Raynauds. Reassurance or help please

[Louisethemum]

Hi there
My 8yo daughter has recently developed what I'm sure is raynauds symptoms. Her middle finger, sometimes on both hands, goes numb and white when she gets too cold.
My mum has raynauds and I've had a couple of instances myself.
However what has now worried me sick is reading that onset of Raynauds under the age of 12 is rare and is often an indicator of some fairly awful autoimmune diseases. I have an autoimmune disease and there's an incredibly strong family history.
I am worried sick. I've read far too much on Google and am terrified.
I will of course be contacting the GP on Monday as per instructions on the NHS website but just wondered if anyone has any experience of this?

Dc2 was diagnosed a couple of years ago (under 12) we also have a history of autoimmune disease and dc has a few other medical issues. My next discussion with the gp now its finally under control is to ask them to look at any related health issues.
It got so bad toes were purple, they got infected and the fingers were red and white blotchy.
After months of antibiotics and creams the gp prescribed nifedipine (rarely given to children as lowers blood pressure so you have to be careful) which has been life changing.
Dc also wears several layers, fingerless gloves, minimum two pairs of socks and avoids going outside if too cold.
School care plan means dc won't go outside when too cold for pe/play times and won't be put by a window.
When dc has had the odd flare up in recent times the gp has asked about covid as especially in children they present very similar, so be prepared to test.

I've had raynauds for my whole life, since I can remember. I've been told it gets better as you get older but actually I'm worse! It's annoying but that's all and I haven't had any other problems. My dad also has it and he's 73. Try not to worry x

@Clockbookbeast
Hi there

Your sons experience sounds hard, I hope he is well now and that it stays under control. Luckily my little girls has been very mild so far.

Were you not referred by your GP when your little one was diagnosed? I'm going to specifically request this as it is in the NICE guidelines that a child under 12 should be referred to a rheumatologist to rule out secondary raynauds to a systemic disease. I'm really worrying that it is JSS or another connective tissue AID, which all sound awful. I've been sat in tears. Fingers crossed it's all ok

@TooMinty

Hi there,

Most don't get diagnosed until their teens, before then it seems to be a strong indicator of severe auto immune diseases. It's because of this I'm worried sick 😞😥

Obviously get tested but on it's own it isn't necessarily an issue. I think you can have strong raynouds symptoms and start early without it being anything more

@TooMinty I so hope you're right. This has woken me up to how fragile everything is. I'm genuinely beside myself as I'm just convinced 😥😥😥

I was diagnosed with raynauds about age 9 or 10. "Most" means on average and all averages have outliers (me!). I have had black toes, fingers go white even in August.

Bless you, it's so stressful being a parent isn't it? Fingers crossed (not actually for me as it hurts 😂) that it's just raynauds and nothing else x

@TooMinty thank you, yes it's the hardest thing I've ever done. I'm a terrible worrier and I think this will finish me off!
My mum suffers as you describe but she wasn't diagnosed until her teenage years.
I hope that the warmer weather coming sees your symptoms alleviate. Thank you for taking the time to reply. Panicking is often incredibly lonely x

Earlier diagnosis might just be because it's a more recognised condition now.

Those cashmere fingerless gloves from Turtledove are great, and layers of clothes - Uniqlo heat tech stuff is good. And I have a Primark down jacket that I wear under another coat.

Remember to take care of yourself too x

Hey @Louisethemum, all I would say is try not to worry or google anything - just speak to your gp. I have Raynaud's (am now 40) and I live in a warmer climate now so am mostly unaffected - however not so long ago I went to the GP all worried about secondary issues and it was ruled out with a simple blood test. It could be nothing - try not to think about it until you have conclusive evidence from the doctor!

Google is absolutely dreadful for getting us worried - I now have to avoid it completely after having a nervous breakdown googling way too much about another medical condition. I made myself sicker than the actual condition (which was short lived). I have ongoing CBT therapy with a psychologist to manage my worrying/anxiety. Be careful!

Fingers crossed all is fine with your DC x

Thank you both. I have thyroid disease (autoimmune 🙄) so am no stranger to the cold myself!!
I do have issues with anxiety and Google has sent me off the deep end. Once you read it, you just can't un-know it though 😞 let's hope GP is proactive and we're not too long waiting to speak to someone x

Totally. I was completely off the deep end, taking thick stacks of printouts (highlighted!) to the doctor's office, thinking I was solving the whole thing. Couldn't sleep at night, turning over every tiny symptom in my mind. Turns out I was barking completely up the wrong tree and should have relaxed and just left it to the professionals. Try not to do what I did!

Rheumatologists don’t class white phase fingers as Raynauds, to be a true Raynauds there needs to be a blue phase.

My sister had it in her teenage years and in her 20s and it faded away. She has no sequels or any other serious health issue. It’s a good idea to consult a GP but try not to think about the worst outcome. A friend of mine also has it so it might be quite common.

Thanks

She has been referred this morning as per nice guidelines. I doubt we will be seen very soon in this current climate but at least I have got things moving. Sadly I did have to go up against the GP who wasn't aware of the nice guidelines or secondary Raynauds but we got there in the end. Desperately praying it's nothing, but cannot assume it's nothing 😞

Hello @Louisethemum I know this is an old thread but did you get anywhere with your referral?

Hi there @MumJenn
Sorry - different username.

I did contact the GP who did refer (she didn't want to, but those are the NICE guidelines) and The children's rheumatology department happily accepted the referral, however, I'm afraid we don't have any answers! My daughter has had lots of blood tests, which have confirmed that she has the markers for a potential autoimmune disease, however, thankfully doesn't appear to have one (or have developed one) since the onset of Raynauds. She has had lots of bloods because each time she's had high inflammation markers with no known cause. However, these did eventually drop, though we're still none the wiser!
She will be seen annually and possibly discharged by the team next year, but with an open referral so that we can get back on the books at any time if she does develop any other worrying symptoms.
So essentially, they took it very seriously and we are reassured that it isn't an indicator of anything more sinister currently. However, she's on their books should something develop. I was really pleased with their response and treatment. The only hard bit was getting it past the GP, who laughed in my face initially when I said I wanted a referral. She had no idea about any of it. I hope that helps!!

Sounds like it. I’ve had it all my life and so do all three of my kids. You can buy rechargeable hand warmers on Temu/Amazon, etc… They’re great to have handy in case of sore fingers. They warm up quickly and they look like ann oval-shaped rock and you just hold it in your hands. I bought mine on Ali Express and it doubles as a phone charger. You can also buy cute kids ones with animals. Later on, look at heated gloves and innersoles as well. (Also merino glove liners are great too.)

Below are just some examples of what I’m talking about. The stick shaped ones look very portable for small paws too. These are all from Ali Express. Mine is like the top left cream one.

@Louisethemum@carlottacandle
Thanks so much for getting back to me. I'm glad your daughter is doing well. My little girl (15m) has had raynauds symptoms from a few months old and has just been referred. She's also really suffered with lower respiratory tract infections, pneumonia, bronchiolitis, bronchitis etc and has been hospitalised many times so were trying to get to the bottom of whether there is a connection. I'm hopeful the referral won't take too long and we can get some answers

I also have positive autoimmune markers and never got to the bottom of my condition so worried it will be the same for her

@MumJenn it sounds like you have been going through a really tough time, I hope you aren’t waiting too long for the referral too. Between my immediate family (both sides!) and I, I think we have most of the autoimmune diseases going. Luckily mine is mild. The rheumatologist said she would expect my daughter to have those markers considering my family history, so she wasn’t overly concerned. I hope that for your daughter they can find the issue so you can improve her overal health and take some of the worry away! X