Massive atrophy

I am so grateful for Pippin's description! It's not often you can get such validation regarding RLS. Friends, family AND most doctors have no idea what we go through. They look at you as if you are making some of this up. I have been going through some extreme all over fatigue... short of breath, legs feeling like a pair of heavy railroad ties, after just a few moments of being up and around. I realize this sounds normal for all our legs go through, but this is really debilitating and constant. I feel like I am in a catch 22. I feel like I am not getting enough exercise so I'm getting weaker. But, when I try to do ANYTHING I practically crawl to the nearest chair or bed because my body shuts down. I need to get a good RLS doctor, I know, I just don't know who.


12 Replies

  • This doesn't sound like rls- more like Cronic Fatigue.

    Rls , if anything, makes one more frenetic as we try to move or shake off the fidgety feeling. Eventually , through lack of sleep , we may become exhausted and experience catatonic sleep - but not the chronic weariness you describe.

    Lyme disease can produce the symptoms you describe.

    A general check up with a good doctor looks in order. Where do you live? Someone here may have a suggested reference.

    Good luck.

  • I have all the uncontrollable jerky movements, etc., of RLS, but just have recently started having it all over my body and several times a day, just not solely at night. It's after several rough days and nights in a row that my legs, and body for that matter, feel SO fatigued and heavy. It's like a vicious cycle. Have been checking for doctors to go to that could possibly help.

  • I live in Spokane Valley, Washington.

  • That sounds more like pernicious anaemia to me- I have both so recognise the symptoms. There is a site on here for PA.Take a look at the symptoms.x

  • Hi Jumpey, I was wondering if you are being treated for the PA and if it has provided any relief to the RLS?

  • Hi.I have 3 monthly B12 injections. My RLS symptoms continue.x

  • Hmmm, hard to know what to do and what will work for sure, huh?!

  • Are you thinking that at some point it might help? Well I hope that once the anemia goes so will the RLS. Fingers and toes crossed.

  • RLS is not atrophy. With RLS we cannot stop moving, the urge to move has to be there to have RLS. Atrophy is muscular, and what you are describing just does not sound like RLS. What you are describing is not what RLS is, as in dragging yourself around. You may have RLS, if you have the urge to move that you cannot control, as Pippin describes. But the atrophy is muscular, not neurological like RLS is. That is 2 different things. Either way, you need to talk to a doctor about this.

  • My Gp is very good I have amitripyline for RLS as I have joints issues I take Zapain this has worked for six months I can now sleep for at least four hours but wake with leg cramps twitching but up stand on cold floor make cuppa back to bed sleep another four hrs there is no cure it's day by day body gets used to the combination of drugs so we. Change againbut try anything I do know many say amitripryline is no good but it's great for me it's so unknown no two people same so Gp do find it hard

  • I was on amitripyline for years, then it stopped working. It was wonderful while it worked!

  • How long did it work for what did you take after that then I dread the day it stops

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