Jeannie McClelland

Maybe a dumb question on Raynaud's

30 posts in this topic

Great idea, Jeannie! It also sounds like fun shopping for the little containers!

 

Mary in Texas

Share this post


Link to post
Share on other sites

Hi!

 

I think it is the temperature change which sets it off. I too still get Raynauds in the summer and I don't go anywhere without a pair of gloves in my bag, in case I walk round a corner from being in the sun to the shade and get cold hands!

 

I too also get cold right after eating. I also wondered if it is because the blood has been diverted to the stomach!

Glad it's not just me! :fairy:


Susie

Share this post


Link to post
Share on other sites

Hi Jeannie,

 

That sounds neat, the purse pockets that Carrie suggested! I think I might make one of those, it could come in really handy. And thanks to everyone for these neat tips!


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

<My rheumatologist suggested that I might be able to take half the medication I normally take>

 

Buttons,

 

Sorry to jump in like this but I would like to know what meds you take for it.

 

Thanks.

 

Betty

Share this post


Link to post
Share on other sites

Betty, I see we haven't answered your question yet about treatments for Raynaud's.

 

So let's toss it out to the forum. Do you use only preventive measures to deal with Raynaud's, or do you also use medications? If so, what medication(s) and what is your experience with them?

 

As for me, I used to take some medication for Raynaud's, which was also a blood pressure medication, but it didn't help all that much, and for years now I have been able to enjoy fairly good success by relying on Raynaud's Prevention 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.

Share this post


Link to post
Share on other sites

Thanks for your information. I reread those references hoping to find something new.

 

Betty

Share this post


Link to post
Share on other sites

I don't take any medication for mine. The doctor at work thought I should take something too which also lowers blood pressure so needless to say I pondered that thought. My family doctor and my rheumatologist both feel that I don't need to take anything until I need to (so in reading between those lines for me in particular, it is clear to me) and I'm not going to take anything until then. Meaning, although I turn white and red all the time, I am not in constant pain yet and what I do get pain wise is still bearable and manageable for me...so until that changes, I'll keep plugging along without meds like Shelley does.


Sending good wishes your way!

Share this post


Link to post
Share on other sites

Jeannie,

 

I am in California and I start taking Reynaud medication starting November when temperature start dropping below 40 and stop in April when temperature is above 70 degree F. This works very well for me. I take Nifedipine.


Kind regards,

 

Kamlesh

 

 

Share this post


Link to post
Share on other sites

I'm with the majority on this - I have figured that it is the lowering of temperature (if only by the smallest amount) that sets an attack off, as oppose to the actual temperature.

 

I suffer badly in supermarkets when wandering round or near the refrigerated aisles - the fresh cooked chicken counter is my favourite resting area when I get an attack, and the staff are now quite used to me hanging around without actually buying a ready-cooked chicken now!! :blush:

 

I also walk around (no matter what the weather) with a pair of gloves at all times of the year - even the doctors receptionist has commented on why I need them. They now have a Raynaud's poster up in the waiting room (courtesy of a local group I joined).

 

One of the more embarrassing situations tends to be at get-togethers. If I have to hold my drink/beer (BBQs and the like, where you mostly stand around) I always have to put my gloves on, as an attack is pretty much guaranteed - unless I'm on hot chocolate!!!

 

I have been offered some form of medication (can't remember what it was now), but as my doctor explained there was no guarantee it would work, and there were some pretty dodgy side-effects (I already have low blood pressure) I have decided not to take anything for now. Hopefully, I can stay that way....

Share this post


Link to post
Share on other sites

Hey Lil Dee

 

You made me laugh....the thought of stalking cooked chickens to stay warm! :D

 

Just love that you gave them a courtesy poster too!!

 

I'm surprised the hot chocolate doesn't do it for you....even hot drinks set mine off too.


Sending good wishes your way!

Share this post


Link to post
Share on other sites

Hi Betty,

 

The only things I take are niacin (not inositol which is the flush-free kind) and aspirin, as recommended by my rheumatologist. I have to admit that I rarely take the aspirin because I don't want to increase my tendency for bruising/bleeding. I think the niacin does help, but you ought to talk to your doctor about that and the best dosage. Too much can be pretty toxic. Here's a link to the Medline Plus page on niacin.

 

Mostly I try to prevent attacks and am planning on trying the ready-cooked chicken section of our local grocer's tomorrow!!

 

Warm hugs,


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

On a positive note...

 

I went to a new doctor and when Raynaud's was mentioned it was easy to show her. I took off one shoe and sock and said it won't take long. In less than a minute walla...there it was. We could watch the whole process.

 

My feet are most problematic. I always wear socks, not always wear shoes (at home of course), but got to have those socks.

 

Betty

Share this post


Link to post
Share on other sites

Hi all, I 'm interested by the different approaches of everyone doctors to Raynaud's prevention and the need to take medication. I was reluctant to take medication for it , but my rheumatologist takes the view that each attack causes damage and that what we can see in the hands and feet is also happening in the lungs and heart and therefore we need to reduce the numbers of attacks if at all possible. I tried and rejected 5 different medications before finding one that I can tolerate (Losartan).

 

Lizzie

Share this post


Link to post
Share on other sites

Hi Everyone,

 

I am at a loss to understand why Gareth only gets white hands/fingers when he gets into the warm shower. He likes the water on the warm/hot side so I know it's not because he's cold. You would think he'd turn white getting out of the shower, but he turns white while in the shower!!!

 

Take care, Everyone.

Margaret

Share this post


Link to post
Share on other sites

Hi Margaret,

 

I'm not surprised that he gets attacks of Raynaud's while showering.

 

As I understand it, any excessive temperature change can induce an attack of Raynaud's. Too hot or too cold can induce vasospasms.

 

I have to be careful to keep temperatures more neutral. Of course, whatever we are doing at the moment can be a clue for our triggers for Raynaud's. Attacks can be caused by cold, heat, even vibrations. A lot of construction workers get Raynaud's when they are using power tools. I even have to be careful when using electric barber clippers, taking a few short breaks is enough for me to be able to trim hair but not get a bonus attack of Raynaud's. See our section on What is Raynaud's?.


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

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