RLS

I’ve had rls all my life. it got to a point that I had to ask my dr to prescribe pramipexol a few years ago, it worked well at first then slowly I had to increase the dose, now I have augmentation, I started a few days ago taking magnesium-citrate along with my medication and felt rotten with bad tummy upset, so I’m stopping the magnesium. I have an appointment with my gp but feel he has no real understanding of my condition and I’m very nervous about what to do next, are there specialist that can help on the nhs ?......stressing out is an understatement

[Madlegs1]

See Kaarinas answer to Fred Brown 3 posts ago.

[Kaarina Administrator]

Hi Pammy, this was my reply to Fred Brown that Madlegs is referring to:

In most cases, the cause of RLS is unknown (called primary RLS). However, RLS has a genetic component and can be found in families where the onset of symptoms is before age 40.

There is medical help that doctors can give so it might be a good idea to change your doctor although many do not know much about RLS but some are willing to learn from their patients. Have you visited the RLS-UK website? rls-uk.org There is a section for medical professionals rls-uk.org/professional-res... that you doctor may like to look through.

If you have not had your ferritin levels checked this may be a good idea as RLS is frequently associated with iron deficiency.

[JeaniCrain]

I took pramapexol for approximately 2.5 years and in January 2017 I started having terrible feelings, go to sleep at red lights, almost wrecked while driving everlasting times! Quit the pramapexol and it was 2 months for me to have it out of my body and begin to get better! Pharmacist could not believe I quit it cold turkey but I had no clue, except knowing I had to quit that drug!!! I have always had restless legs all my life but I kid you not, I have NOT had a restless legs night since I stopped the drug! Good luck and God bless you!

[involuntarydancer in reply to JeaniCrain]

Respect to you Jeanicrain for quitting pramipexole like that. And so happy you had such an incredibly good outcome. I hope your relief lasts a long time

[Hidden]

I’m really nervous about quitting parami’....in addition I suffer from sleep paralysis, and fear this will worsen as stress brings it on. Does anyone else suffer from this?

[Hidden]

Had my Dr app today, having blood tests for, ferritin, vitamin D, magnesium, potassium and thyroid, funny thing is I also mentioned the sleep paralysis and low ferritin levels are also associated,

Also read something but can’t remember where that sleep paralysis may be a side affect from continued streptococcal virus, ( which I suffered from a lot as a child and even into adult hood) hmmmm interesting thought perhaps worth reading more if I can find it 😊

[involuntarydancer in reply to Hidden]

Good luck with all the tests and also with your research. Sleep paralysis sounds awful. I haven’t seen many who say they suffer from it. Quitting pramipexole is hard - I won’t lie - but everyone who gets through it is really relieved to be off pranipexole and many find their symptoms reduce a lot.

[Hidden in reply to involuntarydancer]

Thanks involuntarydancer 😀 feeling confidant now I’ve taken a big step forward apart from the fact my dr has never head that rls can occur during daytime and in the arms or chest, but for now I’ll wait and see what the tests come back as 👍🏻

[Hidden in reply to Hidden]

Had the results from the tests, all normal, now what? Should I go back to the Dr? What should I say now? I know He’s going to say to carry on as normal taking the pramipexol. I take four 0.88 per day he said the max is six. Will he up my dose?

[Kaarina Administrator in reply to Hidden]

Do you have a copy of the results from the tests you had? If not, you can request a copy, probably by asking the surgery receptionist to print it off for you.

[Hidden in reply to Kaarina]

No I don’t have a copy but I will request one today, it will be interesting to see, thank you Kaarina 👍🏻

[involuntarydancer]

They always do this: tell you your serum ferritin is ‘normal’. Why are they so resistant to giving the actual figure? Normal can be as low as 20. That is FAR too low for someone with rls. We need to be over 100 according to experts. I would phone the GP and request the actual figure.

The max dose of pramupexole recommended for rls is 0.25. You are already over that level so obviously it is medically inadvisable to increase the dose again. Even if you don’t reduce the pranipexole I would have thought you should use a supplementary drug such as pregabalin or tramadol to deal with breakthrough symptoms. I think it would be better ultimately to come off pramipexole now with the help of tramadol. You will get better relief from the other drugs down the line.

Maybe you should order a copy of the book by Drs Lee, Henning, Allen and Buchfuhrer - I can’t remember the precise name Clinical Management of Rls or something like that. It is available on Amazon. It is a proper medical text book and your GP should respect it though I think it still has the old recommended upper limit for pramipexole which was higher.