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Old 01-12-2001, 07:12 PM   #1
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Ann S HB User
Post Raynauds' phenomenon????

Hi,

I think I just diagnosed myself with this - the Dr. couldn't figure it out!! Anyway, after doing research on it, I have a lot of questions before I try any of the treatments. Please respond if you have any knowledge about or experience with this condition.

Thanks, Ann S

 
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Old 01-13-2001, 09:14 PM   #2
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ordway HB User
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hi, I work with folks with Raynauds, what are your symptoms? What climate do you live in? Is it your hands or hands and feet? WHat are you trying for treatments? There are several good websites , try the *********** search engine jsut type in Raynouds
lauri

 
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Old 01-14-2001, 08:25 PM   #3
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Hi to a fellow Minnesotan!



Thanks for answering! It only started about 2 wks. before Christmas.... my fingertips freeze or turn white(mostly my middle finger on my right hand) from cold. Afterwards, it often turns blue & hurts. I bought heavy mittens, warm the car up, and it still happens even tho it's only about a 5 min. drive to work. I'm going to be real honest with you, (so please no lectures) I'm a smoker. Anyway, I already had an appt. with the Dr. scheduled because of a severe carpal tunnel episode. I've assumed I've had that for yrs. and it was only sporadic that it bothered me, but this time instead of just waking up cause my hands were numb & hurting, there was severe pain all the way to my elbows. Also, some of the numbness would still be there at least an hour after being up. The Dr. prescribed anti-inflamatories & told me to wear braces at night for 2 wks. I quit after about 10 days cause my hands started swelling so much. At the same time, I told the Dr about this new freezing thing, and he said it was poor circulation due to smoking and that if I didn't stop....he's seen people that have had to have their fingers amputated. No matter what I tried, nothing helped keep them from freezing (even when it was only 41 degrees one day). I braved going back to the Dr. & said that even tho I did realize that smoking is very bad for circulation (and everything else), it seemed that this came up rather suddenly, and if it was only the smoking, it should have been more gradual. Before that I used to only wear thin leather gloves, or none at all, and didn't have a problem. I ended up in tears and he said there was nothing that could be done till I quit smoking. Well, I've spent a lot of time worrying and doing research since, and the things I've found out about Raynauds' fit perfectly. Besides the smoking & carpal tunnel, I practically live on Sin-u-tab, because if I don't, I get sinus head aches & ear infection from the congestion I have. Years ago, I was tested for allergies, but they could never get the dosage right for the shots so I gave up on those. It seems to be more constant in the winter because we have forced air heat. I can't seem to find a decongestant without the pseudoephedrine in it. (My reseach listed that drug, smoking, caffine, carpal tunnel, etc. as some of the causes of the one form of Raynauds'). I know I need to quit smoking, but I don't think he has the right to withhold treatment till I do. The onset does seem to coincide with the carpal tunnel episode and my increase in the use of the sin-u-tab.



I've read about the home treatment with the water in a cold & hot room etc. The way I figure that, it would take about 1 1/2 hr. every other day to do, and with work, it's a little hard to squeeze in. I would even find the time, but I didn't think it would work unless they were spaced throughout the day.



Any advice or help would be sooooooo much appreciated. Sorry this is so long, but I thought the details would help. Thanks again, Ann

p.s.I'm sorry, but I'm about to make this longer. I just went to *********** & was reading more info. They mentioned some skin conditions & gangerine. For almost a yr., I've had some areas on my nose that keep peeling & some sores on my lips. The Dermatologist used liquid nitrogin on them & it didn't help (left a scar on my lip). Then he said he had no idea what it was and gave me a sample of cyclocort..didn't help. Also, last summer, the skin on the ends and around the cuticles of some of my fingers got really gross looking. No amount or kind of lotion helps. It gets so thick and awful that I've even trimmed some of it off with a nail clippers (I did show this to the reg. Dr. too). Could these things be related? I have an apt to see a different Dermatologist on Tue. Should I mention this or will she think I'm crazy? I feel like a hypochondriac with all the things going on the last few yrs.(I'll spare you the rest tho, cause I don't see a connection.)

[This message has been edited by Ann S (edited 01-15-2001).]

 
Old 01-27-2001, 05:50 AM   #4
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Hi, thanks for the response. Since my last post, I have been diagnosed with secondary Raynauds because my blood test for connective tissue disorder was positive. They did further blood tests to determine which one, but they were negative. I'm being referred on to a rheumatologist with the hopes that he can figure out what connective tissue disorder I have. The waiting is killing me cause my symptoms seem to be getting worse. I now have open sores on my gums, my arm hurts all the way to my elbow sometimes(can't just be carpal tunnel that high), and a few spots on my arm where it looks like my capillaries(sp?) have burst. Also, things on my face or hands won't heal. I have a small paper cut on my finger that is 2 weeks old and it still looks like the day after I cut it. Any more help would be appreciated. Ann

[This message has been edited by Ann S (edited 01-28-2001).]

 
Old 04-04-2001, 07:39 AM   #5
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vivkay HB User
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ann,
i have scleroderma,an autoimmune disease. raynauds is one of the diagnostic symptoms of my disease. related sjogrens syndrome(dry mouth) may contribute to periodontal disease. the nonhealing sores you mention,especially on your face and hands are also very indicative of scleroderma. if you have painful sores on your fingertips,they may be calcified ulcers. be very careful of even the slightest trauma(typing for example) to your fingertips until you find out more.
i am not a medical expert but after watching my father suffer with scleroderma,along with 17 years of personal experience, i hope i might provide you with some useful information.

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vivian p fix

 
Old 04-04-2001, 07:46 AM   #6
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vivkay HB User
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ann,
i have scleroderma,an autoimmune disease. raynauds is one of the diagnostic symptoms of my disease. related sjogrens syndrome(dry mouth) may contribute to periodontal disease. the nonhealing sores you mention,especially on your face and hands are also very indicative of scleroderma. if you have painful sores on your fingertips,they may be calcified ulcers. be very careful of even the slightest trauma(typing for example) to your fingertips until you find out more.
i am not a medical expert but after watching my father suffer with scleroderma,along with 17 years of personal experience, i hope i might provide you with some useful information.

------------------
vivian p fix
__________________
vivian p fix

 
Old 07-07-2008, 08:54 PM   #7
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pieplate1 HB User
Re: Raynauds' phenomenon????

vivian, can you tell me more about scleroderma. I am still in the diagnosising stage. My lab tests are all normal, but I have sysmptoms, of raynauds badly in hands, dry mouth, thickening of skin on fingers, and patch on chest, and curling of fingers, worse on right.
how are you doing, and what treatment are you under.
pieplate1

 
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