For a few years now I’ve been told that Raynaud’s is responsible for at least some of my issues with cold. My rheumatologist gave me Viagra to try as a vasodilator in the hope that it might help. It didn’t help the SFN pain and gave me awful nose bleeds and headaches.

Finally, earlier this year, I was given a nailfold capilliary test which excluded secondary Raynaud’s. I don’t get the white or blue colour changes normally associated unless I get in a hot bath when my toes go bright white. However I do get some white and redening so the vascular doctor explained that this is mild Raynaud’s secondary to quite an advanced SFN. I also get Livedo Riticularis although I tested negative for APS. There was a description from the vascular doctor of a bridge between the damaged tiny nerve fibres and the tiny blood vessels - so they are very closely connected - but I didn’t take this in properly. Can anyone here offer an explanation for me in layman’s terms?

What I’m also wondering is whether this means they the awful cold which seems to take hold of me is neuropathic? I find that only a really hot bath can reboot- is this part of the SFN or is it autonomic dysfunction? I used to need cool baths to cool down the burning pain - now it’s the other way round?!

I no longer suffer from the excruciating burning pain - just this icy cold numbness all the way up my legs and arms and in my face. I get vasovagal spasms when I breathe in cold air. I think the reason that only a hot bath helps is due to the fact that my core becomes so chilled.

But I would like to know is whether the cold weather is triggering the SFN to worsen, which in turn has led to worsening numbness proprioception issues - or is the SFN causing this extreme oversensitivity to the cold? I do get this cold sensation even in summer months but I’m in Scotland so it’s not that hot very often!

I also seem to have vibrating in the sole of my right foot - which at first I attributed to our under floor heating, until I realised that it wasn’t affecting my other foot?!

--especially of the small fibers, have a vascular component to them; diabetic neuropathy is usually thought of as mainly ischemic in nature, in that the nerves that control the smaller blood vessels are affected, but this can work the other way around, as well, in that damage to small blood vessels may make nerves that depend on them for oxygen, nourishment, and waste removal may be compromised and thus cause damage to the function of the nerves. This also happens in many autoimmune neuropathies, particularly those associated with the anti-nuclear antibody conditions in the lupus/rheumatoid arthritis family of diseases.

It may be hard to pull apart the effects of blood vessel problems from the effect on nerves vs. the effect of nerve problems on blood vessels--they are often conflating and mutually reinforcing, like a feedback loop. Obviously, one wants to arrest the processes going on so both get a chance to heal, if that's possible.

Thanks for this helpful explanation. As an artist I do like to be able to visualise these things which is why I asked here rather than on the Sjögren’s forum. The vascular doctor explained that, in my case it’s the small nerves that are damaged and are precipitating a vascular response, rather than the other way around.

I do have a high ANA and high inflammation markers so my neuropathy is presumed to be Autoimmune, relating to my seronegative (ie lip biopsy positive) Sjögren’s. For this I’m on the maximum dose of Mycophenolate/ Cellcept but it doesn’t appear to be doing much for the neuro symptoms. I’m told this is probably due to small vessel and nerve damage having already occurred so it’s being used as a deterrent for arthralgia and potential organ involvement and vasculitis.

I also have presumed ganglionopathy/ autonomic dysfunction but where I live there are no tests they can run to confirm so it’s all just presumed as part of the neuro Sjögren’s.

I also get the raynauds stuff from this sfn. It is part of the temperature dysregulation that comes with autonomic nerve damaged. The nerves don't allow the body to cool it self or stay warm. I can't deal with temps out of the 68-78 F range. With the fall here in New York, I have to wear two sweatshirts and a carry around a hot rice pack with me in the house.

Thanks Healthgirl. Do you get colour changes such as Livedo Riticularis on your feet when exposed to air? Mine has become very pronounced - my very fair feet almost turn blue black in places now when I’m changing for the shower or bath. I’m feeling more confident that all this represents a slow worsening of my SFN from painful to numb. And I agree about the autonomic nervous system being kaput!

The nerve damage from my Profound Peripheral Neuropathy causes difficulty with the small capillaries in my feet.

My toes are dark purple most of the time. If I expose them to hot water they blanche white.

Since the circulation is markedly impaired my feet are usually icy cold.

Of course I can't actually 'feel' them very much. The sensation I 'perceive' is more like burning. But when I touch my feet that are frighteningly cold.

In addition, my feet feel rather like I have ski boots on. So when I try to get under the covers, I get tangled up with my feet and have a hard time sorting things out. I do it best by looking at my feet so I can untangle the covers.

Wearing socks to bed helps a great deal with the discomfort.

I have severe SFN in my upper body (take 3600 mg gabapentin for the pain) but I don't have any problems with anything like Raynaud's in my hands.

It is the Profound PN that cause this problem in my feet.

I must take great care with my feet because injuries heal very very slowly. Usually it take three or four months for the smallest scrape to heal completely.

Regards, ElaineD

Thanks Elaine.