I`m 75, retired, had RLS for years, just lived with it in the past. Its now come back with a vengeance in the last six months. I think its worth mentioning the following. During December last year I fell seriously ill, taken to intensive critical care, with aggressive Pneumonia, Sepsis, even Covid for a while, a very scary time. Spent two months in the main hospital then another month in rehab where I learned how to walk again. All that time flat on my back immobile in bed I did not get RLS ???
I`m now fully recovered from all that but the RLS is now driving me mad. My GP put me on Pramipexole, it made it worse, and produced unpleasant side affects. Changed to Ropinirole, much better, I`m still increasing the dosage, so it looks promising. I `m also waiting for a blood test result as my GP thinks there may a link with Iron deficiency. I bought a Therapulse machine two weeks ago. It was supposed to work wonders, but not for me. I will persevere with it and get back with a report later.
Normally my RLS starts around early evenings when I`m trying to relax and watch TV. I cant keep still, its like my whole nervous system is tingling. It ruins my evening. I have to get up and do something, finally going to bed 10 or so. The Ropinirole, taken around 8pm, certainly helps me get to sleep now, in the past I never did. I get up at night to use the toilet regularly, but that's due to a typical old mans prostate. I wake up regularly around 5am, the RLS is back, toss and turn, get up, move about, try to get back to sleep. I now get up before 7.30. Ounce up the RLS does not appear all day.
A poster on this forum mentioned a possible link with RLS and cervical spinal stenosis. This interests me as I`ve always had lower back pain. ( A legacy of working on cars for 50 years ). I can remember my physio talking about the soft tissue in the spine, that sort of thing. I will talk with my GP on this one.
Sorry for the long post. Looking forward to any comments.
Written by
curryholic
To view profiles and participate in discussions please or .
Welcome to the forum. You will find lots of help, support and understanding here.
You really don't want to be on ropinirole. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.Https://mayoclinicproceedings.org/a...
Since you haven't been on it long, I would advise you to get off it. Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
To come off ropinirole, reduce by .25 mg tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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.
Since you haven't been on it long, you may be able to reduce faster.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). Have you had your ferritin checked? If so what was it?
On your blood test, ask for your ferritin and TSAT numbers. and post them back here. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. I hope you stopped taking any iron supplements 48 hours before the test, didn't eat a heavy meat meal the night before, fasted after midnight and had your test in the morning before 9 am if possible. Otherwise your ferritin might show as higher than it is.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender
Your profile doesn't say where you are, but in some areas you might have difficulty in convincing your doctor to prescribe gabapentin, pregabalin (or an opioid) instead of ropinirole.
If you have a problem and you are in the UK you might read and pass on the sections on augmentation and medical treatments from RLS-UK - a UK doctor *may* be more convinced by a UK source:
I find it so upsetting that UK GPs are still so far behind in RLS knowledge and research.Sadly, they're taught zero and just look up drugs to prescribe.
No medications should be prescribed until serum ferritin is raised above 100, preferably 200. The majority of RLS cases can be resolved this way.
What medications were you on while in hospital? Withdrawal from many meds can trigger a worsening of RLS.
Many meds trigger/worsen RLS, including anti depressants, sedating anti histamines, statins, beta blockers & PPI meds.
Damage to the spine & spinal cord are known causes of RLS.
So, follow SueJohnson advice, get off Ropinirole as it WILL cause drug-induced worsening of RLS, known as Augmentation.
Get your blood results and take the supplements or ask for an iv iron infusion ( you can pay privately).
Better medications are pregabalin, gabapentin or long half life opioids like Buprenorphine or methadone.
Just another one to put in the pot of things that might help. Google "tai chi tor yu". This is a foundation exercise of a Tai Chi form and really helps me to gently exercise the legs, body and relax the mind if troubled by RLS in the night. I get out of bed and do a few minutes by the side of the bed and find I am ready to try sleeping again.
Ah, the counterintuitive dilemma of DAs - perfectly controls RLS - 'till it doesn't, and makes RLS so, so much worse. To safely enjoy your "golden years" ditch that med (slowly, slowly) - great advice from Sue and Joolsg above. Investigate the iron connection and other less damaging drugs and supplements.
Nerve damage (neuropathy) does have links with RLS although it's a little vague i.e. if you have one, you are more likely to have the other but there's no clear understanding of why as far as I know. Pregabalin is often prescribed for neuropathy as well as being the most suitable treatment for RLS after iron therapy (if you are low on iron) so it can help with both things. I have what the NHS termed nerve sensitivity which is basically altered and heightened lower leg sensations after a bout of sciatica and issues with low/prolapsed discs and my RLS got worse during that phase. I also find if I do a lot of exercise and make my legs sore and aggravate the nerves that way it also make the RLS worse.
I have taken pregabalinin the recent past but it didn't seem to help RLS althouhd it did dial down the nerve sensations but I decided to come off it because I didn't like the slightly foggy brain feeling it can cause. Having said that if it gave me my sleep back it would be worth trying again
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Ropinirole and Pregablin
Changing my Medication
Good news neurologist appointment arrived
Ropinirole and pregablin
