Looking for relief

[Susan438]

I am 68 and have been suffering from RLS for many years but never as bad as it is lately. Wondering if anyone has a good way of dealing with this.

[Belsheart]

It's so hard. Right now I'm having a terrible time going off of pramipexole, but i have to do it because it has started making my symptoms worse. Hot baths help me sometimes

[blokie]

My surgical pharmacist has put me on Simemet 100 mg twice a day( that’s 2 tablets every 24 hours). I also take Tramadol 4 times a day when the need arises, so far so good.

Best of luck Blokie.

[Madlegs1]

What medications are you on- ALL meds and dosages and duration of use.?

We can then start to advise.

Also , it's a good idea to keep a food diary to check for triggers.

[Susan438 in reply to Madlegs1]

I was taking ropinirole hcl .25 mg 1 or 2 at bedtime. It was making me nauseous so I didn't take it last night and haven't slept. Took gababentin 300 mg. 2 capsules instead and a supplement Pharma GABA. Still no sleep and legs extremely jittery.

[peterfromlondon in reply to Susan438]

i find all the drug solutions make me get nausea

[Joolsg]

How long has you been taking the Ropinirole? If more then a few weeks, the sudden stopping can trigger withdrawal. Your legs would be very, very jerky and jittery for at least a week as your body screams out for its dopamine hit. A strong painkiller will help alleviate this until the gabapentin kicks in. Hopefully, once the jittery legs calm down, the gabapentin may be enough to resolve your RLS in the long term.

[Susan438]

Wow that is great information. I'm so glad I joined this message board. Makes me feel better. Thanks so much.

[Parminter]

All the dopamine agonists are filled with hidden miseries, including insomnia and augmentation. In other words, you must take more and more for less and less effect. In order to come off, slowly please, you will probably need a strong opiate. I am using methadone for breakthroughs, which happen more and more, and I will NOT take more DAs.

Many doctors know little about this. Go to rls.org, which is the Restless Legs Foundation, and search for Dr Christopher Earley on opioids. Then print it all out and take it to your doctor.

Also, if you have not yet done so, have your ferritin levels tested. It is a crucial part of a complex puzzle. remember, RLS arises in the brain, not the limbs, and brains are complicated!

[Eryl]

I've gone onto a low carbohydrate diet. No sugar, or sweetened foods, and only get mild rls after a meal rich in carbohydrates, and then for only a few minutes.

[Memmy in reply to Eryl]

Im sure sugar is a trigger but its so difficult

[Eryl in reply to Memmy]

It's up to you to decide which you can tolerate. Rls, or a life without sugar. I make up for the missing taste hit with spicy food.

[peterfromlondon]

oh susan i know how you feel im 64 and mine is as bad as ever.ive even been seen by guys hospital sleep disorder centre , one thing magnesium helps jumping legs it really does ...

[Dougg]

Hi Susan. I'm 65 and very empathetic. I used oxycodone along with pramipexole and gabapentin for quite awhile, and I experienced very difficult withdrawal when I started backing off of the two dopamine agonists. Based on success stories from this site, I started using kratom, and was able to completely drop everything else without any withdrawal. The kratom did a better job of alleviating my RLS symptoms than all of the other meds combined, and I started getting good sleep for the first time in a long time. It takes a bit of experimentation to find the best amount, but I didn't find it difficult. I just started at a low dose and increased it until I reached the sweet spot of adequate symptom alleviation. That said, as you probably have seen from this site, everyone seems to react differently to different meds and substances. Individual experimentation seems like it is often a prerequisite for dealing with RLS. My guess is that RLS may be a symptom of some other imbalance or inflammation, and the underlying cause may be different for everyone.

Best of luck in your journey!

-- Doug

[darena]

I had run the gamut trying to help my severe RLS and nothing worked. I bought a Relaxis pad and though it was quite expensive it worked!. I am pain It took a few weeks but with the help of the Relaxis people I am now pain free. I would urge you to try it. You can rent it if you like.

Daren