I have severe restless legs every night . Have developed Augmentation from being prescribed Ropinerole, as so many have on this Forum. Have been off Ropinerole for 2x weeks now after a slow distressing withdrawal. I also reacted badly previously to Gabapentin , thus am reluctant to start Pregabalin. My GP is aware of all this . He said the only opioid he was prepared to prescribe was codiene , which is not working. Therefore as suggested by RLS uk he has referred me to a neurologist, which could take a long time . In the meantime I need to survive this living hell( only getting hour an hour sleep a night mostly) .
my question is this does anyone have experience of using Low dose Naltrexone? I am able to access this privately here in the uk for a nominal price . On there website they site RLS amongst many other conditions. Your wise and experienced input would be very much appreciated.🙏😊
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Chouchin
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It's worth trying until you get a proper, long half life opioid.Many say it has stopped their RLS.
A former member, flowergirl, used 4.5 - 5mg at night and it worked brilliantly.
You can buy it from private clinics relatively cheaply.
Also, it takes at least one month, usually two or three for the withdrawal from Ropinirole to settle.
Your GP is incorrect though.
He is allowed to prescribe a low dose opioid. Targinact is licensed for RLS.
But many GPs are unaware of this. He can also prescribe tramadol, methadone or Buprenorphine 'off licence' as long as his local prescribing rules allow.
He did not use RLS-UK site. He is referring to outdated NICE guidance ( at least 5 years out of date) which mentions codeine for 'pain associated with RLS'.
You have done brilliantly to get off Ropinirole.
Definitely try LDN. I always wanted to try it, but I would have to get off opioids first.
And ensure your serum ferritin is above 200ųg.That can really help the majority of patients.
I have also started taking iron ( spatone ) before bed with guidence from foram as they did take ferritin levels . They said they are normal , but as someone said they dip with people with RLS , so thought worth a try 😊👍
Normal for others is not normal for RLS. Ask for the actual figures. Serum iron should be above 60ųg and Serum ferritin ideally above 200ųg.Take the iron supplements every other day on an empty stomach. You can buy ferrous bisglycinate at pharmacies or health shops. Take 2 x 65mg every other day. Your GP will not prescribe LDN, that is only available privately. It may be worth trying it now, before you fight the GP to get him to prescribe a low dose opioid. Once you start opioids, you can't take LDN.
Welcome to the forum. You will find lots of help, support and understanding here.
Ask what your ferritin was and report it back here. Also your transferrin percentage (TSAT). As my answer following may be different.
Spatone only has 5 mg of elemental iron so it won't help much at all. You need 65 mg of elemental iron. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron,or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Follow Joolsg's advice on opioids and inform your doctor of it.
If you can't get a strong opioid, Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on 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...
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, C, 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.
I have a wonderful neurologist here in Vancouver and while it took me months to see him. He understands RLS really well since he too suffers from it.
My family doctor prescribed pramipexole which worked for a few years and then I started augmenting.
the neurologist got me on pregabalin (150 mg) and one tramadol per day. It's done wonders and while I still occasionally suffer from RLS (long flights, movie theatres) it has greatly improved my quality of life. I sleep well and suffered no side effects from either pill.
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