Restless legs - help!!

[Dollybird2020]

like so many on here I have far too many health issues ie, Fibro, colitis, a heart attack last year, scoliosis and cervical spinal stenosis, enough to cope with for sure but I also have severe RLS! I have been taking Roprinirole for THIRTY years at 4mg per night which is the maximum dose, however I suffer from breakthrough symptoms most nights and after a very uncomfortable night I invariably wake - again at 6am and it’s impossible to sleep. I have muscle rub and foot rubs, lavender, magnesium - you name it but I am desperate and so so miserable with it! Has anyone got any tips or advice for me before I completely lose my mind?? TIA x

[Madlegs1]

You would be better to post this on the Restless Legs site.

But I'll give you the nub of what's going on.

You are suffering from what's called Augmentation, where the medication you have been given - Ropinerol, becomes less effective in covering the RLS. Doctors give you more and more-- but it just spreads to the rest of your body and affects you at all times of the day.

Sounding familiar?

The only remedy is to stop the Ropinerol --- BUT. very slowly and by very small amounts.

This could take months and will be pure hell.

The Rop and suchlike meds have not been first line meds for RLS for many years, but most doctors are not up to date with modern practices.

You will eventually need to get Gabapentin or Pregabalin - to be started about a month before finally stopping the Rop.

You will need medical help through this.

I don't want to give you too much information at this point. But you need to post this on the RLS site to get better and more incisive advice .

For starters ,just go into the site and search for "getting off DAs". And you will get a load of information.

Looking forward to seeing you there.

You are not the only one to be mistreated by ignorant doctors, and unfortunately won't be the last.

Legal action has been taken against such treatment.

All the best.

[Dollybird2020 in reply to Madlegs1]

Thank you so much for your reply. I don’t have a very good GP and now it is getting practically impossible to get an apt! I haven’t posted on here but I always read the comments and appreciate the advice given. I will try and find the right place to ask my question. Thank you for caring x

[Madlegs1 in reply to Dollybird2020]

If you are unable to join the Restless Legs group ,do get back to me.

I think you have to go into your profile and maybe search for the site and click on "follow"

It will also help if you let us know where you are, so we may know of a knowledgeable doctor. There are a few out there-- but quite rare.

Good night!💚

[Madlegs1 in reply to Madlegs1]

Ok - you go into your Profile ( top right corner on phone)

Then look for Hub ( bottom left corner)

In the hub will be a list of your communities, and a search bar.

Type in Restless Legs and tick follow.

You can then post anything onto that site.

If you can copy and paste , that might help you to copy your initial post above.

Otherwise you have all the fun of doing it again.

They are a great bunch of people there. And very knowledgeable --- even more than the vast majority of doctors.

One of the people we are helping is in a similar situation to yours, so you won't be alone.

See you soon.💚😎

[Marylyn]

Hi check your iron , folate , active vit b12 , red cell magnesium, homocysteine , Vit D levels .2 mths ago after pacemaker for Sick sinus syndrome my legs were burning , pins & needles, fatigued,unable to sleep .Oxygen low , light headed .I asked for iron levels they were 8 range 8-30 told by Drs including cardio that I wasn’t deficient as ferritin was good due to inflammation from pacemaker & Hb were good .I supplemented with iron making the world of difference to all my symptoms.I also have been treated for B12 (weekly injections)& D deficiency I have cervical & spinal stenosis as well.I take no Pharma drugs only vitamins & minerals .View b12 awareness.org to learn more .

[Konagirl60 in reply to Marylyn]

My sister was cured of 6 years of colitis when a new doctor tested her iron levels and they were way too low. Her colitis is gone permanently.

[Kemptville]

Hi Dollybird2020

I have had a RLS for some months now following repeated surgery for a herniated lumbar disc. I was also suffering from severe muscle spasm during the night . I saw a pain specialist who prescribed Amitriptyline 10mg at night . Since then I have been able to sleep for 7 hours without any problems.

[Madlegs1 in reply to Kemptville]

That's highly unusual-- the vast majority of RLS sufferers find Amitriptyline to severely impact their suffering.

You are very fortunate.!💚

[Cactus7]

Hi. I was going to say.. Magnesium rub or spray but you're using that.Have you tried relaxation techniques. This issue is obviously causing you a great deal of stress which isn't going to help the restless legs situation.

Hope you find some relief soon. Cx

[Dollybird2020 in reply to Cactus7]

Absolutely spot on. It’s a vicious cycle isn’t it and stress does build with health conditions I am seeing a therapist tomorrow to discuss treatments that may help. I am a believer in self help and will do whatever it takes to get some relief. Thanks for caring enough to reply

[Hidden]

I noticed for RLS pregablin and gabapentin were suggested. I have nerve pain and had an overreactive nervous system due to nerve injury. Pregablin made me feel weird. Gabapentin worked but I didn't like how it made me feel if I took a high dose. I found GABA from health food store in Canada. It is original form of gabapentin but without side effects because it's natural. I can take high doses eg 750 mg without side effects!!!it's amazing works for me the same as gabapentin to calm nerves. May work for you. There are no prescription medications that do not have side effects only natural products have no side effects.

[Mu_sic]

I see your problem, and I too have RSL from the late 90"s even before the doctors could finally put a name to the condition. I have taken several medications over the years, but am now taking Clonepam 1.50mg and myrapex for RSL 1.5mg nightly. , among other medications for the different problem.

But what has helped me tremendously ( I also have peripheral neuropathy, sciatica in my lumbar -lower back, and RSL) A few weeks, non of the medication seemed to help with my sleeping, then we read about epsom salt with warm water . I soak my feet in it for about 30 mins. and have been getting instant result with sleeping. It has worked for me for the past 2-3 weeks. If you are having pain during the days, you could try it and see.

[Madlegs1 in reply to Mu_sic]

Mirapex is a dopamine agonist and not advisable for RLS any more.

It will eventually lead to augmentation.

[Dollybird2020 in reply to Mu_sic]

Thank you so much for your reply. I will definitely go get some e Epsom salts tomorrow. I too have many health concerns but RLS is the one that I dread as I get older. It really is hell on earth!!

[Minion1]

Hi there I really feel for you. It's hard to explain how bad this is to people that don't suffer but I understand. I'm also on ropinerole and I take it about 4pm to catch it before it starts around 5pm ish. I'm also lucky that I get it in my arms too. Yippee!Without the ropinerole I'm up with it in the night, when you just feel exhausted and want to relax it starts it like torture.

I would get back to the doctors. I hope you get some relief soon. Take care big hug

[Dollybird2020 in reply to Minion1]

Thank you for replying and for your understanding. I also have it in my arms and hands. When I posted on Sunday I had completely run out of my meds, even though I had ordered them in plenty of time the pharmacy always seems to be waiting for delivery of roprinirole. I have tried suggesting they keep the supplies one step ahead but with staff changes etc it remains my problem. I was in such a state after my sleepless, distressing night I attempted to contact my GP on Mon morning. What a joke!! I couldn’t get past the receptionist who suggested I “ should see the pharmacist for a minor foot problem” 🤬 I eventually managed to fill out the triage form so the doc could assess whether I was worthy of his attention! Later in the day I got a text with an apt for 15th Aug. Lucky me! After chasing all day I finally got my prescription at 5pm on Mon! Subsequently I have been in bed all day today feeling dreadful. Thank you for listening, it’s good to share with people who understand this horrible condition x

[Madlegs1 in reply to Minion1]

Please read up about augmentation in Ropinerol.

[Minion1 in reply to Madlegs1]

Thank you for your advice I will look into it

[Madlegs1]

Dollybird-- you are not getting good advice here.

Please post on the Restless Legs Site, where there are real experts on the subject.

Have you checked out Augmentation?? You really need to understand what's going on for you.

[Hidden]

Hi apart from all the things suggested here I can offer a couple of things that help me cope with breakthrough RLS - the first is Quinine, which I get by drinking 2 or 3 cans of tonic water in the evening (I find that Schweppes slimline tonic is best , might have more quinine than others!) I don't add Gin to mine but I won't judge!! If that doesn't work then I take Codeine or co-codamol but I avoid this unless necessary as I am on a variety of other meds.

Goid luck

[Nothing_but_books]

I'm not a doctor, so please take my comments as mine, and do your own research.

I was given Neurontin (Gabapentin). Taking it was the worst mistake of my life. Suffice to say I was permanently damaged in many, many ways. I know I'm not the only one.

I took the drug only a few days before it was too late to reverse the damage.