What is Raynaud's, I know but do you? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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What is Raynaud's, I know but do you?


I've been having some discussions about what Raynauds Phenomenon is and what sufferers think it is and what it's related to? Would you say what you think it is and what it's related to. Wrong opinions can stop suffers gaining a measure of relief and therefore this is not a silly question! And please don't research it before you answer as this would prove nothing.

Thank you


14 Replies

As I understand it, Raynaud's is caused by constriction of blood vessels. This can occur in various parts of the body including nose, ears and toes as well as fingers where it seems to affect people the most. Mine is worse in my feet than my hands. Am attack of Raynaud's can be caused by expose to cold and also by stress. In some people it starts with the skin turning red, then purple and then white. I tend to just go white, my fingers and toes then look like wax and as they gradually return to normal it is painful.

kel55 in reply to ilovedancing


When the basal temperature of the human body drops even slightly, the nervous system sends a message to the brain to redirect blood to the main organs (blood transports heat) to protect them. This is done by a narrowing of blood vessels in the limbs and extremeties. This facilitates survival by maintaining the temperature and function of the organs by sacrificing the limbs - an extreme example of this is frost bite and gangrene in polar explorers causing a loss of digits.

This is a normal human bodily response to cold (others include shivering: involuntary muscle spasms to generate energy/heat, and the urge to jump around when cold for the same reason!)

Raynauds is when this blood redirection is much more sensitive than normal and is triggered easily and remains for longer periods of time.

Primary raynauds (existing on its own and not as a result of another condition) is not permanently harmful to the body but is very unpleasant and alarming.

Secondary raynauds as a result of scleroderma is different in one key characteristic - due to the connective tissue involvement of scleroderma, the restriction of the capillaries in the hands and feet with each raynauds attack result in damage to the capillaries - gradually permanently and irreversibly damaging the blood supply to the area, leading to poor recovery to infection eg ulcers and potential future loss of digits.

kel55 in reply to The_Bear

Not really bear, sorry

The_Bear in reply to kel55

Haha what?!

Raynaud's is a vascular condition and nothing to do with sclordermia. No one yet knows The mechanism's involved although it's beleaved to be a lack of nitrate in the blood which cause's calcium to be greater and therefore an organs micro vascular system closes, nitrates dilate vessels, calcium constricts vessels. If you look at your medication and research it you will find its a dilator eg viagra, Calcium Channel blockers are self explanatory eg Diltiazem and things containing potassium help nitrates eg nicorandil. Modern over the counter cold cures are vascular constrictors so by taking them your increasing your chances of making your vascular system worse. salt is a constrictor, so again the more salt you use the more your helping your Raynauds.

So what about migraines, yes there exactly the same but in your front lobe area. You can get vascular constriction in any part/organ of your body. And yes then there's the triggers: sudden changes in temperature, sudden changes in emotion and sudden changes in movement. Not everybody as all the triggers and some react more than others.

This information is out there but some times hidden off the main pages. Did you know and do you take the likes of night nurse? Now you know to be careful, ask your pharmacist if it a vaso constrictor?


I know a good vasodilator. It's called alcohol.

I cannot argue against that shaz but doesn't alcohol thin the blood rather than relax the micro vessels. One of the problems with these relaxers is that while your on or taking them they are relaxers but they have a rebound effect and you then constrict. Canabis is a relaxer, nodoughts, yes works great.......while your taking it but it becomes a strong constrictor when you stop, that why people keep taking it because if you stop the constrictions start. I was advised never to do cocaine or designer drugs as they are strong constrictors.

Very accasionly I have a binge, better than all the meds but those rebound headaches are a bugger😱


I have had Raynauds over 40 years and my hands, feet and nose are affected. Different doctors have told me different things, one even telling me that there was nothing wrong with me. It is a vascular and not a circulatory condition and I also have limited systemic sclerosis. The only thing I know is that none of the vaso dilators I have tried have worked.

Hi paleindian2, I've got it every where, yes even there!😰 They call my condition by many names including vascular spasms, microvascular disease or small vessel disease. My best set of drugs so far are the ones I'm on now: renolazine, Diltiazem and Isosorbide Mononitrate.

I get it mainly in my hands and heart so I've been searching for answers for the last 4 years, that's why I'm up on these things.


In your heart? How would they / dr diagnose micro vessel issues in your heart? I also get cyanosis in my face / lips. Do you get angina from this? Another question is, how do you know if your micro vascular issues in your heart is associated with Raynaud's, not with something else? Gut instinct?

I think patients aren't told the whole truths whilst Google Drs find us the unspoken truths. :-). Thank you for sharing.

It's when the blood vessels to your extremities completly over react to the cold / change in temperature and constrict causing the pain and colour changes as there is now a lack of blood flow. It can also happen as a result of emotional stress and extreme fear. The exact reason this happens (in primary raynauds) is so far unknown?

Primary tend to not be so bad as secondary (someone please tell my raynauds that!) and does not usually cause perminate damage.

Hi coniston, I've recently had a Cardiovascular stress perfusion MR Scan at the Royal Brompton and Harefield Hospital, nothing like the normal doughnut type? They slide you in to what I can only explain as a smarty tube, they then film as they put you under stress. They've said yes I spasm and the condition of coronary Microvascular disease is confirmed because I have some Subendocardial hypoperfusion damage which I think means (not a lot of info on this?) some ischemic damage of the inner lining of my heart.

I'm just out of hospital after having vascular spasms in or around my spleen, basically I'm told there's nothing they can do except give me more pain killers.


Hi everyone, my first post here - reading the original post and your replies to Kel has been very interesting (I think my excrusiating hand pains are Raynaud's) and informative.

Your mentioning of Small vessel disease rang a bell (I have late stage lyme disease and bartonella henselae) - could this be a ''missing link'' (I am not a doctor of any medical field, but these chaps on link are, and good ones at that imo):

Understanding Bartonella July 10, 2015:

( youtube.com/watch?v=uYEHsRR... ) Leading Bartonella researchers and clinicians, Dr Ed Breitschwerdt DVM and Dr. Bob Mozayeni MD present the latest scientific findings and clinical observations in support of a more accurate and timely diagnosis of #‎Bartonella infection, plus treatment considerations.

In short Bartonella = expression of small vessel disease.

Kind regards

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