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Raynaud's Syndrome Message Board
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Old 04-08-2006, 05:38 PM   #1
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Betty325062000 HB User
Question Raynauds questions

Raynauds can be the result of several things, none of which are nice. Since people with lupus can have this too I want to ask some questions. I don't find a board listed. How can I find the proper board to ask these?

Some diseases come in "flares" and I would like to know if that is the way Raynauds is. I know events can make it show up very quickly. But what I am asking is with exact circumstances would the outcome be different. This is such would ice water always effect the hands the same way, or would there be times they were effected more or less than at other times. It seems that for days my hands are such that it is difficult to use them for anything. Then there are those times, less frequently of course, my hands are only minimally effected?
BVan (Betty)

 
Old 04-09-2006, 01:18 AM   #2
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jusbreatheOM HB User
Re: Raynauds questions

Hi
I would have to say and this only my opinion, that Raynauds is worse during a lupus flare but, also when you are not in one, at times your raynauds can also have ups and downs of severity, and I find weather effects my hands as well.I try to keep my hands warms and try to keep them from getting stiff with hand exercises, just to keep good circulation. I know its expensive but I always let the water warm up when washing my hands, that cold shock just seems to get worse with me. I have been in a lil brain fog since I had my baby so, I hope this is coherent.
Felicia

 
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Old 04-09-2006, 08:49 PM   #3
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Re: Raynauds questions

Thanks for your reply. I haven't actually been diagnosed with anything because the rheumi just ignored all the lab work sent to her from another doctor. When I saw the referring doctor again he couldn't believe what the rheumi had done. My GP and I had already concluded I needed a different one. I am waiting for the apt. with the new doctor. My lab work indicates I have scleroderma or lupus. The Raynauds is such an obvious condition that it just went without saying. I had 2 minor outpatient procedures requiring an anesthetic. The first one the oxygen alarm kept going off until they finally turned it off. One doc was kept busy just trying to keep my hand circulating going. Afterwards he told me I should get someone to look into it. During the 2nd procedure they kept me out enough I did not hear the alarm. And every oxygen machine they try to test me with is "broken".

I always use warm water to wash my hands. When it is needed it isn't a waste. But I do live in FL and the water pipes are overhead so most of the time the first water is warm enough. But when it isn't I wait for the warm water. Hot water also hurts my hands. My feet are also affected.

I know this condition changes from hour to hour but what I am wondering is can it be almost none for a few days at a time? Then it is really bad for several days.

I had just ignored it as much as I could thinkng it was usueless to pursue but then I met a man who had lost his feet and parts of his hands from Raynauds. A couple weeks ago he died. That was right after the doctor had told me I should look in to it.

I'm sure there must be sites such as this for Raynauds but I haven't found any. If anyone knows of one please let me know.

Thanks for any/all information I am given.
BVan (Betty)

 
Old 04-10-2006, 07:04 AM   #4
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Suni321 HB User
Re: Raynauds questions

Hi Betty, you can also try the "Neuropathy" board on here as well for more people who suffer from Raynaud's Phenonomen. It's important that you are working with a good doctor that can help you monitor this condition as it does appear to worsen as you get older. (That's great that you've got an appointment with a new Rheum.).

My mother, my aunt & myself all suffer from this - however; I am the only one with SLE-Lupus. (Thankfully! I wouldn't want anyone else to have this if I can help it).

There's a couple of things that seem to really help - one is making sure that you stay warm - do not allow your feet and hands to become "cold". And keep your circulation going. Exercise is key - swimming, stretching, massage -anything that keeps the blood flowing to those areas. Another is diet - eat right & stay away from sodium & anything that could increase inflammation. Limit caffiene.

I hope some of this will help - keep us posted on how you are doing & keep demanding answers for your condition.

Last edited by Suni321; 04-10-2006 at 07:17 AM.

 
Old 04-10-2006, 10:34 PM   #5
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Re: Raynauds questions

Thanks for your response. I seem to just be moving along a long dog trail and at ever corner there is something else.

I have neuropathy and although not diagnosed I know I have had Raynauds for quiet sometime. I live in sunny FL and I don't think I would survive where it is colder.

I have long had a dry cough then I developed a cough that was severe to the point I would stop breathing. My GP sent me to a pulmonary doctor. He did a CT Scan which revealed nodules in both lungs. So then he did a biopsy. The biopsy was negative for all the bad stuff. He said they had no connection to the cough. He did a lot of lab work, and everything came back positive for auto immune problems. Just before that I had asked my doctor to do a GAD 65 test which relates to autoimmune diabetes. I had been classified as a type 2 as most older people are. But with that finding an autoimmune problem changed the diagnosis. I have briefly read post on Healthboard but have not asked about Raynauds. I did ask on the neuropathy I am on but none of them have such problems.

I figure this is secondary to something but am surprised that there is not a Raynauds board.

The lung doctor referred me to a Rheumatologist. He had done several good test and then the lab listed with the results of that test follow up that should be done on the samples they had. The Rheumatologist looked at the tests from the lung doctor and said she didn't know anything about that. She only did an antinuclear test. It came back positive. She just told me everything is ok. The letter she sent to my GP left the GP, lung doc and me in total disbelief. She said I don't have Raynauds or anything else. And the day I was there I had on a light jacket but was still cold cold. My feet and hands were at their most brilliant colors, purple, red, and some snow white. It wasn't that she missed it, like had the color being good.

The lab done so far shows the most likely thing to be SLE and next Lupus. My GP is referring me to another rheumatologist. The lung doc tried to be nice when he saw the letter, but there just is not anything nice to say.

I always like to learn as much as I can about anything that effects me. I have read some good articles on the net, but I also like to get comments from real live people.

How is this handled other than staying warm? I have in the past just not taken it very seriously. But recently there are times when my hands are so bad it is difficult to do anything. I just can't type when they are like that. Music is my number one escape. I play keyboard and the Raynauds really makes that impssible. There are times though when I am ok enough to play or use the computer.

 
Old 04-13-2006, 07:48 PM   #6
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rosta04 HB User
Re: Raynauds questions

Hi there.. I am so sorry you are experiencing such bad luck with doctors.. It is so frustrating I can feel where you are coming from you just want answers and your not getting them.. I also can't believe the one doc said you didn't have raynauds.. well I am 27 live in Seattle, WA and have Raynauds as well as SLE Lupus, Fibromyalgia, Arthritis and many others.. the raynauds runs in the family so I was prepared to deal with this.. Honestly the only thing you can do is like the other lady said keep your hands warm all the time, its not good for them to get the slightest bit chilly plus is causes your joints to hurt and swell much worse.. The only type of medication you can really go on is Blood thinners but you don't want to go on them at a young age.. so its really all about tolerance and dealing with it.. I keep hand warmers and toe warmers with me at all times sounds silly but I can't dirt bike or snowboard without them otherwise my hands will turn pure white..

I just saw an ad for an Erectile disfunction medication that they are showing works for raynauds patients.. I'll be interested in seeing how that all works out with more testings etc.. I cant remember the name of the med I'll need to look it up.. funny how medications work for other symptoms.. good luck with your appts.. I wish I lived in florida I felt my best when I vacationed in cali recently I wasn't sore at all..

Take care
AJ

 
Old 04-13-2006, 09:41 PM   #7
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Betty325062000 HB User
Re: Raynauds questions

AJ, thanks for the info. I don't think I would survive in could country. I have had plenty of that and at that time the cold didn't bother me so much. I loved outdoor winter things. I didn't know blood thinners had anything to do with that. Usually I am on some medications that has that as a side effect and if not then I take aspirin. I can't start too early...I'm coming up on my 73rd birthday.

I'd move to FL, except that I already have.

Last edited by Betty325062000; 04-13-2006 at 09:42 PM.

 
Old 04-14-2006, 08:54 PM   #8
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Re: Raynauds questions

I'm sorry you have Raynauds to the extent that you have. Mine is nowhere near that. I think mine is secondary to something (?) else. About the time I started to research Raynauds I went to lunch with my sister and while there we saw one of her friends. He had had so many amputations he was in a wheel chair. I guess I never realized it could be that serious so had concentrated on the basic problem.

I haven't yet had time to read your references but I have that on a top priority to read. Is your problem a primary one or is it secondary to something else?

Thanks for your reply and I hope you see improvement with yours. So what difference does it make with the sex of the meds? (LOL)

 
Old 04-18-2006, 06:02 PM   #9
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99 stang HB User
Re: Raynauds questions

I just read ur post about the man that you ran into at lunch w/ur sister how sad, it worries me to think how this condition can take over your body that way.
Oh yeah and about the meds I am taking for this raynauds lavitra, no unfortunely it doesn't have any effects for women as far as the sex is concerned but when my doctor gives me the samples she jokely tells me to keep it away from my hubby Marilyn

 
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