Long term rls sufferer

[Sophiebella-]

Hi I,m 56 and have had rls since around 9 year's of age. It's got progressively worse in the last 15 years to the point of feeling like I was going out of my mind with pain from the jerking of my arms and legs. I started on pramiprazole 11 year's ago after a gp eventually listened to me. Now I have to take more and more pramiprazole along with tramadol. I now have whole body symptoms and find I'm often am awake until 4-5am. I am exhausted and struggle with daily fatigue. I have a constant vibration in my legs which gets progressively worse as the evening progresses. Does anyone know of a good specialist in the southeast of the uk that understands how awful rls is?

[Kaarina Administrator]

Unfortunately it sounds like you are suffering from Augmentation. This crops up on the forum at least once every day.

Pippins2 wrote this posting around a year ago which may be of help to you:

healthunlocked.com/rlsuk/po...

You may also be interested is reading this link on Augmentation:

sleepreviewmag.com/2015/02/...

[Madlegs1 in reply to Kaarina]

Print all that out and bring to your doctor. They are woefully ignorant about rls and utterly ignorant about augmentation.

You have a rough road ahead of you , so listen very carefully to all the advice from this site. You are not the first to have this happen to you.

You will get better eventually.

All the best.

[Joolsg]

Ditto everything Kaarina and Madlegs say.

Prof Ray Choudhuri at King's Hospital London and Guy Leschziner at Guy's Hospital London are RLS specialists but you'll wait up to a year to see them on the NHS. Best thing to do is read all the posts on this site about augmentation and withdrawal from dopamine agonists. Reduce the Pramiprazole slowly - it's hard and you'll need a strong painkiller like Tramadol to take during withdrawal. Pregabalin is a good alternative once off Pramiprazole.

guysandstthomas.nhs.uk/our-...

[martino]

In addition to what Joolsg has posted you could try to get a referral to the Institute of Neurology in Queens Square London. It is part of UCL. I have had excellent treatment in Prof K Bhatia’s clinics.

[jk3842]

Suggest that you go to the Southern California RLS support website. There is a lot of good information there. Don't have the URL but it easy to find. There is a section that discusses alternative meds.

One talks about using marjuana and how effective it is. I understand that it really helps.

Good luck

[Madlegs1 in reply to jk3842]

rlshelp.org

[DisneS]

Yes. Sure sounds like augmentation! As Madlegs said you aren’t the first to have this happen to you. I’ve had some good help from this site to realize I was suffering from augmentation after being on dopamine drugs for a long time. I have been gradually cutting down on them and have now removed them completely but have still got a long way to go and the RLS is really severe at the moment. However I’ve been informed that eventually I will get an improvement and I will get back to the way I was before I started the drug. Hope you will get some success too!,

[angelsreign]

Hi Sophiebella, I can empathise. I am 69 and have had RLS for as long as I can remember - as did my Father and like you, were told there is no such condition.

I live in Grays, Essex and found a referral to the pain clinic quite helpful as is the sleep clinic, both at Basildon Hospital.

[Jphickory]

54 year old male. Long term suffer of RLS. Many sleepless nights as result. My father and uncle also suffered from it. I’’ve occasionally suffered from full body RLS also ..... only med I hve ever took to combat the RLS is Valium. A 4oz glass of water diluted Apple cider vinegar would sometimes bring occasional relief.

Two months ago I started taking a powdered form of magnesium citrate daily. I mix it with water. As long as I take it each day my RLS is ENTIREY gone! I’m still giddy with disbelief and joy. There have been about 4 nights since taking that I have had RLS at bedtime. EACH of those times I realized I had forgotten to take the magnesium that day. I then got up to drink the solution and within 30 minutes the RLS vanished.

I’m not technically “cured” of RLS since I must take it daily. I have spoken with my dr about it and he was very pleased and believes the magnesium has other health benefits. He said I should continue taking it indefinitely. (Not that I needed to be told that)

I realize this may not work for everyone. But I feel an obligation to keep putting my story out there to all RLS sufferers in case you may realize the same benefit as I have. This has been life changing for me. I always hesitated making early appointments because I never could count on a good nights sleep.

If something changes and it quits working I will post that in the future. But this is the first time in 40 or so years i go to bed each night and no longer even worry about wasting the first 3 to 4 hours thrashing around in bed moving my left leg (for some reason my left leg was the probem leg 95% of the time)

Hope this helps someone. Thanks

[angelsreign in reply to Jphickory]

That's great - epsom salts foot bath last thing at night helps too. It contains magnesium which is absorbed through the skin.

[Parminter in reply to Jphickory]

How much magnesium are you taking?

[Jphickory in reply to Parminter]

A level teaspoon mixed with about 4oz of water. I stir and wait for it to quit fizzing (about 30 seconds) before drinking the solution. I do this once each evening immediately prior to going to bed.

[gmelt]

I belong to the RLS Foundation. Their site may be of some help to you and others. Here is the link. rls.org/