Is this raynauds?: Hi, I hope you don't... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Is this raynauds?

emnemz profile image
15 Replies

Hi, I hope you don't mind me posting I'm just at a bit of a loss and can't get any answers. I am 29 years old, and since august when it's cold outside I cannot get warm. And I get a mottled rash on my arms legs hands and feet. It is also worsened when my anxiety is high which is quite regular at the moment. I'm back at the docs Friday, but last time I went I got made to feel that I was overreacting, and it was something and nothing, but I am noticing this at least 10 times a day at the moment and I'm literally like ice, even when layering. The last few weeks it's mainly effecting the left side for some reason.

Thanks for reading. (And having to look at my legs 😬)

X

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emnemz profile image
emnemz
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15 Replies
gindy profile image
gindy

Hi emnemz ,

Tbh it'd be difficult for any of us to say with any certainly whether your issues are Raynauds related. The reason being that Raynauds symptoms are quite difficult to pin down on their own. It's usually a collection of symptoms and reactions to the cold that'll lead to a positive diagnosis.

That said, your worries aren't necessarily unfounded. I'd suggest pressing your gp to give u a rheumatologist appointment/referral, as they are the specialists best placed to diagnose RP or any of the related auto immune illnesses. I personally don't think you're overreacting, we are all best placed to know when somethings wrong in our own bodies. So yes, I'd definitely advocate pressing for that referral to a rheumy.

Good luck, let us know how u get on.

emnemz profile image
emnemz

Thank you so much for your response gindy. I'm seeing a different doctor on Friday so fingers crossed for a better response and I will suggest a referral too. I find once you have anxiety, no matter how well controlled everything just gets swept under the rug unfortunately.

I will update u following my appt x

gindy profile image
gindy in reply toemnemz

Ah I can imagine that once you've had any mental health issues, even depression, that the docs first 'go to' explanation is to lump it into that diagnosis. It's wrong, but I think that the NHS are so very overstretched atm, that often doc's are diagnosing on the fly.

It's getting to the stage with our doctors that I always book using the online facility, so that I don't have to battle with an overly intrusive receptionist who seem top relish acting like the blooming Gestapo :( if it wasn't so annoying it'd be comical.

Let's hope your next appointment garners you a better result as I do think you need your mind putting at rest, as either way, Raynauds our not, you're becoming more stressed with your concerns seemingly ignored.

I'll look out for your post letting us know how things pan out.

emnemz profile image
emnemz

Yes unfortunately anything and everything is lumped under the anxiety umbrella which to me is ludicrous. When I showed one of the doctors, she was just like oh well maybe we all get that I'll have to check myself which annoyed me slightly!

I always book mine in advance now not worth doing it on the day at all!

Thanks for helping me out gindy!

Dodder2012 profile image
Dodder2012

I think anxiety IS one of 'our' symptoms

Delissedoesclay profile image
Delissedoesclay in reply toDodder2012

it is

Creaky-Paddler profile image
Creaky-Paddler

Hi

I have raynauds, it affects my hands and feet quite badly, I also have the same rash as you, sometimes it can be darker than others, and yes, like raynauds it flares with temperature changes and stress.

It is called Livedo reticularis.

It can be linked to various conditions, mention it to your GP and request blood tests to investigate.

Mine is quite likely to be related to a blood condition called APS, but I'm still in limbo at the moment

Delissedoesclay profile image
Delissedoesclay in reply toCreaky-Paddler

thanks for the information this helps me put it together

emnemz profile image
emnemz

I never knew that dodder so thank you for that.

Donm, thank you, I had come across that too, so I am going to request the blood tests. Is it different bloods to a full blood count? I don't think it's something that should really be overlooked anymore x

Creaky-Paddler profile image
Creaky-Paddler in reply toemnemz

There is a support group in here for APS

healthunlocked.com/hughes-s...

There are some very helpful sticky posts and reports from prof Hughes himself.

Also have a look at the main site aps-support.org.uk/

There are various blood tests, so far mine have come back clear, but I am sure this is my problem.

I've been put on aspirin, but still going through tests etc

Good luck! We are a tricky lot to diagnose.

emnemz profile image
emnemz

My god donm that's spooky, one of the reasons I have this appt is because my memory has got so shocking. I also get a lot of headaches and flashing lights in my eyes, floaters etc so that was a really interesting read. Never heard of that condition before!x

Delissedoesclay profile image
Delissedoesclay in reply toemnemz

Don ??? what is this

Romay profile image
Romay

I Became terrified of injections shortly after diagnosis mostly because skin so painful

one doctor said the immune system is part of the body defence mechanism and may be my fight or flight response was also being over active. do not know if this is medically proven but certainly ten years later my immune system is suppressed and I feel less anxious than ever before in my life I was also told most people with this group of diseases get mental issues dealing with the long term issues but I ask myself what comes first the anxiety or the over active immune system! do not try to explain this to a doctor it is not in their text books It is rare for a first diagnosis of scleroderma to be diagnosed by a gp in the early stages, There are lots of other causes of renauds and similar cold induced rashes. romay

Delissedoesclay profile image
Delissedoesclay

Yes I get it the rash when iam cold I be live it's from the raynauds also when I have anxiety iam meditating more and doing breathing exercise which help also it helps me with the ulcer on my finger so painful

littleones profile image
littleones

Hi did you ever find the reason for this as I have been getting the same thing happens when ever I'm standing up knees go redish purple and blotchy down lower legs and have ice cold toes.Any info would be great please as my doctors just shrug it all off😕

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