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Thread: update on my progress

  1. #1
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    Default update on my progress

    I was diagnosed today with raynauds... recently my fingers have been swelling up like cherries spreading from my fingerstips eventually to my palms. It feels like its burning, tight, tingling and feels like they will explode. Once it was so bad it looked like my fingers were bleeding... there were little red spots all over my finger tips and in some cracks in my skin it looked like blood was leeching out. Scared the heck out of me.

    Anyway... apparently white and purple hands arent normal either... or purple toenails. The swelling and redness is apparently what is happening after my hands have been severely cold, but I am so used to having freezing hands that I didnt notice that part. I am supposed to keep warm now lol : )

    I have my referal to a neurologist and a rheumatologist and she is getting all my blood work done up. She thinks the increase in severity of my raynauds may mean an increase in lupus activity?

    Anyway, I got to choose the rheumy I wanted (hope he's good) and now I need to look up a neuro too. : )

    Wish I could take my GP to brisbane lol

    My walking stick also arrived today... its actually really pretty :P Shiney purple. I will no doubt carry it around for a while before i get the courage to use it.

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    i am glad you are getting some medical care.
    hope they can sort out what is happenning, and offer medication.

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    Giggle, my fingers hurt just thinking about what you have been going through. My daughter has some fleece mittens with microwavable hot packs that fit in a pocket across the back of her hands. We found them online a few years ago. Maybe something like that would help?

    Congratulations on the neuro and rheumy referrals, and the lab work getting done in advance. I sounds like you made a lot of progress today. What did the GP say about your tremors?

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    Quote Originally Posted by giggle View Post
    I was diagnosed today with raynauds... recently my fingers have been swelling up like cherries spreading from my fingerstips eventually to my palms. It feels like its burning, tight, tingling and feels like they will explode. Once it was so bad it looked like my fingers were bleeding... there were little red spots all over my finger tips and in some cracks in my skin it looked like blood was leeching out. Scared the heck out of me.

    Anyway... apparently white and purple hands arent normal either... or purple toenails. The swelling and redness is apparently what is happening after my hands have been severely cold, but I am so used to having freezing hands that I didnt notice that part. I am supposed to keep warm now lol : )

    I have my referal to a neurologist and a rheumatologist and she is getting all my blood work done up. She thinks the increase in severity of my raynauds may mean an increase in lupus activity?

    Anyway, I got to choose the rheumy I wanted (hope he's good) and now I need to look up a neuro too. : )

    Wish I could take my GP to brisbane lol

    My walking stick also arrived today... its actually really pretty :P Shiney purple. I will no doubt carry it around for a while before i get the courage to use it.
    I want a purple one!!!

    Ok now to your post.. Lol Yeah, you need to keep your hands warm. Raynauds can be painful! I am glad you are going to the specialist. Keep us posted!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Im sorry you have this problem too. Its what sent me to a rheumy two years ago and when mine acts up I get ulcers all over my fingers, the last of which was really bad. Are they going to give you any medicine to help you too? I would make sure you always have gloves, and a hat. You lose a lot of body heat through your head. Keep bundled up when you can.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    Hi Giggle,

    Welcome to the Club mate and i'm not happy to hear you've got Raynauds as it's so bl..dy painful.

    What i can't understand why a Rheumo for your Raynauds it's Dermo's that mainly deal with Raynauds.

    When you get refered bloods will be done to see what degree you have it and to see if there's any skin connection being caused by it that's how my psoriasis was found, they check your eyes also.

    When typing wear some gloves i wear cotton ones but put some cream on first and it keeps your hands warm with the moisture, as you know i've got the extreme raynauds, to check how bad your hands and fingers are under your nails on the tips of the skin if they're purplish/blue that's a strong sign and from the edge of your nails up wards if you have a deep set look in them that goes across your nails that's another strong sign plus redness around the edge of your finger nails ontop and when you type it really hurts bad and your fingers swell out terrible and go fire red but when they do go cold you get the feel as you've got total frost bite, i've told my Dermo if he chopped off two of my fingers i definitely would'nt miss them but you need to keep warm and you'll notice your body heat changing and swapping clothes can become quite a nightmare mate where summer is mainly concerned.

    Here's a great link for you Giggle www.raynauds.org.uk/

    Hugs Terry xxx
    Last edited by Peridot20_Gem; 06-27-2011 at 08:44 AM.

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    I too have raynauds giggles. Since they put me on lyrica I must tell you the pain is not as nasty. It was a side benifit I guess. Glad you are getting help!

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    Hmm... maybe its a good time to ask... does anyone else here suffer from what appears to be desensitizing to pain? I've been dealing with the symptoms of raynauds for years and never once thought to tell a doc, it wasn't until it seriously appeared that blood was coming right out of my skin that I decided it would be a good idea.

    My desensitizing is so bad... that I was in labour and dilated 8cm and didn't even know that those weird feelings in my abdomen were contractions. They didn't hurt the way people had reported. I had a 40cm+ tumour blocking my bubs way out... both me and my baby would have died... if a little bit of blood hadn't appeared that made me concerned!!! So I went to my GP. The contractions had started near a week before I made it to hospital! By then the docs were raging mad with me, telling me I have put my life and my babies life at risk. But I didnt know!!

    Apparently having blood clots in your heart and lungs is extremely painful as well. Yet I barely felt a thing.
    And although I have joint pain in every joint in my body, I dont take pain meds. Its more the stiffness that gets me down. Im not saying the pain isn't significant... I just... dont care? Or dont register?
    Its strange... I know there is pain. I feel it. But I ignore it. What ever reason I do, it scares me. Because one day I could ignore the signs of something serious and end up dead for it.

    I've used separated shoulders to lift 15kg boxes, walked on broken feet, i currently have an injured achiles I have no intention of doing anything about... : /

    Anyone have any ideas or am I just a whack job?

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    oh and I got those two days off a week : )

    YAY!

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    Hi Giggle,

    I can't desensitize to pain?...you must have some right control over pain when it hits you mate because that takes some controlling and that's what desensitiization is having the control over pain and relaxing to it.

    You put yourself and your baby at risk as the doctor's put it because your body can control pain and affects quickly, christ i wished i got that.

    It's a condition where your mind can easily bloke things out it's good in one way but i would say dangerous in another, such as the episode of you and your child.

    Giggle your not a whack job mate, i'll add info below on it and it's a form of control. xxx
    Last edited by Peridot20_Gem; 06-27-2011 at 03:53 PM.

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