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Is this Neuropathy ?

Discussion in 'Peripheral Neuropathy' started by Reno, Jun 22, 2017.

  1. Reno

    Reno

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    Mostly noticed in feet and calves after standing for about 5 min or longer.
    *Feet start getting hot
    *Vines swell up
    *Skin turns red/ light purple/ blueish
    *Pain gets worse the longer i stand and climbs my calves
    *Prolonged standing causes knee pain then hip and sacral pain
    *If limbs are elevated the pain/ pressure quickly reduces and skin color starts turning white

    Above heart
    If limbs are above heart:
    *Inverted feet will within seconds about 30, start turning ghost white
    *Vines will depress/ collapse
    *I feel blood/ liquid rushing down my legs
    *feet start tingling and aching to the point where it is unbearable maybe a min. or 2
    This also happens to my arms but are less noticeable, for instance cutting my hair becomes unbearable
    and i need to lower may arms for a few seconds for the pain to subside.

    Pressure pain
    Similar to above but more burning than anything else
    *Any body part with pressure is affected
    *the larger the surface area and fat (such as butt) the longer it takes for the burn, elbows, palms on desk when typing, heels on floor resting and so on...


    I have and had many other symptoms but this seem to be the hardest to rid myself of. I have on several occasions but not sure what made it go away even with a daily log. I have noticed It is the cause of the CFS for me. The more pain throughout the day the more fatigued I will be.


    The biggest help is sleeping in a hammock, I went from waking up feeling like I was runover by a bus sleeping in a bed to getting tackled in a field of soft grass sleeping in a hammock. Probably due to the more uniform contact surface area.
     
    JollyRoger likes this.
  2. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I'm not sure what you have going on, but it doesn't sound like neuropathy. Neuropathy feels like numbness and painful tingling, a pins and needles sensation, with no variation due to position.
     
    Wonko, Valentijn and TrixieStix like this.
  3. Vojta

    Vojta Senior Member

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    Czech Republic
    I think I have almost all symptoms mentioned and I don't think this neuropathy which I got too and it's different from this - permanent tingling which goes from fingers up, pins and needles, strong sharp shooting pain which comes and goes etc..

    With the burning upon pressure (hand on table, feet after standing etc) I wonder if this could be caused by MCAS. Because I got this pretty strong only 5 months ago on top of everything else.
     
  4. Kati

    Kati Patient in training

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    You are describing dysautonomia, and POTS's secondary symptoms, (inability to pump blood back up when standing) - have you noticed increased heart rate from laying down to standing?

    You can get more information on the Dysautonomia International website.
     
  5. JollyRoger

    JollyRoger Senior Member

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    Did you make the test for autoimmunity?
    Dr. Scheibenbogen found some autoantibodies in pots and cfs tested by celltrend.

    It's interesting because I'm positive for certain autoantibodies and I have the same symptoms.... with these legs and arms i look like a pumped up bodybuilder with all the veins but standing for
    2 minutes gives me pain in my legs like fire
     
  6. TrixieStix

    TrixieStix Senior Member

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    yeah i agree. it doesn't really sound like neuropathy. do the descriptions of/symptoms associated with claudification& peripheral artery disease sound familiar to you?
     
  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    If you're asking me, I have no clue about most circulation disorders.
     
  8. TrixieStix

    TrixieStix Senior Member

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    nah that was directed at @Reno
     
  9. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I agree it doesn't sound like neuropathy. I have peripheral neuropathy in my hands and feet which are now nearly completely numb. This makes gripping slippery things tricky (I often drop glass jars), cant turn pages of books (without a rubber thimble) and don't get me started on plastic bags.

    Mercifully I don't have shooting pains, but this is also quite common apparently.
     

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