Discussion in 'Fibromyalgia Main Forum' started by jackiesmum, Sep 21, 2005.

  1. jackiesmum

    jackiesmum New Member

    I have allodynia....excessive pain response to non painful lightly brushing my skin is excruciating.

    Also hyperalgesia....excessive pain response to painful stimuli...a bump sends pain ricocheting through my body as if I had been hit with a sledge hammer!

    Neurontin and cymbalta seem to be dampening both pain responses well down.

    My neurologist tells me both are part of the whole fibro thing!

    Shoes are out of the question...I live in flip-flops!

    Where in Lancashire do you live?

    Take care...Lynda

  2. jackiesmum

    jackiesmum New Member

    I live in Southport Amanda!!!! Can you believe we live so near? Do you go to the Preston support group...I believe there is one.

    If I understand you correctly you haven't had a referal yet?

    Most g.p.s have never heard of took a professor neurologist at Walton Neurological Centre in Liverpool to diagnose it . He has been great at sorting out my medication and has just about got it right.

    I am often in the garden at 3 in the morning hosing down my feet to get some relief..the neighbours think that I am mad....take care

  3. jackiesmum

    jackiesmum New Member

  4. orachel

    orachel New Member

    I have both of these symptoms and in a HUGE way. My physiologist looks at me as if I'm bonkers when I describe lightly tripping over a vaccuum hose and catching myself with my leg before I really "fall" hard....suddenly something that should be barely an "ow!" causes me to nearly pass out...was at least 10 minutes before I could even speak, the pain was so horrific. My husband totally flipped, scared to death...he'd never seen me in a "10" on pain scale before.

    As for the allodynia....I literally can almost never wear normal clothing (underclothes are the worst!)....go around constantly in hospital scrubs as they barely brush the skin by design....I buy them a size too large (and my husband gets them free at work too...bonus! LOL) and they come in all colors and styles. I've tried everything, and aside from going around in the buff (which also hurts me as I get very very painful tensing from the slightest wind or draft...Plus, would terrify my neighbors! LOL)they are the only thing that works. Plus, taken to wearing lots of "hanes" cotton clothes in multiple sizes too large, washed MANY times to soften 100% cotton. My fave is my old ucla t-shirt that I've owned for over 10 years...and my husbands old navy t that he's had for about as long. The very best t shirts for me are gynormous, and are so soft and thin they are ready to get "runs" like pantyhose...they're just so comfy and very little is!

    Thanks so much for the info....I'm trying to schedule for neurologist in next week or so for my 1st appt. My physical medicine doc doesn't seem to know what to do with these symptoms other than say "they're all part of the FM/CFS...just have to live with it"....looking forward to starting some sort of a protocol to deal with this abnormal sensitivity.

    Really, when you have to wear hospital scrubs in your daily life...especially to dr's office...they really do look at you a bit like you're a hypochondriacal (sp???) nutball!

    Oh, and shoes? forget it....cannot handle flip flops as murder between 1st 2 toes. Only thing I can wear is softest kidskin ballet flats. Totally thinnest leather imaginable, plus perfectly flat.

    Great info!