I am approaching my Dr for first time with what I think I have; RLS - what should I ask?

I have been treated with pain killers for many years with what the Dr says is a back problem, but I know that I have RLS - I have pain and sensations in ankles,wrists,back,finger joints - relief (if you can call it that ) is to move body around - can only lie in one position for 10 mins - I am getting about 4 hours sleep a night, sleeping in spare room, getting low in mood - and I have had enough - what should I be saying to my Dr to get best treatment?

12 Replies

  • First you have to have the criteria for RLS to diagnosed, if you can tell your doctor you have the list i have posted for you. Then you can then discuss medications which are used for RLS.


  • can also help if you keep a diary of how you sleep, if it is RLS, how many hours your up and moving instead of sleeping, good luck with your doctor

  • I'm sorry to hear you have these horrid symptoms, which I know only too well. Along with Elisse's suggestions, I think you should also ask for a referral to a Neurologist. They should carry out tests to rule out any other possibilities for your symptoms. Then hopfully you can get the correct treatment and some relief. Good luck. Xx

  • A referral for a sleep study could provide conclusive proof of the lack of sleep resulting from the symptoms you're experiencing. RLS or not, that should get some sort of treatment plan in motion. It's a shame that often without clinical evidence they won't treat, but if that's what they need, a sleep study could provide adequate documentation. Good luck!

  • Thank you so much guys for advice, I have felt so alone on this for so long. I thought I was going mad and that it was maybe in my head that I had to keep moving all night and being in pain most of the time I will take suggestions on board and go to GPs with a list in hand. x x Thank you again.

  • Pain in itself can keep you awake. I have Rheumatoid Arthritis as well.

    The movement of the legs is exhausting.. I know what you mean exactly

    as I suffer as well. Good luck on getting some answers.

  • I am so fed up - My family can only understand to a point and I am feeling like they all think I am lazy and can't be bothered because I am so exhausted all the time - how can I function when last night I feel asleep for one hour between 6am - 7am, and the night before for 2 hours etc. My 18 year old, just yelled at me "what is it you do all day? nothing" that's how they feel about me at the moment. I just want to cry, and I know it will be no different tonight.

  • Hi shaney12,

    I'm so sorry to hear that you are not being supported by your family. Two of my daughters also have RLS, so they understand how I feel.

    Perhaps you could ask them to read up all the information there is on RLS to really understand what's going on in your life. Alternatively you could ask your daughter to spend one night with you, waking when you do, walking with you and catching up on sleep when you do!

  • RLS.which i have had for 40 years is an involuntary movement of the legs( or i have heard of arms) jumping and kicking out,the only relief is to walk about.Not sure about arms!!!!

    Good luck with doctor it's taken me most of my life to get some relief. I now take ropinarole.


  • I have seen a neurologist twice now, and basically there doesn't appear to be a specific test for RLS, I explained by history of twitchy legs since I was about 5 years old (ish) I used to then describe them as toothache in my bones, only when I got older these these twitchy legs start causing me more problems, I was told by my parents that it was because i was tired and 'to go to bed' .I am unable to sit for long periods of time, as they start moving erratically they appear to have a life of their own, so I stand up to east the uncomfortable feeling (they still twitch however) when I go to bed then they are more erratic in their behaviour not only do they twitch, but they jump all over the place, which makes it impossible for me to rest even for 10 mins. So in a nutshell based upon my descriptions 'crawling, jumpy,twitching jerky' sensations I was diagnosed with RLS. And yes on occasions I even get this in my arms, which makes me feel like a puppet on a string, wishing that someone would come along and remove the string, so I would strongly suggest you see a neurologist and also make notes in your diary to refer to. Hope that helps.

  • First, carefully describe your symptoms from notes that you have made. Be specific about pain locations and time of day. Watch the doctor to see that he is paying attention. Sometimes after two or three symptoms the doctor locks on to them and does not hear the rest. Also, the doctor may have a short attention span so keep it short and to the point. Save questions for after the doctor makes a diagnosis.

  • In the end after having only 2 hours sleep for 5 days I had a Doctor phone me, described what was happening and they have put me on sleeping tablets for 7 days - this is not really helping, I am getting longer sleep but not what I was wanting. I have an appointment for Thursday and hoping to get heard. I usually have steroid injections in my back, but i don't think this would help what I believe is RLS - I have noticed that if I am very full, or eaten too much of an evening that it gets worse ( anyone else have this ) x Thanks for all the supportive messages about going to gp, don't feel so alone now. x x

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