I was diagnosed with Raynaud's Phenomenon over 25 years ago. Today, I had a terrible episode, one of the most frightening I've had in years. The blood was completely drained from my right index finger for over 30 minutes and did not seem to want to come back. I was out of my house and finally found a sink with water warm enough to coax the blood into flowing again. This got me to thinking about whether T1 and Raynaud's are connected. After some Googling, I learned for the first time that there can be an autoimmune connection with Raynaud's. It looks like it might have been one of the first little signs of the T1 diagnosis that would eventually come (my hypothyroidism was another). It started me to wondering how many other people here have Raynaud's. If so, have you found that it's gotten worse over time? Mine didn't bother me much for a number of years, but in the last year or two, I really notice the episodes and today completely freaked me out.
How frightening indeed, sorry to hear that. Can you please describe other symptoms of Raynaud's. My Type1teen has a friend at school, also T1, that says she has a secondary autoimmune condition in which her hand(s?) sometime go completely numb for a period of time. Blood flow problems? It's all second hand from my son so don't have details on her. Sounds like it could be the same. She must have been surprised by it to tell my son, so it may happen rarely too for now. Details if you can.
I'm pretty sure I have it mixed in with Graves disease and my diabetes.
I cannot go into our standing freezer and grab much of anything for longer than a second.
I get pain and all sorts of odd feelings.
I usually do have to go run my hand under warm water in order to feel anything properly after an incident like that.
It's scary. I just live with it, and dont think of it much but I truly cannot take the cold.
I've got Raynaud's too, but I don't really see a connection with my diabetes. If I remember correctly I had it before I was diagnosed with T1. My mom and sister get it too, and mom tells me my grandfather had it as well. Í haven't really had any episodes for a while, they usually happen in clusters for me and then it just dies down for a while. Where I live, last night we had the first real snow of this winter, so I guess I'll see how today goes :p.
I did learn a neat trick from someone who had it too, who I randomly met on a train. You can trick your brain into sending more blood into your finger if you convince yourself that it's longer than it is. I know it sounds stupid, but if you really focus and pretend that your second knuckle is actually the first or something like that (whatever works for you), your brain actually thinks it needs to send more blood.
Now, it might not work for everyone, but you could give it a try!
Good luck!
I think Raynauds is complicated. It is associated with lots of different things, some of which are autoimmune related (one of which is Hashimotos which can caused hypothyroidism).
I believe that there has been some work suggesting that high doses of fish oil can help (probably helping circulation like a vasodialator). Have you ever taken fish oil? I take 8-10 gelcaps a day, it is generally beneficial.
I have Raynaud's Phenomenon as well. I overheard the doctor who was doing my ankle surgery this summer tell some medical students about how I had Raynaud's. I had no idea that I had it until then. I just knew that my hands and feet turn purple then white when exposed to cold. I thought that was what everyone experienced. So I guess I've had it a lot longer than I thought. Oops.
I wonder if Type 1 and Raynaud's are connected too. I was diagnosed with Type 1 a year ago and have had Raynaud's since I was a wee girl. My endocrinologist is always freaking me out with all of these conditions that "may be connected to type 1". If Raynaud's has an autoimmune component then perhaps. I take some fish oil every day but I think it just keeps me generally healthy as I still have episodes all the time. Most recently, in swim class we were all siting on the pool deck and everyone had normal colored feet...except me. Wonderful.
If anyone finds some information on this, I am very interested!
I have Raynaud's and it mostly happens in my fingers as well. Have had as far back as high school or maybe earlier. When I was 10 I was diagnosed with Juvenile Rheumatoid Arthritis. Apparently, the dr says Raynauds is common with Rheumatoid Arthritis. There was never any treatment recommended. It was mostly just sooooo annoying, even happens on the hottest days. My JRA actually went in remission when I was in my 20's and no longer shows up in blood work by the way. The Raynauds has never stopped.The blood always does return to my fingers and toes in time even if it can take a long time. I've never actually worried about it at all. Since Rheumatoid Arthritis and Diabetes are autoimmune conditions, I am not surprised that people in both communities can have this. What not be surprised if there are people that have it and don't have either of those diseases. I am 57 and beyond menopause and still have Raynaud symptoms by the way. Just figure it is something I will have the rest of my life and be more bothersome when I become elderly. I can understand it freaking you out though...
My sister has similar symptoms (fingers turn cyanotic/blue) if she gets her hands wet--even with warm water it seems. There has been no pain or numbness for her though, and it has not been diagnosed as Raynaud's so far. She is not diabetic or have any auto-immune diseases (I seem to own them all in my generation!)
I have been treating her with acupuncture--I am currently in my 3rd year of school for acupuncture--and have had excellent results. Initial treatments eliminated the condition for about 1 week at a time, after which it would come back gradually. After about 4-5 treatments the problem has very rarely returned and it has been about 10 months since I last treated her for it.
Again, I can't say that what she has is actually Raynaud's, but it might be an avenue to look into for anyone with it. Especially if western medicine isn't offering any treatments.
I know! I was so confused when the doctor told me. He assumed I had known.
Yes, I get it in my toes and feet often. I guess I've had it so long that it doesn't seem to bother me anymore. My toes go numb which is nice if I have a blister but even though pointe work is painful I still like feeling my feet!