Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Raynauds Disease

I was diagnoses today with yet another one of those 'every disease known to man' associated with Ankylosing Spondylitous. For me this can be serious leading to gang green and amputatuion.What Is Raynaud's Disease?
Raynaud's disease and Raynaud's phenomenon are rare disorders that affect blood vessels. These disorders are marked by brief episodes of vasospasm (narrowing of the blood vessels). Vasospasm causes decreased blood flow to the fingers and toes, and rarely to the nose, ears, nipples, and lips. The fingers are the most commonly affected area, but the toes also are affected in 40 percent of people with Raynaud's.

When this disorder occurs without any known cause, it is called Raynaud's disease, or primary Raynaud's. When the condition occurs along with a likely cause, it is known as Raynaud's phenomenon, or secondary Raynaud's. Primary Raynaud's is more common and tends to be less severe than secondary Raynaud's.

When you have primary or secondary Raynaud's, cold temperatures or stressful emotions can trigger attacks. During these attacks, there is a brief lack of blood flow to the affected body part(s), and the skin can temporarily become white then bluish. As blood flow returns to the area, the skin turns red. The affected areas can throb or feel numb and tingly. With severe Raynaud's, prolonged or repeated episodes can cause sores or tissue death (gangrene).
....charles

Hi Charles - And not only but also "As blood flow returns to the area, the skin turns red. The affected areas can throb or feel numb and tingly." The affected area is horribly painful. I have been redered into tears by the pain - an that don't happen often! I have Reynauds in hands and feet and also nose.

Much better now that I don't have a horse and the small critters to look after - cleaning out the critter stalls outside, de-pooping paddocks, trundling wheel barrows in the freezing cold aint much of a joke. Sure do miss my wee ones, but, am happy to miss ALL of the effects from the Reynauds

Mind you, sitting here at the keyboard makes my hands v. cold, sometimes my typoes are just too many to cope with, then I have to stop and warm up. At the moment am cold, feet, hands and nose, but especially hands, they are icy. However, one learns to 'manage' the condition (not much fun though.)

Sorry to hear you've got Reynauds.

Molly
Keeping on Keeping on

Sorry to learn of the diagnosis Charles, does sound painful. Unfortunately the symptoms and diagnosises can seem unending.

Hopefully you can manage the symptoms effectively. I was unaware of the symptoms myself, so for me your post was educational.

Best to you.

Tim

Interesting about Raynaud's disease. I have always had a problem with fingers and toes going white and "bloodless" followed by painful heating up. I had never associated it with AS but that might explain why my rheumy asked about any circulation problems and nodded when i told her as if she was expecting that. Mary

Sorry about this. I got that diagnosis many years ago when I was first diagnosed with Lupus. I have basically learned how to live with it. All of the little hints to keep it calmed down. Mine has never been severe enough to worry about gangrene and I hope I never get there. It affects my hands and occasionally my feet.

I wish you well.
Blessings.
Possi

I've had Raynaud's since the early 1990's and knowing was it was has saved me from having a lot of test while being examinated by doctors especially at the ER. It affects my toes the most turning them a dark blue to purple color and of course when a nurse or doctor sees the darks colors of them they want to know what is going on.

I am not sure it is always stress realated as a trigger but there for a few years it would worry me when I would take my shoes and socks off only to see my toes did not look right. Mine normally clears up on it's own without getting the doctors involved. I hope yours will be the same way with just short episodes and going away for a while.

Brent

Mine started about 1970 and at first it was pretty constant and then as I got my Lupus under control it got better. My hands hurt the most when they are fiery red and engorged with blood. The heat of that really bothers me. The dr. told me when I am having trouble with the circulation to stand and swing my arms in big circles and it does help to get it to going quicker. Also, I always wear my gloves in the grocery store especially getting things out of the freezer or cooler. I even do that at home. I always wear gloves in the winter.

The thing that threw me the most was one evening when I took my shoes and socks off and couldn't tell where my Levi's ended and my feet began. I did not know they could get so blue. I got up and stirred around and got the circulation to going. That was not the most painful but it was the scariest or funniest. When I started a calcium channel blocker, it helped mine a lot.

I don't think about it much. Just go "oh there it is". I do have a friend though who has the tips of her fingers just black sores that they sometimes think they will have to amputate. Hers are the worst I have ever seen. They are swollen like sausages and look terrible. She can't do dishes, do anything around the house. They are so painful that she just sits mainly and holds the gently in her lap with her fingers spread away from each other. Now, seeing that often, I do know how bad it can get and I certainly don't want that. She is not taking any meds though because her hubby does not want her to. I wonder how it woule be if it were on the other pair of hands in the family. It's not the money though. He is scared of the potent drugs. She almost died from Crohn's surgery a few years ago and just had it again....finally and did super well. She was so scared to do it again.

How are you Brent? I have missed talking to you. I am still trying to get this pain calmed down. I really would like to be able to do the stress test on the treadmill without the medication. I know it doesn't bother most people but my brother had a bad reaction to it and knowing that scares me. I wish I didn't know it. I have to do it though so we can maybe get a clearer picture about whether or not the Humira caused my cardiovascular problems. (I think it did). I think I have taken my Biologic according to my rheumie but oh how I hate to think of the rest of my life with higher doses of steroids and pain control. I truly hate steroids. I am getting the plumped up cheeks (looks like I am loading up nuts for the winter). Oh, I think I have already done that. My mind kind of runs like that sometime. I can say something and can't keep it from going to something funny (to me anyway). Guess it doesn't take much to entertain some people.

Hope all is well with you and yours. Keep in touch.

Hugs and Blessings.
Possi

Me too.
But in my case, it goes all the way up my arms and legs. I turn purple when I'm nervous. I never wear shorts to doctor's appointments anymore, because the nurses usually freak out. And Cody's learned that when we go shopping, I may pick out the ice cream flavor, but HE pulls it out of the freezer, and loads it on the conveyor belt, etc . . . (he's so good! )

So I take it yours is a serious case, Charles? I recommend pocket-warmers . . .

Bridge

I have it poping up once and a while, and boy, it can sure scare the heck out of you. I get it on my face, hands, and my left foot. Celbrex seems to work on it, but the weather seems to also has effects on it. When it rains, it gets worse. If it aint one thing....

I have had this condition all of my life as I remembered being teased in grade school for having 'purple hands.' I never considered it serious until the digits on my hands turned a 'ghostly white' and became numb. This is very scary and I have to warm them immediatly. Best cure is to go wash a sink full of dirty dishes. I wear socks and gloves while sleeping because I wake up in the middle of the night with frozen fingers and toes ....charles