Raynaud's without colour changes

[mike444]

Hello, my hands are very sensitive to cold weather and temperatures. This has been going on for years and I do take Nifedipine, except during summer, to ease the symptoms.

However, I have never had my fingers or toes change colour ever. They just feel cold.

Is this really Raynaud's? I've told my NHS GP about this and I've had a set of blood tests which reveal no problems.

Is it common for people with Raynaud's to never have fingers or toes change colour or could this be something else my GP missed?

[mike444]

To add to my previous note, my whole hands get cold at about the same level, it's not just my fingers. My fingers seem to get the same temperature as the rest of my hand during an attack.

[OldTed60 in reply to mike444]

I have systemic sclerosis, Sjögren’s with some form of EDS - so this may be different. But after my Raynaud’s started with a couple of spectacular white fingers in my late 40s - it then became just feeling the cold as you describe - almost as much in my feet as hands. Because I had already been diagnosed with rheumatoid arthritis and hypothyroid my GP seemed convinced it was Raynaud’s I was describing and I was put on Nifedipine in winter months. Finally I couldn’t tolerate it though.

I relocated and I didn’t mention much because I was sure I didn’t have proper Raynaud’s because I rarely had colour changes - but I did have chilblains. Anyway it dropped off the radar and was replaced by small nerve fibre neuropathy. By then my whole hands and whole feet plus other parts were feeling awful with cold but also burning red with heat. still I rarely had much Raynaud’s colour change. 12 years on, I now get Iloprost infusions once a month. But it’s only the last few years where my Raynaud’s has been showing very visibly.

[Midgebite21]

Hi Mike444, not all Raynauds sufferers have the full colour changes. Perhaps you just have very cold extremities. I’m a podiatrist by profession (as well as having scleroderma and secondary raynauds) and I have many patients that have very cold feet (and hands) with no underlying medical conditions. Be put at ease that your blood results came back negative and therefore it’s likely that your Raynauds is primary in origin and therefore not associated with autoimmune diseases like scleroderma or lupus.

[FelixFelicis]

Hello, best to wait for doctor’s conclusion. I have Raynolds and that was the trigger to fully diagnosed Systemic Sclerosis 5 years ago after struggling to get a proper diagnose for one year.

I’m on Nifedipine but I don’t feel much improvement, sadly.

Much health!

[Poshcards]

my toes and fingers and nose change form normal to purple, dark blue, white an more x

[Beaches23 in reply to Poshcards]

My face, nose,fingers and toes go purple with the cold. My tongue and the inside of my mouth turn blue. Can't eat ice cream or cold drinks. No fun having Raynauds!