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New to Raynaud's Phenomenon

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edybee
edybee

Hello everyone,

I have just been diagnosed with having Raynaud's. I hear a lot of you guys having it on the hands but mine is on my toes (at least for now). I started seeing and feeling a small blister on my little toe which I thought was my shoes at first. As a female I am all to familiar with shoe blisters and after a week I realized it was not that. It became painful, swollen, then itchy. Soon I noticed it has spread to the top of another of my toes on my left foot. My right foot seemed to be ok until I started to get these freezing, numb, painful, burst on my toes on my right foot. It would hurt so bad while driving and then trying to walk on it. I finally went to the doctor a, podiatrist, who right away saw my feet and said it was Raynaud's. It has been at least 3 weeks since the blister on my little toe and it has not gone away, nor has it opened up, just swells up then it goes down, but very tender to touch making it hard to exercise. So depressesd right now. No medication was prescribed until I see a rheumatologist to see if there are other underlying problems that could have caused my Raynaud's.

Does anyone have a similar experience? Has anyone tried acupuncture to help with the blood circulation?

0 likes, 20 replies

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  • tim24983
    tim24983 edybee

    Posted

    Raynauds is your body overreacting to the cold. When the bloodflow is shut off - it is off!  You must artificially re-warm the area ASAP. Damage will srtart in 30 minuted and serious damage will occure after 1 hour if you do not re-warm the area. The more you allow this to happed the worst it will get.  Personally I have not found any drugs that help. ...and there is NO part of me that is not affected.  I did not know how serious it is.
    • edybee
      edybee tim24983

      Posted

      I live in Houston, Tx so it is not that cold which is why I was surprised. My hope right now is to heal this sore. How often do you get these episodes?
    • tim24983
      tim24983 edybee

      Posted

      My critical temperature is 80 deg. F.    For most people it is 61 F.   I just came back fron the kitchen with a cold glass of milk. Both hands are now blue/gray.   It is continuing to get worst.  Normal durgs include, calcium channel blockers such as Nifedipine, or alpha blockers such as Daxazosin, or on to IV drugs.
    • edybee
      edybee tim24983

      Posted

      You are on those drugs? do they work fine for you?
  • Jan999
    Jan999 edybee

    Posted

    Hello edybee. I get it on my toes but I also get chilblains which is what your blisters may actually be. They are commonly found in people who have Raynauds.
    • edybee
      edybee Jan999

      Posted

      How long do they last? and what has helped you? I've had mine for at least 3 weeks making it very hard to do my normal activities.
    • Jan999
      Jan999 edybee

      Posted

      When I get them they can last all winter, in fact last year I had one in August so I decided to mention it to my doctor. He started to prescribe me Nifedipine and for the first winter in about 45 years I haven't had a chilblain. They were sometimes so painful I couldn't get my shoes on and when I did it was too painful to walk! There is some creams you can buy over the counter at the chemist but they don't prevent them they just ease the pain. The problem is if they break and you are left with an open sore. Then you need to see a doctor.
    • edybee
      edybee Jan999

      Posted

      Well I'm hoping they can give me something for the chilblains when I go to the doctor on Tuesday. I will keep ya'll informed.
  • tim24983
    tim24983 edybee

    Posted

    You indicated that you still feel pain (that is good). In my case I have damage it- to the point of nerve death, which feels like a second degree burn, excepth the pain lasts for 4 months. (like Diabetic nerve pain)... I am forced to remain in my bedroom where the temperature is over 81 deg. F.  - all the time.  I have the heat on even during July and August
    • edybee
      edybee tim24983

      Posted

      Oh no. Are you able to work? How did it get to that point?
  • kristyk
    kristyk edybee

    Posted

    Hi, I have had Raynauds and was diagnosed in 1990. I was given an Ice Submersion test on the hospital. A vascular doctor asked me to put my hand in a big tun of ice and keep it there as long as I could. To try as hard as I could to keep it there. I COULD NOT STAND THE PAIN! IT HURT LIKE ---I OLY DID IT FOR 5 SECONDS. AND MY FEET GOT COLD ALSO. THATS THE SYMPATHETIC NERVE REACTION. AFTER THAT HE CHECKED BLOOD PRESSURE, TEMP. ETC.WE WAITED FOR MY HAND TO COMR BACK TO NORMAL TEMPERATURE. IT TOOK 47 MINUTES. DUTING THE HYPOTHERMIC LIKE FEELING MY HANDS AND FEET WERE BLUE ALMOST PURPLE LIKE. WHEN I CAME BACK TO NORMAL CLLOR DID ALSIO. THE DR.said Yes you have RSYNAUD. We have small blood vessels and when they constrict the blood does not circulate properly. It happens to me even if its 90 degrees. I have taken verapamil 40mg 2 per day since first diagnosed. It is a calcium channel blocker,beta blocker and no problems at all.It helps cto dialate the blood vessels. I have to try to not get cold or it hurts so so bad. I wear gloves to just go thru frozen n food section in grocery store. I have had this for so long you just need to watch and love stem to your body. Don't drink caffeine it constricts blood vessels. I live with my heating pad. Also I will run my hands under faucet with warm water to thaw them out. Never use hot hot water you can damage yourself because you can't feel the heat so be careful.

    Hang in there. You will get thru it.

    God bless you.

    Kristyk

    • tim24983
      tim24983 kristyk

      Posted

      Hi, I am sorry to say that it keeps getting worse. I currently (if I wish to stay alive) stay in a room over 81 degrees (26 C).  You MUST warm yourself up. Without blood flow your body will not re-warm itself. If you wait 30 minutes.. you will start to have damage.  If you wait 1 hour...you will have premanent damage.  To Edybee, I did not know how serious it was, and now I have had nerve death in my feet.  I cannot work anymore.
    • kristyk
      kristyk tim24983

      Posted

      Your so rich Tim. I have nerve damage on the tip of my thumb. I know that sounds not an issue but it really is. So many others have lost hands, feet, fingers and toes. It definitely a serious problem we have to deal with daily.

      God bless you

      Kristy Tinsley

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