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Diagnosed with RLS after sleep study

Posted , 5 users are following.

stacyleah
stacyleah

I had a sleep study done, thispast Satruday due to severe fatigue that has plagued me for a few years and has gotten really bad in the last few months.

Even after cups of coffee, I am falling asleep. Findingmyself closing my eyes while I'm driving has scared the life out of me!! I can be sitting and watching tv and get the cramps and creepy crawlies, then I have t oget up and walk or suffer in pain. I have had to get out of bed and walk for relief. How am I so sleepy? The sleep study was done to check for apnea, but, the nurse said that there was little obstruction going on that she couldsee, but, a lot of leg movement and waking up when that is happening. 

Does anyone else have such horrible fatigue from RLS?

I was told to make an appointment with my primary care doctor to discuss the study, but, the nurse said that I need to to tell the doctor about noted RLS as the pulmonologist will not discuss it as the apnea is his concern. Is there a cure or a good treatment that I can ask about?

Thank you for any help that you can give me. I'm tired of my life being so affected by this stuff! I never want to do anyhing because I am so sleepy all the time. I just want to sleep!!

1 like, 12 replies

12 Replies

  • Hazel_Kennedy
    Hazel_Kennedy stacyleah

    Posted

    I have suffered with RLS for 18 years. Used to do ironing in the middle of the night because I could not lie down or sit down because of my fidegety legs. For the last 2 years I have been taking 2 x 30 mg dihydrocodeine (on prescription) at tea time and hardly have any symptoms at all, mostly no symptoms. If I forget to take them the symptoms return. I have tried loads of other remedies in the past but on the dihydrocodeine have worked. Relief at long last!
    • mrsmop
      mrsmop Hazel_Kennedy

      Posted

      Hazel, your comments on dihydrocodeine are very helpful.  I was prescribed it for a different problem and went back to my GP to ask for some more, she [a trainee] told me that we would try Cocodamol instead.  I took one to try, at 7pm and had the most awful restless legs.  I have also noticed that Ranitidine gives me restless legs unless I take it in the morning.
    • debbie27473
      debbie27473 Hazel_Kennedy

      Posted

      Hi Hazel. It would certainly seem that certain types of strong pain killers are the way to go (see my comments on Tramadol). I was just wondering, apart from Codeine, what else is the active ingredient in Dihydrocodeine? It would be great if between all of us sufferers we could identify something which actually helps people with this! I shall be looking at what my Tramadol is made from and make comparisons. Take care, Debbie
    • Hazel_Kennedy
      Hazel_Kennedy debbie27473

      Posted

      Hi Debbie. I think you are right. It seems to be something in painkillers.  I had to have 2 hip operations and was dreading being immobile with my RLS, but stangely after each op when I was on morphine and then dihydrocodeine I had no symptoms of RLS. I asked my doctor if I could carry on taking the tablets and he agreed. Haven't looked back since. Occasionally in the afternoon if I am bored and sitting I can get a bit fidgety, but I just get up and walk round for a few minutes and I am fine - easy in the daytime, whereas before I couldn't visit friends in the evening as I had to keep staniding up and when you get tired the symptoms get even worse.
  • debbie27473
    debbie27473 stacyleah

    Posted

    Hi

    A lot of us on this forum have suffered for years with this horrible condition and getting doctors to take it seriously is extremely difficult! We have all come up with different ways of coping day to day but there is no specific treatment for this affliction I'm afraid. I find that Tramadol helps. I take these for a different spinal condition and as a fluke, I found that if I take one a couple of hours before bed time the RLS is considerably reduced. Unfortunately the more tired you are, the worse the RLS gets so you must find some way of getting some sleep! Another trick is to wrap cold wet towels around your legs! Incidentally, do you know what started it with you? In my case, it was after a severe bout of food poisoning. one of the symptoms is 'leg thrashing' and it never went away. This was 35 yrs ago. I wonder if it damaged the nerves in some way. Anyway, I wish you all the best. If you find another way of gaining relief, please keep us posted. We are all willing to try almost anything to break the cycle. Take care, Debbie

  • mrsmop
    mrsmop stacyleah

    Posted

    Stacyleah, are you on any drugs that might be causing this, even otc drugs?
  • stacyleah
    stacyleah

    Posted

    I am making an appointment for my follow up to the study and will talk to my doctor about it.

    I can't think of anything that would have triggered it. I've only had 2 surgeries and it was before those and my kids are over 25, so, not that either. Weight gain possibly?

    I am not taking anything that I know of to cause them. I am on lasix for edema that is checked and potassium is good. I just had a full blood workup and all numbers are great. I have been taking the lasix for about 6 years and this has been the last couple of years that it's been going on. Other than that, I take anti depressants that I have been taking for a long period as well.

    • Hazel_Kennedy
      Hazel_Kennedy stacyleah

      Posted

      I believe mine may have started when I was going through a stressful time. Some say it is hereditary, both of my grown up children have mild symptoms very occasionally, but to my knowledge none of my parents nor grandparents had RLS
    • mrsmop
      mrsmop stacyleah

      Posted

      Stacyleah, diuretics and RLS are connected, especially if you have been taking the Lasix [Furosemide in the UK] for so long.

      Can you come off them, at least for a while?

    • stacyleah
      stacyleah mrsmop

      Posted

      Unfortunately, no sad I have unexplained edema that causes me to swell so much that if I stop taking, and I have tried, that within just a few days, I am pitting and my breathing is affected.
    • mrsmop
      mrsmop stacyleah

      Posted

      I wonder whether trying a different type of diuretic might help with the RLS
  • Udon
    Udon stacyleah

    Posted

    Stacy, antidepressants will make a person's RLS much worse and may even be the sole triggering event.  The tricyclics and SSRIs are completely unacceptable, they will make your legs go crazy.  As far as I know, Effexor and one other antidepressant is ok to take if you have RLS.  Talk to your doc and see if he can safely and cheaply switch you out. 

     

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