After some months of endless nights of 2 hours sleep, (after a lifetime of RLS I'm now 74) on an increasing dose of Pregabalin to 450mgs, then back to 300mgs, plus oral iron to raise my ferritin (27), I finally phoned my GP and told him the sorry tale including how I fell asleep standing up one night and came crashing down hitting the coffee table and spraining my ankle. Anyway, no sympathetic sounds were forthcoming and he is tailing me off Pregabalin and putting me on Duloxetine which is a combined anti-depressant and painkiller (I have osteoarthritis and a back which has had several rounds of surgery so grateful for that) but I am not depressed, just angry!
I asked about an iron infusion and was told this couldn't be arranged unless a trial of oral iron had been tried first. I told him this way would take forever to get my ferritin up, but he was adamant. He was also quite firm that NHS policy was against prescribing opioids, (Buprenorphine or Oxycodone) for obvious reasons. And we have never discussed my episode of self-harm beyond asking the CPN to call me which she did, bless her, but had no idea what I was talking about and gave me some breathing techniques..
I have been with him for years and feel he just isn't treating me like a patient he knows well. He is aware that I was on Ropinirole for some time, and only by information gained through this forum was I able to take myself off it by reducing the dose very gradually. He wasn't interested in my explanation of augmentation, withdrawal etc. Why are GPs not only ill-informed but so reluctant to do anything about it? I would change GPs but afraid it will be 'out of the frying pan .....' How do you go about finding anyone who is interested or cares?
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I would change doctors or ask for a referral to a neurologist. Unless you can get him to read the Mayo Clinic Updated Algorithm on RLS. Duloxetine makes RLS worse in many people and as you said you aren't depressed. I don't live in the UK but others on this forum can advise you about doctors who know more about RLS and how to get an iron infusion.
Thanks SueI've had many replies from UK based contributors with some very positive suggestions which I will be researching and following up. Lack of sleep, and the sheer waste of time spent with legs going like pistons when I could be doing something so much more creative and interesting, leads to utter frustration and despair. Wonder if I could be hitched up to an energy-creating power source to hep heat my house? Now there's food for thought!
Another one to try is dipyridamole. It has helped many people on another forum I am on and a few on this forum and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...movementdisorders.onlinelib...
That's appalling. Duloxetine causes / triggers RLS. Even the NHS and NICE guidelines make that clear.As pregabalin at 450mg has failed, your RLS is refractory so opioids are the next step BUT you clearly will benefit from an iron infusion.
St George's in Tooting, The Royal Cornwall in Truro will do iron infusions for RLS.
Clearly your GP won't learn about RLS so you will have to see a neurologist, like Prof. Walker at UCL Queen Square in London. He will arrange iron infusions and if that doesn't resolve your RLS, he will prescribe low dose opioids.
Targinact IS licensed for RLS in the UK so your GP should be made aware of this.
Dear JoolsgThanks for your response and I've taken on board your suggestions. I live in Cornwall and a trip to London would be a 2 day break (or a few days) but worth it considering the ongoing misery of life at present. I viewed a video on the RLS-UK website by Julie, a lawyer, who was suicidal until she was prescribed Buprenorphine which was a miracle for her - my GP won't hear of it! I'm about to look into the NHS and NICE position regarding Duloxetine and will copy off and send to my GP (and rheumatologist) probably with zero response as usual. It's like screaming with no sound coming out! The only people who listen are on this forum - bless them all, and thank you again for the really useful information and advice.
That was me on the video. You can speak to RLS neurologists by phone. No need to travel. PRof. Walker at UCL Queen Sq does consultation by phone and will prescribe Buprenorphine.But first get off duloxetine. All SSRI, SNRI and tricyclical anti depressants worsen RLS. It's on every RLS website and in the NHS and NICE guidelines.
When I started the Campaign to get RLS taught to GPs last year, the Royal College of GPs refused and said GPs would research the subject and treat accordingly.That is clearly nonsense as evidenced by your GP refusing an iron infusion and prescribing a medication that worsens RLS.
I suggest you write to the RCGP and state your GP knows nothing and has tried to prescribe an anti depressant which will worsen the disease.
Unless and until RLS is taught properly at medical school and during training, this will keep happening.
Dear JoolsgI have just seen the suggestion I write to RCGP - I will definitely do this because if I remain silent they will never know how many of us are desperate and at our wits' end. And I wonder how many people actually commit suicide? I have self-harmed in an attempt to divert my mind to what I see as a lesser pain than the agony of RLS. Thank you again.
Yes. Self harm and pain is preferable to Severe RLS sensations. We've all been to dark places with this foul disease.Studies show suicide rates for RLS are higher than for other neurological diseases.
Not just because it IS a more serious disease but also because the medical profession don't treat us or the disease properly.
Yes, you could be right. There are two practices and several doctors in each at my local surgery and I'll ask if any of them have an interest in, or even knowledge of, RLS before making a decision. Thanks for your input, it's much appreciated.
I have had a similar story to you. I'm coming up to 60 and hve suffered from RLS since my pre-20s. Only got treatment and knew why I couldn't sleep when I saw a doctor who also suffered from RLS!
Anyway I'm currently on 400mg of pregabalin, have been on it for coming upto a year, and still not slept for more than 4 hours, normally much less. So would be very interested in hearing your continuing story.
Thanks for the update about Targinact. I've just read up on it and will certainty be pointing it out to my doctor, who like many here seems as if he just can't be bothered even reading the Mayo algorithm that I emailed him!
I think I sent you a reply meant for BurgerKing - if so, sorry, and I have tried going up to 450 for a couple of weeks without it making the slightest difference. I've been watching the Rolling Stones series on Saturday nights and thinking it didn't seem to do them much long term harm taking all sorts of non-prescription 'medication' so why not!? They're in better shape than me ..... just joking (well, sort of)
Not sure if you're in the US or UK, prescribing differs, but I shall be attempting to do a little more research, be more of a nuisance, write letters, in spite of ongoing total sleep deprivation, and battle on but at my age, how ever many years are left to me, I often think by the time I get some relief it will be outside the crem! I want quality of life now ..... sod the rules! If I get anywhere, with any of it, I'll be sure to post on here but don't hold your breath. I'm not. Anyway, best wishes and thanks for your interest and post.
Lovely Jools wrote below "Clearly your GP won't learn about RLS so you will have to see a neurologist, like Prof. Walker at UCL Queen Square in London. He will arrange iron infusions and if that doesn't resolve your RLS, he will prescribe low dose opioids." I asked my GP for a referral to Prof Walker back in March .... I have an appointment with him for ,,,, NEXT FEBRUARY. I even e-mailed Prof Walker, but he said that was just the NHS waiting list .... So you would need to see him privately. x
Dear 67WatermanI live in Cornwall, so bit of a trek, but worth it for some decent advice and prescribing. Going privately could mean only one visit if he then passes care and ongoing prescribing to my GP but I couldn't afford endless trips up to London. The fare is around £200, then accommodation on top, plus his fees, so looking at quite a bit. I grew up in London but haven't lived there for 40 years so don't know anyone I could stay with. However, I am going to make some initial enquiries ... got to start somewhere. Next Feb will come round quicker than you think! Thanks for the info.
I found 900mg Gabapentin in one dose as soon as rls started (I got it bad aswell). That sorted it within 30-45mins. Only thing Gabapentin destroyed my short term memory.
Yes, ferritin 27. Can't be given iron infusion until I have tried oral iron. I explained this could take some time but received the usual 'computer says no' response even though my local hospital (Royal Cornwall) does give infusions. So, iron tablets and black diarrhoea it is then for the next 12 months!
Try ferrous bisglycinate every other night on empty stomach. Gentler on stomach, doesn't cause black stools. Raises levels faster than taking every day or multiple times a day.
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Advise please on Pregabalin
I hate my GP - making me feel like a drug addict
I am feeling so sick
