and thought that I should start a new topic here. Thank God others have found the drug, Tramadol to be helpful. I have had restless abdomen since I was 17 years of age and it had really caused me to go nuts sometimes to the point where I want to “jump out of my own skin.” I am 40 now and this is just getting ridiculous. Throughout the time I have had this, my family asks me what it feels like and all I can say is that it feels like an “empty” feeling or “fluttering” or “butterfly” feeling. I cannot fully describe it. I have gone to a cheif gastroenterologist at one of the best medical centers and he wanted to put me on Prozac. What?! I’m not depressed or crazy. Then they said that this is anxiety, but does anxiety wake you up in the middle of the night multiple times per week? I have visited 4 different gastroenterologists and all of then say that this is in my head. “No, it is not. I assure you that it is not in my head.” I have put Vick’s Vaporub, Biofreeze, and Ben-gay on my abdomen to see if I can trick the symptoms to be concentrated elsewhere, but it didn’t work. I have tried a sublingual spray that is supposed to cause nerves in the abdomen to slow down but that didn’t work either. So far, Tramadol or any sort of narcotic seems to work the best, but who wants to be on those drugs for too long? Also, do any of you get that type of feeling when you are bored or in a situation where you feel uncomfortable or where you want to just leave a conversation? That happens to me. Also, when I drink beer or have champagne my symptoms go wild and my abdomen bloats to the size of a pregnant woman. I have not had beer in 10 years. I’ve switched to hard cider and that doesn’t cause any symptoms. I can drink hard liquor without any symptoms. I keep hearing that pramipixole is helpful. I might try it, but I am afraid of the side effects. I hope some help will be found soon. Thanks for listening to me on this matter.
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When I read your post I was thinking about histamine intolerance. But your doctors have certainly thought about this as well.
Just to illustrate: last night was one of the worst ever. In my arms (usually free) and legs. Not able to sit down for one minute. After thinking hard what was different during the day: After a flu and therefore general weakness I started to do weight exercises with my arms in the late afternoon and evening :-(( Furthermore I ate some dried porcini in a sauce at midday and cinnamon in the evening. Looked both up: Histamin!
By the way Prosecco and maybe champagne too is the worst for me.
Actually, painkillers (opioids) are a way to go for people with severe RLS. See this recent paper: mayoclinicproceedings.org/a....
Pramipexole as one of the dopamine agonists has its own problems. When you put augmentation in the search bar and do some extensive reading you’ll quickly find out why
For all meds it is important to always try to find the lowest effective dose amd stay there. Rather add in a low dose of another type of med than oncrease your dose. Hope you’ll get some good help and find something that works for you.
I tried the link you posted to the Mayo Clinic re opiods, but it comes up with 'an error has occurred'. Can you give any other pointers to the right page, please?
Rosie, hm, don’t know. Try to search online for rls, opioids and mayoclinic proceedings. Should come up quickly. First author Silber, published in 2018. Good luck.
I second Lottem. Be very cautious about pramipexole. Maintain the lowest possible dose and make sure your iron levels are high. It might be worth trying a short dose for diagnostic purposes. If it works then it is virtually certain it is rls.
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