I've had RLS for almost 65 years, it's far, far worse now than at the beginning. I also have its partner fibromyalgia and linked tendinitis plus arthritis in my spine and genetic Bertolotti's (extra bone growth from the lower spine). I'm on rotigotine patches (I think I'm augmenting), Tramadol and pregabalin. Pretty regularly I have four to five days of dreadful pain and RLS where I can lose many hours of sleep, all seemingly from the Bertolotti's area, causing me complete exhaustion from which it takes a couple of days for me to recover. This is followed by a few days of feeling blissfully almost normal, although I still can't walk unaided. In January 2023 I had radio frequency ablation in my facet joints and within a week my problems started, until then I had been able to walk without my crutch. This was followed by months of sciatica which indicated to me that a nerve had been damaged during the RFA. Since then I was progressed to the pain clinic which was of no use to me but I've been referred to another pain consultant for an appointment in January. I don't think it will help. My query is ....... does anyone else have the sort of flares I get?
Flares: I've had RLS for almost 6... - Restless Legs Syn...
Flares
I'm so sorry you are having these problems! I can't help you with the flares but when you are ready to come off the Neupro I can help.
Many studies report RLS flares are linked to operations on the spine and joints.You definitely need a referral to a specialist. The pain clinic MIGHT be familiar with RLS, but it depends on the doctors' knowledge & training.
As you have severe pain alongside probable augmentation on the Neupro Patch, it would be advisable to see one of the handful of UK doctors who are aware of how to treat RLS properly. Namely Dr Jose Thomas if you live in Wales, Professor Guy Leschziner at Guy's Hospital, Professor Matthew Walker at UCL London, Dr Robin Fackrell in Bath or Dr Chris Murphy in Salford. There's also Dr Giovanni Cocco at Portsmouth, but he travels to Dubai a lot so there may be a long wait.
In the meantime, print off all the useful information from the RLS-UK website on withdrawal from Neupro and the Mayo Clinic Algorithm and AASM new Guidelines and Dr Berkowski's study on Buprenorphine so you can ask the Pain Clinic to treat you using the latest research.
mayoclinicproceedings.org/a...
jcsm.aasm.org/doi/10.5664/j...
neurologyadvisor.com/report...
Thank you so much!!
Well since Joolsg gave you a reference for coming off Neupro, I will chip in too. I was going to wait until you got your flares taken care of but here it is:
You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Thank you. I’m going to print your replies but will have to go back to my GP for help for a substitute. I’m on 3mg patches of Neupro so it will be tough going.
It will but you can do it! If you can get a low dose opioid that will help. The usual replacement medicine is gabapentin or pregabalin but you mentioned you don't like the way they make you feel which is a shame as they can help with fibromyalgia. So you might need to continue with an opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.
I'm on pregabalin! No way my GP will prescribe another opioid.
I was thinking of replacing the tramadol with a stronger opioid. How much tramadol are you on?
How much pregabalin are you taking? Have the side effects you mentioned previously settled down?
I’m on 2 x 50mg four times a day, same amount of Tramadol for at least 15 years! Pregabalin is 2 x 50 twice a day. As of today I’m feeling quite unwell and run down from lack of sleep and will be contacting my GP tomorrow. They’re just all so reluctant to prescribe anything stronger in case we get hooked - I don’t care if I get hooked, I just want a life!
You won't get hooked if by that they mean become addicted, Look at all the articles Joolsg provides and print off the parts that show buprenorphine is effective and used for RLS and won't get you addicted.
Also click on "Opioids for RLS- some useful information" on the side panel on this page.
400 mg of tramadol is a lot and I am surprised it is not helping your pain.
The pregabalin may control your RLS once you are off the Neupro and your symptoms have settled with the help of the tramadol or buprenorphine if you can get it.
I really appreciate the time you’ve given to help me. I’m going to start tomorrow by simply requesting Buprenorphine and then I’ll put my foot down if they say no! I’ll let you know how it goes.
Good luck! 🤞
Wow! 65 years is a long time to have RLS. Poor you! When you mention tendinitis, where do you get this? I’m curious because I have developed it in both Achilles over the past 4 years. It has caused me no end of other issues and perhaps added to my RLS? Your situation sounds much worse so I sincerely hope you can get some relief soon. It’s a mine field! The lovely support you get from this forum is good Sue and Jools are very knowledgable. I’ve learned so much from their posts. 😌
Thank you! My tendinitis has appeared in several places over the years including the back of my ribs. At the moment it's in both elbows and that makes life quite difficult, it's amazing how often we rely on our elbows for pushing up etc.
All your problems indicate inflammtion which the radio frequency ablation could have made worse. Neuro inflammation can cause RLS, fibromyalgia and sciatica and it triggers abnormal bone growth in skeletal joints. Inflammation can be caused by infections like yeast infections etc. but most commonly it's caused by foods in the diet. You can google 'foods that cause inflammation' so you can avoid them. Some foods and vitamins fight inflammation like green tea, blueberries, vitamin D and tocotrieniol vitamin E. I have eliminated my RLS without medication by lowering my inflammation from foods and adding in anti inflammatory foods and optimising vitamin levels. Most of our vitamin D is produced in skin exposed to UV sunlight so people who don't spend much time outdoors can get severely defficient especially in Winter, I supplement mine with 5,000 IU year round and double that dose in winter.
Thank you. I do take vitamin D capsules - I was advised to do that by a dermatologist as I've had many basal cell carcinomas. There's a lot I should do with my diet!
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