I have this...have had it for years....the pain sounds about right...its more annoying than painful I find. Do you ever find that if you are cold or if there is a breeze your fingers/toes/extremities turn white like there is absolutely no blood in them? Thats classic raynauds, heres a picture: http://newsimg.bbc.co.uk/media/images/45459000/jpg/_45459947_raynaud's.jpg
Not only does it go white, fingers/toes etc can go black for long periods of time with the risk of frostbite. It can be as sensitive to opening a fridge door triggering it to snowy weather. When it is hot, my hands like you say tend to feel swollen and stuck in position. It is uncomfortable and hurts but it passes if you get your body temperature right. The best thing to deal with this is to find the 'right' temperature for you and maintain the level as best you can. My rayaurds particularly triggers when its breezy, even if simply a window is open on a warm day and im in the breeze, my hands go white. The painful part is after, when the blood returns to the hands. My toes are usually black constantly and I take nifedipine for it...maybe ask your doc if this would help? It causes the blackness not to creep up my foot/leg so to say and helps control the spasms a little.
Keep warm, its an annoying thing unfortunately and there is no 'cure',just one of those things.
Message me if you have any other questions or anything =)
Hope your all ok xxx

by the way...your hands dont always have to change colour to trigger the pain xxx

I don't know much about Raynauds other than what I have researched on the internet.

I know for me, I often have feelings like you describe but, it is related to the compression on my nerves from the stenosis. The compression affects the farthest periphreal nerve endings of course===wrist/hand/fingers and ankle/foot/toes. It is not uncommon for those areas of my body to feel very swollen (sometimes they are) and, to have a lot of pain---almost like they fell asleep and are waking up.

I hope that you are able to get some information and some relief from this. I would chart your pain daily and bring to your doc to see what he/she thinks about it once they can see a timeline.

HUGS to you!

I've had Raynauds disease for 20 years. It's most annoying. What happened to me is that one of my toes was painful. My husband at the time said that I had a planters wart. Never having had a wart before, I put off going to the doctor. When the tip of my toe turned black and I could barely walk on it, I went to the doctor. I had gangrene from untreated frostbite. That led to my dx. I have "primary" Raynauds, meaning there's no idenifiable cause where as it sounds like Kate has "secondary" Raynauds which means there is an identifiable cause. It's a technical distinction but you might want to know which you have. I had further blood tests to rule out any possible coexisting conditions.

Funny thing is that when we talk about other people not understanding our conditions, the people in my world don't understand that I can not tolerate the cold. No one understands that I'm not just a wimp and that the cold causes me pain. Damp, chilly weather is the worst for me.

I don't take medications for it although I understand they can be helpful. I'm do everything I can to keep my extremeties warm. Sometimes I look foolish wearing mittens in 55 degree temps but who cares. Good luck!

PS: If I recall correctly, you have fibro, right? It often accompanies that condition.

From what I have read up on this on the internet if they call it Raynaud's Phenomenon it is 'primary', but if its called Raynaud's syndrome it is 'secondary'. But I don't know if that is the way all doctor's see it, seems like splitting hairs to me, I'll have to ask when I get to see pain doc. I do have FMS also so its probably related, lots of strange pains that don't seem to have a cause, its really getting to me mentally these days. P*ssing me off to be quite honest.lol, but at least I can still laugh (sometimes)

I have it really back in my feet and it just started up in my hands last year.

I never heard of the pain going all the way up to the elbows though.

I have a fairly mild case of it so it dosn't get worse while i sleep like it dose with other people. I do hear that for most at night when you are laying horizontal and when you first get up in the morning is when its the worst. I don't know why tho. maybe we don't realze what positions we are sleeping in that cut off a bit of circulation? i dunno.

i hope you can get some relife soon

hugs

Lisa, I just want you to know that I'm thinking of you. You can be pissed off with how you feel if you want to! It gets old feeling what we feel all the time! As long as you pick yourself up and deal with it. We are here for you!

I have RSD in my hands and arms and they feel alot like this. When I first get up I can't hardly move them at all. I have days when I stand at my bathroom sink and run warm water on them. It helps a little bit. Might be something you can try.

Big HUGS,

Toni

Raynaud's and similar problems might be blown off as due to unknown cause, but I think there's usually a cause, especially for someone who has chronic pain that developed on its own. I know connective tissue disease and disorder can be the underlying isue.