I found that the more specifically you can communicate with your doctor about your symptoms, the better the results. Example: rather than telling him/her that the RLS is "bad" or "terrible", etc. say " I have to move my arms or legs every 5 seconds for as long as 2 hours at a time". They really GET this!
When I finally communicated to my doctor this specific description of my symptoms he finally prescribed an opioid. And I finally slept. Try it!!
Great advice.
Delighted you are getting decent care. 💚
That is good advice since so many doctors are so ignorant how bad the symptoms are and how they affect you and it's great that you were able to get an opioid and it works !
I hope MANY of us will try this approach! Be very specific about your symptoms. The more specific the better!
Can I ask what Opioid your doctor prescribed and what dosage? Many thanks.
At first he prescribed hydrocodone/APAP 5/325 1 tablet every 6 hours but I had side effects so he switched it to oxycodone/ACET 5/325 one tablet twice a day. But I had side effects to this too so he switched it to methadone 5mg twice a day. This was too strong for me so I cut the 5mg in half and take it twice a day for a total of 5mg in 24 hours. Hope this helps!
This is where Sue’s contribution is invaluable. I sent my doc and the pharmacist (we are lucky that there are 2 big practices in one building with 5 other sites) they employ, the Mayo report, which obviously carries a lot of respect as it is peer reviewed. I saw her again last week- from having a vague knowledge of RLS, she is now something of an expert (think I have been the Guinea Pig !!!) with obvious benefits for treatment. I did something similar with my wife’s cancer consultant in 2015 - 2018, over available trials- she got one that definitely extended her life by several months- the “lesson” being to always use credible studies and respected sources (not miracle claims that are so frequent on the internet). It is hard work but you can do it- and use it to educate general practitioners who, to be fair, are so busy they simply can’t keep up with the latest developments. It works!!!
Well done.Great advice.
It's great that your GP understood your description of your symptoms, and even better that you got opioids. Hope it continues to work. We've got to keep trying to educate our doctors about RLS, with the best new approved treatments. I'm happy for you.
My neurologist and PCP were both very reluctant to prescribe opioids because of the opioid epidemic so my neurologist sent me to a pain management clinic where the docs regularly prescribe opioids. It was my pain doc that finally prescribed methadone for the RLS.
Brilliant. Thanks for sharing too.
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