What kind of specialist is best to find out if you have Raynauds?

[Froidxxx]

I am still not sure if I have Raynaud's or not.

It started last April with freezing cold hands. They are ALWAYS cold, they never get warm. And some of the fingers are a bluish red.

I had an appointment with a rheumatologist, where nothing came out of it. She arranged for all kind of blood tests which were normal. Then I had an appointment with a vascular surgeon who arranged for an ultrasound. Everythign is normal.

In his letter he says:" I think it is just a variation in the blood flow through the skin without any underlying vascular cause. This will just be treated by keeping your hands warm. It may be that Nifedipine tablets will help."

But my hands are still freezing cold and red all the time (even in summer with the heatwave). Nothing hurts but it is uncomfortable and ugly. I wear fingerless gloves all the time, even at night.

I have private health insurance through work and could see another specialist. But wondering what kind of specialist would be best now? I live in Kent, easy to go to London. I would appreciate some recommendations.

Thank you!

[Broseley]

My hubby saw a rheumatologist for Raynauds and other problems. He was referred to dermatology for a finger tip capillaroscopy which is how they decide if the Raynauds is primary or secondary. Secondary Raynauds is indicative of other diseases such as SLD. They can then look at treating the whole disease. Primary Raynauds is just Reynauds on its own and is treated with nifepidine, which also didn't work for hubby. He has been taken off all meds for it now, pending another rheumy appointment in February but his is definitely Secondary.

[Midgebite21]

Unfortunately even if a specialist did tell you you had Raynauds the advice would still be the same as that you seem to have been given. Keeping hands warm, keeping core temperature up and avoiding situations that trigger attacks plus the use of vasodilators such as nifedipine to ease the severity and length of attacks. The medication doesn’t stop it unfortunately. There is no cure. You still need to mitigate the risk of an attack by avoidance ie wearing fingerless gloves indoors, hats and scarves if necessary. I have had Raynauds since a teen and am now 50, my hands are always blue/white and freezing. Unfortunately I’ve just had to learnt to live with it. I also have scleroderma which has also affected my hand function.

If you’ve seen a rheumatologist and vascular consultant and they’ve done tests and investigations which have proved normal it may mean you have primary raynauds, which is a good thing. Secondary raynauds is associated with autoimmune diseases. Have you asked your GP to discuss the test finding with you, they maybe able to shine some light on things.

[Dizzy64]

Hi Froid,My Raynauds started in summer 2011 where the tip of my middle finger right hand just went white and I thought nothing of it, but gradually over the next 3yrs it got worse until one night I couldn't sleep with the tingling in both my hands, it was September.

During the 3yrs until I mentioned it to my GP I had taken pictures on my phone of both hands and how they would go from white to red to bluish/purple colour and he diagnosed Raynauds and my hands were always cold I was prescribed Nifedipine 5mg 3x dailyand told by the GP that if it didn't make any difference to ring surgery and leave a message for him to call me back which did and have been on 10mg 3xdaily since and find that they do work really well. I do wear ski gloves in the winter, depending on how cold it is I'll wear a thermal wool pair under the ski gloves and always wear thermal vests aswell. Ifind that although the tablets work really well I have stiffness in my hands and they go numb if I hold anything for too long. It is a form of arthritis and have had physio on my hands because of poor grip and stiffness.

I can only advise you, I would give the Nifedipine a try and there is a slow release medication (I can't remember the name) that works well to, I noticed such a difference in the summer, when my hands were never warm and they are now.

In winter they are no where near as bad as they were (just the stiffness) the main thing is to keep yourself warm with thermal vests, thermal/ski gloves in winter and keep your core temperature warm.

I hope this helps and wish you all the best.

Kind regards,

Liz

[andy7551]

A lot of GP's and specialists seem to say 'keep your hands warm' but it's really poor advice because it doesn't increase blood flow to the arms or hands. You may already know, but warming the body's core to a point that is 'too warm' should open up the blood vessels so that more blood flows to the extremities/skin surface, which in turn cools the blood down (a bit like a car radiator). Although you say you are still cold in hot summer.

Is there any amount of clothing or heating that will get warm blood flowing to your hands?

I think have relatively mild secondary Raynauds, but I am typically wearing 6 layers of warm upper clothing at this time of year, for an office job with the heating set at about 21 degrees. Outdoors I will have about 8 layers on with thermal base layers, warm hat and gloves etc.

When I warm up too much, my hands and feet become warm and red (and pretty uncomfortable, as the circulation is abnormal, my hands swell)

Perhaps trying another Rheumatologist would be helpful, at least for an initial consultation? Mine eventually sent me for nail capillaroscopy & thermography, but I don't think he took my concerns seriously until I took in a few different pictures of my hands with white patches, purple/bluish fingers, and swollen redness.

[Froidxxx in reply to andy7551]

Thanks for all your replies. Will have another appointment with another consultant soon.

Just wanted to say that I rarey feel cold at all, it is only ever JUST my hands which are freezing, so putting on more layers of clothing doesn't do anything and I wear fingerless gloves constantly anyway.