Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Raynaud's progression


  • Please log in to reply
9 replies to this topic

#1 warmheart

warmheart

    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 12 December 2009 - 12:55 PM

Hi everybody,

Think maybe I need some advice...My Raynaud's seems to be progressing quite a bit recently. Yesterday we had the first bitter cold day of winter, and I bundled up (down coat, hat, warm shoes, double fleece gloves). Even so I got a Raynaud's attack, which I pretty much expected, but I didn't expect one of my middle fingers to turn white and numb and to stay that way for two hours after I got inside and started to try to warm up. My fingertip is still a little bit sore today. Is this "normal," or should I be concerned about it? Is there anything special that I should be doing? Thanks a bunch!

Hugs,

warmheart

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 13 December 2009 - 10:07 AM

Hello Warmheart

Interesting post because when I was diagnosed with mild Raynaud's in 2007 I was told that it wouldn't progress and would stay as mild. I had Iloprost as a one off 2007 so had little issue with the cold hands and feet, in 2008 they were colder which you might expect in the absence of Iloprost but they have got even colder during 2009 so something must be progressing. Bear in mind I say all of this as a non medical layperson.

You are supposed to keep hands and feet warm and your core body temperature up as well, which is all very obvious so you might find it helpful to have a look at out Raynaud's page. It has rewarming tips and prevetion ones.

I must admit that I am paying more attention to Raynaud's this year than any before, I am now going to go and try and warm my feet up as 2 pair of socks and a blanket have yet to work!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#3 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 13 December 2009 - 12:57 PM

I've had Raynaud's for 32 years, and I've never been able to predict when it will get worse ( short of the cold season...). I'm not a medical professional. Like the other replier mentioned, it is very important to keep your core temperature up. I find that no amount of gloves help much if I let my body temperature drop (this can be very easy to do - as easy as drinking a cold fluid).

I've also found that heavy use of my hands makes it worse.

The most serious pain (as well as potential for infection) comes in the event of getting fingertip ulcers. I'm sure you can read about that on this site. There are many helpful medications for peripheral circulation - these can be especially helpful with ulcers.

Craig

#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 14 December 2009 - 03:30 AM

Hi Warmheart.

I'm sorry you had a long attack of Raynaud's. We all need to have a full arsenal of weapons to use for re-warming from more difficult attacks of Raynaud's. I totally agree with Craig about keeping our core body temperature up; even a cold drink can lower it, or caffeine, or whatever. Plus I find tending to an attack immediately is very important; I can't just let it go and hope that it rewarms by itself.

With winter coming on, it's a good time to review the tips for Raynaud's Prevention and Raynaud's Rewarming. Do you find any tips there that could be helpful to you?

If it persists, despite avoidance of triggers and a broader selection of rewarming techiques, then you may want to consult your doctor to see if any medication approaches would be suitable for you -- in addition to (not in place of) avoidance and rewarming techniques.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 14 December 2009 - 03:49 AM

Hi Warmheart,

I have been struggling with Raynaud's for about 17 years. It was actually my first symptom before I was diagnosed with sclero a year later. I do suffer with ulcers, I currently have two. Unfortunately once I get cold it seems to take forever to get warm again. Little daily activities like taking the milk out or getting in the shower will set off my Raynaud's. Try to stay warm with layers. This year I have been wearing two shirts and a sweater or sweatshirt over it in the house. My feet are always covered and I do my best with my hands. It is a little hard to cook with gloves on! :)

Stay warm,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#6 warmheart

warmheart

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts

Posted 14 December 2009 - 06:03 AM

Hi again,

Thank you so much Amanda, Craig, Shelley, and Lisa. :thank-you: I really appreciate all your great advice. Basically I pretty much try to do all the right stuff; guess I'll just have to really pile on the warm clothes and be more careful. :emoticon-bang-head: Looking back, I've had Raynaud's for at least a dozen years and by now my fingers are usually cold and purplish, but the dead white finger thing only began last winter and didn't last as long then. Lisa, I hope your latest ulcers heal up quickly! Are you still getting the experimental med for them?

Hugs,

warmheart :emoticon-hug:

P.S. Don't you just love these emoticons? They're all so cute I can't resist!

#7 warmheart

warmheart

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts

Posted 14 December 2009 - 06:35 AM

Hi again Shelley,

Thanks again for your reply--I forgot to say that the hand-warmers sound like they'd be really helpful. I don't have a microwave, so I'll have to buy the disposable ones; there are a couple of sports places near me, so I'll look there for them today. Hopefully they're not expensive! I stayed inside out of the cold on Saturday because it was cold again and I was a little bit worried about a rerun, but I don't want to get into the habit of doing that because it's so important to get out and walk every day I can. I don't want to lose all the gains I made.

Hugs,

warmheart :thank-you: :thank-you:

#8 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 14 December 2009 - 06:52 AM

Warmheart,
I buy the disposable hand warmers by the case on-line. They are a lot cheaper that way. I always have one inside my glove at the grocery store and when I'm outside. Anything below 55 is too cold for me to walk outside so I go to a gym. I still have to use a hand warmer in order to keep my hands warm enough for O2 readings. They are wonderful!
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#9 warmheart

warmheart

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts

Posted 14 December 2009 - 07:21 AM

Thanks, Janey, that's good to know. I'll order some today. I know walking outside in the winter is probably not the greatest idea, but I don't want to get overweight :girly1-by-lisa-volz: and I like walking for exercise (well OK, I don't do ice AT ALL, and I don't much like it when I get cold and lightheaded and have to sit down somewhere, but that happens in the summer too) and anyway I'm too broke and too cheap to join a gym!

Hugs,

warmheart (and warm hands soon!)

#10 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 14 December 2009 - 01:54 PM

Ha Raynauds....sorry to hear that Warmheart!

I'm extremely colourful myself lately....I dress in layers, and layers, too and I still can't seem to stop it from happening? I think I'm doing all the right stuff too?? I wonder if perhaps somehow my core temperature is not warm enough?? I never gave that too much thought until one of you mentioned it? I only go about 200 steps from my car to the front door of work, yet there he is, visiting me in full force! :emoticon-bang-head:
Sending good wishes your way!