Reynauds syndrome

[Molly108]

hi, I’m very new to Reynauds as in a diagnosis and it seems it is linked to my B12 deficiency and me having long covid. Any tips or input to what to expect as a way of treatment or if it will get better will be appreciated. I have started B12 injections TIA

[Nw6London]

Hi Molly, sorry to hear that you are experiencing Raynauds. How are you managing with it? Hopefully as the weather gets warmer you should get some relief!

I have secondary raynauds and my daily go to's:

- washing up with gloves, including when washing fruits and veg.

- rechargeable hand warmers

- rechargeable heated insoles (thermrup are by far the best, I've found, but quite pricey)

- disposable hand and toe warmers - the ones that stick to your shoes/ socks - particularly for the warmer months where its not practical to wear my heated insoles

- heated gilet by Dukuseek on amazon is incredible.

- wool socks (not cotton or any other material). Merino wool in the summer.

I'm not medicated for my raynauds and it's progressed quite rapidly since the first episode in 2020 - from one white finger to full blown dark blue hands and fingers. But the above management seem to work quite well and haven't experienced any digital ulcers either.

If you haven't already, you may want to investigate whether your raynauds is primary or secondary and have the blood work done to eliminate any connective tissue disease. Raynauds is often (but not always), one of the first visible and notable signs of something that warrants looking into. The next step after that, depending on the results, Is to get a referral to a good rheumatologist as the GPs are often clueless (in the nicest way)! For me, raynauds was the first "symptom" of very active Scleroderma (systemic sclerosis). I'm now medicated to prevent further progression.

Anyway, no harm checking and fingers crossed for you that it's nothing more sinister. If it is, you can approach it in an informed way.

Good luck!!

[Pixix in reply to Nw6London]

Thanks, that helped me, too…I’ve commented below…I’m a newbie, too!

[Nw6London in reply to Pixix]

Welcome! 😊 I'm glad it was helpful! I will always advocate for getting the full ANA blood tests done just to be sure so you can dismiss anything related to CTD. With a lot of these, diagnosing early means that your quality of life (and in some cases), life expectancy is dramatically improved. The nature of auto immune diseases also means that there are a lot of "random" things going on in the body too which much seem unconnected - until all the pieces are put together. Good luck on your journey!! 😊

[Pixix in reply to Nw6London]

I also have trochanteric bursitis, fibromyalgia, Polymyalgia, sciatica, hypermobility, probable Ehlers Danlos syndrome, my knees point outwards, my hip muscles are growing bones on them, I have bad osteoarthritis, mainly hands & feet, & a benign tumour on my spine. That’s why I haven’t found time to learn much about Raynauds yet, as some of the above list also landed in the past six months! Doctor gave me two long one hour consultations, & found a lot wrong, now we try & attack one thing at a time! Thanks for your help!!

[Molly108 in reply to Pixix]

aww that is a lot to deal with. Best of luck with it all x

[Pixix in reply to Molly108]

Thanks! I need it!

[Nw6London in reply to Pixix]

Yes, you have a lot on your plate. Sending support and the head space to live in the present and make memories. ❤️

[Pixix in reply to Nw6London]

Thanks, attempting to have fun as well as pain. I always look on the bright side of life!

[Deby177]

I'm interested never knew you got get B12 injection for raynauds was that Gp or rheumatology that have prescribed it for you?

[Midgebite21 in reply to Deby177]

I don’t think it is a regular treatment for Raynauds especially secondary. B12 in general is good for circulation inparticular red blood cell production. Niacin B3 is supposed to be beneficial to Raynauds but I’m not sure how. I suppose anything is worth a try.

[Molly108 in reply to Midgebite21]

Reynauds is one of the symptoms that link to B12 deficiency x

[Pixix]

Sorry, no help here, but interest! I was diagnosed just 3 months ago, & bloods (unrelated, carried out for another illness) showed I have very low folate. I’ve been put on folic acid for six months. Naturally, seeing your post, I’m interested to join in (not hijacking your post), I’m wondering now if there’s a link…& wonder if mine will improve! I was diagnosed with other diseases around the same time, so, apart from buying gloves & more gloves, haven’t given Raynauds any thought (apart from joining this forum)!

[Molly108 in reply to Pixix]

same here Pixix, the bloods were done to double check how I’m doing long covid wise. My folate was very low and B12 moderately low and it wasn’t until the dr said the issues with my hands n feet is a symptom I was clueless.

[Pixix in reply to Molly108]

interesting, thanks, I’ve not heard of anybody else being low on folate. Mine was very low & im taking folic acid for six months. My B12 was OK, though!

[Molly108 in reply to Pixix]

I was told low folate can give a false high b12 reading. So might be worth making sure B12 is checked again when folate is within normal range, hopefully your dr is already aware and will know this x

[Pixix in reply to Molly108]

Thanks, that’s interesting. I had no idea. Dr probably is, he’s a good one! Guess I will have bloods again when I’ve taken the folic acid for six months, I’m about half way through. S x

[Molly108]

Thanks all, I think my Reynauds is secondary to my b12 deficiency. I also get pain/tingling/burning yet cold feet and know this is probably more peripheral neuropathy both started since covid infection and now long covid but also found out is a symptom of b12 deficiency so they definitely cross over. It was the gp who wrote it up in my notes when I saw him about my symptoms. I’ve yet to talk to a gp further about it but think they wanted me to have the injections first to see if they help as my folate and b12 were low

[Nw6London in reply to Molly108]

Amazing that you're so in tune with your body! 😊 That often helps. Whilst your GP may have good intentions, many don't fully understand CTD and can't determine for sure whether raynauds is primary or secondary without an ANA blood test. Simple enough to do to dismiss anything - especially given the tingling/ burning etc. Nonetheless, I hope things are positive for you and you find success in getting your b12 under control. ❤️

[Molly108 in reply to Nw6London]

What does an antigen blood test look like as in what does it say on a blood test? I may of had it done already?? I may be in tune with my body but it seems previous chats with doctors have all dismissed my symptoms as long covid and never delved into them further until I booked a face to face!

[Nw6London in reply to Molly108]

It happens - don't worry! You need an ANA blood test. (Antinuclear antibody (ANA) blood test). Each CTD will have its own marker - SCL70 for scleroderma. (I don't know the others by heart). That said, I've seen other posts that sometimes the test doesn't pick up any markers at all, despite a lot of physical symptoms - but cross that bridge when you get there.

Once you get your results, ask for a referral to a rheumatologist as they will do more in depth testing depending on the marker and can guide you accordingly under specialist care. Good luck!!

[Molly108 in reply to Nw6London]

ah my Ana was negative 🤔

[Nw6London in reply to Molly108]

Eesh, well, it's a continuous battle for answers then. But, most importantly, control the controllables and keep a log of your symptoms and how they evolve. ❤️

[Molly108 in reply to Nw6London]

thank you for the advice and help x

[Clangerscat]

Hi Molly I am fairly new to reynauds as well but had cancer years ago and always remember being told your body’s first defence against disease or infection is your skin so moisturising is so important even when you have no symptoms in your fingers. Good luck.

[Molly108 in reply to Clangerscat]

yes I am very dry and do try to moisturise daily x

[KathleenMary in reply to Clangerscat]

And I was advised to avoid using products containing soap