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Sjogrens Topics => Living With Sjogren's => Topic started by: bluegardenia on February 01, 2017, 03:33:36 PM

Title: reynaud???
Post by: bluegardenia on February 01, 2017, 03:33:36 PM
weather is cold since a few days and I noticed that when i go out my fingers become very cold and hurt me. it never happened to me. just the top of fingers not all hands. they do not become white or red. they just hurt. usually i do not have cold hands or feet and they become normal after more or less five minutes when i come home again.i made a capillaroscopy (my rheumy wanted it)last winter and they laughed at me but i had not this... how did it start for you? thanks
Title: Re: reynaud???
Post by: Joe S. on February 01, 2017, 03:44:37 PM
Mine started in my feet. They did not change color at first, now they do. A slight temperature difference will trigger them now. I had frozen my hands and feet several times in my youth and brought them back and thought this was the after effects of that until the color changes started to happen.

Now I just try to keep everything covered and warm.
Title: Re: reynaud???
Post by: tiredndryinTN on February 03, 2017, 10:28:34 AM
Like Joe S. said, do your best to use warm water to wash things, keep covered and warm in cool temps. Avoid sudden exposure to extreme chill. If you get an episode, soak hands or feet in warm water. Or over a heat source (reasonable distance of course.) I often make a mug of something warm for my hands. It is extremely annoying as I lose partial feeling in them during the constriction. I start to have trouble too when I have to handle something cold while preparing it for cooking for more than a minute or two. When we get a cold snap, I dread going outside as I'll get a Raynaud's flare in both fingers and toes. It hard to walk or press the gas pedal in the car when I can only feel part of my toes completely. I wear extra socks but it  still happens sometimes. This started when my extreme fatigue and dry eyes started in November of 2015. I had to start wearing a jacket in the house all the time as well. Always a little cold. But both hands and feet would do it, not one more than the other.
Title: Re: reynaud???
Post by: Carolina on February 03, 2017, 12:18:40 PM
They shouldn't be laughing at you, Blue Gardenia!  That is cruel and wrong.

You are concerned and you have pain.  You should be treated with respect.

Hugs,  Elaine
Title: Re: reynaud???
Post by: bluegardenia on February 03, 2017, 03:31:25 PM
carolina they laughed at me because the capillaroscopy was negative...
i was wondering if when  reynaud starts  the pain is always or some cold days yes and others not? and then after a while it becomes usual  and it happens  always when in cold?(hope i explained well). just to understand because  since i wrote here, the weater is the same but it never happened again or it happened and lasted just for   really short times, thanks
Title: Re: reynaud???
Post by: MAT51 on February 05, 2017, 05:35:46 AM
I think if it was secondary Raynauds the capillaroscopy would have shown this wouldn't it? I'm having one done in April of this year but I don't think anything will show because, although like yours, my hands get cold and hurt when I'm flaring - with two episodes of full blown colour change in fingers in the past five years - it's really only my toes and soles that get the whitening.

Maybe if they tested the nailfolds on our toes it would show something?

But I can't see any sign of capillary changes at all on my finger nailfolds, although I do get what I think are Terry's Nails - with pink patches like sunsets in the upper part of my nails. And also small splinter haemorrhages quite often in various finger nails and a toenail. I put a lot of my nail and skin problems down to SFN though as I've had it running rampant in my hands and feet plus the rest of my peripheries, for at least six years now.
Title: Re: reynaud???
Post by: eija on February 17, 2017, 07:29:06 PM
So Joe, you're saying it's progressing slowly towards more changes? That's what I've been wondering.


Mine started a few years ago with some toes/fingers going numb when outside. No colour changes. The next thing I noticed was one or two toes going dead white when in the shower. No pain. Sometimes I had bluish "spots" on my toes, something that looked like mud (since usually I was coming from the barn :D ). Sometimes, but very rarely, my fingers would go witish, but not badly. Just enough to make me notice something weird. It all went better when I had to give up my horse and there was no more being outside in the winter.

A while ago I noticed that very often my right thumbnail was purple, or half of it. Never the left one. I already started thinking if it's a sign of a heart failure or something! Then, the other day, my fingers were like this (although the pictures don't show it very well):


https://www.dropbox.com/s/cd8h7bxob4n499o/IMG_20170214_164043.jpg?dl=0 (https://www.dropbox.com/s/cd8h7bxob4n499o/IMG_20170214_164043.jpg?dl=0)
https://www.dropbox.com/s/p7b6x95sap4ujuk/IMG_20170214_164112.jpg?dl=0 (https://www.dropbox.com/s/p7b6x95sap4ujuk/IMG_20170214_164112.jpg?dl=0)


In the second picture you can see how one of my nails is "normal", the other one is slightly purple and the next one very purple. And the pinky nail is striped! Oh, and my nails aren't dirty, I just have that strange darker arch there, before the white starts.


Anyway, this to me is starting to be very clear that I actually do have Raynaud's. Oh, and the pain when ever I touch something could, like take a milk carton out of the fridge, not to mention anything frozen from the freezer!


Just not looking forward to this getting worse. I have a friend with MCTD, she has severe Raynaud's - so bad, that she's had to have several of her fingers amputated :( Of course it's rarely that bad.
Title: Re: reynaud???
Post by: eija on February 17, 2017, 07:36:38 PM
I found this article about nailfold capillaroscopy. Too tired to read it, but maybe it is of some interest for someone. At least it seemed to explain what it means. Hopefully the link works, it seems to be a monster...


Nailfold capillaroscopy is useful for the diagnosis and follow-up of autoimmune rheumatic diseases.



https://oup.silverchair-cdn.com/oup/backfile/Content_public/Journal/rheumatology/45/suppl_4/10.1093_rheumatology_kel310/2/kel310.pdf?Expires=1487734211&Signature=OGx7QyInDZBqgupVobc~7ghHeg9kDQhuC4DO56hiRly9LawuxE~qPh9QT51LqDNN6iwb8T8iDkCc4X44sp~RhndshCmzGv4jwAZa04Rgsia6tdqAeAlfGy~mj4WP5QkGrZDTvCCjTNW3cy7GgwdSzIFNZoAHeVxfP9pXxof0Kv8oLrZdstbLv~IBCQvuiIwHsuGLTrxVedWjZOLYukeQ6Qh38ayAikA~Ckcjid5J8KG0mnRF4nu1q8w3LW8ZWvEKR-QbQv-iyrEKRTr-HXIQHFdKOOraG1p8xZ~ghYDrMtScC5Apni2h7fD4FFkITznKcHEe8gBwxMU0~0lz4KBdMg__&Key-Pair-Id=APKAIUCZBIA4LVPAVW3Q (https://oup.silverchair-cdn.com/oup/backfile/Content_public/Journal/rheumatology/45/suppl_4/10.1093_rheumatology_kel310/2/kel310.pdf?Expires=1487734211&Signature=OGx7QyInDZBqgupVobc~7ghHeg9kDQhuC4DO56hiRly9LawuxE~qPh9QT51LqDNN6iwb8T8iDkCc4X44sp~RhndshCmzGv4jwAZa04Rgsia6tdqAeAlfGy~mj4WP5QkGrZDTvCCjTNW3cy7GgwdSzIFNZoAHeVxfP9pXxof0Kv8oLrZdstbLv~IBCQvuiIwHsuGLTrxVedWjZOLYukeQ6Qh38ayAikA~Ckcjid5J8KG0mnRF4nu1q8w3LW8ZWvEKR-QbQv-iyrEKRTr-HXIQHFdKOOraG1p8xZ~ghYDrMtScC5Apni2h7fD4FFkITznKcHEe8gBwxMU0~0lz4KBdMg__&Key-Pair-Id=APKAIUCZBIA4LVPAVW3Q)