A night in the life of RLS

[careerSquirrel]

Hi All

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

[Joolsg]

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.

[careerSquirrel in reply to Joolsg]

Thank you.

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

[Joolsg in reply to careerSquirrel]

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.

[careerSquirrel in reply to Joolsg]

Thank you Joolsg I am in Derby.

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

[Joolsg in reply to careerSquirrel]

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.

[careerSquirrel in reply to Joolsg]

Thank you.

I mentioned the last two to the consultant at the pain clinic at Derby Royal Hospital and it was like I was asking for an illegal drug.

Genuinely taken aback that I’d even asked him!!

I will try again when I see the neurologist. When you say long half lives and short half lives, could you explain what that means?

[Joolsg in reply to careerSquirrel]

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.

massgeneral.org/rls-registry

researchgate.net/publicatio...

[Joolsg in reply to Joolsg]

Correction The time it takes for HALF the active ingredient to leave your system.

[SueJohnson in reply to careerSquirrel]

If you ever get to the point that you are willing to pay privately there are several I can recommend within about 45 miles.

[careerSquirrel in reply to SueJohnson]

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

[MaxxRLS in reply to SueJohnson]

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.

[SueJohnson in reply to MaxxRLS]

See my reply below to Onion01

[SueJohnson in reply to MaxxRLS]

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)

See my reply to Onion01 below for others.

[careerSquirrel in reply to SueJohnson]

Hi Sue

Have you heard of a drug called Baclofen? Consultant is suggesting I take this in conjunction with Pregabalin to “wean myself off”.

I wish you could read this letter!! No to opioids! No to Gabapentin!! I will be bringing the evidence to the GP

[SueJohnson in reply to careerSquirrel]

It is a muscle relaxer used for muscle spasms and back pain

It might help PLMD but does not help RLS.

You need a new doctor even if you can't afford it. See my reply below to Onion01.

[violetta254 in reply to SueJohnson]

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.

[careerSquirrel in reply to violetta254]

Thank you. Can I ask if you take this with any other medication for RLS?

[violetta254 in reply to careerSquirrel]

10mg of methadone

[QuickTan in reply to careerSquirrel]

Yea to Baclofen! Its a muscle relaxer you take at bedtime.

[MaxxRLS in reply to SueJohnson]

Thanks Sue

[Zenawarrior73 in reply to careerSquirrel]

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

[SueJohnson]

In fact there is one at Nottingham which is very close to you.

[Onion01 in reply to SueJohnson]

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.

Thanking you as always for any information

[SueJohnson in reply to Onion01]

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

Https://mayoclinicproceedings.org/a...

[calschwartz27]

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.