Hi newbie here. Probable secondary Raynauds advice please.

[Otto11]

Hi

I have many health conditions a lot are auto immune. RA, Hypothyroidism, Excema, Asthma plus Epilepsy.. I had foot surgery on both feet last February for amputation of one toe & pinning of another due to RA & suddenly since October my feet started to go totally white & freezing with no feeling whatsoever. My legs are freezing up to calf level even inside the house.

My Rheumatology team are looking into it & am waiting for a Capiliaroscopy prior to diagnosis although they said its likely. My ankles have collapsed since surgery as only been able to wear sandals all year & I now have to wear deep inner soles so cannot wear more than one pair of socks. there is hardly room for my feet let alone another pair of socks & I'm already wearing a size 7 & I'm only a 5.5 prior to surgery.

The pain is dreadful & keeping me awake at night & I cant even take Paracetamol due to my epilepsy meds as I get rebound headaches.

Any help, advice or anything really as I'm really struggling mentally as well as physically. I just want to be able to walk again.

[Lupiknits]

My heart goes out to you. It does sound like Secondary Raynaud’s, which I have. Rheumatology needs to get a move on with capillaroscopy (sp) though there are meds for Raynaud’s your GP could offer, if they are able to be taken with your other meds.

I have similar problems with having to wear sandals year round because the systemic sclerosis has created a stiffening and tight swelling which makes any kind of shoes, socks or boots unbearably painful and it’s hard to flex my ankles. My feet and lower legs burn 24/7 whether they are cold or whether I’m experiencing Erythromelalgia from time to time.

I take a small dose of pregabalin which doesn’t remove the pain but takes the edge off it. The small dose is because I take an anti epileptic (lamotrigine) already and caution is advised when prescribing both.

One thing I’ve recently found helpful in the house if my feet are extremely cold are FALKE Men's Cosyshoe Slipper Socks (sorry for the caps, I copy and pasted from Amazon) got the men’s size so that they were looser. The sole is comfortable and grips well.

Could other things like heating pads help at night? I’m sure you’ve tried everything.

I really wish I could help more x

[bearman in reply to Lupiknits]

I discovered Allbirds shoes. They are made from wool so are very soft and warm, I live in them indoors and out. The only snags are they are not waterproof and the price, though I think they are worth every penny. You can also keep sending them back until you get the right size. They are a NewZealand firm so only have one shop in the UK, in London. But they do do UK mail order.

[Otto11 in reply to Lupiknits]

Bless you & thanks for your response. Like you i'm also on Lamotrigine. I have not managed to see my GP at all last year. In fact I've only met her once the previous year. Our GP's just don't see patients anymore unfortunately. I did tell her about it in Jan 23 but had no response other than we will have to get you in to look at things but that's never happened even though I've sent several messages. that's why I asked Rheumatology to help. I'm guessing they wont prescribe anything until the Capiliaroscopy. thanks for the help with foot ware but I cant wear slippers I have to wear trainers with innersoles in the house all the time. Its a nightmare. Take care x

[OldTed60 in reply to Otto11]

I completely get where you’re coming from with white bloodless feet/ toes and pain in legs overnight - although I don’t have the foot surgery or amputation to cope with. I have been diagnosed with all the same conditions apart from epilepsy - plus now systemic sclerosis and Sjögren’s as my main autoimmunes. I watched a SRUK webinar a few years ago about primary and secondary Raynaud’s and there was something about severe Raynaud’s in hands being more scleroderma and feet being more peripheral vascular or diabetes neuropathy I think. The capilleroscopy is done in fingernails not toenails so i guess this makes sense.

However mine is presently worse in feet than hands despite my scleroderma and the bone pain in legs is intense. So I’ve concluded that it’s likely the small fibre neuropathy from Sjögren’s and also my hypermobile spectrum disorder that causes this problem.

The way I tend to cope with pain is with electric blanket at night on at lowest temperature and a weighted blanket. In days I have to wear trainers with padded insoles for large Morton’s neuromas - refused surgery due to neuro vascular issues. Have had two steroid injections into one foot recently seems to have taken edge off a bit. I have calcinosis in feet which I’m guessing is circulation related.

When I’m out for longer I use peel on paper thin foot warming pads which I stick onto outer layer of socks. I do have various different shoe sizes to accommodate as can’t use Uggs or sandals due to needing the insoles and supportive heels with wide toes for very narrow feet. The heat pads last up to a day - 8-12 hours - but I hate single use so try to only use if I’m out for a long time and can’t warm up with a foot soak. Hope these suggestions might help a little - especially the electric blanket and the heated throw. Keeping core at a consistent warmth seems essential to cope I’ve found and I also have a stroller/ rolator with a seat for shops, museums and at home to avoid falls or having to stand for long periods.

[Otto11 in reply to OldTed60]

Hi & thanks for your advice.I read your message then forgot to reply & it got buried. I’m sorry you’re struggling too. We seem to have an awful lot to contend with. I have small electric heat pads/ blankets one for bed & one for my feet when in the lounge. It does help with the pain to get them warmed up. My body feels warm though just ice cold feet 🤷🏻‍♀️ This all just started out of nowhere in October so all new to me & it has affected me really badly. Getting out & about is hard due to pain in both feet from surgery & not being able to take painkillers due to Epilepsy meds. I just can’t find any shoes which are comfy mostly due to the size of my inner soles. I will look into your suggestions though. Take care.