I have Raynaud’s (worried about Scleroderma)

[itiswhatitis]

First off, thank you to everyone who has helped me out with my finger swelling anxiety of the last month.

I went to another doctor yesterday and she’s positive I have Raynaud’s. I’m having a blood test tomorrow. I did some research when I came home and unfortunately discovered scleroderma which has made me incredibly anxious.

Does anyone else have Raynaud’s? I guess I just need some reassurance until I know for sure after my blood test.

[melfish]

I have had two episodes of Raynaud's recently, affecting just my right middle finger. I'm going to the derm Wednesday and am going to ask about scleroderma, because Raynaud's is not normally primary at my age (49).

If you're in your 20s, it's most likely primary and nothing to worry about :)

[axolotl]

I did some research

No you didn't, you did some frantic anxiety-fuelled Googling. The things we do when the anxiety dragon controls our typing-fingers isn't "research".

Reynaud's is a benign diagnosis. No need to start chasing all kind of rare nasties when it looks like you have an answer.

[pulisa]

I have had two episodes of Raynaud's recently, affecting just my right middle finger. I'm going to the derm Wednesday and am going to ask about scleroderma, because Raynaud's is not normally primary at my age (49).

If you're in your 20s, it's most likely primary and nothing to worry about :)

I'm older than you, Mel, and have primary Raynaud's. I wouldn't worry about a solitary finger being affected-all of my fingers and toes are afected in the cold weather (and it's still plain old primary Raynaud's). I wouldn't waste your money.

[melfish]

It's not age per se, it's age of onset. I expect it's just a new symptom of my long-standing vascular dysregulation: migraine with aura, low BP. I've always had cold feet and hands, just never had a white finger before. Scleroderma is just something they like to rule out when you have late onset

[itiswhatitis]

I have had two episodes of Raynaud's recently, affecting just my right middle finger. I'm going to the derm Wednesday and am going to ask about scleroderma, because Raynaud's is not normally primary at my age (49).

If you're in your 20s, it's most likely primary and nothing to worry about :)

I’m 23, so yeah I’m hoping and expecting it (realistically) to be primary. I have had Raynaud’s flare ups for many years actually (even when I was a kid I noticed I had poor circulation, sometimes my knees would be blue etc) I just hadn’t been diagnosed until now (as I’d nevee mentioned it to the doctor - the finger swelling that I’ve had is the thing that’s made me worry so much lately and go to the doctor)
I’ll be thinking of you and I really hope they find out what’s going on with yours and I hope it’s something they will be able to help you manage.

@axolotl You’re absolutely right. I just found the scariest thing and gave myself a death sentence lol last night I really freaked out but I’ve been managing my anxiety better today (although obviously I’m still nervous) But last night I honestly reacted as if I was about to die. Anxiety really is the worst.

[pulisa]

"Vascular dysregulation"??? One white finger? Is that actually Raynaud's? Not sure the NHS here would agree?

[melfish]

Yes, vascular dysregulation. (Or Flammer syndrome, as it's now known.) It's a diagnosis, fair dinkum. I don't know at what point one white finger becomes Raynaud's lol. Is it even? It's not cold enough here to tell, and I'm not about to stick my hands in the freezer

[itiswhatitis]

Just went to get my blood tests, now I just have to wait. I’m tempted to google but I know it just causes more anxiety. I’m just praying that when they get the results I’m ok and I have at most primary Raynaud’s and can start to relax.

[Pollikin]

Hi. Just to let you know that I have had scleroderma for nearly 10 years and, as with all things, there’s an awful lot of frightening, worse case scenario stuff out there. IF and it’s a BIG if, as Raynauds is really quite a common condition, Scleroderma isn’t the death sentence you might have been led to believe. I have check ups and I’m absolutely FINE

[itiswhatitis]

Hi. Just to let you know that I have had scleroderma for nearly 10 years and, as with all things, there’s an awful lot of frightening, worse case scenario stuff out there. IF and it’s a BIG if, as Raynauds is really quite a common condition, Scleroderma isn’t the death sentence you might have been led to believe. I have check ups and I’m absolutely FINE

Thank you so much, that is very helpful. I joined a group on Facebook about Raynaud’s and some people on there said they have scleroderma too and are doing ok, so it does reassure me. Just reading all the horror stories online really scared me. As soon as I read them I really thought that this was it and gave myself a death sentence.

[axolotl]

Just reading all the horror stories online really scared me.

I'm sure you know the answer to that. ;)

[swgrl09]

I’ve had raynauds forever .. first flare up was when i was probably 8 or 9. I’ve never had complications or other issues from it other than the annoyance and discomfort.

[pulisa]

It's no big deal really. Just means you have to have decent gloves and socks in colder weather. I always wear 2 pairs of socks but haven't yet found gloves that prevent white fingers! (Despite ordering fancy silver ones from the Raynaud's Society!)

[ckelley116]

Thank you so much, that is very helpful. I joined a group on Facebook about Raynaud’s and some people on there said they have scleroderma too and are doing ok, so it does reassure me. Just reading all the horror stories online really scared me. As soon as I read them I really thought that this was it and gave myself a death sentence.

Ahh I did that too. For rheumatoid arthritis. I was hoping to get some comfort from real people with the disease and it made things 1000x times worse. I left the group. But I'm glad you were able to get some comfort!

I went through a brief (like 24 hours) scleroderma fear until I realized how absolutely rare it is :)

[swgrl09]

It's no big deal really. Just means you have to have decent gloves and socks in colder weather. I always wear 2 pairs of socks but haven't yet found gloves that prevent white fingers! (Despite ordering fancy silver ones from the Raynaud's Society!)

Yes, I have been wearing 2 pairs of socks for the past two months now that it's winter! And I find any that are too tight also make it worse because my blood can't flow. With gloves, I think mittens are better for me honestly even though they are kind of annoying. And you can always toss a hand warmer in there easily.

[itiswhatitis]

Got my blood test results, only talked to a receptionist though who said “all normal” which is comforting but I’m going to go and see my doctor on Monday just for confirmation. My swollen finger seems to have gone down a little of the past couple of days too. Not completely normal but smaller and has better flexibility now (can bend it down to my hand without it getting stuck hovering above)
I’ve been wearing these special arthritis helping gloves I got the other day, using my ibuprofen gel as directed, and also have cut down on washing my hands (I used to do it constantly but I think the cold water might have been aggravating me) Also I haven’t been using my computer and mouse recently either which might be helping (the swollen finger was on the hand I use for the mouse and I constantly had that finger bent while using it because it’s a pretty small mouse)

---------- Post added at 17:28 ---------- Previous post was at 14:09 ----------

Sorry to bump this again - was supposed to see therapist today but she cancelled so it’s been a hard one.

Because my blood tests came back ok, can I safely assume that I probably don’t have scleroderma? I’m seeing doctor on Monday to go over everything but just need some reassurance I guess.

[itiswhatitis]

Sorry to constantly be making posts. I feel like such a pain at the moment. Was supposed to see my therapist yesterday but she cancelled until next week. I appreciate you guys being there for me.

Got my blood test results back - (backstory: had swollen finger for nearly over a month along with chilblains on same hand)

The results came back “all normal” according to the person I talked to on the phone. Going to the doctor on Monday to go through it properly, but can I safely assume for now that I probably don’t have scleroderma?

I’ve been googling again, I know I shouldn’t but I’m having a hard time. I’ve noticed that because the swelling and stuff has only been on one finger and the colour changes are only really on that hand too - it can mean that Raynaud’s is secondary. That’s kind of my fear. My other hand CAN have color changes if I’m outside but the right one at the moment is constantly different colours. I don’t even know if it’s Raynauds though. It doesn’t hurt really, just the chilblains hurt sometimes.

My changing colours I mean it’s mainly red/blueish, but if I straighten my fingers the joint areas go white.

[nomorepanic]

Threads merged - please just update this one

[Nikred2248]

I too have Raynauds :scared15: that I first noticed when I was 25. I am now 39 and for 3 years I have been suffering from severe anxiety and panic disorder because my raynauds got worse and I googled it and read all about Scleroderma. I have acid reflux and had no idea that was related to any kind of serious disease. I went to a scleroderma specialist who said it is not scleroderma based on extensive blood testing each year for the past 3 years. This has ruined my life. Anyone else anxiety from this? Thank you

[Annaboodle]

I too have Raynauds :scared15: that I first noticed when I was 25. I am now 39 and for 3 years I have been suffering from severe anxiety and panic disorder because my raynauds got worse and I googled it and read all about Scleroderma. I have acid reflux and had no idea that was related to any kind of serious disease. I went to a scleroderma specialist who said it is not scleroderma based on extensive blood testing each year for the past 3 years. This has ruined my life. Anyone else anxiety from this? Thank you

So are you thinking that the scleroderma specialist got it wrong or missed something?

[Nikred2248]

I know this probably sounds weird but yes I think from what I have read online that sometimes blood can take years to catch up with the symptoms. I read all about antibodies and a negative does not always mean negative. I just don't know how to accept what the doctor says.