RLS for 20 years, running our of options
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As stated, I've been diagnosed with RLS for the past 20 years. When it started, I fought and waited about 8 months before seeing a dr. (Was embarrased...thought it was all in my head). I was so misserable and sleep deprived the dr. put me on a narcotic as recommended as treatment for RLS. After I had better control on my RLS, my dr. started going through all the meds listed by the Mayo clinic as treatment for RLS. nothing gave me relief. So the dr. continued on the narcotic after several drugs attempted and in combinationa. I saw sleep specialists, neurologists, besides my primary. Today, I'm still basically on the same does with the addition of 4 tabs per day insted of three. I only take the narcotic at night which not only helps with my RLS but my mutiiple back problems. (arthritis, DISH, disc problems. I'm finding that there are no dr. who want to prescribe narcotics even though it is recommended as it is the last resort for treating my RLS. My big question is:
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beagle Retired_Captain
Posted
Retired_Captain
Posted
My question is: how do I find a doctor that knows something about RLS and can treat my symptoms. One sleep specialist told me that now that I'm on a narcotic other meds won't work. So what am I to do? When I mention that I'm on a narcotic every dr. asumes it's for pain and tells me I should get off of it. One dr. told me she didn't think the narcotic was approved for treatment of RLS until she looked it up and read it was true. Being on a narcotic for 20 years basically the same dose and it still works...I think I shown them that I'm not abusing the med.
Any helpful hints, thoughts, ideas that would help out?
beagle Retired_Captain
Posted
I was told by my doctor that there was nothing that could be done for RLS as he had gone thro' everything with a previous patient. He refered me to a specialist who had more experience but he told me that I would need to become my own expert! I was advised to join all relevant forums and read the various books. My GP worked thro' the drugs he suggested and we built up a relationship. He would take further advice from the specialist and gained more confidence in me and what I proposed from RLS book and forums. I explained augmentation to him after suffering from it and learning the hard way! A long journey but it worked ok and I am relatively stable now with most nights undisturbed. We are all different and need to find our own solutions.
Good luck!