I recently had my bloods back and rhemy says v mild elevated ANA and nothing else. This has been the same steady state for 6 years of testing ( every 2 years)
Combined with negative nailfold test last august means that the doc says primary raynaulds despite 47 year old male with symptoms first emerging in early 40s
I’m pleased about the primary diagnosis but since the past winter I have developed fairly constant tingling/ fizzing sensations in hands and feet along with numbness at ends of some fingers and especially thumbs and big toes.
This does not seems to be classic raynaulds symptoms - ie all the time vs just when cold which I think is more normal
The Doc said this could be a result of some nerve damage due to Raynaulds ?
I wondered if this is something others had experience of or thoughts on
Many thanks in advance
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SmilesBarnaby
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Good question. I’m getting my head around my version of this too.
My Raynaud’s & numbness were very early onset & debilitation has progressed throughout my life. Am 67 & was diagnosed with lupus as an infant + have hEDS + am diagnosed with the usual typical immune dysfunction/CTD secondaries (sjogrens, small vessel vasculitis etc etc) and several scleroderma-like chronic progressive probs)...AND am seronegative for all my AIDs due to the immunodeficiency disease panhypogammaglobulinaemia (aka antibody deficiency disease) which was also very early onset. My seronegativity hasn’t mattered cause, otherwise, I meet enough official diagnostic criteria. I’m also diagnosed with early onset small fibre neuropathy & non-demyelinating axonal large fibre peripheral neuropathy.
About 2 years ago, my neuropathy & raynauds finally got so severe it segued into the diagnosis of severe ischemia reperfusion injury (my raynauds is simultaneous with secondary erythromelalgia, which I consider raynaud’s rubra phase gone bonkers due to my neuropathy). So, my consultants tend to like this explanation re the dynamic of numbness + colour changes & oedema & burning redness in response to heat & cold:
Small nerve fibres throughout our systems exist alongside & surrounding our blood vessels, which they enable. So there are dynamic connections between these nerve fibres & blood vessels. When fibres die off due to inflammatory process killing them, numbness results. the vascular system registers this progressive neuropathy by shutting down in response to cold (ischemia paleness & oedema) & inflamming in response to warming (in my case this rubra phase of raynauds has been so severely bonkers for so long that I now have chronic reperfusion injury, & rheumatology has me on its sceleroderma patient sildenafil treatment protocol)
🤷🏼♀️Does any of that help? I do struggle to put it into words 😉, Coco
Thanks so much for this comprehensive replyIt’s all very confusing and has been freaking me out somewhat these past months.
Rhemy was adamant at last recent catch up. Definitely primary. No signs of any wider connective tissue disease and let’s have a look by a neurologist re the tingling and numbness.
I saw neurologist this week and they said they would do a nerve conduction test but that on the whole they expect it to be non conclusive as the nerves effected are the smaller ones and they can’t test those in the same way.
The neurologist said he thinks the nerve tingling and numbness is due to the raynaulds causing some small nerve damage.
You and 282523 seem to be suggesting it could be the other way around. Raynaulds-like syndrome from a CTD. I’m open (well I am hopeful it’s something simpler of course !) to that but so far the docs don’t see any other signs of connective tissue disease.
Not too sure how to progress. Perhaps I’ll just need to keep reviewing and keep connected to the rhemy etc
Glad that my take on this is useful while you process your situation. I like your attitude a lot: this is often a ‘1 step @ a time’ process...no point pushing hard for diagnostic certainty unless you’re an emergency case, or becoming so seriously disabled that you’re falling over, unable to sleep, or whatever (seems to me anyway...others cope different...but I tend to feel most at ease with the ‘suck it & see’ + ‘softly, softly catchee monkey’ approaches...which has mostly worked well for me 😉)
The neurologist who ordered my neurophysiology studies (inc nerve conduction study) said same thing as yours & had to eat humble pie when my results came in...the neurophysiology team who ran my tests were v serious & focused & actually told me they wanted to make sure they did right by me. I’d had the same neurophysiology investigations run by my rheumatologist 10 years ago, so those results acted as a useful baseline comparison re these recent investigations’ results.
Hope you’ll keep us posted ❤️🍀❤️🍀
Hi there. I’m pretty similar in history to Barnclown. I was told I had Raynaud’s initially by a GP 9 years ago after developing tingling up my arms and legs and white fingers and toes. I had already been (mis)diagnosed with RA so the Raynaud’s was classed as secondary.
The tingling worsened to full bodied burning over time and I didn’t tolerate the Raynaud’s meds so was then tried on a heap of nerve pain medications - none of which helped at all and none which I tolerated.
Finally they decided I had small fibre neuropathy - only didn’t really test properly for this so it is still viewed and prefaced by neurologists with “presumed”.
Barnclown has summed up the science pretty well here - exactly as it’s explained to me now too.
The only thing I would add is that Sjögren’s is the rheumatic disease most associated with this type of small fibre/ autonomic neuropathy. Apparently Sjögren’s is the second commonest disease cause of small nerve fibre disease/ SFN after Diabetes.
And SFN often presents this way in older patients rather than in childhood although younger people, children and anyone at all can develop Sjögren’s with or without small fibre neuropathy/ SFN or Raynaud’s.
The part that’s very confusing here is the primary/secondary part. I’ve had my nailfold capilliaries tested 3 times in 6 years - including last week - and they are always normal. The conclusion of the vascular doctor performing these is that most of my issues including Raynaud’s are secondary to neuropathic damage done by the autoimmune/ connective tissue disease process rather than by a vascular disease process.
Personally I think this is a pretty sound rationale - meaning Raynaud’s is Raynaud’s-like rather than a true Raynaud’s - and is secondary to neuropathic disease rather than being primarily Raynaud’s. This explains why it doesn’t show in our nailfold capilliaries in the classic way.
The only caveat to this is that both Barnclown and I have responded very well, initially at least, to powerful forms of vasodilation. This has led my neurologist and dermatologist to assume that the Raynaud’s (and rare other extreme, Erythromelagia) must be vascular. But I think actually what happens is that the heft whack of vasodilation just kills off the rogue nerve fibres and therefore the leading source of pain. It doesn’t ease the tingle though which is permanent for me. But we just notice this less over time.
The triggers of cold, heat or stress apply just as much to neuropathy as they do to vascular disease such as Raynaud’s.
So in your shoes I’d be looking at possible causes of small or large fibre neuropathies rather than at primary Raynaud’s.
Both Barnclown and mine are part of a connective tissue disease (CTD) process - most likely Sjögren’s. Although my Sjögren’s is seronegative whereas my specific antibody points to systemic sclerosis - so I have Overlap CTD. But the predominant and progressing disease is now presumed to be Sjögren’s by my doctors due to the autonomic/ orthostatic nature of discolouration and normal nailfolld capilliaries.
Like most autoimmune diseases Sjogren’s is much more common in women than men. But as it happens I know at least 4 men who have recently been diagnosed with Sjögren’s - one a GP. Whereas I only actually know two women whom I’ve actually met in person with Sjögren’s!
I have the exact same symptoms and I was diagnosed with limited systemic sclerosis last month. For the tingling I would recommend taking Mg tablets as it has removed this from my fingers and toes even the pins and needles have gone. I bought the Mg tablets from Amazon and I keep taking them, besides I get good night sleep like magic tablets. Try and see how you feel, it may work for you. Good luck.
congrats me too my hands are numb now my feet i have raynaud's there is prazosin, amlodipine. i use wild lettuce extract for pain works great mt rose herbs, ebay try it and let me know. hand therapy to get some feeling back also ask your doctor make noise. love julie
Hello, there. My first posting here. Feel like I maybe have the same case as you. Excited to find your post.
I got Raynauld's diagnosis now newly, went to the doctor with a list of symptoms, and tingling/ fizzing sensations in hands and feet is the most boresome. It is constant and no, I don't feel any difference with cold, or stress. If anything, it is more boresome at evenings, when I'm not doing anything.
I did begin on medication, Amlodipin, and it seems to help somewhat, less pain in my hands, and this is why the diagnosis became Raynauld's. And my bloodtest for rheumatic disorder came negative (not sure exactly what has been tested). But I really feel it must be something else, and I have some other symptoms that could fit Sjögren’s.
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Diagnosed by anecdote
Unsure of Raynauld's diagnosis , thoughts very much appreciated
Raynauds and weak hands 
General prognosis years after diagnosis.
Is there an end to this?ndition? 
