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I don't know if I'm just being dramatic or if this is normal, but I'm totally miserable almost constantly. I have pain all over my body since winter started. My movements are stiff and it's just hard to move at all. The only time I'm not absolutely in pain is when I'm in a hot shower, but my toes are still purple. I can hardly sleep at night with my 3 blankets, and I know being under stress is worse (dealing with a broken heart-- but the reason isn't important here).
I'm not really asking for advice for how to minimize it because I know I'm going to be moving to a warm climate asap, but just asking if this is normal
Have you seen your doctor? I don't think it's normal for your toes to be purple all the time. Usually the cold will turn them white, then sometimes blue or purple, but they go back to normal after that.
Have you seen your doctor? I don't think it's normal for your toes to be purple all the time. Usually the cold will turn them white, then sometimes blue or purple, but they go back to normal after that.
Yeah, he diagnosed me with Raynaud's when I went to him for some other problem, he's my rheumatologist. When he asked to check my toes, he did was like "Your feet are even worse [than my hands], they're purple!!"
He did offer some medicated lotion and I know I can take calcium blockers to reduce the attacks. I don't like being on medication but I might break down while I'm still living here and get them soon... I was on 4 medications at the time he offered, but I didn't want even more to take. That was last year and the Raynaud's seems to be worse this year.
Pernio, also known as Chilblains, can cause purple fingers and toes, too. I have both Raynaud's and Pernio. I think of Pernio as an extreme version of Raynaud's. My Pernio was diagnosed via biopsy. It's very painful and can lead to blistering and sores.
I wear two pairs of socks at all times in the winter and even wear those stretchy little one-size-fits-all gloves in the house when I'm sitting still, like reading or working on the computer. It helps. And I use way more than three blankets on my bed - over my feet, that is. I fold several blankets several times and place them over just my feet. I just counted the layers - 21!! You read that right - twenty-one. That's what it takes. It still isn't a complete solution but it helps.
I'm in Northern California. My house is kept at 72 in the daytime and 66 at night. And I still have issues. I don't blame you for leaving Michigan! I'd be in agony.
Since you're seeing a rheumy (as am I), I'm surprised he didn't consider the possibility of Pernio as it can be a sign of Lupus. In my case, I don't (so far) have Lupus so Pernio can be a stand-alone problem. There are some really good photos of Pernio on the internet . . . you might want to take a look (and read about it) so you can see if your feet look like that.
Since you're seeing a rheumy (as am I), I'm surprised he didn't consider the possibility of Pernio as it can be a sign of Lupus. In my case, I don't (so far) have Lupus so Pernio can be a stand-alone problem. There are some really good photos of Pernio on the internet . . . you might want to take a look (and read about it) so you can see if your feet look like that.
Ah yeah... actually he's been giving me blood tests every few months to watch for Lupus development. I do have one antibody that's "borderline abnormal" as he says, and it's the one that if fully developed, will be Lupus.
I'm in Northern California. My house is kept at 72 in the daytime and 66 at night. And I still have issues. I don't blame you for leaving Michigan! I'd be in agony.
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I actually feel a lot better now.... I feel more normal now. I am in agony a lot, my dad just thinks wearing slippers is the answer -_- he'll never understand how bad we feel, when I complain about how bad it hurts, he says, "Oh, it does not!"
Ah yeah... actually he's been giving me blood tests every few months to watch for Lupus development. I do have one antibody that's "borderline abnormal" as he says, and it's the one that if fully developed, will be Lupus.
Oh good. I'm glad he's on it. You sound just like me . . . I have so many "markers" and we're waiting for that one test that crosses the line. Maybe it will or maybe it won't.
I just read your post about moving to Florida. If you think of it, could you come back here after you've been there awhile and let us know if your Raynaud's improves? I've had several doctors tell me I should move to Florida or Hawaii but I'm not anxious to do a major move.
I haven't gone for the meds, either. I tend to react badly to meds and don't want to complicate matters. And I agree about people not "getting" us. Very frustrating! You're not alone in that.
Oh good. I'm glad he's on it. You sound just like me . . . I have so many "markers" and we're waiting for that one test that crosses the line. Maybe it will or maybe it won't.
I just read your post about moving to Florida. If you think of it, could you come back here after you've been there awhile and let us know if your Raynaud's improves? I've had several doctors tell me I should move to Florida or Hawaii but I'm not anxious to do a major move.
I haven't gone for the meds, either. I tend to react badly to meds and don't want to complicate matters. And I agree about people not "getting" us. Very frustrating! You're not alone in that.
No way, I'm never coming back here once I move. My Raynaud's isn't the only reason I'm moving, I hate it here. I definitely just want to move to FL and stay forever.
No way, I'm never coming back here once I move. My Raynaud's isn't the only reason I'm moving, I hate it here. I definitely just want to move to FL and stay forever.
LOL! No, I meant come back here to this forum/thread and let us know how your Raynaud's is faring in your new climate. Yikes . . . if I left Michigan I'd never go back either. No offense to any Michigan residents meant, just the climate. I'm sure it has its merits, just not for me (or you).
No way, I'm never coming back here once I move. My Raynaud's isn't the only reason I'm moving, I hate it here. I definitely just want to move to FL and stay forever.
I think the other poster meant to come back to this forum to update about your condition, not come back to Michigan.
About weather and Raynaud's, I live in South TX and we may have several weeks of weather cold enough to cause me some discomfort. I have to wear gloves if I ride my bike early in the morning from December through February, but that's really it. My mother has trouble whenever the temperature is lower than 50, but still, that's not so many days out of the year. Her Raynaud's has gotten worse as she's gotten older, so maybe mine will too.
Have you seen those little chemical warming packets? The most common brand is Hot Hands, and they make some with adhesive that you can use for your feet. They stay warm about 8 hours. That might be a good way to feel a little more comfortable until your move. I use the ones without adhesive in my jacket pockets if I'm going to be out in the cold, that way I can just stick my hands in the pockets to feel more comfortable.
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