Raynauds type symptoms but confusing

[Deronda77]

I was hoping to get your thoughts while I'm waiting for the results of an ANA screen and while referrals to a rheumatologist are still closed in my part of the UK.

Just before lockdown in March I developed a numbish toe on my right foot and noticed a band like feeling round my left ankle. I saw a gp and he thought that I had some tendon problems and that my circulation seemed fine. In early April my fingertip pads became pruny and felt 'funny' and sore. I tried using moisturiser and keeping my fingers warm and they seemed to improve for a few days but then it came back again. The nurse ordered blood tests for iron and vit D and the ANA. The iron and vit D came back low and I am currently taking pills to get them up. The nurse thinks it possible the problems are due to vitamin deficiency. I can now see my fingertips go icy cold if they go near any sort of coldness and then wrinkle even more and respond well to warming and alcohol. My toe has also improved quite a lot now.

I've always had cold hands and feet and since my thirties would get a literal dead toe (totally numb and white) that would need hair drying back to life if I was out in 0 degrees temperatures for to long although I hadn't had it in a few years mainly cause I now drive I think. This winter because I live in a less warm house I have noticed really cold toes when working from home that have needed help from being dipped in warm water to get them toasty again. Then all this starts. I have really severe health anxiety leading to panic attacks that these symptoms and the test wait combined with covid fear and lack of nhs services has flared up, and am now being set up with an online counselor and medication to try and manage.

So my hopeful questions are:

Although my previous experiences sound quite raynaud-y I'm not clear about the current permanent problems. E.g constant mild pruning, hold indentations to long and sore slightly pink pads? I've also noticed a small band of palor under nails e.g going up from moon, pink skin then weird pale then pink again. Is all this typical raynauds whether primary or secondary?

I'm 43 and also smoke and am perimenopause and 3 weeks before toe started stopped taking hrt after 6 weeks as made me so ill. Is it possible hrt pushed existing symptoms over the edge into this?

Can low vit d and iron possibly b12 create these problems?

If you have anything hopeful to add to stop me thinking I've got an underlying illness or that my fingers are going to drop off please do say it- I'm a wreck!

Thank-you xxx

[MissusTee]

Hi,

If you have raynauds you would notice marked colour changes in your digits, pronounced white fingers/toes which turn black/purple/red when the blood supply improves. Obviously if you smoke this might cause other problems. Maybe put a photo up so that we can see?

[Deronda77]

Hello! Not sure if I'm being a bit thick but could only add one photo. The only thing I do get now is the last time I went to the supermarket the chilled and frozen section literally made my fingertips like ice and generally that's what the outside does aswell without gloves in the last few weeks and also they wrinkle and get a bit cold if I do stuff with my hands a lot. It's so strange. The lack of dramatic colour and the fact that the wrinkles don't go is what doesn't seem typical. Although when the toe happened years ago that was very definitely transient and corpse white to red. Thank-you!

[tanya1981]

Hello Deronda,

You mention that the nurse ordered ANA tests on top of the iron and Vitamins D... what was the result of those? Quite frankly, all you’re describing appears quite mild (including the picture) so it’s not very likely that you have any underlying disease to keep you awake and worried. And even if you did, the spectrum of the disease is so wide that you may never have the range of symptoms pi was/hear about on this forum. So cheer up, try to relax and focus on doing things you enjoy! Stress and anxiety will never be your friends In any health battle anyways. X

[Deronda77 in reply to tanya1981]

Thank-you. I got the results of the ANA screening yesterday and it was negative so was feeling pretty positive but....had noticed right thumb tingling a lot last 3 days but tried to ignore it as it wasnt cold but tonight noticed its massively indented along wrinkle and just wont puff back up again even though warm ☹. Nurse told me yesterday I may have to wait months for rheumatologist to open up what do I do?? 😥😥😥 added new pic above.

[tanya1981]

So very good news all in all then! If ANA is negative, and if the test was reliable, then you have no underlying disease to worry about! Just rest now, catch up on the vitamins and minerals your body is missing and use week known emollients for your skin (diprobase, E45 etc),

[Deronda77]

Thank-you all your replies are helping x I had a few hours fitful sleep constantly trying to stave off a panic attack, expecting to see my thumb dropping off in the morning and off course when I woke up thumb back to normal. I think I'm going crazy or at the very least sending my poor husband crazy 🙄🤷‍♀️ thank-you again for listening x

[Deronda77]

Hello I hope you dont mind me updating this but in cases it's helpful to anyone in the future. I finally got a lovely gp who tested me for everything and it came back as really low b12 along with iron which she thinks is the cause of everything so have my first b12 jab tomorrow morning. I also found a thread tonight on a pernicious anemia group mentioning low b12 and pruning so fingers crossed this gets to the bottom of it.