Sign in to follow this  
Followers 0
Snowbird

Raynaud's

16 posts in this topic

Hi everyone

 

Does anyone know....does Raynaud's actually cause the digitial ulcers or are they caused by something else?

 

I'm wondering because you don't have to have scleroderma to get Raynaud's (you can get Raynaud's by itself, primary). But...can you get ulcers with primary Raynaud's and no other underlying disease?

 

If you have scleroderma and get Raynaud's, then it's, secondary Raynaud's right?. If so, does that mean it is actually the scleroderma that causes the digital ulcers?

 

Clear as mud for anyone?

 

:thank-you:


Sending good wishes your way!

Share this post


Link to post
Share on other sites

I have always blamed the Raynaud's for my ulcers Snowbird because your circulation is affected with it....but then again...SD effects your blood vessels also so maybe both are to blame....yes...you can get Raynaud's all by itself WITHOUT haveing SD. When I had ulcers it was the worst pain I have ever known in my life...that much I do know for certain...lol...not funny but may as well laugh...what else can we do? :emoticon-bang-head:

I have not had one in quite a while now...THANKFULLY! :emoticons-yes:

Catty

Share this post


Link to post
Share on other sites

Hah! Raynaud's without scleroderma? Absolutely. You can have primary Raynaud's, primary Sjogren's, even primary pulmonary hypertension. And then you could have them secondary to scleroderma~ If I've got this right, if you have a disease that is 'primary', it's a stand-alone and I think (you know what you get for thinking :blush: ) it is often referred to as an idiopathic disease, meaning they don't know what causes it. Hmmm, so if you have a disease like Raynaud's, that is secondary to slceroderma and they don't know what causes that, wouldn't everything be idiopathic? :blink: Oh well, whatever... Just keep those fingers warm in any case. Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

Hello Snowbird

Raynaud's syndrome or disease occurs by itself whereas Raynaud's phenomenon or secondary Raynaud's appears along with other autoimmune diseases such as...scleroderma! As I understand it phenomenon can be worse than syndrome.

In primary Raynaud's, the blood vessels return to normal afterwards. However, in Raynaud's with Scleroderma there may be blood vessel scarring ...Digital (Finger) Ulcers are caused by the lack of oxygen to skin cells.

The primary form (Syndrome) occurs by itself, is not related to other diseases or conditions, and has no known cause. In contrast, the secondary form (Phenomenon) has the potential for serious complications ...

The above information comes from our Raynaud's page.

Typical that we sclerodermians would get it worse! :sick2:

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)

Share this post


Link to post
Share on other sites

Hello Amanda

 

Thank you as well for the info....wow, that pretty much sums it up!


Sending good wishes your way!

Share this post


Link to post
Share on other sites

I was diagnosed with Raynaud's almost 30 years ago, and it has never been severe enough to cause ulcers. I was only recently diagnosed with scleroderma, as the various secondary autoimmune issues have arisen gradually over a 20-year time frame and no one ever put it all together until my lungs became involved. I don't know if that means the Raynaud's was initially primary and idiopathic, or if it is now (and always was) secondary to scleroderma. Frankly, I don't think there's an answer and it may not matter a whole lot in the long run. Living in a warm climate definitely helps! :rolleyes:

 

Sharon T.


Sharon T.

Share this post


Link to post
Share on other sites

Ok Sharon, 30 years is along time...glad to hear you never developed any complications from it!

 

But now I'm curious, have you been turning colours on a daily basis? More than once per day?

 

Mine do whatever they want...every morning when I get in the shower and again by the time I get to work no matter how warm I'm dressed (wool socks, lambswool liners in lambswool mini-mouse looking boots and it's not even winter yet!...needless to say everybody else is in nylon stockings and shoes but not me :barf: :lol: )....sometimes in the evening if I don't get to my double wool socks and slippers fast enough...and then they have the nerve to do it again by the time I change and get ready for bed!!

 

Does anyone else want to share their experience in that tidbit of information too? I'm interested to see how we are all affected by it?


Sending good wishes your way!

Share this post


Link to post
Share on other sites

Hello Snowbird

 

Thankfully my Raynaud's is mild and my fingers and toes only go white. My main issue with Raynaud's is cramp when the fingers/toes get too cold. I also have erythromelalgia, which causes the opposite of Raynaud's being over diallation of blood vessels, that effets my hands and feet as well as my legs. This makes for fun at night, I start out with socks on in bed, then thesocks come off, then the feet go out of the covers, then they cramps and back on go the socks etc. etc. as I move from Raynaud's to erythro and back again. Weirdly whilst this is going on I often dream of having cramp only to wake up with it!

 

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)

Share this post


Link to post
Share on other sites

Hi Snowbird,

 

Right now my fingers just seem to get colder faster than they used to, and my fingertips get numb if they get cold (but I'm talking outside cold - they're okay inside.)

 

Last year was odd, though. I'd get numbness and colour change and pain on one finger, then it would progress to an ulcer, then it would take forever to heal. Then another finger would go, then another. I think I only ever had two ulcers at once; it was like they were taking turns! And so far that's not happening this year, and I'm not taking meds.

 

So I'm not sure if it means I had some sort of temporary or transient Raynaud's or what. I still get splits in my fingers very easily, which is annoying. But so far they haven't moved to becoming ulcers. (WHEW!)

 

And my toes don't seem to be involved, other than just getting colder than the average person's.

Share this post


Link to post
Share on other sites

I had Raynauds for many years before I got Scleroderma. During that time, I never had a digital ulcer.

 

After I got Scleroderma, I had several very severe finger ulcers and even lost the tip of one finger to gangrene. This was the most painful thing I have ever endured!

 

The good news is that I haven't had another one since my rheumatologist put me on Cialis.

 

Mary in Texas

Share this post


Link to post
Share on other sites

Hi Snowbird,

 

As I understand it, Primary Raynaud's is usually more mild than secondary Raynaud's. That is, if you have only Raynaud's with no underlying disease, then you are far less likely to get complications like digital ulcers and gangrene.

 

That said, people with systemic scleroderma can also have Raynaud's ranging from mild to severe. The more we follow guidelines for how to avoid, prevent and treat attacks, the less frequent or severe our Raynaud's can be. Although, in some cases, regardless of following all the rules, Raynaud's will continue to worsen in some cases. But it is usually a whole lot worse in scleroderma patients who smoke, so they strongly recommend breathing only non-nicotined air for scleroderma patients.

 

See our Raynaud's Prevention pages for more information, applicable to people both with primary or secondary Raynaud's. Oddly enough, getting Raynaud's in the shower might mean that you have the water too hot, as even things that are too warm can induce attacks in many of us. Or, the room air isn't warm enough. Everyone with Raynaud's should bump up the heat in their place to the point where attacks are not induced simply by the ambient air being too cool.


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.

Share this post


Link to post
Share on other sites

Hi, Snowbird -

 

My Raynauds has been variable over the years. At first I'd get "tri-colored" fingers several times a day, but the episodes never lasted more than five minutes or so. Sometimes in the Sierras when it was really cold I'd have more severe episodes and would have to resort to handwarmers, hot water etc. to get my fingers back to normal. After a few years of this the Raynauds episodes got fewer and fewer, and now primarily occur during the winter, and again not severe. My feet have only recently started reacting, with one or two toes going numb and white. The trigger for me is always a change in temperature (either warm to cold or cold to warm). I'm very thankful not to have experienced ulcers and hope to keep it that way!

 

I don't know about you, but I am so grateful that this board exists - it is a marvel of information and support.

 

Sharon T.


Sharon T.

Share this post


Link to post
Share on other sites

Hi everybody

 

Thanks so much for your replies...

 

Shelley...my feet actually turn before the water is on...the warm water in the shower brings them back to normal...but they did do that once in a hot bath (so not good either...ah we just can't win!) :rolleyes:

 

Right now I only get pain in my right foot from the attacks (not my left foot or my hands...my hands have been about 1 year behind my feet...but they sure caught up fast in turning colours of white/red suddenly).

 

From what I've read on the links provided (thank you ISN Team!), it's mild if you don't need medication.

 

When do you suppose you seriously need meds, or is that grossly pain dependent perhaps? I'm not one for taking anything I really don't need.

 

I actually saw the doctor at work today (he approved a heater for my desk, yippee!). He said it will help a little with my feet but not my hands (distance)...and suggested medication is really the only thing that can help me with raynauds for bloodflow, etc...he suggested a medication to help. Anyway, since I'm not paining all over I decided not to take it just yet but am lucky his door is open if ever I need to see him...thought I'de see what the next few months bring for now. I am going to discuss this further with my rheumatologist sooner than my next appointment if it gets ridiculously out of control though (she's not up to date on my latest here)...BUT after discussing this with my husband when I got home....

 

he wonders if I start to take medication now while it's not too bad, would it prevent it from ever getting worse? I know there is no cure for Raynauds, so I can't imagine anything ever really stopping it per say.

 

So, we're left with this thought....does anyone who's taking medication for it now know if it is to slow you down from progressing quickly or is it simply providing you with immediate relief from the pain during the episodes (I don't know if the episodes continue anyway, albeit with less pain, or if the medication stops the episodes all together)? Oh, so confusing to learn all this stuff! :P

 

Thanks again!


Sending good wishes your way!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0