Restless leg syndrome

[cWRN]

I went on Web MDand found a lot of information. Various treatments and life style guides. Most of you have probably read this info. Stress can be major cause for it flaring. I am going to try cooling down my room. Cool is better for me. Years ago preparing for major surgery, 23 hrs over two days. Months before I listened and practiced self hypnosis and progressive relaxation. I found it extremely helpful on many levels. Need to do them on daily basis. Thank you for all your input. It has been extremely helpful.

[Joolsg]

Hi there

I definitely find that stress makes it worse. I did start to do relaxation/meditation but often the legs would start jumping just as I was lying down to meditate, so that was kicked (literally and figuratively) into touch! Thanks for sharing your experience,

Jools

[LoisTonya in reply to Joolsg]

I find the same. The Alexander technique was helpful for my neck pain but if I lie down the legs start so I have given up. I'm about to increase my Ropinerole although I've been fighting to keep it at the lowest level I can cope with but a run of getting up at 3am has driven me to comply with the neurologist's advice to up my dose.

[Joolsg in reply to LoisTonya]

Hi LoisTonya,

I suspect you have augmentation, where the ropinirole no longer works and makes the RLS kick in earlier. What dose are you on? I was on ropinirole for about 12/13 years and it worked brilliantly, then I had to take higher and higher doses for it to have the same effect. The RLS then spread to my arms, back, trunk and face and it kicked in earlier in the day.

Look up augmentation on here and if it sounds familiar, the only thing you can do is come off the stuff by reducing dose slowly over months and taking tramadol or an opiate or codeine while doing so.

Jools

[LoisTonya in reply to Joolsg]

I'm only on 1mg. The neurologist told me to up it to 1.5. Increasing up to 4mg. I still had some .25 so took 1.25 for a week but my head was so fuzzy and my balance was dodgy so I went back to the 1mg. I manage during the day by avoiding sitting for long and walking intermittently with sitting. I play board games in the evening and walk around between my goes. Its just the nights that cause me trouble.

Lois

[Joolsg in reply to LoisTonya]

Hi Lois,

The max dose is 4 mg and current thinking/advice from RLS experts is to keep you on lowest possible dose of ropinirole. If it's not working and you need to increase dose, that just shouts Augmentation to me.

Have a look on here and print off all relevant info to show neurologist when you see him/her next. You might be better getting off ropinirole and trying tramadol or gabapentin, or horizant if you're in USA.

Hope you find something other than a Dopamine agonist that works for you,

Jools

[LoisTonya in reply to Joolsg]

Thank you Jools for showing an interest.

The thing is it does work but not for the whole night.

[Joolsg in reply to LoisTonya]

Try splitting dose so .500mg an hour before bed and the other .500mg when you wake at 3am. It'll take an hour to kick in. Sadly, not many of us with RLS can get 7/8 hrs uninterrupted sleep at night.

jools

[LoisTonya in reply to Joolsg]

Thank you Jools.That soundsa workable idea. I'll try tonight.