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ME/CFS: A disease at war with itself
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bad feeling in legs also when lying down

Discussion in 'Neurological/Neuro-sensory' started by leaves, Dec 15, 2010.

  1. leaves

    leaves Senior Member

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    it is hard to explain but I have a very uncomfortable feeling in my legs. It is not real pain but does drive me crazy. It seems to be getting worse. \it is like there is too much blood in my veins or something.
    Anyone knows what to do for relief?
  2. John Day

    John Day

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    Could you be far more specific. Where does the pain occur? Is it above or below the knees? Is it on the outside, inside, back or front of the legs? Does it affect the soles of your feet? Does it feel like itching, tickling, cramping, numbness? Does it feel either hot or cold? Does it occur after exertion? Does hot or cold weather affect it?
    The lying down aspect is a clue. Does it feel better or worse when you lie down?
  3. leaves

    leaves Senior Member

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    hard to explain but ill try: it is the whole of my leggs, from the inside. doesnot affect the sole. does not feel like itching or tickling or cramping or numbness( although i have a lot of numbness, and feeling of bubbles in my leggs too) it is like there is too much blood in my veins, but lying down does not relieve it. I have it all the time.
  4. John Day

    John Day

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    The devil is in the detail. (That it occurred in both legs is significant. That it is getting worse is significant.)
    Has the discomfort appeared gradually over weeks/months/years? Or did it appear suddenly over days?
    When you first became aware of it, was it in your feet and lower parts of your legs or did it appear over the entire length?
    Is the discomfort remitting-relapsing or is it a fairly consistent, relentless pain?
    Does activity relieve the discomfort or make it worse?
  5. Sherby

    Sherby Sherby

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    Here's another couple of questions
    1- Does the sensation disappear or lessen when walking.
    2- Does the sensation get remarkably worse when at rest, directly after using your legs more than normal.
  6. leaves

    leaves Senior Member

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    Hey all. That is a lot of questions :). I guess I was hoping someone would recognize my (meager) description (as many of our symptoms coincide) and had some advice for me.

    As I mentioned; it is there all the time; no effect of walking, seems to be stable over time. i have it for at least two years but over time the severity has increased. My legs feel very heavy too. I think it is blood pooling in the legs, and that horizontal positions do not help. Probably a symptom of dysautonomia. I have gotten worse over time with other stuff too so I think it fits nicely with my negative trend ;)
  7. camas

    camas Senior Member

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    Does it feel like your veins hurt? Sometimes I get that sensation. I can feel the blood pulsing through the veins in my legs and it hurts. I tend to notice it more when I'm trying to get to sleep. I haven't really found anything that helps though. It seems to happen when my OI is worse, so I figured it was a blood pooling issue.
  8. leaves

    leaves Senior Member

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    Hey Camas,

    Yes I guess you could call it vein pain, altho it is not really "pain" in the normal sense.maybe I should get some compression stockings or something...
  9. Sherby

    Sherby Sherby

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    What ever is the cause. Having this problem 24/7 year-on is a hard one to resolve and mentally handle.
    There it is all the time, stopping any peaceful rest or relaxation which we desperately need.
    I have a similar problem for many years. It stops me from getting to sleep. I have to knock myself out with pills if i want to sleep.
    I have found, that when labeled with CFS/ME no doctor or specialists take you seriously.
    To this day and i wont mention how many years, no-one has isolated the problem.
    All i am prescribed is loads of meds which i really don't want to take.
  10. leaves

    leaves Senior Member

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    yes it isnt fun :(
    Sherby I am sorry to hear you have something similar.
    I am thinking it is actually worse when I lie down. That is weird isnt it.
  11. John Day

    John Day

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    Sherby, given the clarity of your symptoms, are you saying that you never obtained a diagnosis?
  12. Sherby

    Sherby Sherby

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    Hi John, When ever i mention my problem and describe in detail to various doctor/neurologists, i just get a blank look.
    I haven't a clue what's coursing it. I do know what makes it worse though. All i know is that it started the moment i got glandular fever
    and was flat on my back for 6 months. Then diagnose ME.
    I have had it so long now, i kind of excepted it as part of this disease.
  13. Sherby

    Sherby Sherby

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    Not so weird, i suppose it make sense that you would feel it more when lying motionless.
    I feel everything when motionless.
  14. biophile

    biophile Places I'd rather be.

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    Reminds me of the time in the public hospital when answering yes to the question "do you feel discomfort in the limbs" (which makes one feel restless) prompted a doctor to investigate the idea of sleep deprivation due to "restless legs syndrome". A sleep test found no evidence of kicking legs during the night, but did find mild sleep apnea and fragmented sleep which supposedly wasn't severe enough to justify the severity of CFS symptoms. Despite a promise from an earlier supervisory doctor that the sleep department was just the first round of specialist testing and there would be more specialised tests later, a 3rd doctor who evaluated the sleep results attributed the sleep abnormalities to the previous diagnosis of CFS and said there wasn't any point coming back because there was nothing they could do.
  15. John Day

    John Day

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    Sherby, bingo. You hit the magic words: Glandular Fever also known as Epstein Barr Virus and Mononucleosis. It is a precursor to many neurological diseases such as MS and though the research is pretty scant it is implicated in Peripheral Neuropathies.

    When you talk about:
    1- Does the sensation disappear or lessen when walking.
    2- Does the sensation get remarkably worse when at rest, directly after using your legs more than normal.
    you hit the nail on the head.

    Are you getting the sensation in you finger tips?

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