Does anyone else have Reynolds Phenomenon?

Dreamerlove
Dreamerlove Posts: 441 Member
Does anyone else have Raynauds Phenomenon? I started out having mine 14 years ago only in my ring finger. Now it has spread to my pinky and sometimes I feel the pain up my arm to my elbow. Mine is acting crazy lately and it feels like its spreading up my arm. Sometimes it hurts even when I'm not cold.

Anyone else live with this? I'd love to know your story and how it effects you. Any advice..etc. I know this forum won't attract many people, but I'd like to have some friends similar to me. :)

Edited for spelling.

Replies

  • Dreamerlove
    Dreamerlove Posts: 441 Member
    Bumpies.
  • sherrirb
    sherrirb Posts: 1,649 Member
    Do you mean Raynaud's?
  • NEVER HERD OF THIS BEFORE.
  • Do you mean Raynauds? If so, then yup, I've suffered for several years, but this winter has been particularly bad for it acting up, not much fun in winter really, can't stand the numbness and tingling!
    I get it in all my fingers and toes.
  • Dreamerlove
    Dreamerlove Posts: 441 Member
    opps yes I do!! I didn't spell check myself...sorry!
  • Dreamerlove
    Dreamerlove Posts: 441 Member
    Yes winter sucks so bad. How do you fight against it or keep them warm? Has it spread? My great great grandmother had it so bad she couldn't get out of bed. I would hate for that to be me one day. If I had health insurance I would seek medical attention.
  • sherrirb
    sherrirb Posts: 1,649 Member
    My teen son has Raynauds. For several years he complained of cold hands and tingling and ocassional numbness especially if he went outside without gloves on in winter. He would bring it up to the doctor at his regular check-ups but nothing was ever said about it. When we switched doctors, his new physician recognized it right away and gave us some information about it.

    We were told that there was a good chance he'll "grow out of it" but at least it isn't something super serious, at least right now.
  • Dreamerlove
    Dreamerlove Posts: 441 Member
    Sherrirb: That is crazy his doctor didn't help at first. From my knowledge he won't grow out it, Mine gets worse as I get older. Mine wasn't serious till this year when it started spreading and becoming more sensitive. Its so painful! I read that its caused because blood isn't going to those limbs that's why it turns blue and it is easier to get gangrene if we stay in the cold. Don't quote me I'm no doctor. :)

    Now when I'm walking from my parking lot to my apartment, I can't even hold things in my left hand because of it.

    To let everyone know, I'm not whining about this. I hate to whine I'm just sharing my experience, that way I don't whine as much to my husband too. lol.
  • lundii
    lundii Posts: 151 Member
    I have it as well.
    When I was younger it was bad... then I thought it went better.
    But this winter it got worse!
    All fingers except the thumb... and my toes are affected.
    And I think it's a weight thing. I lost about 60 lbs last year and I am at a BMI of 22,5 now. Last winter I was at a BMI of about 29-30.
    Perhaps it gets worse when you lose weight.
    Just my thoughts about it.
    And nevertheless it is NO reason to gain weight again! ;)
  • Athena98501
    Athena98501 Posts: 716 Member
    Yes winter sucks so bad. How do you fight against it or keep them warm? Has it spread? My great great grandmother had it so bad she couldn't get out of bed. I would hate for that to be me one day. If I had health insurance I would seek medical attention.

    No, it doesn't spread. The body parts effected vary by individual, but typically just include fingers, toes, ears, and nose. "Treating" it is optional, and it would be accomplished with a niacin supplement, or vasodilator (but not for most people, because those are blood pressure medications). Protecting yourself from cold is really all that doctors would recommend.

    It does suck, but there are many worse problems to have.
  • jenndymond
    jenndymond Posts: 117 Member
    I was diagnosed with this about 12 years ago. Stretching I find helped as did really good sets of gloves and mitts for winter ( I now have rabbit and fox fur mitts made in a small town above the Arctic circle!). This however was masking the effects of thoracic outlet syndrome. A problem that stems from the muscles and blood supply in your shoulders/neck. The effects were numbness in my hands which made the doc think it was raynauds (which I still have) but as it started spreading up my arms they realized it was something else.
  • Athena98501
    Athena98501 Posts: 716 Member
    My teen son has Raynauds. For several years he complained of cold hands and tingling and ocassional numbness especially if he went outside without gloves on in winter. He would bring it up to the doctor at his regular check-ups but nothing was ever said about it. When we switched doctors, his new physician recognized it right away and gave us some information about it.

    We were told that there was a good chance he'll "grow out of it" but at least it isn't something super serious, at least right now.

    You don't exactly grow out of it, but it is significantly effected by hormones, so it shouldn't be as much of an issue once those settle down a bit. Unfortunately for women, our hormones don't really settle down as much. My teens are when I noticed mine as well, though I didn't have a name to put to it until my twenties.
  • SH1969
    SH1969 Posts: 13
    I've had a mild case since I was a teenager. Doesn't really cause my any aggravation. Some see the discolouration and think the tips of my fingers are frozen.
  • mminor77
    mminor77 Posts: 313
    Poop. I came in here hoping to see some hot gifs of Ryan Reynolds. :sad: Sorry to hear about the health issues though...:flowerforyou:
  • sijomial
    sijomial Posts: 19,809 Member
    I suffer from it and find every winter gets a little bit worse (I'm 52). Mostly in my fingers/hands but my feet also suffer.
    Can even get really cold hands in an office environment now - sometimes just one hand which is really weird.

    Went to the Doctor last winter as I was finding motorcycling almost impossible - heated handlebar grips, inner gloves, winter gloves and handlebar muffs still not keep my hands functioning. Her advice was "try to keep your hands warm".
    Which really wasn't much help!
  • I'm 21, and I've been living with a more sever form of Raynaud's since I was 14. I have a really hard time in the summer, but especially in the winter, I have to limit my time outdoors (and when I am, I wear mittens with hand warmers in them, etc.)

    You should probably look into medication. I take a low dose of blood pressure medication that opens up my blood vessels so that my fingers and toes are warmer.

    Good luck!
  • girlinahat
    girlinahat Posts: 2,956 Member
    I only started suffering a few years after I turned 30. Mostly middle finger but outer fingers too. Used to have big problems with my toes but not since college years. Takes about an hour to get my fingers back, but being prepared and not letting them get cold in the first place helps

    I'm told avoiding caffeine helps. I have pretty bony fingers so there's not a lot of space for the blood vessels. It's no big deal, just annoying mostly.

    Oddly, despite regularly diving in coldish waters (between 8-17 degrees C /46-62 degrees F) I don't seem to ever suffer under water. I can only assume pressure at depth plays a part.
  • Athena98501
    Athena98501 Posts: 716 Member
    I suffer from it and find every winter gets a little bit worse (I'm 52). Mostly in my fingers/hands but my feet also suffer.
    Can even get really cold hands in an office environment now - sometimes just one hand which is really weird.

    Went to the Doctor last winter as I was finding motorcycling almost impossible - heated handlebar grips, inner gloves, winter gloves and handlebar muffs still not keep my hands functioning. Her advice was "try to keep your hands warm".
    Which really wasn't much help!

    When using a desktop computer, in a reasonably warm room, I notice it effecting my mouse hand. Circulation in general suffers with age (not calling 52 old), but a little cardio would help to counter that.
  • HalloweenGirl7
    HalloweenGirl7 Posts: 123 Member
    I don't know if I have it but I am suffering from chills that come from the inside and very cold hands, nose and feet.
    Especially nose and fingers. I cannot take things out of the freezer without pain and cannot tolerate the cold without gloves on.
    The pain can be excruciating!
    I don't have fingers that turn blue though.
    I also have fibromyalgia and just figured it was part of that.
    DR's don't always listen to your complaints if you have fibro or don't fit the textbook definition.
    They said since my fingers don't turn blue I don't have it.
    Anyway, cold really really hurts!
  • sijomial
    sijomial Posts: 19,809 Member
    I suffer from it and find every winter gets a little bit worse (I'm 52). Mostly in my fingers/hands but my feet also suffer.
    Can even get really cold hands in an office environment now - sometimes just one hand which is really weird.

    Went to the Doctor last winter as I was finding motorcycling almost impossible - heated handlebar grips, inner gloves, winter gloves and handlebar muffs still not keep my hands functioning. Her advice was "try to keep your hands warm".
    Which really wasn't much help!

    When using a desktop computer, in a reasonably warm room, I notice it effecting my mouse hand. Circulation in general suffers with age (not calling 52 old), but a little cardio would help to counter that.

    Take my word for it - 52 is old :wink:
    I do a ton of cardio (training for a 100 mile cycle ride at the moment) and it has no impact on how my hands react to the cold. Did a 25 mile ride yesterday in 8C temperatures and my feet and hands were like ice and very painful.
    Reynaulds isn't really poor circulation - it is an inappropriate physiological reaction to mild cold stimulus.
  • ratherbeskiing
    ratherbeskiing Posts: 847 Member
    I have it!


    I had to get boot heaters for when I downhill ski and I still get cold. I have a hard time walking/running in the winter. I get it in my toes and fingers.
  • Athena98501
    Athena98501 Posts: 716 Member
    I don't know if I have it but I am suffering from chills that come from the inside and very cold hands, nose and feet.
    Especially nose and fingers. I cannot take things out of the freezer without pain and cannot tolerate the cold without gloves on.
    The pain can be excruciating!
    I don't have fingers that turn blue though.
    I also have fibromyalgia and just figured it was part of that.
    DR's don't always listen to your complaints if you have fibro or don't fit the textbook definition.
    They said since my fingers don't turn blue I don't have it.
    Anyway, cold really really hurts!

    It's significantly more common in people with fibromyalgia, actually, and your fingers don't have to turn blue to be effected. Sometimes mine are blue, but sometimes they're just pale when it's going on. When mine was diagnosed, my fingers were only pale, but my blood oxygen reading on an effected finger was 47%.
  • Athena98501
    Athena98501 Posts: 716 Member
    I suffer from it and find every winter gets a little bit worse (I'm 52). Mostly in my fingers/hands but my feet also suffer.
    Can even get really cold hands in an office environment now - sometimes just one hand which is really weird.

    Went to the Doctor last winter as I was finding motorcycling almost impossible - heated handlebar grips, inner gloves, winter gloves and handlebar muffs still not keep my hands functioning. Her advice was "try to keep your hands warm".
    Which really wasn't much help!

    When using a desktop computer, in a reasonably warm room, I notice it effecting my mouse hand. Circulation in general suffers with age (not calling 52 old), but a little cardio would help to counter that.

    Take my word for it - 52 is old :wink:
    I do a ton of cardio (training for a 100 mile cycle ride at the moment) and it has no impact on how my hands react to the cold. Did a 25 mile ride yesterday in 8C temperatures and my feet and hands were like ice and very painful.
    Reynaulds isn't really poor circulation - it is an inappropriate physiological reaction to mild cold stimulus.

    I know it isn't the same thing as poor circulation, but poor circulation would contribute to it, as it would cause colder extremities, thus triggering the Reynaud's.
  • WarriorCupcakeBlydnsr
    WarriorCupcakeBlydnsr Posts: 2,150 Member
    I was diagnosed when we moved from Florida to Massachusetts when I was in my early teens. The doctor at the time, other than telling my mother to take me back to Florida, said that I needed to wear gloves and mittens when I was outside in the cold weather, wear heavy socks during the winter and every day I had to soak my hands and feet in hot water.
    As I got older (and gained weight) I didn't have that much of a problem with my hands but they do get cold easily. My feet stayed just as bad as they were, until I tore the flexor hallicus tendon in my right ankle, now when my feet get cold, my right foot will turn in at the ankle, the outside edge of my foot tilts up and my big toe arches back then everything locks up (agonizing pain and it takes a while to get it to release. Dr says that the tendon injury is affected by the reynauds (most likely because it's not just my toes affected by the reynauds, it's the whole foot for me) and it contracts when it's cold.
  • Dreamerlove
    Dreamerlove Posts: 441 Member
    I only started suffering a few years after I turned 30. Mostly middle finger but outer fingers too. Used to have big problems with my toes but not since college years. Takes about an hour to get my fingers back, but being prepared and not letting them get cold in the first place helps

    I'm told avoiding caffeine helps. I have pretty bony fingers so there's not a lot of space for the blood vessels. It's no big deal, just annoying mostly.

    Oddly, despite regularly diving in coldish waters (between 8-17 degrees C /46-62 degrees F) I don't seem to ever suffer under water. I can only assume pressure at depth plays a part.

    When I hike even in really cold weather, mine don't hurt either. I know hormones play a big part in RP, so my conclusion is, when I'm hiking I'm completely happy and at peace, so less hormones for RP...idk lol
  • Dreamerlove
    Dreamerlove Posts: 441 Member
    I don't know if I have it but I am suffering from chills that come from the inside and very cold hands, nose and feet.
    Especially nose and fingers. I cannot take things out of the freezer without pain and cannot tolerate the cold without gloves on.
    The pain can be excruciating!
    I don't have fingers that turn blue though.
    I also have fibromyalgia and just figured it was part of that.
    DR's don't always listen to your complaints if you have fibro or don't fit the textbook definition.
    They said since my fingers don't turn blue I don't have it.
    Anyway, cold really really hurts!

    My fingers turn blue but its very very faint. I wouldn't notice it if I didn't know it was there. Its my finger nails that really turn blue and most of the time they are painted.
  • cynthiaj777
    cynthiaj777 Posts: 787 Member
    I never knew this existed. However, when my hands or feet get cold enough, they get numb and burn. The last time I was in MA with my boyfriend, we were playing in the snow, and I had to go inside because my hands felt like they were going to break off. I had gloves on. He told me, "Your hands shouldn't feel like that....that's not normal." But I just thought that's what happens when body parts get cold!

    Maybe I have this! My lips turn purple easily.

    Mmmmm.....