Another newbie with questions

    • Anonymous
      June 3, 2008 at 11:00 pm

      Hello All,
      I just wanted to introduce myself, as I have been lurking on the board for some time now. My name is Tara I am 24 years old and was diagnosed with CIDP in December. It started with numbness in my feet which I ignored for a while but when it started in my hands as well, I got worried and went to the doctor.
      I was extremly lucky and was diagnosed quickly with demylinating polynueopathy about a month and a half after my initial doctor’s visit. I had my first treatment of IVIG which worked extremly well, but when the tingling came back he changed my diagnoses to CIDP. I have been having treatments about every two months since.
      I just wanted to write about some of my wierd symptoms to see if anyone else shared them and how they dealt with them.
      1. My hands and feet get extremly hot, red and swollen when overworked. I am very mobile but after walking for about 15 min I have to sit for a while.
      2. Purple toes. Sitting on hard surfaces make my toes turn purple. Does not hurt just looks awful.
      3. In heat my legs turn red and blotchy. If I’m in the sun or after a hot shower my knees and feet are the worst, EXTREMLY red and mostly my thighs get blotchy.
      Sorry this is so long but its hard to talk to people who don’t understand whats going on, especially when alot of the time I do not understand or know whats going on with me. Sorry so long:rolleyes:

    • Anonymous
      June 4, 2008 at 12:44 am

      Hello and Welcome Tara,

      My hands and feet also get very sore. I can also walk short distance and then need to rest. I bought myself a portable wheelchair from costco. It folds up into a bag with carrying handle and it weighs 14 lbs. I can take it wherever I go if I want. Really helps when I am in lots of pain.

      My feet go hot and cold…also purple white and red depends if they are cold or hot.

      Can’t help with the blotchs after shower or hot sun haven’t had to deal with that.

      take care
      Rhonda from Canada

    • Anonymous
      June 4, 2008 at 1:48 am

      Hi Tara,
      I also get the painful hot feet and hands when I have been using them too much – That’s usually a sign to say rest up! When I say too much, I mean too much for me, which when compared to healthy people isn’t that much at all! I can remember after my first bad CIDP attack, if it were a hot day my feet would get red and blotchy. That was about 5/6 years ago now and I don’t get it as often anymore.
      I have found that resting is a great way to help with fatigue and pain – especially laying down – sitting down isn’t enough to help subside the fatigue for me (it helps, but it’s just not as good a laying down).
      Hope this has helped.
      Best wishes,
      Kazza 🙂

    • Anonymous
      June 4, 2008 at 8:53 am

      Tara, No apologies necessary on this site. That’s why we all come here.
      I understand completely when you said “it’s so hard to talk to people who don’t understand”. But here we do. So keep stopping in and keep asking questions.

    • Anonymous
      June 4, 2008 at 11:08 pm

      First welcome, Tara

      Definitely painful and hot feet. Definitely when sitting on a hard surface for any length of time (weird, eh!), the toes go bright purple.

      Most shoes are so painful after an hour or so I just have to take them off. I don’t get that nice feeling that you got when you took your ski boots or skates off, though…just more pain, but at least the shoes are off. The toes and foot are quite swollen – like they are retaining water, almost!

      I don’t get the blotchy legs, tho.

      It isn’t really fair – heels are pretty much out, even flats hurt – I have found that a good sturdy leather boot with a small, substantial heel is ok for winter. I wear my birkenstocks for the rest of the time, if I can. At least THEY don’t hurt too much.

      I thought it was just me with the whole purple toe thing. Scared my neuro one day after sitting in his office chair for awhile, then taking my shoes off!

      Take care and welcome to the site. Nothing is too strange here!