Hello everyone my RLS is getting worse. I live in Mexico. I wanted everyone to know before I got started because there are certain drugs like buprenorphine I can’t get here.
I’m finding that my arms and hands have this funny tingling in them when I go to bed. No jumping like my legs. It’s just a tingling annoying feeling and enough to keep me awake. This happens even if my legs are fine.
I’m on 2 mg patch, and 100 mg of tramadol. I’ve been on gabapentin before but it’s been awhile.
I was on methadone but it’s difficult to get here and if I can get it it’s in the liquid form.
My other question is concerning augmentation and Ropinirol. I was on that for almost 10 years. But have been off it now for 7 years. If I take it again will it immediately lead to augmentation? I’m in a real bind. The drugs that I can get here don’t seem to be the ones that can help or like Neupro, they are crazy expensive compared to my plan in the US.
you’re probably wondering why I’m not in the US. I was forced to retire from teaching early due to the complications of this RLS. My pension is small and even though the school and my Union supported me in getting a disability pension ( not social security disability) that would have paid more my expert Doctor refused to provide the documentation for the disability pension. Thanks Dr B.
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Jrskyhook32
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It probably won't immediately lead to augmentation but it won't take long before it does. If the patch you are referring to is Neupro, it is very similar to ropinirole. I assume you are referring to Dr Buchfuhrer. Why wouldn't he provide the documentation?
You mention you were on gabapentin before . How much were you on and did it help?
gabapentin did help. It helped to ensure that once I got to sleep I stayed asleep. Dr B wouldn’t provide documentation because he claimed my RLS wasn’t bad enough to prevent me from working. The effects of the meds the insomnia, the RLS and everything else were brutal for a NYC teacher commuting 35 minutes a day. I had to stop driving because I fell asleep at the wheel. I jumped a curb and nearly killed a pedestrian! I wasn’t sleeping at night and going to work I would fall asleep at meetings and even once in the middle of class. My Principal the Board of Ed and my union all backed me up in applying for the disability pension. But he didn’t care. He just said no. He also said no at first to writing a simple letter to the Board of Ed saying I should continue teaching at home due to my additional risk factors including asthma. I had to beg him for that letter and he finally wrote it. I’m in Mexico because in my small pension I can’t really afford to live in myy try
It sounds like you are suffering from augmentation on the Neupro patch. I would ask for 1 mg patches and cut them in quarters so you can reduce by .25 mg every 2 weeks or so. You will have increased symptoms as you know from before. 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 will probably need to increase your tramadol 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 ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US. I don't know about Mexico) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). 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. 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 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). 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." which is why the 800 mg you were taking didn't help enough. 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...
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
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, 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, 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.
Can you increase your tramadol? The usual effective dose according to the Mayo Clinic Updated Algorithm for RLS is 100 to 200 mg so you have room for more
I worry about the tramadol being addictive and it causing a different sort of augmentation. I went through some really bad times trying to get off Ropinirol. The doctor I had prior to Dr B thought I should go cold Turkey. I didn’t sleep for 5 days. I fell a few times because I was falling asleep on my feet. I’m a mess of worries right now. I have an appointment in the States at Boston General on the 8 th of August. I hope they can get this sorted out.
It has been shown that it is not addictive for people with RLS at the doses prescribed for RLS. Yes in some cases it can cause augmentation bu tit is not like the augmentation caused by DAs. It is much much easier to come off it.
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In my belief this is what caused my RLS!
RLS in my hands?
augmentation pregabilin
How to switch from pramipexole to pregabalin?
