Reynaud’s

[Krawlins]

Hi, all my three children (grown adults now from 25 to 36) have quite severe Raynaud’s symptoms in their hands (I have it mildly in hands and feet) but their symptoms are clearly visible, if they’ve ever mentioned it to GP it’s not been taken seriously, eldest was simply told to wear gloves and two pairs of socks. Is it nothing to worry about? I know my mum had it too, clearly remember her showing me her dead white fingers.

Does it normally accompany any other problems, they all, like me suffer from symptoms of weak back/slipped disc as did my mum too, I’ve had a discectomy but now other slightly bulging discs, signs of dehydrated discs and severe narrowing together with osteoporosis and osteoarthritis in all my joints so does Reynauds accompany arthritis?

Thanks for any wise words

Kay

[NanaFifi]

I have mild Raynaud’s and as far as I’m aware it’s quite common for people with arthritis to have Raynaud’s but that is just my understanding. I have RA and Lupus.

Fiona

[Krawlins in reply to NanaFifi]

Thank you Fiona, I can’t understand why a professional would dismiss it? Even I was eventually turned away from rheumatology when mri discovered all my back issues!

[Hidden]

From what I understand, Raynaud's is an autoimmune disease like Rheumatoid Arthritis, but not osteoarthritis. You will need to try and get your children referred to a Rheumatologist so they can get the correct treatment. I hope this might help.

versusarthritis.org/about-a...

[Krawlins in reply to Hidden]

Thank you poems, you’d think they just might take it seriously if so.

I’m about to take a look at the link, thank you 😊

[NanaFifi in reply to Hidden]

That’s how I understand it too and once you have one autoimmune disease unfortunately you are more than likely to develop others. I started with SLE then RA then under active thyroid then Reynaud’s . . . . .

[Krawlins in reply to NanaFifi]

Oh my goodness, what a lot to contend with Fiona, I hope you’ve found ways to tolerate the symptoms xx

[NanaFifi in reply to Krawlins]

My problems all started 40 years ago when I was only 20 years old! According to my Rheumatologist I’m on the best medication for my Lupus - hydroxychloroquine and the best medication for RA - Methotrexate. I’m a the stage now where muscles are diseased and joints are giving up on me! 10 surgeries in the last 10 years!! However, if that’s what it takes to keep me going , what choice do I have?onwards and upwards, paint on that smile 😁 xx

[Hidden in reply to NanaFifi]

I started with RA 32 years ago, quickly followed by Sjogren's Syndrome and now Vasculitis. Possibly got IBS too. Not to mention Bronchiectasis, Osteoarthritis and Osteoporosis. 🙄

[NanaFifi in reply to Hidden]

Sounds like you have a lot on your plate too! As if it’s not bad enough having these illnesses you have to put up with all the side effects from the drugs. Dry mouth, dry eyes, constipation, IBS, brain fog! and just to add insult to injury we still have to put up with all the 💩 that goes with that!!! You have to laugh otherwise you would cry!! 😄😫

[Hidden in reply to NanaFifi]

Font sure which to do. 😢

[NanaFifi in reply to Hidden]

Prime example of brain fog - completely missed out the word menopause in my last reply to you 😳

[Hidden in reply to NanaFifi]

That's nothing, I don't even understand my last reply to you. Maybe I was speaking Martian. 😳😜

[NanaFifi in reply to Hidden]

I font know about that 😘🤪

[Hidden in reply to NanaFifi]

LOL

[Hidden in reply to Hidden]

This might help - it’s actually not autoimmune for real majority of sufferers which is probably why they aren’t referred to a rheumatologist unless it progresses xx

hopkinsmedicine.org/health/...

“Raynaud’s can occur on its own, known as primary form. Or it may happen along with other diseases, known as secondary form. The diseases most often linked with Raynaud’s are autoimmune or connective tissue diseases such as:

Lupus (systemic lupus erythematous)

Scleroderma

CREST syndrome (a form of scleroderma)

Buerger disease

Sjögren syndrome

Rheumatoid arthritis

Occlusive vascular disease, such as atherosclerosis

Polymyositis

Blood disorders, such as Cryoglobulinemia

Thyroid disorders

Pulmonary hypertension

The primary form of Raynaud’s is the most common type. It often begins between ages 15 and 25. It’s less severe than secondary Raynaud’s. People with primary Raynaud’s do not often develop a related condition” in.

[Iluvgardening in reply to Hidden]

Thanks for sharing good informative article. I have raynauds and also have Psoriatic arthritis. It hasn't been a good morning here in Texas for either🤪dropped into the 30's so hands are freezing and my hip doesn't want to move! Ready for Summer 😁

[Krawlins in reply to Hidden]

Thank you Twitchy, and all who responded, my children have little faith in the GP that i can’t imagine they will seek assistance at this point., it’s me who is concerned, i sometimes feel guilty they’ve inherited these things. Such a good lot of info you have provided, hopefully they all have primary but i feel they’ve all got the same dodgy back as me.

Kay

[TKWoody1]

I have raynaurds inhands & feet & mygp told me that arthritis & raynaurds go hand in hand although raynaurds is a autoimmune disease & not circulatory disease ppl often get mistaken by it..

[Hidden in reply to TKWoody1]

This might help - it’s actually not autoimmune for real majority of sufferers which is probably why they aren’t referred to a rheumatologist unless it progresses.

hopkinsmedicine.org/health/...

“Raynaud’s can occur on its own, known as primary form. Or it may happen along with other diseases, known as secondary form. The diseases most often linked with Raynaud’s are autoimmune or connective tissue diseases such as:

Lupus (systemic lupus erythematous)

Scleroderma

CREST syndrome (a form of scleroderma)

Buerger disease

Sjögren syndrome

Rheumatoid arthritis

Occlusive vascular disease, such as atherosclerosis

Polymyositis

Blood disorders, such as Cryoglobulinemia

Thyroid disorders

Pulmonary hypertension

The primary form of Raynaud’s is the most common type. It often begins between ages 15 and 25. It’s less severe than secondary Raynaud’s. People with primary Raynaud’s do not often develop a related condition”

[Hidden]

Raynaud’s is classed into 2 types - primary and secondary. The most common type is primary and people usually start having this as children. Only 10% will go on to develop an autoimmune disease - for the rest it just remains a nuisance.

For those 10% for whom it changes they might start developing symptoms and signs of Sjögren’s, lupus or scleroderma and digits might even become gangrenous with ulceration.This is when doctors become a lot more concerned for obvious reasons and investigation begin for inflammatory arthritis, rashes, dry eyes and mouth, blood tests etc

The other group who are more at risk of secondary Raynaud’s (autoimmune) are those like me who only develop Raynaud’s later in life Ie over 30. This is viewed as significant because then it is secondary Raynaud’s and usually means that it will progress to include other rheumatic or arthritic diseases. But the digital ulcers and Sclerodactyl are the most concerning thing because they usually only affect a minority who have systemic sclerosis.

And SSc is rare so it can be hard to recognise it but for the fibrous, shiny hardening skin and digital ulcers. People with this severe type can even lose fingers and toes to the gangrenous frost bite when ulcers won’t heal. But most people don’t experience Raynaud’s anything like this severely.

[Krawlins in reply to Hidden]

That sounds awful TT the SSc.

My mum’s big toe went gangrenous, when the vascular surgeon saw it he said she needed an emergency op, it took so long despite messages left with his secretary with no response, trying to get a GP to visit to no avail, she eventually went in for angiogram first to make a decision how to proceed but she died within hour or so after that procedure, that was so sad 😞 her fingers used to go dead white and her poor feet were like blocks of ice, she became diabetic in her 70s

[Hidden in reply to Krawlins]

What a sad story Krawlins. My late mum died suddenly at 73 with all the signs of Pulmonary Hepertension and atherosclerosis shouting loudly at her. But because one GP had been dismissive of her description of faints and feeling of breathlessness as just “normal ageing” she never went back to see another 🤷🏼‍♀️X

[Krawlins]

That’s so sad twitchy and so so wrong.

We find it bad now but so much harder when you’re older to be heard and for gp to do the right thing. How they can honestly ignore such symptoms I don’t know. If your mum was anything like mine was, she never made a fuss, it was always me insist she visit the dr, can see why she felt it was a waste of time, the hard truth is she was told her foot needed amputation after the angiogram, but had they acted quicker she may have managed with our help losing just her toe. At the time my father didn’t want to pursue the autopsy that was offered, I so wish we had 😔

[Catseyes235]

I’ve had Raynaud’s since childhood as did my father and my daughter now. None of my siblings have this despite one also having arthritis. Used to have bad chilblains on my toes as a child too but rare now as I always wear double or even triple socks - usually cotton or cotton mix, but never ever nylon tights next to skin as they were the worst. and also never ever use a hot water bottle near feet only bed socks to warm up gently. Hands get it whenever and often in hottest summer when touching something like a cold tap sets it off. It’s the contrast maybe?

Have discovered quite thin silk gloves which I wear under other gloves. Even wear under latex ones when dibbling in the river checking fly larvae specimens. Work well while others are freezing! Got expensive wellies too for up to minus 40 degrees not that it’s that cold - but keep feet good and warm.

At nearly 70 am just used to it and dressing appropriately. This importantly also means keeping midsection and vital organs warm not just fingers - so double long t- shirts sometimes and several thin layers when cold out as your circulation protects the vitals first before extremities. Fashion of course takes a back seat as warmth wins every time!

I think it’s just one of those strange things and can’t really link to anything else although it was a bit worse when my thyroid was under active but then that slows your circulation anyway.

I did know someone with it quite badly and her doctor gave lot if same advice I do but warned against bad diet smoking etc in case affected the heart.

[Krawlins]

Thanks for your tips catseyes, gosh you have it bad and as you say you’ve learned to adapt and find some helpful solutions. Thank you