Arthritis and Raynauds

nad1611

Hi Everyone, I'm new on here. I just wanted some opinions and I realize that you aren't qualified practitioners, rather simply having experiences which may qualify you to have an opinion.

I have been unwell for about 15 years now, first the diagnosis was vague, thinking it was Reactive Arthritis but eventually Fibromyalgia and RA. I am treated with Methotrexate and several other meds.
Over the past 6 months I have been having very distressing and painful tingling/burning/stinging/freezing cold sensation in my feet initially but this has increased to my legs. I can't get warm during these episodes, no matter what I put on and my husband joking refers to me as bag lady because of all the layers I have on. It's worse late afternoon and evening/night and makes sleeping difficult. I've been to my GP and he's diagnosed Raynaud's Phenomenon. I have been on Nifedipine and this has just been increased. When I think about it I've probably had problems for years just not as severe as now. Although the skin doesn't go white or blue it does get very red just like I've sunburnt my legs.
My questions are can you get Raynauds in the face. Although I occasionally get hot flushes if I'm having a hot flush in my face it always includes my neck.
Recently, last week or so I've noticed, my face getting very red over the cheeks and bridge of nose and it tingles a bit like my legs,like when you've been in the cold and come into the warm, my lips tingle too. It doesn't effect my neck or chin or forehead.
Is there anything else it could be, does it strike a chord with anyone else who has Raynauds and is there any advice anyone has as I'm suffering very badly at the moment, especially with the changing of the temperatures as there's been over the last month or so.

barbara12

Hi nad1611
And welcome to the forum, sorry I cant offer much help, but I do know that you an get a face rash other types of immune disorders.
I do hope that someone will be along soon with some answers, I know there are quite a few with raynards.
Wishing you well with everything, you stay with us then we can offer some support x

suzygirl

Hi, I have raynauds and it can be very distressing. The flush on the face you are descrribinbg sounds like a malar rash that is found in lupus patients. I have lupus and get this rash.

You can get raynauds on the face, and also have sensitivity to cold on face, steroids makes the skin thinner and can make your face red.

I would take some photos of what the reashes and flushes etc look like and discuss with your gp and rheumy.

I hope the nifedipine works for you, I got horrid migraines with it.

skezier

hi Nad,

I have both raynaurds and acrocynosis and yep sounds familiar to me as well. The hands and arms often are cold and tingling but cus of the acro they go purple instead of white.

Mine is treated with tablets each day and an illoprost infusion every 4 months so talk to your rumo as there is help out there.

Warm environments and warm clothing can help... for the face its a bit more difficult but I often wrap a scarf round mine and pull a hat down if its cold.

Talk to the rumo though and see if you can get some help as it is out there. nice to meet you. Cris x

nad1611

Thanks all for your welcome and comments. I had sort of wondered about the Lupus connection but presumed that was more of a rash than reddening, sort of something raised not just the reddness, but I don't know perhaps someone else can help, with that.

I have access to an advice line which is pretty good but unfortunately they're understaffed and can't run it, so I think I will contact my Rheumy Secretary and get my appt brought forward.
It's good to know there are people who are the sufferers rather than the professionals to talk to. It's all the little things which you don't even bother telling the Rheumy after a while because you just put up with it. Anyway this is a great start, so thank you.

skezier

Hi Nad,

there is treatment available and sounds like you need some. Good to trying to bring your appointment forward and the rumo is the guy who deals with my circulation as well. hang in there and the tablets help but the iloprost is the magic 'cure'. Cris x

nad1611

Thanks. The face is strange because although it's tingly and goes really red it's doesn't really feel the same sort of freezing cold as my legs, so this is why I wondered if it was related or not to the other extremeties.

As you say seeing the Rheumatologist seems the sensible plan and I really get on well with her and she's a great listener and gets things done. Also knowing that there are other drugs out there too makes a difference.

skezier

Hi Nad,

My face does it as well if I have been out in the cold or get really cold.... It might be best to run it past your gp though while you wait for the rumo? Cris x

suzygirl

The malar rash in lupus is just a flush or blush in some people. Thats why we get told how well we look all the time Mine looks like I have been sunburnt, it varies in intensity and duration. It comes on in reaction to sunlight, lights and when flaring.

However I also react to the cold, and my face has thread veins on my cheeks now, due to cold, then hot, going in and out of house, shops etc and the good old school run!!!

Best person is your rheumy to advise you, I would take photos though.