I'm F-f-f-freezing
I don't think I've ever explained what Reynaud's Disease is, so, since I'm sitting here, in a room with the heater up to 85 degrees, and the room is at 90, and I'm sitting under 2 electric blankets, an afghan and a wool blanket, wearing two pairs of pajamas and a sweatshirt, thinking about it, I thought I should write about Reynauds.Ok, so Reynauds Disease is a little different from Reyndauds Phenomenon, so I'll talk about both, but what I have is the Disease. So, what happens is that the reynauds patient is really sensitive to cold. We can, literally, get frostbite from sitting in front of a draft. It affects mostly your extremities: fingers, toes, nose, etc. When they're exposed to cold, the extremities go into spasm from the blood vessels constricting. It's pretty painful, I can tell you, just like frostbite would be. So, your spasming and then the color changes, just as if you were out in the snow for awhile without your gloves on. They go from white to blue to red. Depending on the type of attack and how long it lasts, is how your body reacts. For instance, I tend to get blue and white for long periods of time when I'm having an attack. My fingers stiffen up, as do my toes. The end of my nose starts to prickle or burn. As a matter of fact, it's very possible, if the attacks are bad enough and frequent enough that the patient will actually get ulcers on the skin and that can lead to gangrene, just as if she was suffering from frostbite, because, in essence, that's what it is.
So, I have to stay covered up all the time. Now, since I've been on the duragesic patch, I actually have been warmer than I have in years. That's also why I really loved the climate in Austin, Texas. The combination of heat and moisture really helped. I still had Reyndauds and the attacks, but not as often and not as severe as I've had since I moved back to Northern California.
Women are 3 times more likely to have Reynauds than men. People in colder climates experience it more often than their counterparts in warmer climes, however, I would like to say, imho, that I think that it bothers people who have it more if they live in cold climates, rather than people who have it and live in warm climates. When I lived in TX, I didn't even use the air conditioning on hot days, except if I knew my family was going to be home. Then, I would just put on more clothes and wear sweaters. Another thing that's wonderful is a hot tub. That helps my stiff limbs so much when I'm having an attack. I'd go dip in the hot tub and then jump out and drive back to the apartment and jump into my hot electric-blanketed bed. I was a happy girl. lol
But, tonight, sucks, because my legs are so stiff. I can't get warm. I've taken two hot showers and am under TWO electric blankets, plus all the other blankets, my sweats and jammies, a sweatshirt, etc. and I'm still FREEZING! What the hell kind of insanity is this?
So, is there anything that can be done? Yes, there is. This is something none of my doctors ever told me about and I guess they've known about this medication to treat Reynauds for 10 years. Shame on all my previous doctors! I"ve been diagnosed with this disease for about 10+ years. I've had it probably since I was a teen, becuase when I look back at pictures of my summer vacations, I always am wearing a sweater. My mom used to tell me to take my sweater off when we'd have guests or just when she was hot, because I made her feel hotter! I distinctly remember that. So, I know I've had this a long time. It is really hard on my skin, too. I hate it. The treatment is a blood pressure medication to open up the blood vessels. It's called a vasodilator. Unfortunately for me, my doctor doesn't think it's wise for me to go on that kind of med, because it would make my migraines even worse than they already are. Wah!
Anyway, I said I'd tell you about the phenomenon, too, right? The difference is in what causes the disorder. The disease symptoms can be caused by simply reaching into the fridge or holding your hands under cold water (which I never do. It's just too painful). It can be caused by sitting in a draft, or not paying attention and letting my body get too cold. It can also be caused by stress. I think this attack is a combination of cold and stress. I've been in hell the past two weeks with my migraine attacks. I can't get them to calm down at all. But, it's a little better, today, so of course, I can't just have a nice day and leave it at that, right?
The phenomenon produces the same symptoms, but is caused by an underlying disease like lupus, scleroderma, rheumatoid arthritis, carpal tunnel syndrome, smoking, injuries and certain medications. Reynauds is considered an auto-immune disease, which is why if someone sneezes within ten miles of me, I'll catch bronchitis or at least a bad cold that lingers for two weeks! Oy vey!
posted by Jessica @ 1:28 AM
46 Comments:
That sucks. I have something like it too, although not as bad. Fortunately (I guess) mine seems to be caused by migraine. If I can ever get my chronic migraine problem under control, I think it might go away and I can finally warm up. Summer cannot come too soon.
I'm surprised you did not say anything about the calcium channel blocks, like verapamil and nifedipine. They are the standard drugs to try for Raynaud's. As a bonus, they can also help migraine. Verapamil really warmed me up when I tried it. (But it quit working for migraine and made me really depressed, so I had to ditch it.) You simply must try calcium channel blockers if you haven't already.
I sometimes take a big dose of magnesium (500 mg) for migraine, and it temporarily warms up my skin. Unfortunately, it only works once or twice and then I have to wait several days for it to work again. Still, it is cheap and pretty safe.
Alpha blockers supposedly sometimes help. I would try other things first, because they may cause problems with the iris (colored part of the eyes). The research on this is too new to know how bad this side effect is. Or even if it is real.
Beta blockers make Raynaud's worse. That was certainly my experience. So if you take one, find a substitute.
You doctor is right about nitrates (drugs like nitroglycerin). They are famous for causing an awful throbbing headache, even in folks who don't normally get migraines.
In theory, ACE inhibitors and ARBs may help.
Hmmm... Just found some web pages that say sildenafil (Viagra) may be good for Raynaud's. It sure would be expensive.
Jessie,
Colin here. I have read through a bunch of your blog, and have had to stop now. It's too hard to read through the tears. I am so sorry for the pain you are experiencing. I cannot begin to imagine living with chronic pain on the level that migraineurs endure.
My lifespan is short, and I will live the rest of it with diminishing abilities, but fortunately pain is not a big part of the picture for me.
Thank you for explaining Reynaud's so well. I have heard of it, but never knew the seriousness or intensity that it could reach.
And thanks for the lovely comment on my blog. Did you by any chance get as far back as the Dec 21 entry?
http://www.livejournal.com/users/colinportnuff/12662.html
Have you pursued any alternative treatments? I have no idea what if anything they have to offer. I tried acupuncture and homeopathy with limited short-term success for my situation.
Best regards, and with deepest empathy,
Colin
www.livejournal.com/users/colinportnuff
Oh my, I'm sorry you have to go through all that!! (((((sending warm Hugs))))))
I have times when I get so cold and can't warm up (yes I'm in FL, quit laughing ::wink::) but it's not a contant thing. I'm sure it has something to do with either my fibro or lately, my BP medication.
Angel,
You're right. Fibro can have reynauds phenomenon, and the blood pressure meds can cause the phenomenon, too. Just wear socks. :)
DN, thanks for the advice. I can't take the calcium channel blocks, because it conflicts with something else, I guess. And magnesium causes other probs for me, so I'm just stuck. lol But, you're so sweet to recommend those things. You know what else is good, but really messy, is rubbing cayenne pepper on the feet. That makes you warm. Weird, huh? lol Of course, I think Vodka would probably work, too. Too bad I take so much medicine. No alcohol for me. I'd have a good excuse to drink though, wouldn't I? lol
Colin, I'm so honored that you left a comment on my blog. Thanks for visiting! I did read the Dec. 21st entry and you'll see my reply to it on my blog, here, on Wednesday. I've always been the kind of person who pursues alternative therapies: holistic medicine, massage, accupuncture, accupressure, chiropractic, etc., first before going to Western medicine. So, I did look into everything and anything before I finally went to a doctor about this. I'm the type that has to be dragged kicking and screaming to the doctor's office. It really bugs hubby. lol Thank you for the suggestion, though. I appreciate the thought.
Take care, guys, and thanks for reading my blog. :)
Ooh! Saying "cayenne pepper" reminds me of something I forgot.
You can get capsaicin cream from the drug store (Capzasin is the brand I remember). Capsaicin is the chemical that makes peppers hot, but they put just a tiny amount in the cream. Works like a charm for warming up the skin. It's colorless and disappears after it dries.
Here's hoping that this year treats you better than the last.
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