Pain and RLS

When I saw my neurologist who is a Professor specialising in movement disorders last week he questioned whether I have RLS. His reasoning seemed to be that I had too much pain!! and also that nothing untoward had shown up on a brain scan nor on a MRI. I pointed out that RLS cannot be clinically proven and that I ticked all the IRLSG assessment sheet boxes. He ignored this. He said that of 500 patients on his books who had RLS none complained about severe pain. He suggested to me that what I was experiencing was functional movement disorder caused by accumulated stress. I take 1800mg of Gabapentin and 200mg of Tramulief and still have pain which is lessened by the Gabapentin. I would be interested to hear whether anyone else has had this suggested.

7 Replies

  • The problem is defining what any individual means by "pain".

    The real issue is not whether you have RLS or not. - It is that you are suffering pain despite quite high medication.

    Your RLS should be covered with that medication - so now you are left with undiagnosed pain-unless you accept his diagnosis.

    What is his prescription for this?

    You need to be educated on your options. Check out the rlsuk site for a leaflet on meds to take and avoid.

    Good luck.

  • Thanks. He wants me to have a nerve function test and an EMG. He will see me again in three months then we can discuss maters further.

  • Plenty of time to do the research!

    Good luck. At least it is being investigated.

    Have you looked for help on the Pain concerns site here.?

  • F**K me but can that man do his job? Its bad enough that we suffer so bad with having to move that the agony that we experience along side that is now being ignored!!!!

    I can tell you when things are bad for me the pain is severe and I have spent many a night literally rolling in agony on the floor as the pain is driving me mad and I am too exhausted to walk.

    Just read on here and you will see many of us not only suffering pain but having that pain and the RLS controlled with the proper pain meds.

    I have had RLS my entire life and have rarely had it fully controlled. I've been and am on high doses of drugs and I still have bad days. If the pain is occurring with the need to move, or after you've been pacing for some time then its RLS - if you have the RLS fully under control and still getting pain then there is another issue that needs investigating imho.

    Good luck with the nerve test and it is good that he is doing the tests to rule out anything else so at least a silver lining to the cloud.

  • Thanks Raffs. I have been in touch with Dr Mark Buchfuhrer and he wonders whether the mix of Gabapentin and Tramulief is right. I will look into this

  • Martini why a lapse of three months to see a patient complaining of pain? It seems excessive .

  • Apologies the iPad seems to have a mind of its own and spells things contrary to my spelling.I know it is Martino.but it kept on with its own idea.

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