Occupational health

[Louless9]

F 58 years old UK

As per previous posts I have RLS at least 14 years every day. Am currently on Ropinirol and Gabapentin. I'm experiencing refractory RLS.

I have been sleep deprived for years, 4 hours sleep or less means I don't dream, now I'm getting 5 hours I do dream and wake up exhausted!

I have brain fog, unsteady feeling, strange feelings in my chest, a heavy feeling in my body and feel extremely emotional. I am also gaining weight as all I want to do is eat. (I feel eating will make me feel better, especially chocolate).

Has anyone else had experience with Occupational health? Did it help with work or even your GP?

This condition is having a major effect on my life and my work. :,-(

[SueJohnson]

I would suggest you come off gabapentin as some of the side effects may be a result of it and it won't help you RLS until you are off ropinirole anyway. Reduce by 100 to 200 mg every two weeks to avoid withdrawal effects.

If you find that does eliminate some of what you are experiencing, then when you are 3 weeks from taking your last ropinirole dose, take 75 mg pregabalin and after you are off ropinirole for several weeks add 25 mg every couple of days until your RLS is controlled. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.

[Joolsg]

You're wasting your time with Occupational health.If your GP knows zero, Occupational health will know even less.

You need to follow advice previously given to get off Ropinirole.

Until you start reducing, you'll keep suffering.

Change your GP surgery if the existing GP refuses to follow NHS & NICE guidelines to arrange full iron panel blood tests.

[ProudGreatNana]

Sue Johnson is your best go-to. I am on 6 mg of Ropinrole a day, starting at 2 o'clock in the afternoon. I have had so many bad nights that I have fallen asleep walking the floors and have fallen more than once. Sometimes, as you said, it is practically unbearable since I have osteoarthritis in my back, knees and hips. Rhumetoid arthritis in the hip and knees. I have so many health issues. I won't go into here. I have been taking my vitamins at night and also taking tumeric which seems to help the joints and also the restless legs. I went back to taking melatonin at nite. I only take 1.5 mg but it takes the edge off. I went to see the neurologist last fall for the restless legs. He was a real joke. Never even checked my neuropathy or my balance. He was a resident doctor. So much for that one! I also had a infusion for the arthritis last fall. Believe it was Reclast. I feel it made the RLS worse. Two nites in a row I have had good sleep. Oh, forgot to mention I am using electrodes for the neuropathy and I contribute using them the last few nites has helped with calming the RLS.

[PWMoo]

I got off Gabapentin several years ago after my doctor had reduced the dosage (originally for migraines). At the highest dosage, when I was working on my teaching credential, it wreaked havoc with my concentration. I also read that it inhibits formation of new synapses. I've been on Ropinirole less than two years at a low dosage. I can tell you that opioid painkillers, particularly, make RLS and PLMD much worse. It was most acute in the hospital with a broken leg that was spasming uncontrollably with PLMD even while awake.

[SueJohnson in reply to PWMoo]

I asked you this last year but you never answered. Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done.

How much gabapentin were you on?

[Levensong]

I feel for you Louless; it's torture to deal with RLS. I've had it off and on over many years. Baclofen worked for me for a long time; only had to use it occasionally and no side effects. It seemed to stop working reliably, so I was prescribed ropinirole. Big mistake! It worked every night for a year (but felt like a drugged sleep) and then breakthrough began at 4 a.m and during the day. Finally got off ropinirole with terrible withdrawal RSL. Now I alternate baclofen, mj cheeba chews, and just getting up every night to walk around and eat in the kitchen and gain weight. Good luck to you.