Raynaud's Phenomenon, or why I have to leave
I suffer from primary Raynaud's phenomenon. In case you haven't heard of this, the short version is that my hands turn white and lose sensation when they get cold. Before you tell me to put on a sweater, know that my core temperature doesn't matter. I can be wearing multiple warmth layers, thick gloves, and sweating while outside and still my hands freeze up.
This winter has been particularly harsh, and my hands are now freezing up several times a day. That's not only uncomfortable, but it's a serious health risk. If I get stuck on the roadside or anywhere without the ability to rewarm my hands, I could lose the use of my fingers. It's also a quality of life problem: going outside at all these days is problematic, and it basically means that I don't go outside for any real length of time.
I've talked with my doctor about options, and the only thing beyond behavioural management ("keep your hands warm" and "try to relax") are drugs that are normally used for lowering blood pressure (calcium channel blockers, specifically amlodipine). My blood pressure is usually in the normal to low range (120/80 to 110/60), so there isn't exactly a lot of room there to move. They're also unlikely to completely solve the problem just make it more manageable, and they do have the potential for side effects. That said, we're going to try it anyway and see how things go.
This has made it literally painfully obvious that as much as I love my home in snowy Waterloo, with all of my friends and the tech scene here, I really can't live here in the winter. I deal well with heat: 32ºC is a lot more comfortable to me than 3.2ºC, let alone anything colder. The good news is that moving is very much a possibility for me. The flipside to my current situation as being unattached both professionally and romantically is that I'm in the perfect position to make changes. Call it "lifestyle design" or "conscious living", the idea is the same: I get to decide right now what shape I want my life to take.
So where do I go from here? That'll be the subject of more than a few posts here as I figure that out. Everything fits together like a jigsaw puzzle, with all of the parts contributing to overall happiness.
This winter has been particularly harsh, and my hands are now freezing up several times a day. That's not only uncomfortable, but it's a serious health risk. If I get stuck on the roadside or anywhere without the ability to rewarm my hands, I could lose the use of my fingers. It's also a quality of life problem: going outside at all these days is problematic, and it basically means that I don't go outside for any real length of time.
I've talked with my doctor about options, and the only thing beyond behavioural management ("keep your hands warm" and "try to relax") are drugs that are normally used for lowering blood pressure (calcium channel blockers, specifically amlodipine). My blood pressure is usually in the normal to low range (120/80 to 110/60), so there isn't exactly a lot of room there to move. They're also unlikely to completely solve the problem just make it more manageable, and they do have the potential for side effects. That said, we're going to try it anyway and see how things go.
This has made it literally painfully obvious that as much as I love my home in snowy Waterloo, with all of my friends and the tech scene here, I really can't live here in the winter. I deal well with heat: 32ºC is a lot more comfortable to me than 3.2ºC, let alone anything colder. The good news is that moving is very much a possibility for me. The flipside to my current situation as being unattached both professionally and romantically is that I'm in the perfect position to make changes. Call it "lifestyle design" or "conscious living", the idea is the same: I get to decide right now what shape I want my life to take.
So where do I go from here? That'll be the subject of more than a few posts here as I figure that out. Everything fits together like a jigsaw puzzle, with all of the parts contributing to overall happiness.
Yikes. That would have me relocating to a warmer place too!
ReplyDeleteWith my fibro, I feel your pain. Literally. I wish I could move somewhere warm.
ReplyDeleteGood luck! There are lots of warm places to move to. The great thing about technology also means you don't have to lose contact with all your friends who do love waterloo and the snow. :)
ReplyDelete[…] mentioned yesterday that I really can’t stay where I’m living now. The question becomes: where do I go? […]
ReplyDeleteHello.
ReplyDeleteI suffer intermittently from Raynaud's "Phenomenon", not the "syndrome" that is essentially a permanent condition (such as the type it sounds like you must suffer from - and I am sorry to know of your ongoing battle with something that can become SO INCREDIBLY PAINFUL.)
In my case, my symptoms appear seemingly at random, but when they do - they are sudden and severe - usually at least to the point of near-gangrenous digits (especially toes).
I live in California - in the Silicon Valley, where there's a beach town right over the southern & the western ranges - so typically a warm area i.e. we are currently under a severe drought alert/water preservation drill.
I TOTALLY know what you mean when you say that when your digits go cold and hit white, no amount of layering for warmth can bring them back. I used to soak my feet in one of those foot bath things - to NO avail. Inconsistently however, I also was struck by a Raynaud's episode while on vacation in Hawaii - where it is NEVER cold. Weird. The only thing that has EVER been successful at bringing my digits back - even on Oahu - was taking at least 2 morning doses of Nifedipine.
Do you ALWAYS have (at least) white (as opposed to blue or the dread full-blown gangrenous black colored) digits?
I didn't know it could be a permanent condition! No, my hands are not normally white. It takes at least so,e exposure to cold for it to happen, though sometimes not very much! How is Nifedipine working out?
ReplyDeleteLike I said, I usually only have to take about 2 morning doses and then the symptoms subside again until the next random appearance of the symptoms - which could be a year or a decade later, it has no pattern that I can track at all. My docs say its STRESS induced, and that theory seems to fit better than either theories of "too much jack-hammering or extreme cold".
ReplyDeleteI remember when I finally went in to the ER (like a week later than I should have) with NO idea why all ten of my toes looked like raisins and felt as if a wild dog had em gripped tightly in its jaws, the docs there were in awe and made a big ol' deal out of me - calling all the interns into my room by the head ER doc to see a medical phenom that they "would likely never see again in their careers".
If you haven't tried Nifedipine already,my kindred little digit - YOU MUST GO STRAIGHT TO THE ER(or your doctor) and get some ASAP. It has been THE ONLY reason that I still have all ten toes, I'm 110% sure of that. Good luck and kep me posted, please.:)