I have been struggling with RLS, first when I was around twenty years old and now as I am well into my middle age. I have been sober for 23 years, but a few years back I started taking Pramipexole. This drug has created more problems for me than it has solved. At the beginning it works really well, but after some time the RLS symptoms spread to all outlimbs, and the only way to kill it is to up the dosage. When it goes into the arms it becomes more unbearable then when only in the feet. Last year I tried to stop cold turkey and during the 2 nights without it I went to one of the darkest places I have been mentally since I became sober. I just didn't want to live anymore. The agony was indescribable. It was also such a personal disappointment to me, after being rid of all substances, thinking I would never have to deal with something like this again, I find myself basically addicted to a drug that in some cases requires methadone to come down from.
But I am preparing to get rid of it. I am currently taking 0.7 and next week I will ask my doctor to give me a prescription that breaks 0.7 into 4, intending to vean off it from 4 to zero during a few months.
I have a RENPHO leg massager, which works pretty well if it was only in my legs. I am getting a bathtub. I may build a sauna. I have started taking iron with c-vitamines. As I am doing a keto diet I also take electrolytes. I found something called Hyland's Restful legs that gets great comments.
My question to you, in addition to just sharing my story, is to ask if anybody has tried Hyland's Restful legs, or other remedies that do not require me breaking my sobriety.
All the best
Siggi
Written by
sigurdur
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I used Hylands Restful legs when I had mild restless legs before it increased. It helped for about 3 months. You can try it but I doubt it will help in your case. At .7 mg you are probably aware that you have exceeded the maximum dose which is .5 mg. Dividing the .7 into 4 parts will give you too large a dose. Instead ask for .125 tablets. To come off pramipexole, reduce by .125 mg 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. But in the long run, you will be glad you came off it. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole 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. 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 split the doses with 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. If you take magnesium take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. 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. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Addiction refers to any mind altering substance. If alcohol is the drug of choice one must also be extremely careful with drugs as well. Similarly if drugs of any kind are a problem, then one must stay away from alcohol. Many alcoholics relapse because they take mind altering pills, which can easily lead you back to your drug of choice. If Sigurdur wants to protect sobriety then they are quite right in avoiding both alcohol and any mind altering pills.
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, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.
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.
Tough question. As you have discovered, Pramipexole is a terrible drug. Miraculous at first, and then it causes severe all over RLS.It should be reduced very, very slowly over several months, usually with the help of an opioid or cannabis.
You say you trying to continue your sobriety ( presumably from drugs)..
Hopefully, when you are completely off Pramipexole, your RLS will not be too severe.
Raising serum ferritin above 100, preferably 200 may resolve all your symptoms.
Ensure you're not on meds that trigger or worsen RLS, like anti depressants, sedating anti histamines.
If your RLS is severe after raising serum ferritin and getting off Pramipexole, you may have no choice but to take medication.
The only categories left to you are pregabalin and gabapentin or opioids.
Both can cause problems if There's a history of drug abuse.
However, methadone and Buprenorphine are highly effective for severe RLS and would be an option for someone with a history of drug abuse.
Many of us with severe RLS take methadone or Buprenorphine.
Have a look at the Mayo Clinic Algorithm and the opioid table. It sets out the average doses for methadone and Buprenorphine.
Low doses work very well, especially after severe augmentation on Pramipexole.
Thank you. My RLS was manageable before I started taking pramipexole. And would be even more so now with new discoveries about iron brain levels, and inflammation, and devices available like the RENPHO leg massager. I will get through this just as I got through rehab and recovery. Opioids are absolutely not an option, I would rather cut off my limbs.
Totally understand. Methadone and Buprenorphine are given to recovering heroin addicts, so in the future, if your base level RLS after withdrawal from Pramipexole is still severe, they may be a safe option as there is no 'high'.
Hi, Sigurdur - I have used Hylands Restful Legs on & off for years. I also use Hyland's Calms Forte before bed. I can't be sure it works but it is one more thing to use. Lately, I've been using another natural remedy - arnica gel - massaged into my legs and found it helps, too. Arnica is also available in homeopathic pill form (dissolve under the tongue). Good luck. Stay sober. Cherish your sobriety.
I tried Hylands Restful Legs and they didn’t work for me, unfortunately. There’s a disclaimer on the box which states it is NOT a treatment for restless legs, which of course I didn’t see until after I’d bought it, so I do wonder who or what it’s actually for…
I have had wonderful results with Restful Legs for about two years now. It's a life saver for me. The thing with homeopathics, is that if you are on strong meds, they probably won't work. You have nothing to lose in trying it though. It's not going to interact with other drugs.
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