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  • #6395
    Bbicbbic
    Participant

    Hello Everyone, I am so glad I found this website. I have suffered from Primary Raynaud’s for about 20 years. It started in my early teens and I can even remember the first attack! Up until about 5 years ago, my attacks were nothing but a bother. I paid them no mind and went about my business. I knew I had some disorder, but never felt it important enough to actually go to the dr for it. I was not officially diagnosed until about 5 years ago, when I had a HORRIBLE attack. We had a really cold winter (which is uncommon where I live) and my feet got so cold they hurt. So I instinctively put them in front of the heater to warm them quickly….BAD idea. This created Chilblains and my feet have never been the same. 🙁

    At that time, they became terribly swollen and inflamed(it hurt to wear ANY type of shoe), yet they were so so cold and purple/blue/black that it was scary (not only for me but also for my dr as I saw and heard the urgency in his face and voice). I was tested up one side and down the other, including ultrasounds and an arteriogram to rule out blood clots. Although I did have a slightly positive ANA, nothing else comes back abnormal so it has been ruled as primary.

    After this happened, my feet are very sensitive to both hot and cold, which is such a delima. When I exercise or spend too much time outside in the hot summmer, they become SO red, swollen and BURN so badly that all I want to do is soak them in ice to cool them. But I know that I can’t because that would create a Raynaud’s attack. Anyone else experience this? If so, any helpful tips are appreciated.

    This last winter was extra cold and I battled a horrible attack once again, which again included the chilblains (fortunately this time, I knew what to do and no purple or black feet, thank God). Thank goodness I can work at home because I did not leave the house for a few weeks. Funny though, even with staying inside and wearing multiple layers of socks and shoes 100% of the time, I still had an attack. I mean, literally…I knew the cold was coming and I planned for it…stocked up on groceries and planned to not leave home until warmer weather came back. Could this attack have been due to change in barometric pressure? Similar to migraine triggers (which I also have, btw)?

    So now I am pursuing some type of treatment that would regulate my circulation without creating swelling and inflammation as a side effect. I am looking for REGULATION, not something to simply open my vessels and keep them open, because that creates swelling which I already have enough of. I tried calcium channel blockers already and had an awful reaction — skin rash with itching and almost passed out while sleeping (yes in the middle of the night, by the grace of God, I woke up just in time with cold sweats and hardly made it into the other room where the others were sleeping in my home). I have also tried acupuncture, which does definitely help, but the effects only last a couple days or so. Finally, I take many supplements and magnesium taurate seems to do a nice job, but to get a therapeutic dose, the gastrointestinal affects are just too hard to deal with (I need about 1000 mg per day and I have IBS-C/D). So any suggestions are welcomed!

    Finally, I am wondering if hormone levels can make Raynaud’s worse? Being female, I know my hormones are off at least some due to saliva testing that I had done and the night sweats I have.

    Thank you for promoting Raynaud’s awareness. It is awesome to finally see something for Raynaud’s backed by doctors in the US. Everything I have seen up until now has been from the UK where Raynaud’s and Chilblains are very prevalent. Sorry for the long post, I guess I had alot on my mind today.

    #6396
    SarahSarah
    Moderator

    Hi bbic
    Thanks for joining the forum and telling about your experience with Raynaud’s. You ask some good questions. Many Raynaud’s sufferers complain of being sensitive to hot and cold due to irregular blood flow. I have found that nifedipine really helps with this.

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