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Scleroderma & Raynaud's UK (SRUK)

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Raynaud’s?

Amber1102 profile image
15 Replies

Hello, a few years ago, my GP diagnosed me with Raynaud's. However, my symptoms have recently worsened to the point where I experience pain, daily discoloration in my feet, and persistent coldness. My hands also remain unusually cold, even when I'm in a warm environment. I recently consulted my GP again, who referred me to a vascular specialist due to the discoloration and sluggish capillary refill time.However, the vascular department declined the referral and requested that my GP reassess me.

I was wondering if anyone else has experienced a similar situation. I will attach a photo of my feet to show what they typically look like throughout the day, even in a warm house. Could this possibly be something other than Raynaud's?

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Amber1102 profile image
Amber1102
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15 Replies
SovietSong profile image
SovietSong

Hi Amber, I started getting raynaud's about a couple of years back. It was due to my thyroid meds not being optimal.My fingers were red, painful and the cuticles would bleed.I was given a short course of Nifedipine which helped clear it up. Since getting my thyroid meds sorted it's much better but sudden changes in temperature still cause my fingers to go bright red.The bottom of my feet would be similar colour to yours also although my circulation has never been great.

Amber1102 profile image
Amber1102 in reply toSovietSong

Thank you for getting back to me, I am getting blood works done to rule out thyroid issues. The past year few weeks I have looked into undercover thyroid and wondered if I may have it which could contribute to my constant coldness.

Tiggywoos profile image
Tiggywoos

hey lovely I’ve also got those feet ! No one ever interested but have been diagnosed with Raynauds on hands through a cold stress test . If I’m honest I don’t think they know what feet discolouration is or if they do they aren’t bothered . Hope you get some more useful replies xx

Bottom of foot
Amber1102 profile image
Amber1102 in reply toTiggywoos

Thank you for commenting back, I know it’s so exhausting not knowing the cause. Luckily I am having blood works done to rule out diabetes and thyroid issues. I used to be on propranolol but I stopped taking it and I was fine for a few years then all of a sudden the past year it’s uncontrollable. I mean I’ve been in a heated house since 4pm, it’s now 9pm and my feet are still the same colour as my picture, I’m fully clothed in a warm bed and some reason my circulation just doesn’t want to come back, it’s genuinely making me so stressed and somewhat depressed because no matter what I do I just can’t seem to warm up. X

Mezgit profile image
Mezgit

This looks a little better than what I get with Raynaud's (mine is secondary to Crest). At some point I was worried about how purple my left foot looked and my gp ordered a dappled test to assess blood flow which turned out to be normal and my rheumatologist concluded that it sas Raynaud's. Are you able to ask if you can be referred to rheumatology?

Mezgit profile image
Mezgit in reply toMezgit

Doppler test

Mezgit profile image
Mezgit in reply toMezgit

Just correcting the spelling mistake.It doppler test

Amber1102 profile image
Amber1102 in reply toMezgit

I think I’m gonna ask when I next have an appointment. This is how mine can fully look, does yours go completely purple like this or worse?

Feet
Mezgit profile image
Mezgit in reply toAmber1102

Hi yes it does.Hope you can find an answer.

Midgebite21 profile image
Midgebite21

Refer yourself to NHS Podiatry and ask for an ankle brachial pressure index test along with an in-depth vascular assessment. The podiatrist will be able assess your Vascular/Arterial status and give ongoing advice. (I’m a podiatrist) Going forward from now though keep feet warm with merino wool socks and suitable footwear. During winter my slippers and boots are shearling lined (I live in Scotland). Do you get chilblains?

Amber1102 profile image
Amber1102 in reply toMidgebite21

Thank you for the reply I will definitely look into this. Yes I do get chilbains but not really bad. I do wear thermal socks and fluffy Uggs however even with that I still struggle with cold purple toes. The only way I can warm my feet up is in a bath which I make hotter overtime. The other night I wore three pairs of fluffy socks and had my feet on the radiator for 50 minutes before they started to feel and look normal. My main concern is the length of time it takes for me feet to come back to normal colour even in warm conditions.

Midgebite21 profile image
Midgebite21 in reply toAmber1102

Please be careful with HEAT. Forcing the circulation with external heat from hot water and radiators etc can actually be counter productive as it can lead to damage of the capillaries and ultimately ulceration. Know it’s frustrating but it’s always best to allow Raynauds attacks to return to normal by themselves. My hands usually live in my armpits 😆.

Do you take a vasodilator medicine like Nifedipine or Sildenafil?

DutchDreams16 profile image
DutchDreams16

I would say a rheumatologist is your better option as opposed to a vascular specialist. You should be prescribed a vaso dilator like nifedipine to ease symptoms as yours are fairly mild currently. Or a better GP with experience of reynauds.

cls_98 profile image
cls_98

I think your GP should definitely try you on some nifedipine (if it doesn't interfere with any other medication you're on) and refer you to rheumatologist. I'm on 30mg BD of Coracten (nifedipine) and have fewer Raynaud's attacks now.

I really hope you get some help very soon. Cx

ShonaGreen profile image
ShonaGreen

Hi, when I first started to get bad chilblains I was referred to vascular dept but they advised it should be rheumatology. At that time I had lots of tests and thought it was just bad Raynauds, soon after that blood tests picked up thyroid issues. Few years later and now I'm having worse problems with my feet which are permanently purple and a few toes that have turned brown/black (and still the same 4 weeks later). I have another referral to Rheumatology at end Mar. New blood tests were positive for ANA with homogenous & cytoplasmic pattern, but negative ENA and ds-DNA, awaiting results for other tests.

Hope your feet improve soon, take care!

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