I Have had a form of rls all my life. I got kidney failure and while on dialisis for 5 years all the meds that I was normal on I became worse on (requip and believe it or not prozac ) and xanax and oxycontin cause of severe nerve damage from spinal cord issue from birth that was not found til i was 25. they did two surgerys and that is were the nereve damage came from. I now had a kidney transplant. the med for the transplant seem to have made things change for the worse. I am now 60. I have rls in my upper trunck area. I am still on oxycontin and xanax with gabapintin. I am scared to death my dr and insurance company will not renew these meds when I have to get off medicare for three years. and scared regular insurance coverance will not precribe these meds. what do I do. I jjust want to live.
scared and depressed
I dont know how to even get regular insurance. any. help.
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ESRDRLS
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I wish I could help you but I don’t have the answers you need. I believe most caring doctors will make sure the necessary medications remain available to you. I pray that you get neeeded relief soon..
Hi there. I’m really sorry to hear about your health issues. It can be very scary navigating all of it, and especially the insurance here in the US. Here’s a good place to start:
Once you have insurance setup, It’s time to make a plan on how to advocate for yourself. Finding a doctor that can care for you long term who understands everything you have going on is important. As big of a pain in the ass the insurance can be in the US, we are able to get in to see specialists much faster than some other countries. When I was trying to find out what in the hell was wrong with me, I was able to see 2 different neurologists, a pulmonologist, gastroenterologist, and hemotologist all within 30 days and all without a referral.
From an outside perspective, it seems like it would make a ton of sense to switch over from Oxy to Bellbuca which is a longer acting pain killer that has less of a chance of needing to increase dosage over time. If worse comes to worst, doctors will see you without insurance. It’s not a requirement and you can discuss pricing up front with them. I hope this helps and I hope you find some relief soon.
Dear friend feel I must call you that my heart sank when I read your letter any drug you take has a risk the problem with rls no really understand it the misery is beyond believe I have some things I do to help you may have read I have rsl in legs arms wrists I use the shower as hot as I can tolerate it seams to help confuse the unwanted signals I keep clothing as loose as possible as with lots of problems night time is the worst try to keep the room cool the parts that are not affected you can still keep warm , now the OxyContin I’ve had 15 plus years this goes against everything they tell you try not to take as a routine tablet but only when nesasary the problem is you body will try to say you need them when you don’t , take control of your body you have been though so much so I know you can do it I could talk for hour there is more to tell get back to if this helps because I’ve found some other issues that may affect many of use reply ASAP Brian
Please check out the above resources link and see if they can help. Also, if you need an advocate and can't find one through any agency, try a local church for help. So sad to read of your situation, but you definitely aren't alone. Life-saving medications are being denied to many and it's just wicked. Let us know how it works out.
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HELP! RLS 
Any body else suffering head injuries?
scared!
exhaustion and feeling no hope
Desperate for some quality sleep
