Is Raynaud's known to be a fast onset... - Scleroderma & Ray...

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Is Raynaud's known to be a fast onset condition?

Laus2002 profile image

I first started getting symptoms on Christmas Eve, my finger tips went numb for a few minutes and then they were fine. After that I started getting regular attacks until it was happening almost every day and I was then diagnosed with Raynauds. My doctor put me on Nifepidine which seems to be helping with the frequency of the attacks but they still happen. My question is this, is Raynauds known to be a condition that develops very quickly? I now have really dry hands, cracks in between my fingers that itch and my once beautiful nails are now flaking and splitting. My feet are also now showing signs of attacks. I am not sure if I have primary or secondary RAynauds, I have Fibromyalgia and I believe the two often go hand in hand but I don't know if this would then be classed as secondary Raynauds? My question is this, this condition seems to have come on incredibly quickly, is this often the case?

23 Replies

I'm glad you asked this question Laus2002 as this year I have started to suffer regularly from Raynauds, even now when the weather is a bit warmer. In the past my fingers had gone "dead" perhaps 2 or 3 times in my life and only in extreme cold. Suddenly this year it happens in even slightly cool temperatures. I feel a bit silly wearing gloves to walk the dogs in May!

I hope some more knowledgeable folks will be able to tell us

Blue-Bunny profile image
Blue-Bunny in reply to EmJB

Damn straight...

According to the doctor Raynaud's isn't even supposed to be terminal...i.e something that gets progressively worse (I don't think anyone's died from Raynauds though). It might spread from finger to finger but the number of incidents isn't supposed to increase by any dramatic amount.

With that said there is increasing anecdotal evidence on this site that points to the contrary. That it can quickly deteriorate for a number of people preventing the usage of their hands.


I felt a bit silly wearing gloves to walk Nook (my dog) in March, but of course, it was snowing and I had no central heating >.>;

Many people who have Raynauds however are not signed up to this community and the majority do not get anything more severe than the tips of their fingers turning white or a slight tingling. It is interesting how some people seem to get what I'm starting to call a cascading failure of circulation in their extremities.

EmJB profile image
EmJB in reply to Blue-Bunny

Hi Ravenshade,

Hope the heating is working well now and Nook is ok

Blue-Bunny profile image
Blue-Bunny in reply to EmJB

Yep. Heating hasn't been below 23 degrees so far. It's costing me a small fortune (about the same as I was paying on electric for 16 degrees). Much fewer attacks too!

Nook is...wet through (I keep chucking buckets of water over him, not an impressed puppy).

EmJB profile image
EmJB in reply to Blue-Bunny

Fewer attacks is good. Any particular reason why you keep chucking buckets of water over Nook?

Blue-Bunny profile image
Blue-Bunny in reply to EmJB

Nook is a Malamute with some rather dense fur. He also doesn't like sitting in the shade. Nah, much like today with clear blue skies and hot weather he's much happier sitting in the full sunlight -_-; I have to pester him to drink water. You would have thought he would be more keen on sitting in the shade given the type of dog he is, but no. He doesn't like snow either.

EmJB profile image
EmJB in reply to Blue-Bunny

Sounds like a sensible dog to me!

i have a halogen heater in my lounge because ive heard they're more efficient than gas. Cheaper and warm up quicker.

I won't claim to be 'more knowledgeable' I only know that I started getting numbness, white fingers, etc., when I was about 13 my GP diagnosed it as Raynaud's and I've had it non-stop since then (it's now secondary as I was diagnosed with a connective tissues disease in 1998 - current diagnosis Scleroderma). I have nifedipine for the Raynauds these days - 43 years ago the GP just told me what it was and I just had to live with it. Strangely I am not sure whether that was a bad thing in some ways, though it may be that even then my internal organs were being affected, I don't know, but I was forced to keep doing things, if you see what I mean - not that it was always easy: I even worked as a temporary postie for 2 years back in the '80s doing Christmas mail. It was agony until I was about half way through my round and then the blood would come coursing back through my fingers an they would finally warm up!! I don't think I'm up to that now and, besides, my understanding is that if you are one of the few with secondary Raynauds then it's not a good idea as you need to keep attacks at bay (and your body warm) so that you're not risking further internal damage.

I don't know whether Raynauds is secndary to fibro Laus22, I would guess so but don't know.

EmJB - gloves in May ... tell me about it! I'm not sure whether anyone ever gets to LIKE having to wear gloves during summmer but with Nifedipine I can get away with thinner gloves, though even last week my thick ones went back on in the freezer aisle of the supermarket. Do try the silver gloves though (available on RSA web site) I only got some last year and I wouldn't be without them now, they help me a lot.

Good luck both.

It seems that some had it suddenly, some don't. With some it was diagnosed, perhaps after years. Do take care.

I started getting Raynauds attacks in 2004. Within six months I was diagnosed with scleroderma (diffuse systemic sclerosis in my case). Prevention is essential for avoiding raynauds attacks, I can have one just opening the fridge.... or moving from one room to another with a temperature difference of only a few degrees. Always think ahead with everything you do, it's a pain to have to do it, but much, much more painful having to recover an attack, I could have them dozens of times a day even in warm weather, just by touching something cold, or putting pressure on my hands (carrier bags are really bad news). I have found that by the 'first attack of the day' can trigger a whole sequence of them, so stay warm for as long as you can. Without a doubt, with secondary raynauds, the vulnerable finger tips take a real bashing from repeated attacks, I have had semi-healing ulcers since January. Silver gloves are a life saver- get several pairs!! Also, stress is a trigger, without a doubt. My hands will go blue in a stressful situation, so learn to deep breathe too, it will help!!

EmJB profile image
EmJB in reply to lindyanne

That's useful as I was wondering if pressure was also causing it as just using the computer can trigger an attack, or maybe that is stress - deep breaths and carry on.

Thank you so much for your answers everyone, I don't know anyone else with this condition so it's very interesting to read everyone's stories and hints and tips, thanks again and I hope you have all been enjoying today's rare warm weather!

No, it wouldnt be secondary to fibro, as this is not antibody positive for connective tissue disease. It tends to be secondary to conditions like scleroderma and lupus which have a positive ANA profile.

fruitpastle profile image
fruitpastle in reply to

Hi there inkedup wot does this mean..secondary to conditions like scleroderma and lupus....i have severe raynaurds..and can relate to all lindyanne has said.. r u saying that scleroderma r lupus is the main culprit one wud have..instead of the raynaurds..i get lots of flare ups on my right side hand knee arm and foot..i know iv showed lupus and sclero signs but i thgt it was the raynaurds that was the trigger of everything else i dont really understand :-(

Hi Fruitpastle,

I have been led to believe similar to Inkedup in that Raynauds is secondary to many 'Auto-immune' illnesses. The main condition (Scleroderma, Lupus, Ehlers Danlos, Rheumatoid Arthritis) will have positive markers within your blood count to indicate their presence (many of these are also heriditary).

I have a formal diagnosis of HMS/EDSH which means I have hypermobile joints which I am prone to spraining/tearing as I can 'overuse' them, I also bruise easily & can bleed from the gums as part of this condition. I am currently undergoing tests for secondary Raynauds as the bloodflow/circulation to my hands & feet seems to be restricted further leaving me susceptable to the cold & suffering quite frequently with chilblains (more noticably on my feet but my hands do occasionally flare up too).

From Milibern ,to all members that have given so much and details of their suffering , I as a 89yr young , and I have just joined the ranks of THE RAYNAUDS , I take great heart and confidence I am not alone and can talk about my fears to KIN. Milibern

I had been feeling really fatigued and generally unwell for a long time before I first noticed the Raynauds. I rarely saw my GP or had medical attention of any type.

Probably within a year of noticing the Raynauds I was being diagnosed with other auto-immune conditions. First it was Lupus and then a host of others.

So in my case the Raynauds was secondary. But it doesnt have to be so.

I have had cold hands and feet all my life. I did not know the name of it until I was 11 when I had a particularly bad attack and my hands would not warm up and the pain was dreadful. My Mother was a nurse and she told me it was Raynauds and that my Dad and both my Grandfathers had it. I was the only sibling to inherit it. Until I had my children I used to just think of it as an inconvenience as it would not take that long to get warm. After this I really had to be careful. Walking down the chilled isle would set it off and I had a lot more chilblains. I now where fingerless gloves most of the time I know it sounds silly as it is the tips that get cold but it really helps.

I thought that the locking of my fingers was the onset of rheumatism did not know it was a symptom of Raynauds

This may interest medical people.

There has been only one time when I did not suffer with cold feet and hands and that was when I was going through the change I really could not get used to having feet and hands that were hot and the hot flushes to. I could not take the hormone tables as they would make me feel like a zombie no life in me, headaches, irritable. As I did not have a very helpful doctor she just sent me away and said get over it. I then took the homoeopathic root. I did not have any money so read every thing I could and within a week I was feeling more like a human being but it took 6 months for the hot flushes to go and then I kept taking it for about 2 years. Every so often I would try to take less until I did not need to take them regularly.

My main advise is it does not matter what you look like I now where tights nearly all year round and I always have gloves with me even in the height of summer, as a change in temperature can bring it on quicker than anything.

ArtistAnne profile image
ArtistAnne in reply to driftwood

I have Raynauds mostly in my feet(my hands just feel cold)and I'm going through menapause that seems to make my feetturn purple when I have a hot flash and not cold at all.Then they are red and hot.I've never had as much trouble in summer time.

driftwood profile image
driftwood in reply to ArtistAnne

I thought it was just me having had cold hands and feet all my life it was the most weirdest feeling, the worst was at night my hot feet used to wake me up. When the menopause did stop then the cold hands and feet came back. Hey ho out came the bed socks again.


My Raynauld's started after I had a second bout of Glandular fever.

My Rhematolgist monitored me for several years - he told me that Raynauld's is degenerative and that the rate of deterioration varies from person to person.

My worst times are Spring and Autumn when the temperatures change frequently and by large amounts - so I'm not loving this June :O(

I responded to the question from "littlemissshy" earlier with details of what helps me. Basically -

- all over base layer - long sleeve vest and long johns (I use thermals),

- long sleeves,

- layers - thick layers in winter, thin in summer. Different thicknesses for different temperatures (I have to change the thickness of at least one layer every few degrees e.g. 18 to 20C is knitted cotton jumper and cardigan. 15 to 18C is knitted cotton jumper and acrylic cadigan, 13 -15 thin fleecs jumper and cardi, etc)

- pot of spiced tea in the morning, several pots of ginger tea in the evening

- Rutivite (aka Rutin, Buckwheat tablets - twice a day

- Regular meals and slow release energy snacks (like a banana or flapjacks)

- cover cold surfaces - eg the inside handle on external doors are wrapped

- we also have Galileo thermometers in all rooms so we can easily keep a check on the room temperature

So far I've managed with prescription medication. If I don't do the above I get regular attacjs where my body simply starts to shut down. For me - if the top of my head is cold I need to take immediate steps otherwise I'm at risk of hypothermia - that was a shock when my GP told me that but it's made me (and my husband) very aware.

Hope this helps,


Have you seen a rhematologist recently to rule out the possibility of lupus?

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