Post # 1
Hey all! Not certain how many people are familiar with Raynauds but basically it causes the body to decrease blood flow to extremidies to an extreme degree and in unnecessary situations. For instance I can be grocery shopping in the produce aisle and my fingers will slowly turn from normal to white to purple to grey. I love living in WI but in the winter I have to come home and run a bath to warm my finger, toes, and nose up to normal.
Problem is, it’s getting worse. I love hiking and wasen&client held back from a short hike to a waterfall (about two hours round trip) because my fingers started turning pretty much as soon as I got out of the truck. I wear several layers of compression gear, wool socks, high insulation boots, compression gloves and mittens over them with hand warmers inside (I plan on buying heated gloves for next year). It was about 19 degrees out and the rest of me was perfectly warm.
Photography is my passion and it’s really being hindered by this disease or whatever you want to call it. It’s making me extremly sad. I don’t know what to do. Obviously I don’t want to get frostbite but it sucks that it holds me back so much.
My doctor doesn’t seem to know a whole lot about it and I don’t really know what specialist I would go to for it. I’m just wondering if any Bees have it and have any suggestions? Thanks guys, I appreciate it.
Post # 4
I don’t have it a, but I know somebody who did and she pretty much just delt with the sypmtoms by altering her lifestyle. I know she didn’t go out when it was cold and sometimes had to keep her gloves on if it was chilly inside. I am sorry I don’t have any better advice. I think it would be a cardiologist that you would see since it is a disease of the blood vessels. It is important to find a doctor that is fimiliar with it though because the drecreased circulation can cause a lot of damage to the nerves in the hands and feet and can lead to really bad sores.
Post # 5
@ieatunicorns: Ty for the reply. I think you are right in the thought of going to a cardiologist I’ll have to see if anyone around here is familiar with it.
Post # 6
A rheumatologist is normally the physician you would see for diagnosis and treatment of Raynaud’s. I have Raynaud’s and have had it for years.
The first thing after a diagnosis of Raynaud’s is to establish whether it is Primary or Secondary Raynaud’s… There aren’t any specific tests they can run, but the doctor will go over all your symptoms and history with you. Primary is when there are symptoms without an underlying disease process, Secondary occurs along with an underlying disease. The secondary form is generally more severe and harder to treat. It is very important to determine whether it is one or the other. There are symptoms you may not even realize you have (nailfold changes etc) which a rheumatologist can pick up on.
You may want to check out http://www.raynauds.org/index.php/raynauds/frequently-asked-questions/
I have secondary Raynaud’s, and so while there are medications that I could take, I mainly just deal with it via lifestyle changes as my rheumatologist does not think the meds would help enough to make a significant difference. I don’t want to scare you, but Raynaud’s was my first symptom of Lupus and MCTD. I have had Raynaud’s for 6+ years and was only diagnosed with Lupus last winter. There are a lot of people who have primary Raynaud’s, and that is probably all you have, but it is so important to find out early if you have another issue going on.
raynauds.org has a lot of good information on it, and I hope this info helps you! Feel free to message me if you have any other questions! Good luck with the doctors and don’t be afraid to speak up and ask questions.
Post # 7
@erincredible: Thank you so much for the information!