Perfect timeing for Raynauds - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Perfect timeing for Raynauds

JazPont profile image
15 Replies

I have only just recently developed Raynauds - what a fantastic time of year ey haha!

Any tips ? They hurt so bad :(

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JazPont profile image
JazPont
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15 Replies
beaglab profile image
beaglab

Raynaud's is always there, but is triggered by cold, stress or other sensitivities. Try Niacin, Twin Labs brand, 500 mgs, from the Bitamin Shoppe. You can take it up to give times. Daily. Read the book, Niacin the Real Story. It contains a lot of facts.

JazPont profile image
JazPont in reply to beaglab

beaglab thank you I’ll have a little look xx

Winfield1 profile image
Winfield1

Raynauds is really painful. It's currently my worst symptom and It's severe.

Keep your hands, feet and wrists warm - wear wool, eat well (mines worse when I've skipped meals) plenty of hot drinks to keep your body generally warm and avoid stress - if possible.

I've started to wear a woolly hat when it's cold (never bothered before due to hat hair) but loving my bobble hat - it does help.

Is your rheumy helpful?

I'm waiting to go to see the team at Royal Free in London. They are are specialist team and are set up for autoimmune sufferers including MCTD. It maybe worth asking for a referral to them as they really are a centre of excellence.

Also the Raynauds and Scleroderma Association have been really helpful - worth having a look at their website and chatting to one of their helpline staff.

Keep posting - we are here too :)

sruk.co.uk/find-support/hel...

JazPont profile image
JazPont in reply to Winfield1

I am also sat in a woolly hat 24/7 lol .... it takes hours for my hands, nose and feet to warm up! I have a nice hot bubble bath but I don’t know if it’s making my skin worse! Strange xxx

Hi i can see look what it's done to your finger nails!!!!!

Try putting Ginger and Cayenne pepper in your food

JazPont profile image
JazPont in reply to

Hidden thanks for the tip !! I’ll give that a go, yes they are extremely painful. I had blood splinters under my nails about 6 weeks ago! Xx

in reply to JazPont

Hi i was talking about your nail varnish/finish! lol

in reply to JazPont

But your fingers do look like mine with red nail end of them!

JazPont profile image
JazPont in reply to

Hidden oppppsss 😂😂😂 hahahahaha! If only Raynauds come with glitter ey haha

JazPont profile image
JazPont

Aww thank you guys!! This is my Raynauds on a good day believe it or not!

Winfield1 my rheumy dosnt know his arse from his elbow! He’s a locum. I’m meant to be seeing him every 4 weeks but there’s been a delay over the Christmas period so it’ll be 6 weeks at my next appointment. I’ve just got back from my GP who has upped my Omeprazole dose to 40mg daily to help with my CREST symptoms. And also upped my beta-blockers to 7mg daily.

My rheumy sent my bloods off to Bath laboratory because my local lab isn’t that advanced. They are looking for systemic sclerosis, I get those results on the 9th Jan. I’m pretty confident I have systemic sclerosis as does my GP. My Raynauds developed at the same time as the skin thickining on my face, arms, legs, hands, feet, chest and underarms! Same as the CREST, I’ve lost almost two stone in 3 months due to GI involvement, absolute agony when I eat, I had to eat my very small Christmas dinner in half an hour intervals due to slow motility. My GP said that my rheumy will more than likely refer me to a scleroderma specialist. Xxx

LilaJoe profile image
LilaJoe in reply to JazPont

Hi l can sympathise with you on small slow meals...misery!

I think for me the most weird current change is the eating, as since October it's become a real issue. I get full fast, feel constantly hungry, but get no satisfaction eating as it makes my throat and stomach hurt.

I'm hoping this will be temporary and I'll get back to my previously hale appetite .

I was given fortisips tho they are inflammatory with lots of veg oils, whey and glucose.

I hope you can find a way to help your eating again.

Sounds like you're having a really tough time, sorry about that Jaz . Hope you get results and a good team very soon.

JazPont profile image
JazPont

He diagnosed me with MCTD but no positive blood results !!!! That’s when he sent my blood works off to bath xx

JazPont profile image
JazPont

Does anyone know how to upload more than one photo ?xx

in reply to JazPont

As far as i know can only load one image per post!

Daisy78 profile image
Daisy78

Hi Jazpont

I have Raynauds and it's a constant battle for me to keep myself at a nice warm temperature at the mo.

Even when I feel I'm warm, my fingers and toes can be frozen.

It's so important to have gloves on, even indoors!! a woolly hat helps keeps the heat in and don't forget your feet, keep them toasty warm as well.

Lots of thin layers under a lovely thick jumper and leggings or tights under trousers all help.

If all else fails, take some time out, get your duvet on the sofa, a movie and a hot cuppa, bliss!!

Take care, keep warm x

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