.