Just wanted to post an update following all of the helpful comments:
Contacted pain clinic about referral to neurology- that has been actioned but will take time.
GP has issued blood tests to check ferritin - last reading was 117 in March.
I have increased Pregabalin to 100mg with iron supplement at night but I’m afraid it’s still not quite working. Get between 2-3 hours before legs start and then I’m up and down all night. Interestingly, I know experience RLS in both legs not just one.
Try 30mg codeine if it’s really bad but that has also been minor in improving symptoms. Back to bags under eyes, exhaustion and fearing bedtime.
I’m heeding all of usual advice around caffeine, other meds, food and alcohol and feel responsible for this setback as Pregabalin was working for me until I tried to taper down - perhaps too quickly
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Hopefully, as you increase by 25mg every other night, it will start to work again.If not, look at the comments to your previous post about alternatives.
Gabapentin is a no go for GP and they won’t prescribe opiods. Do you think this is a direct result of taking Pregabalin too low? I’m learning about this condition as I go along. Just when you think you’ve got a handle on it, it surprises you!! Thanks as always
The average effective dose of pregabalin for RLS is 150-200mg.So, yes you are on a very low dose.
If your GP and sleep clinic refuse to consider a trial of gabapentin or an opioid, I suggest you ask GP now for a referral to a neurologist who is familiar with prescribing opioids for RLS. The wait is 13 months on NHS due to the shortage of neurologists in the UK.
If you can afford to pay the £350 private fee, it might be well worth it.
There are a few good neurologists now, who are becoming aware of iron infusions and long half life opioids. Where are you? We can suggest a neurologist near you.
I have got a referral in the pipeline via the NHS and probably would not be able to afford the private fee any time soon.
Is codeine an opioid? I have to admit that even taking 30mg makes me feel unbelievably groggy the next day. I tend to take it when I’m walking around the house desperate to sleep which perhaps isn’t the best way to do it.
Thank you I will ensure I am taking the right dosage for effectivnesss
Codeine is an opioid, but the lowest in the effectiveness rating.Pregabalin usually makes people groggy, not codeine, but we all react differently.
You may be very sensitive to opioids.
The opioids used for RLS are codeine, tramadol, oxycodone, morphine, methadone and Buprenorphine. The last two, methadone and Buprenorphine, have long half lives of 25 hours so work very well for RLS and do not cause mini opioid withdrawals like the short half life opioids.
The time it takes for HALF the active ingredient to leave your system.I'm not surprised at their reaction as they're not educated or up to date on the use of low dose opioids for RLS.
Dr Winkelman set up the opioid register to show RLS patients do NOT become addicted or develop tolerance to opioids and we stay on the same low dose for decades. Pain control use of opioids does lead to tolerance.
Show them the Opioid register and Dr Berkowski's study on Buprenorphine.
One day, we will get through to them. Education, education, education.
I think I could probably look towards this at the end of the year. I’m hoping I can get back on track with Pregabalin but if I can’t, this is the next step
Sue, I am Derby/Notts area and getting to the stage I’m considering a private neurologist - would like to have your recommendations for this area. Thanks.
I agree with Zenwarrior73's recommendation to CareerSquirrel. It is close to you. Sounds like you need to bring with you supporting material like the Mayo Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... and he will listen. (another person used him and said he knew nothing bout RLS)
Yes, I have taken a low dose Baclofen for quite a few years and although it is not a stand alone drug for RLS, it does help and if I miss a dose, my RLS is much worse.
Career squirrel I’ve been seeing Professor Evangelou privately at The Park hospital Nottm I think his initial fee is £250 he is very open to discussions about meds and has recently dealt with me with both RLS and all over muscular twitching so he might be an option given I’ve been through his door recently armed with Sue and Joolsg’s advice so he’s no stranger to restless legs
You do need to be firm with him as he’s not an expert on it by his own admission but he is willing to listen and has a nice manner
Good morning Sue, is there anyone you could recommend in Leicestershire privately please. I see a Neurologist for Epilepsy but the majority have no understanding of RLS. The main failing I'm experiencing these days is that Doctors treat any problem in isolation. There isn't a holistic approach.
Salford Royal (based out of Cheadle - Ced60 paid privately saw Dr Christopher Murphy - Consultant Neurologist who suggested an infusion and well up on RLS. Runs a Sleep Clinic. He is excellent but not NHS I believe. Recommended by CED60 in April 2023,and by phantom388 in March 2023 and HipHop1972 saw him 5/22/24 and was very pleased (healthunlocked.com/rlsuk/po... This would be my first choice if you an afford it.
Sheffield Adult Neurological Sleep Service located in Sheffield - specializes in RLS is NHS but appointments a year out.
Dr Johnathan Partridge, a neurologist at Stoke is informed about RLS and willing to listen and learn per HilsK. You can message him about his experience.
Manchester - Renaul has doctor who prescribed buprenorphine - you can message him
Professor Evangelou at the Park hospital in Nottingham - neurologist used by Zenawarrior73. I showed Sue's advice and his words were that's very solid advice let's get you started on Pregabalin. Another person said he knows nothing about RLS. But obviously he is willing to learn. I would take along the Mayo Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment
So sorry- this disease is torture. Forty years of RLS here- Taking 1200 Gabapentin starting with 600mg at 5 and then 600 mg at 730. Winkelman is my doctor- he recommended i take iron every other day. I was taking it daily and he explained it somehow works better every other. I added a multivitamin every day. Been pretty good. If you haven’t stopped alcohol - you should. one drink and all my meds stop working. good luck.
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RLS in legs and arms
Rls in family/iron?
What can RLS sufferers do when they are no longer capable of walking at night?
Last night was 8th consecutive night without ropinerole… (also asking a question in my post)
Pain in legs at night and Pregabalin
