I just joined this support group and was amazed at how many of your stories are so similar to mine! I didn’t realize that some of what I was experiencing was common and part of this disease. I am so very happy to have others to share with. I m hoping to learn from others how to deal with this.
I did read some discussions about Reynaud’s being linked (possibly) to PsA. Is this the case? The reason I ask is that my father has Reynaud’s and I too am always cold. I just thought it was me but now I’m wondering. My feet haven’t turned blue or anything like my dad’s did but was wondering about the link between the two.
Would be curious to hear what is out there.
Welcome, Suparna!!! This is a wonderful, supportive, friendly group.
I can't answer your questions, but there are many knowledgeable people here - I'm sure someone will answer them soon!
Thank you nym. I read some of the discussions and It does seem like a very supportive (and knowledgeable) group.
Talk to your Dr. he will know for sure, but the 'blue' is severe, most of our fingers turn white and ache at the slightest cold exposure. Plus there is Raynaud's Disease, Raynaud's Phenomenon, and Secondary Raynaud's Phenomenon. The difference is in determining if it is a vascular disease or an Autoimmune vascular disease, and like most of this, it's complicated!
We have a Raynaud's group just forming at BF, and are most welcome to join.
Welcome, please continue to join in!
So very nice to hear from you!
The first thing the Rheumatologist asked me was if my finger/hands and toes/feet turned white when I touched cold or frozen things, and did that cold exposure hurt. So yes, I have it. Turning blue is extreme, and dangerous! I just read yesterday that the pain of Raynaud's is often misdoagnosed as Osteoarthritis.
Good chance you have it, but none of us are Doctors, we like you are the patients, but the knowledge and wisdom of these folks still astounds me!
If you google bens friends patient community blog, click on groups, you can join the Raynaud's group, only a handful of us right now, but Ben is trying to up membership to turn it into a fully functioning site like this one, so please add your name to the list. You can even join as a loved one or one who thinks you may have it, but please talk to your Doctor. Put it on your list!
Thank you SK. I will ask my doc. I see her in two weeks so I’ll let you know what she says. My dad definitely had the blue toes. He actually had the tips of three of his fingers cut off years ago. He recently had surgery similar to a bypass where they basically replaced some of the main arteries (I think it’s arteries) so now he actually has good circulation after many years of blue toes!
I will check out Ben’s list.
Thank you all for your support. It’s so nice to be able to read others stories and know I’m not alone!
You are not alone, there is nearly always someone on here, if you need us, just post a discussion, whoever gets on will talk to you when they come on, hopefully all the new members will do this too! We all need to support each other!
Your Dad has been through it, so please put this on the TOP of your list of discussions with Doc. They will most likely put you on a vasodilator. Don't forget the gloves, you will need them. Especially snow gloves for frozen foods! If they keep your hands and wrists from pounding, who cares!!! Just throw 'em a snow ball! lol!
So glad you found us, this is a wise, wonderful group of people!
LoL snow ball fights might be fun!
I am curious to know what the doc will say/do with this other information.
Out of curiosity, has anyone experienced any psoriasis or really bad bouts of eczema? That’s where mine kind of started. I had such bad eczema on my hands and elbows that I was embarrassed to show my hands sometimes! I actually had them bandaged up a lot cause there were open sores. That’s what started it first for me. Soon after is when the joint pains came on. My ankles were the worst with big red patches (psoriasis)!
Just curious if others have had similar experiences.
I do not have Psoriasis, never want it, one of my granddaughters has it very badly on her ankle area, nowhere else on her body that I know of. I bought her a big jar of cocount oil, she said it helped. the others will have to talk about the psoriasis.