Raynaud's Disease

Hello everybody! I hope the holiday treated you well!

I've been noticing lately that my middle and forefingers have been turning colors (white and blue) in cold weather and have also been hurting and getting numb.

My rheumy diagnosed me yesterday with Raynaud's disease or syndrome. I wanted to know if anyone else had experienced this and if so, what parts of your body were affected and how do you handle it?

I've been keeping my hands as warm as possible, but it still happens.

If you have any experience with this, I'd love to hear about it!

Hi Nichole, is Raynaud's related to any other rare diseases? I feel like I've seen a bunch of stuff on other Ben's Friends networks. Maybe I've been getting requests to start a new network for it.

Hey Scott,

It's one of those add on diseases that you can get in addition to say, Lupus or DM, PM or IBM...you know, like a "bonus" that you don't want!

Everytime I go to the rheumy, he would look at my fingers and ask me if they turn colors, so I knew he was waiting for it to happen.

very funny on the bonus you don't want. You're still keeping your sense of humor.

Here is a Raynaud's group on the Lupus site: http://www.lifewithlupus.org/group/raynaud-s-phenomenon? - hopefully it helps.


Thanks Scott, I'll check that out!

I live in sunny Fl. and was diagnosed last week with Raynaud’s. I have started carrying gloves with me and put them on as soon as my fingers start to go numb. I have found that this helps.

Well there goes my theory of moving to a warmer climate! I did read today that stress can cause the Raynaud's to flare too?

Such a strange thing!

Hi Nichole. I've had Raynaud's since I was a teenager, but I've only had myositis (IBM) since 2012. Fingers and toes for me. The only thing I've found that helps is heavy wool socks and insulated gloves, both of which have to be on by the time I walk out the door because spasms can be almost instantaneous. Yes, even then it can still happen.

Raynaud's is surprisingly common among people with a variety of diseases and, as I've just learned, people in the building trades. I don't think doctors really understand the causes of the phenomenon, but would be happy to be corrected.

Hey Nichole ! I have been on a face book site with lots of people with our problems, do you know about it? I have DM and was also asked all the time about my fingers ever turning white. This is my third year having this and this winter (in Mississippi) I finally had Raynaud's. The first thing I did was go to sporting good store and bought all kinds of insulated gloves and it really helps alot! I hope you are doing well ! David

Hi Marj, I didn't realize you could get Raynaud's as a stand alone disease. I'll have to do more reading. I'm sorry you've been dealing with it so long. I have insulated gloves and it still happens to me too.

I wonder why it happens to people in the building trades...so many conditions are unexplained. Thanks for getting back to me! I will be investigating this more!
Marj S said:

Hi Nichole. I've had Raynaud's since I was a teenager, but I've only had myositis (IBM) since 2012. Fingers and toes for me. The only thing I've found that helps is heavy wool socks and insulated gloves, both of which have to be on by the time I walk out the door because spasms can be almost instantaneous. Yes, even then it can still happen.

Raynaud's is surprisingly common among people with a variety of diseases and, as I've just learned, people in the building trades. I don't think doctors really understand the causes of the phenomenon, but would be happy to be corrected.

Hi David!

I am on the one Facebook group with you and on a few others too, I love them, I find them very helpful!

Maybe I don't have the right kind of insulated gloves. I will try a different brand! You never know!! I bet you have it pretty cold there!

I'm actually in a kind of remission I guess, so I am doing pretty well. Still on meds, but my numbers have all dropped pretty low, so depending on this next CPK I may get to drop my Prednisode below 5mg. Fingers crossed.

Hope you are doing well too! See you on FB!! If you want the name of the other groups there, let me know!

Nichole

David Andrews said:

Hey Nichole ! I have been on a face book site with lots of people with our problems, do you know about it? I have DM and was also asked all the time about my fingers ever turning white. This is my third year having this and this winter (in Mississippi) I finally had Raynaud's. The first thing I did was go to sporting good store and bought all kinds of insulated gloves and it really helps alot! I hope you are doing well ! David

HI Nichole, you could also start a Raynaud's group here.

Ok, may do that. Thank you :)

Hi Nichole, Don't you just love those 'bonus' diseases you get. I call it the domino effect. Once you get one auto immune disease it seems like the bonus diseases start. I had DM for quite a few years before Raynaud's showed up. I live in north Florida (so warmer climate doesn't seem to matter) and I seem to notice it more in my toes than my fingers. I do find that my fingers seem to 'warm up' a lot faster than my toes. I've also found that when I'm defrosting our freezer or rearranging frozen foods I have to wear gloves because the cold just hurts my fingers so much. I don't know if anyone has that or not. Its not related to Raynauds.. at least I don't think so but this seemed to happen after I 'bonused' Raynauds :) I'll be interested to hear more about what you find out.

Marilyn

The domino effect seems like an appropriate term! I was hoping that this could get my husband to move us somewhere warmer, but from what you say and what I'm reading, doesn't seem like that's going to matter.

I'll keep you updated, you do the same for me?

Thanks!!

Nichole

Marilyn Baxter said:

Hi Nichole, Don't you just love those 'bonus' diseases you get. I call it the domino effect. Once you get one auto immune disease it seems like the bonus diseases start. I had DM for quite a few years before Raynaud's showed up. I live in north Florida (so warmer climate doesn't seem to matter) and I seem to notice it more in my toes than my fingers. I do find that my fingers seem to 'warm up' a lot faster than my toes. I've also found that when I'm defrosting our freezer or rearranging frozen foods I have to wear gloves because the cold just hurts my fingers so much. I don't know if anyone has that or not. Its not related to Raynauds.. at least I don't think so but this seemed to happen after I 'bonused' Raynauds :) I'll be interested to hear more about what you find out.

Marilyn

Hi, yes I struggle with the dreadful syndrome. Fingers, in particular the ring and small fingers turn blue/white. When at its worst, the cuticles get infected and extremely painful. Cold weather is my kryptonite playing havoc with both my raynauds and lung problems. I have been advised to try and keep by core temperature as warm as possible as well as my hands. In winter I tend to wear gloves about 90% of the time inside and out, because the slightest knock can cause such pain and even more damage to the fingers. When it is getting out of control my prednisone to bumped up. At the moment I am trying Plaquenil in the hope that it will take over from the prednisone.

As I have the complication of Pulmonary Lung Disease as well, I am going to try moving to a warmer, more humid climate for the winter. Not ideal but........

Hope this is of some help

Michelle

Hi Michelle,

I'm so sorry to hear that you have lung Disease on top of everything else, that's terrible.

I hope moving to a warmer climate helps you with both your lungs and raynauds. Mine is on mostly my first and middle fingers (sounds like we are opposites). I just wear my gloves outside all of the time and if I get chilly inside, grab a blanket. My neighbor has a fireplace, I'm pretty jealous of her, but she actually has raynauds on her fingers and toes (she has Lupus), so I know it comes in handy for her.

Take care and thank you for writing!

Nichole

Michelle Walschots said:

Hi, yes I struggle with the dreadful syndrome. Fingers, in particular the ring and small fingers turn blue/white. When at its worst, the cuticles get infected and extremely painful. Cold weather is my kryptonite playing havoc with both my raynauds and lung problems. I have been advised to try and keep by core temperature as warm as possible as well as my hands. In winter I tend to wear gloves about 90% of the time inside and out, because the slightest knock can cause such pain and even more damage to the fingers. When it is getting out of control my prednisone to bumped up. At the moment I am trying Plaquenil in the hope that it will take over from the prednisone.

As I have the complication of Pulmonary Lung Disease as well, I am going to try moving to a warmer, more humid climate for the winter. Not ideal but........

Hope this is of some help

Michelle

Wow there really are a lot of members here with Raynaud's! I have it too, mine is the secondary, which is the Phenomenon, and yes, Nichole, the bonus that you don't want!

Lupus, Fibromyalgia and Sjogren's all have Raynaud's groups, surely we can start one here too!

We might as well then, I’m sure there’s plenty of people who would relate.
Just didn’t do it because I had already opened a few groups. Didn’t want to seem like I was “group happy” lol!



SK said:

Wow there really are a lot of members here with Raynaud's! I have it too, mine is the secondary, which is the Phenomenon, and yes, Nichole, the bonus that you don't want!

Lupus, Fibromyalgia and Sjogren's all have Raynaud's groups, surely we can start one here too!

I think it will be great to have since there isn't a dedicated site on BF yet!