rls, advice.

i have had rls for many years now. my mother also had rls. she would spend the night time dancing around while doing jig-saw puzzles. she would send me all the remmadies cut from magazines, nothing worked for me.

i was a long distance truck driver and my rls fired up each evening and into the night. i tried to work on all night shifts.......going to bed at 07-30 in the morning. the result was that my rls started at the same time. . i found that each time i relaxed the rls would fire up.

the result over the years as shown that each person with rls must find there own remady.

my advice is to keep moving.

see a docter here in the uk, no chance. or if you do, they do not know what rls is all about.

regards pete.

[Allyp69]

Your RLS sounds like mine, Pete. I'm 76 and my Mum had RLS too and I remember her sitting in the evening moving her legs and being very uncomfortable...no name for it in the 50s and 60s in the UK. Noone else in the family has RLS, thankfully.I've never taken prescription meds as they just don't seem to work for people long term plus UK doctors don't like prescribing them...

Listen to music, try CBD oil, use Therapulse, don't sit all day, gentle exercise, no alcohol or caffeine late in the day, no sugary drinks, herbal sleep aids, try gentle iron(made no difference to me), don't get stressed or overtired!!

There is no cure but one day the cause of RLS will be found...

All the best 😊

[Gmc54]

yes, it's not taken seriously here in the uk. My husband has sleep apnoea, and if he doesn't comply with the treatment he is given he will have his driving licence taken away. We however, can carry on driving, while suffering sleep deprivation. I voluntarily no longer drive, but I still hold a licence.

I have tried many remedies, and some medications over the years, nothing has worked. Mt GP's will not prescribe any opioids that are known to work long term, and trying to get referred to a knowledgeable neurologist is like asking for an audience with the pope.

I once asked for Targinact, my doctors reaction was extreme, he shouted "NO WAY". it was as if I had asked for a combination of heroin and cocaine with a bit of LSD thrown in!🙄

[ChrisColumbus]

Hi Pete. Did you manage to get the full iron panel blood test that SueJohnson recommended a couple of months ago, and if so what were the results?

And did you start coming off the pramipexole and follow Sue's other advice?

It's true that most doctors and even most neurologists know next to nothing about RLS: they aren't taught about it during their training.

[Joolsg]

nbmedical.com/kiss/kiss-res... Pete,

Go back to your GP and show them this training page from the largest GP training company in the UK.

As SueJohnson advised you previously, you are experiencing drug induced worsening of RLS caused by Pramipexole. Your RLS will stay severe until you get off all dopamine agonists.

Show your GP the Mayo algorithm and the article below by a top RLS expert explaining that doctors have over prescribed these drugs and have caused great harm.

You should get bloods, raise serum ferritin and reduce Pramipexole by half a 0.088 pill every 2 weeks.

You will probably need a low dose opioid to help with the severe withdrawal symptoms but once off Pramipexole, your RLS will settle and new meds will start to work.

Pregabalin, gabapentin or a low dose opioid like oxycodone or Buprenorphine can be started about a month before you are due to take your last Pramipexole pill.

Links to articles below.

mayoclinicproceedings.org/a...

sleepreviewmag.com/sleep-tr...

nbmedical.com/kiss/kiss-res...

[Eryl]

That is just finding ways of dealing with the symptoms not dealing with the cause. Why do you think rls gets worse towards evening, because it's caused by the food you're eating during the day. I've eliminated my RLS by avoiding foods which cause systemic inflammation which is the cause of rls.

[207jlodancer in reply to Eryl]

I agree that food is VERY closely related to RLS . Eliminating foods containing oxalates has cured me. Wish this info was available 50 years ago. I'm 68. Check out the new book TOXIC SUPERFOODS by Sally Norton. Eat responsibly, my friends.

[Graham3196]

I think I messed this up I intended to reply to "Hidden" with just a copy of my reply to Petre but I think I might have highlighted the entire conversation with Petre and pasted it without realising. My reply to hidden is at the bottom. My apologies to anyone who has had to read it twice!!!