Primary Raynaud's Syndrome

Hi I'm new here...

18 years old and was diagnosed with Primary Raynaud's last year, I constantly feel cold, my whole body shakes, my feet, knuckles, wrists, hands and lips turn blue, this occurs inside or outside the house and in all seasons of the year. I'm really struggling with dealing with this. I cannot seem to find a medication that works, I suffered severe side effects from Nifedipine and Losartan Potassium. From dizziness to migraines and stomach and kidney pain.

12 Replies

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  • Hi

    It can be daunting at first getting used to it all. I hate to state the obvious but do you dress warmly enough (so that was my issue when I was younger because no one had explained to me quite the lengths I would need to go to!). Layers like loads and loads of layers! I wear strap top, t shirt, jumper, coat, leggings and jeggins then my coat and I wear one wooly pair of gloves under my big ski mittens. I then wear my wooly hat and scarf too and that's just a 'normal' not cold day on an excessively cold day I just add more and more layers. Indoors I live in fluffy onesies and blankets. I also have gloves for every occasion - gym gloves, outside gloves, fridge gloves, bed gloves, summer gloves - you get the drift lol. I have found its a lot of trial and error. Oh and I have yet to find out how to stop the lips going blue. Happy to answer any specific kind of questions if you can think of anything ?

  • Hi i wear many layers of clothing, I wear under armour under 2 tops, 2 jumpers and a jacket, I try gloves, I have worn 2 pairs and still had an attack. My attacks also occur inside the house or in a building when sitting on a couch, there is no warning signs apart from turning cold all of a sudden. I really struggle with knowing being outside is a challenge, I'm a very active person I love playing sports and walking, but this is harder than ever with always being so cold, the pain can sometimes be to the point of tears.

  • i can very much relate to that - I have many times had tears rolling down my cheeks from the hurting. It can be so hard some times can't it! Have you tried any medicines for it yet ? There is always that option.

  • Hi, ask if you can be prescribed amlodipine, it works for me.

  • what was your symptoms, if you don't mind me asking?

  • Hello. I took nifedipine a long time. As the Raynaud's got worse they switched me to aggrenox. It is a type of blood thinner(as it has aspirin in it as well) to allow for circulation. Helps your blood flow to your hands and feet especially. I take it twice a day. No side effects. See if you can try that instead. The dosage is 25mg/200mg. Keep me informed.

  • Try voltaren cream on fingers..over the counter in Canada..prescription in u.s.

  • Is it over the counter in UK or prescription?

  • hi

    who are you seeing for this? is it just your gp, rhumie or a.n.other? Like you I have it whole body and using the very old fashioned diagnosis I also have it primery. I tend to just stick to red or white with just the hint of blue sometimes and this is multiple times per day, any part of my body, even the insides.

    Raynauds is vascular and can then and therefore attack all other parts I found a rhumie lacking in their knowledge of the vascular system and the stuff they prescribed, the one I went to diagnosed Raynauds with fibromyalgia type systems. If you can try to see a vascular specialist if not the next best is a clinical cardiologist because they have to know about blood flow.

    Im on 300 mg of diltiazem and that seems to even me out plus a few others, some more pointed to my heart because l get it there as well.

  • I am only seeing my GP, I asked for a referral but was denied the opportunity, I am only a teenager and I am really struggling with coping. It gets to the point of 4/5 attacks a day indoors or outdoors.

  • These things come and go in cycles. Keep warm and have hot drinks. Get yourself gloves with silver thread and other warming things from Scleroderma and Raynaud's Association.

  • I have the "silver" gloves from Raynaud's Association. I wear them inside an ordinary pair of mittens and they certainly help. There's also a Hotrox - a little handwarmer gadget - available on Amazon and the Raynaud's Association. You charge it up on your computer - brilliant. I keep one in my handbag just in case it's a tactile little disc that heats up quickly when switched on.

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