Episode 70 Louise Parker: Raynaud’s

In this episode, Debbie and Katy speak with Louise Parker, founder and director of the Raynaud’s Clinic in London and independent nurse consultant with 25 years’ NHS experience. Louise breaks down what Raynaud’s actually is, why it’s far more than “just cold fingers,” how environmental triggers have changed, the overlap with inflammatory arthritis, and why many people are living with unmanaged symptoms simply because they’ve never been asked about them. She also explains testing, treatment options, misconceptions, and when Raynaud’s can signal something more serious.

Key Topics Covered

• What Raynaud’s is
• Why it’s no longer just a winter condition, the rise of air‑conditioning and sudden temperature drops
• Everyday triggers: supermarkets, cars, iced drinks, swimming, exercise, stress, adrenaline
• Practical day‑to‑day management: gloves, hand warmers, layering, heated clothing, keeping the core warm
• The difference between “poor circulation” and Raynaud’s
• Natural therapies and medication options
• Weight loss, chemotherapy, and other factors that worsen symptoms
• The overlap with inflammatory arthritis and connective tissue diseases
• When Raynaud’s is benign vs. when it’s a red flag
• What happens at the Raynaud’s Clinic: thermal imaging, capillaroscopy, personalised management plans
• Why patients often aren’t asked about Raynaud’s and why they should be

Keywords:

Raynaud’s, circulation, colour changes, microvascular, cold sensitivity, reperfusion pain, autoimmune, inflammatory arthritis, connective tissue disease, systemic sclerosis, lupus, vasculitis, capillaroscopy, thermal imaging, stress response, adrenaline, air‑conditioning triggers, weight loss, chemotherapy, management strategies, heated clothing, hand warmers.

Quotes from the Episode

“Raynaud’s is an exaggerated response to the cold, you’re not just cold, you’re really cold.” “Supermarkets are freezing cold… even taking milk out of the fridge can trigger an attack.” “Stress and emotion can also cause Raynaud’s; adrenaline is a potent vasoconstrictor.” “There’s a misconception that nothing can be done. That’s simply not true.” “If Raynaud’s appears out of the blue later in life, that’s a red flag worth investigating.”

Resources & Mentions

• Raynaud’s Clinic London raynaudsclinic.com: consultations, thermal imaging, capillaroscopy, personalised management plans
• Inflammatory Arthritis UK (IAUK): newsletter, events, research opportunities
• Inflammatoryarthritis.org
• IAUK social channels: Facebook, Instagram, LinkedIn, BlueSky
• IAUK YouTube channel to watch full podcast episodes

Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: and Katy

Debbie: We’re delighted to be joined today by Louise Parker, who is the founder and director of Raynaud’s Clinic in London. She’s an independent nurse consultant and she previously worked in the NHS for 25 years. That’s a long time Louise, but how are you? Lovely to have you.

Louise Parker: Very well, thank you very much for inviting me. It’s great to be here.

Debbie: So, we’re going to be talking about Raynaud’s today. Louise, can you just say a little bit about what it actually is?

Louise Parker: Sure. So, Raynaud’s is an episodic or transient circulatory condition that affects our smallest blood vessels and is affects predominantly peripheral areas. So, fingers and hands, but feet and toes, nose, ears, lips can also be affected. And people can often feel very, you know, very, very cold all over actually. And Raynaud’s is characterized by triphasic colour changes. But it’s usually starts with sort of a pallor or whiteness of the fingers or feet or toes. Then they can often go bit darker in colour, so often like a grey or a blue or even if people describe a purple. And then as what we call an attack sort of begins to subside, the blood flows back in through to those vessels. they went the reperfusion phase is when the fingers go sort of red. but that can often be quite uncomfortable for some people really painful.

Katy: Yeah.

Louise Parker: So that is classic Raynaud’s as they people don’t always get full try phasic changes, but colour changes on some level are what characterizes a Raynaud’s attack, coupled with the numbness that goes with it, and the pain and tingling. And I say the reperfusion which can often be quite uncomfortable and painful for people to, to a greater or lesser extent. Some people have these and it’s cripplingly painful and can last, you know, half an hour, 45 minutes even. Some people it’s, few minutes and it’s not too bad, but for some people it can be very debilitating.

Katy: Yeah, and there’s different degrees, isn’t there, of severity. So, I know my sister actually gets it in sort of very cold conditions. I always think it’s kind of a bit like your fingers turn into ghosts because she doesn’t go to the stage where it goes sort of grey, blue or purple. It’s just when it goes very white. And when people are going through one of these attacks and obviously it’s autoimmune, isn’t it? what, do we know the cause and why it happens?

Louise Parker: Well, we don’t actually. it’s quite a common condition, actually. It’s quite prevalent in the general population, around 10 % of people. And it’s usually benign. But again, we’ll probably talk a bit later about some of the secondary conditions it’s related to. But it in response to temperature change or cold. So yeah, that’s why the colour change occurs. And for some people, is a can be being in the supermarket it can be in an air-conditioned environment. For some people it can just be walking from one room to another. So, it can be even really subtle changes that can trigger these what we call attacks.

Debbie: I think most people assume, I assumed it was more in the winter because it gets so cold. But I think Louise, we had a chat beforehand and it can actually be just going down, let’s say like the freezer aisle because obviously in the summer it was so hot. And I suppose that extremities can that cause the attack as well?

Louise Parker: So absolutely, increasingly over the years as I’ve been seeing patients, it really was generally quite a seasonal thing. But over time with air conditioning becoming so prevalent, it is now actually an all-round problem, all year-round problem because, you know, supermarkets are freezing cold, but also so are shopping centres, so are restaurants are, you know, being in the car even, can be cold if somebody wants the air conditioning on. So, it is actually becoming a much more problem, I just say environmental triggers. So, I know plenty of people who wear gloves when they go shopping. I know people that use a tea towel to take milk out of their fridge because even things like that or a drink with ice in it, can cause a problem or an increase in the probability of an attack. it’s everywhere now, really, not just a winter problem, as you say.

Katy: Yeah, yeah, and I guess with temperatures sort of rising, especially in the UK at the moment, more and more people will be using aircon in scenarios. I know a lot of people kind of get an aircon fitted in the house. Obviously, it ends up sort of being turned up maybe if you’re at work. So then it’s that balance, I guess there’s a lot of misconceptions around it as well thinking that it is just a winter problem. So how do people, you mentioned kind of gloves using tea towels, how do people kind of manage this on a day-to-day basis?

Louise Parker: All sorts of ways, mean, people are pretty creative. mean, keeping your core warm is actually quite important as well. Hand warmers, wrist warmers, people just not putting themselves in the situation of being in those environments, actually, which is difficult because actually it can be quite life limiting then in terms of what you’re doing day to day. But people are, as I pretty creative. I know plenty of people who will wear gloves or some thin gloves at least if they’re taking things out of the freezer or fridge jars in the supermarket. And having hand warmers in their coat pocket, for example, just to sort of rewarm quickly while they can if they’re out and about for the day. Layering appropriately as well is really important. And there’s a whole host of things now that you can buy that sort of help with keeping your core warm and much better than they used to be that are things like gloves and wrist warmers and things like that, that are breathable as well as keeping you warm. Yes, there is.

Katy: Yeah. Yeah, because there’s heated gillets and things like that now, isn’t there? Yeah.

Louise Parker: And you’re right about, I think it’s going to be more prevalent going forward because, or more difficult for people, as you mentioned, about the drop in the, we’re getting warmer. And particularly in places where I see clients from the sort of the Middle East and hot countries, you know, they’re coming in from sort of 40 or 45 degree heat down into a hotel or the house or wherever a car that’s at 16. And it’s that sudden drop that your vessels just don’t cope with at all. And it’s, it’s managing that, as you say, which may well become more of a problem in this country as well.

Debbie: thinking of movement and exercise is, how about swimming? Because I find swimming going into when the pool is like really cold. It’s good for us obviously to go, but I assume that can cause it as well.

Louise Parker: Yeah, I’m going the particularly the prevalence of the cold water swimming and open water swimming now. People make their booties and gloves and everything else and it’s making sure you’re getting warm afterwards. So, of course, putting yourself into cold water is going to be a problem for people who suffer and even people who don’t have very Raynaud’s are going to take a little bit longer to rewarm because of that change in temperature. So it’s, you know, any exercise, although it’s exercise is great and it helps keep the blood flowing and the circulation going, is a good thing. For some people, mean, like intense cardiovascular exercise actually pulls blood away from the peripheral areas anyway, it actually makes it worse.

Katy: Yes. Yeah.

Louise Parker: For some people it’s okay, for some people it’s not. So, if you’re doing a lot of running or intensive sort of training, your blood’s going to your heart and lungs and your large muscles not your fingers and toes.

Katy: Yeah.

Louise Parker: It’s again, as you say, Katy, it’s a balance about what works for you, really.

Katy: Yeah. And a lot of people kind of talk about they might have poor circulation, but what’s the difference between poor circulation and this?

Louise Parker: So, Raynaud’s is a really exaggerated response to the cold. I mean, we all feel the cold and have poor circulation. And so, people that say they’ve got poor circulation may well have Raynaud’s and not know it. That’s the other point. But Raynaud’s is, it really is an exaggerated response to your environment. So, you’re not just cold, you’re really, really cold. The hallmark generally, textbook wise, is the fact that you get…not only their extreme discomfort with being in a cold environment, but you get colour changes as well. So, Raynaud’s is a more extreme physiological reaction to temperature change. Emotion and stress can also cause Raynaud’s attacks. It’s our adrenaline hormone that kicks in when we’re anxious or emotional or stressed, which is also a potent vasoconstrictor. So again, our small, our little blood vessels is all happening on a microvascular level, narrow response to that hormone change or surge, and can also cause a precipitating attack. when I talk to my clients and patients, they don’t always realize, but actually when you mention it, they say, yeah, I really struggle if I’ve got to give a presentation at work. And it’s really bad just before I do and this sort of thing, or some friend of mine who does competitive running. She’s at her Raynaud’s dreadful for a race, because she’s all hyped up.

Katy: Okay. And then the running won’t help, it?

Louise Parker: Exactly. Really bad for the first bit of the race. And then she’s okay. it’s so what people don’t often realize is that it is absolutely a physiological response to temperature change. But stress and emotion can also be a trigger.

Debbie: So, what’s the actual treatment for it then?

Louise Parker: So, there’s a lot of, people will cope with sort of pretty well with, thinking ahead and practical interventions and conservative measures, getting ready for the day, making sure you’re warm before you leave the house, making sure if you can heat the car, if you can, things like that, making sure you’ve got everything that you need. If, if you’re out for a day and going to be outside There are some natural therapies that can be helpful. That’s anecdotal, but quite powerful. A lot of patients find that they help in the background. And there are medication options as well for some people who find it really difficult. They’re very safe, they’re low dose and they can be taken seasonally. So, plenty of patients that take just a low dose medication just through the autumn and winter months. And that just helps them get through the worst of it. And they feel they can come off it in the summer. I people that take something all year round and a combination of all those things. This is a very, like anything in health care.

This is a very individual problem and it’s not a one size fits all approach. People have a very different way of managing it and what works for them is not going to work for the next person. And that’s part of what I do is picking that with people and taking the time to understand what their triggers are. Everyone’s going to have, you know, different family history, different medication history. They’re going to have different things that make it worse or better and it’s individualising a plan for those people.

Katy: Okay and does diet have any effect?

Louise Parker: Not specifically. mean, we always say there’s, you know, eating a balanced, healthy diet, lots of oily fish,

Katy: Yeah.

Louise Parker: fruit, vegetables, nuts, all that sort of thing can all be helpful. There’s not going to be some things like warming foods, ginger, garlic, chillies, things like that, that have a sort of tokenistic, slightly warming effect if you eat enough of them. But it’s not going to make a difference. I mean, the only thing I would touch on with diet is I do see a lot of people in my clinic who are very, very slim. And if you’re very, very slim, from a physiological point of view, you don’t have a lot of insulation. So very slim people do tend to struggle a bit more with the temperature regulation. And particularly people who’ve lost weight, a lot of weight very quickly. Again, your vessels don’t quite keep up with that pace. So, people who’ve had intentional or unintentional weight loss for a variety of reasons, I also see do find it very difficult to manage.

Debbie: Okay, and I suppose also that leads into what’s going on in society now. We do have these weight loss drugs and I suppose we could well be seeing a lot more people with this disease because you lose a lot of weight very, very quickly and whether that’s safe or not, that’s very down to the medical people to decide, but yeah, you lose a lot of weight very quickly.

Louise Parker: I have seen that. So, people that have weight quickly and the, say you lose your, insulation for want of a better word, and your, body doesn’t quite keep the tissue in your vessels, don’t quite keep up with that rapid change. And of course, people that have had unintentional weight loss, who’ve been poorly or people, I see a of people who have chemotherapy are left with Raynaud’s like symptoms after chemotherapy. Often because they’re poorly and not well at all, or have been. But also, chemotherapy agents are very disruptive to the blood vessels, so they irritate the small vessels as well. So, they have that sort of double effect of being left with Raynaud’s like symptoms, which actually can improve after a while, and after the chemotherapy effects have worn off and they’ve put on a bit of weight, they can get much better. But I do see that as quite a common side effect as well.

Katy: If you’ve had a sort of episode and obviously everything’s really, really cold, you have to be sort of quite gradual and careful in terms of how quickly you heat up. Cause that’s when the pain can come, can’t it? When you’ve gone from being really cold and if it heats up too quick. So I think I get it very, very slightly in the winter when I play netball. And if I then have a bath afterwards and it’s really hot and I put my hands in, it’s agonising.

Louise Parker: Yeah, it is better to mitigate that is really, really

Katy: Yeah. Yeah. Beforehand.

Louise Parker: warm slowly, we say, just because it’s less of a shock to the vessels. and it’s painful, as you, as you say, like, any, environment where you’re taking your body to one extreme to the other, if you’ve got this problem in the background, getting into cold water, if you’re going open water swimming, for example, or getting into a bath after you’ve been playing sport and been out in the cold probably going to be uncomfortable. Yeah, so it can rewarm slowly beforehand a little bit would help.

Debbie: Yeah, because I also know that some people have said having once you had a shower, you then turn it really cold, that helps your immune system. And I suppose having inflammatory arthritis, that’s meant to help. But then having Raynaud’s it wouldn’t help at all.

Louise Parker: I know I would be quite uncomfortable for anybody with Raynaud’s

Debbie: So what is the overlap between having Raynaud’s and inflammatory arthritis? Do you know how the prevalence of that at all?

Louise Parker: So, yes, papers will tell you it’s about 20 % of people with inflammatory arthritis will have Raynaud’s to some extent.

Debbie: Okay.

Louise Parker: That goes up in the connective tissue diseases, but it’s vasculitis, polymyositis, matatomyositis, all those, Sjogren’s lupus, and then obviously highly prevalent in patients with systemic sclerosis. So it is, and as I say, there’s an association there for sure. But it’s a common condition in the general population as well. So you’ve got that angle too. The difficulty of course, if you’ve got a rheumatological condition of any kind, is that it’s something else to manage. And it becomes very difficult if you’ve got a joint pain and you’ve got cold hands that go stiff and numb and you can’t grip properly. Another complication that’s very difficult day to day to cope. And my sense is that patients aren’t asked about this commonly actually. And think because, and they’re always quite surprised when I go into so much detail with them because they’ve never been asked about it very often before. And I think because they’re never asked about it, they think it’s not important and so don’t ever bring it up either. And I think if they do, often get quite a dismissive reply, which is a bit of a shame when actually, as I say, it can really exacerbate another condition and make day-to-day life that much more difficult.

Debbie: But I suppose also, you’ve only got that 10 minutes to talk to the consultant. And you’re mainly there for your inflammatory arthritis. So, it’s just something else that you don’t really then talk about. And I suppose, Raynaud’s really isn’t spoken about at all. So, there must be lots of misconceptions out there that you must hear.

Louise Parker: Yes.

Debbie: What are the top ones?

Louise Parker: Patients with any rheumatological conditions are not asked about it routinely in clinic. And the fact that there is a misconception, there’s nothing you can do about it.

Debbie: Yes.

Katy: Yeah.

Louise Parker: And that’s just not true. That’s the sort of myth busting that we’re trying to achieve in our clinic, is making sure people can get some help.

Katy: And out of the general population, not people with other conditions, how many people do actually go and seek medical advice around Raynaud’s?

Louise Parker: It’s very difficult to know what, as you say, was out there because we don’t really know how many people are affected. We’ve got a 10 percent is the sort of general rule of thumb. But as you say, there could be plenty of people out there who feel the cold or, you know, struggle winters who may also have Raynaud’s to a greater or lesser extent. And I do think there’s people out there who know they’ve got something wrong, but just don’t know how to get the help or who to ask. And then there’s the people who definitely know they’ve got something wrong and have asked for help and have not got it. So you get the whole range really. And then you’ve got some people who will seek specific help, which is when they find us. The clinic is dedicated to it. So we do the consultation with me, which is, a long consultation and the same amount of time with my clinical scientist colleague, who does the thermal imaging and capillaroscopy to A, show your rewarming or lack thereof of your hands. Having put them in some cool water, he’ll watch them rewarm via a thermal camera over about 10 minutes and see how well you rewarm or don’t. And then the other important test is capillaroscopy, which looks at the small vessels in your nail bed and about how uniform or not they are. And that gives us a really good indication if there’s anything underlying or driving the Raynaud’s i.e. a secondary condition. So that gives us a really good clue how we then signpost people appropriately. If people have got primary Raynaud’s they’ve got normal bloods, they’ve got normal capillaries, but they’ve got really poor rewarming on testing. They’re primary, but they still could really significantly struggle day to day, and they need a bit of a management plan and a strategy tackle that. And then you’ve got people who do have an abnormal capillaroscopy, they’re very, very cold and they may have abnormal bloods as well and they need to be signposted back to rheumatology for formal work up.

Katy: So, it would be rheumatology that would help people. Okay.

Louise Parker: Yeah, yeah, we would signpost back to if we were concerned. Yes.

Katy: Yeah,

Debbie: As Katy said, is autoimmune. And we know that if we don’t treat our inflammatory arthritis, because that’s again autoimmune, we can get long term damage. Can that happen with Raynaud’s as well? If we don’t manage it or treat it in any way, does it get worse as you get older, if you’ve had it for a long time already?

Louise Parker: Yeah, if your underlying condition isn’t controlled, your Raynaud’s will be tricky to manage as well.

Debbie: Yeah.

Louise Parker: Again, because of the sort of slight stress underlying component of that and feeling very well will cause problems. So, I think needs to be managed first. it doesn’t necessarily get worse with age, I don’t think. I think it really depends on the person. I mean, Raynaud’s is a predominantly female problem. So, by some margin. So, of course in a female lifespan, if you like, we have very clear periods of time where we undergo significant change. So Raynaud’s usually starts in teenagers, young girls, about 14, 15. And that is where it’s generally going to be a primary form. It’s very commonly familial. You’ve then obviously got pregnancy, where it’s going to get much better because you’ve got a bigger circulating volume all of a sudden. People then find it gets a little bit worse once they’ve had the baby. And of course menopause is another surge change for women where hormones, for some people it gets better, say that not for everybody, for some people it gets better, for some people it gets worse. But again, think it’s how you manage that as well. More worrying would be when women or men, who develop Raynaud’s at an older age, out of the blue in their 40s or 50s or 60s. That’s more of a red flag. That would warrant further investigation.

Katy: Okay, why is that?

Louise Parker: Because it’s generally speaking, it’s probably likely to be secondary. Primary, we know, starts young, in teens or twenties for most women. But at an older age, if it’s come out of the blue, there’s something underlying that might predate another condition by months or years, actually. But it’s a bit of a flag if people have developed Raynaud’s out of the blue later in life.

Katy: Okay, and what type of conditions does it kind of potentially relate to? Yeah. Okay. Yeah.

Louise Parke: So your inflammatory conditions and connective tissue disease for sure. 30-40 % of people with lupus will have renal as well. And as I say, the vast majority of patients with systemic sclerosis, Raynaud’s is often an initial symptom.

Debbie: So, if someone does have this, they’re in that age group and with winter coming up and it comes out of the blue, go see their GP and then get a referral.

Louise Parker: Yeah, absolutely it’s worth having it screened so you know. You may as well find out, like anything, and then then you know where you stand and then you know how you can manage it. So go to GP, have some bloods, have an immunology screen if you’ve got concerns, if it’s rapid, out of the blue on set and it’s bad, then it warrants investigation. Definitely and could they always come to you if they didn’t want to go to the GP or if the referrals are too long?

Louise Parker: Yeah, the people who self-refer to us.

Debbie: Okay. Yeah, we’ll put those details in the show notes because Louise, you’ve been working in the NHS for 25 years before. And it’s great, that you are so passionate about this. how, just getting back to your background, how did you get into, rheumatology?

Louise Parker: I probably reasonably typical actually of a lot of rheumatology nurses. my first job was in trauma orthopaedics and plastic surgery. And my second job was a mix of it as a medical and surgical ward. was on a fast program with the hospital I trained in. And the second ward I ever worked on a bay of dedicated lupus patient beds. So, they had lupus inpatients and that’s where I first learnt about rheumatology and lupus patients and the treatments that were available at that point in time. And then my next job was at centre of excellence for scleroderma and connective tissue disease. But I led the rheumatology department as well. So, I over arched all of those specialties.

Katy: Okay, amazing.

Debbie: Wow, yes. Yeah, you obviously like rheumatology, which is great, get to see patients like us.

Louise Parker: Exactly and rheumatology is a fascinating medical specialty because it covers so many things. It’s so connected we work very closely with other clinicians and from other specialties when you work in rheumatology because it affects so many things.

Debbie: It does. And it’s been absolutely fascinating talking to you, Louise. So thank you so much for giving up your time today. my mind is overblown with just all the information about Raynaud’s It’s fascinating. And I think people just automatically assume, you know, everyone gets a bit cold, but actually, it’s not. And as you say, it could well be an underlying condition as well.

Louise Parker: Could be something more. And that’s why we say it is largely benign, but there is a proportion and a real proportion of people where it can be a sign of something else. So like anything with screening, particularly with women and women have a preponderance also towards autoimmune diseases too. So, it’s something I think people should have in the back of their mind get checked out. And if is difficult with their local team or their GP, then I would suggest that if you have concerns that you come and see a clinic like ours, to get the answers on the same day. We can tailor management strategies for you and a sort of plan of what you can do. And you get the tests and the information on the same day and correspondence very shortly after that. And I also run a follow-up clinic. So, anybody who wants to come back and check in with me about how they’re doing and if things have changed or again, they have worries, is a follow-up clinic where they can see me again.

Debbie: That’s brilliant. everything will be in the show notes. So yeah, thank you, Louise. Absolutely fascinating conversation. Please do sign up to our newsletter. We are at inflammatoryarthritis.org and you’ll get all the information about our upcoming episodes, our new events coming up and any other research opportunities as well. Please follow us on social media. We are on Facebook, Instagram, LinkedIn and Blue Sky and you can watch these episodes on YouTube. So don’t forget to subscribe to our channel. But until next week, Katy t’s goodbye.

Katy: Goodbye.