RSL sufferer

[Lolabear1]

Hi I’m 44 and this is my fourth year with RLS,after thinking it was just me then watching a documentary on RSL I realised I’m not alone and tried to seek help the doctors seem to be not interested one bit and after me telling them what other people are taking they finally put me on pramipexole it has calmed it down and I able to sleep but if I miss one it is enhanced tenfold,it really has worn me down and I can’t even go to the cinema without my legs kicking off..

is there any hope ? A cure or I stuck on these pills for the rest of my life ?

Thanks Jamie

[Suberino]

Hi Jamie.

Yes there is hope and you will find plenty here. And lots of people with an excellent knowledge of the different things you might want to explore to help your RLS improve. The first thing to look at is your iron levels. I will leave those who have the facts and figures at their fingertips to write to you about that.

There is no cure as yet, but a growing body of information and research. Your experience of having to educate your GP is a very common one. It is worth finding out as much as you can about medication and possible side effects and maximum doses for RLS etc. so that you can protect yourself from some of the pitfalls. The Mayo Clinic mayoclinic.org/diseases-con... and John Hopkins medicines are two possible places to start. hopkinsmedicine.org/health/.... Also the RLS UK website.

Sue

[Jules1953]

Hi Jamie, what dosage of Pramipexole are you taking, how long have you been on Pramipexole and have you increased the dosage since commencing Pramipexole.

I have suffered with RLS for 49years and have been on various medications to treat my RLS symptoms for 27years.

I have recently been slowly weaning off Pramipexole due to augmentation.

Many of us on this site are in the same situation. Doctors are still prescribing Pramipexole to treat RLS but from my personal experience I would recommend that you try other avenues.

Just keep in mind that Pramipexole can not be just STOPPED you must reduce slowly. I then introduced Gabapentin for a number of weeks.

While I was weaning off Pramipexole I used Endone, (oxycodone) 5mg to help me with the horrific withdrawal symptoms.

I had only been taking Gabapentin for a short period of time when I heard about Temgesic. So I commenced Temgesic and continued to wean off Pramipexole and Gabapentin medications.

I am now taking Temgesic sublingual 200mcg tablets.

Temgesic is micro dosages of Buprenorphine.

I place two tablets under my tongue to dissolve, up to 5 tablets can be placed under the tongue over the course of the night.

I am now at the point where I mostly only need to take the Temgesic sublingual 200mcg tablets.

Kind regards Julie

[McMomof3]

I am so sorry. I so get your pain. I’ve had rls for over 10 years. It is the worst thing I’ve ever dealt with. I have recently found cbd drops they help so much. But here in California it’s legal to have thc in them. That might be the part that helps. I take 20:1 drops. 20 cbd 1 thc. It’s been my miracle. Not sure where you are. But. For me. It’s been a God send. Take care. 🥰

[Hidden]

I'm sure you'll get lots of suggestions as to what might help your RLS.

However, the main thing for you would be to wean off pramipexole.

Of all the drugs that can be prescribed for RLS, pramipexole is possibly the worst.

If the doctor who prescribed you this drug didn't make you aware of the side effects and complications of this drug they have acted unethically and possibly illegally, (law of informed consent).

This drug is no longer recommended as a first line treatment for RLS.

[Madlegs1]

What happened 4 years ago to set off the RLS?

Something triggered it.

Can you cast your mind back to that time?

Did you start on a new medication- antihistamines or antidepressant? Or even a new diet? Or perhaps a major operation?

Otherwise, the advice given by others here still applies.

Good luck.

[Webbkaz]

Hi lolabear1 I know exactly where you are coming from, I am taking ropinorol it is great snd really helps me however like you if I miss one or have tried to come off it the sensations are far far worse, as I understand it, we could have a lack of dopemene and this drug helps, not sure that it would work for everyone, good luck