I don't post much because my RLS isn't too bad most nights.I tried adding that both my kidneys have failed because of catching Covid for the second time and already I have a number of health issues. I am on Peritoneal Dialysis and I am diabetic.
I treat my RLS with 75mg Pregabalin, I know it's nothing in this forum.
The reason I am writing this is because I just experienced something I have never experienced in my 50 years with RLS!
I could transfer my RLS from my right leg to my right arm and back and forth as many times I wanted. Has any experienced this strange phenomenon??
As always thanking everyone that helps on this forum. Love and kisses but I got to get some sleep now.
Written by
Sleeplessinbitola
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If you have been on lyrica for 3 weeks, increase it by 25 mg every couple of days until you find the dose that controls your RLS so you aren't up at 4 am.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. 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 in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. 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.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
The units are the same. What did your doctor say about the results? Your ferritin is way way high unless you meant 242.5 and usually would require you to give blood to bring it down. Your transferrin is below normal which is usually 2.0 to 3.0 and is not surprising in that it goes down when your ferritin goes up. Your TIBC is below normal. I'm not sure on your iron - the results should have what are the normal values next to them.
I am so sorry to hear about your kidneys. I do wish health authorities and Governments would implement hepa filters ventilation to halt Covid and avoid serious complications like yours. Is there any chance of recovery or are you on the waiting list for transplant?
I haven't heard of anyone who can 'move' their RLS to other body parts. That is spooky.
Thank you for the quick reply. I am waiting to get on the waiting list and I have been on dialysis now for 3 years and they tell me 7 t0 8 years waiting.
Most nights the 75mg Pregabalin do help but I have to time the taking of it to the minute.
If I don't fall asleep within the first 15 minutes, that's it, I'm up all night, like tonight.
You are back on it when you augmented on it before? And since your symptoms are legs to arms and shoulders you are augmenting again.
You need a low dose opioid to help you come off it and to continue on it once you are off it since gabapentin/pregabalin didn't work for you. If you don't have a doctor that would prescribe an opioid tell me what city you live in and I may be able to recommend one.
Did you ever try dipyridamole that I recommended?
It's been awhile so let me give you how to come off it again. Since you are suffering now I suggest you add .25 mg and wait until your symptoms settle. However don't be tempted to stay on it as you will augment quickly again
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. 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.
If you find that is too much to reduce you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
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.
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