Update - Chilblain Lesions, Erythromelalgia, Raynaud's

[Goldcrest100]

Hello again 👋

Firstly, I just wanted to say THANK YOU to everyone who commented on my post a few weeks ago. I really appreciate all the responses, everyone was so kind and so helpful.

I posted originally asking where I could get Nailfold Capillaroscopy done privately, as a rheumatologist I'd seen said this might help work out what's going on with me (i.e. what's causing my symptoms). The reason I asked about having it done privately is because local rheumatology wouldn't see me, and honestly I was just tired of fighting, so had decided to try to get a private appointment as I couldn't seem to get anywhere on the NHS. Many of you said that my GP should be able to refer me though, so I decided to go back and give it another shot.

To my surprise, my GP has now referred me to Royal Free, which I'm very grateful for. I think this was mainly due to my erythromelalgia, but I'm hoping whoever I see might be able to look at the various different issues, including the chilblain-like lesions and the white patches/possible Raynaud's symptoms. I'm not sure who I'll end up seeing - many of you mentioned Prof Denton, but presumably I could be seen by any of the rheumatologists in the department? I've just got my choose and book letter, so I'll have a look next week to see what appointments are available. I'm expecting there'll be a long waiting list, but that's ok.

I just wanted to ask, should I take anything with me to the appointment, or send a brief list of symptoms/symptom photos ahead of time, or is there no need for that?

[OldTed60]

That’s great - you’re so lucky to get sent to Royal Free! Here in Scotland we don’t get a choice at all - it’s pot luck. I would say that your GP could help by taking ANA and any other antibodies they can run plus full blood count, inflammatory markers and others relating to your EM to hopefully exclude paraneoplastic disorders, genetic mutations etc. Best of luck!

[Goldcrest100 in reply to OldTed60]

I know, it's amazing! I feel very grateful. I've had most of those blood tests done already, so I'll look back and find the results so I can have them to hand when I go to the appointment (in case they can't see the results on their system). Thank you!

[Halfwayuphill]

That is good news Goldcrest. I’ve been going to the Royal Free for over 20 years and have seen numerous Fellows, consultants and of course Professor Denton and they were all good.

I too am an abnormally (not that unusual in these connective tissue conditions!). I have a wavering diagnosis of UCTD/ Scleroderma but recently learned I had erythromelalgia from the Professor.

Hope it goes well and you get some answers

[Goldcrest100 in reply to Halfwayuphill]

That's really encouraging, thank you, it's good to know there's a great team of doctors there.

I've been really surprised to see just how many people here have Erythromelalgia, it seems a lot of people with Scleroderma/Connective Tissue Disorders have EM. Did the Professor suggest any treatment for your Erythromelalgia? Or are your EM symptoms not too bad?

Thank you!

[Halfwayuphill in reply to Goldcrest100]

Luckily my symptoms are not too bad. I did have an attack some weeks ago with a lot of pain in my feet and hands with redness but can’t remember what triggered it. I didn’t know what Erythromelalgia was but my rheumatologist put it in my clinic letter two years ago. I looked it up and can see I have distinct red colouration on the soles of my feet. I get pain in my feet from restless legs, numbness and Raynaud’s anyway. For years I’ve noticed I can’t put my feet directly on a hot water bottle though as my feet are usually ice cold. Somehow I can improve the circulation with a hot water bottle higher on my calves.

Regarding prior blood tests, all I had was a positive RNP antibody a vascular surgeon had ordered. He just said I might get RA one day. In those far off days I was referred to an ENT chap because of swallowing/ choking problems who then referred me the vascular surgeon. No one mentioned rheumatologist until I heard about Raynaud’s on the radio!

Hope it all goes well

[Goldcrest100 in reply to Halfwayuphill]

My Erythromelalgia symptoms are upside down compared to a lot of people with it, they're worst in my face, followed by hands, and mild in my feet. Every specialist I've seen has said this is unusual, but no-one seems to know why the distribution of symptoms varies so much between people. I can't have hot water bottles touching my feet either, I usually have them against my stomach as it's sufficiently far away from the parts of my body with EM.

I had to google RNP antibody, I'd never heard of it! Wow, well in that case it's good it was on the radio!

Thank you so much 🙂

[redmaggie in reply to Halfwayuphill]

Hi there, I don't want to hijack the conversation, but can I ask you if you have ever had treatment for the swallowing/choking problem. I am UCTD , have similar issues to you including that one. I have to manage the choking thing myself after several investigations, no further help. thanks!

[Halfwayuphill in reply to redmaggie]

Hello redmaggie, yes after finally being referred to the Royal Free I was sent to a gastroenterologist who worked with the Scleroderma team and had endoscopy’s, Esophageal manometry, and I seem to remember a test where you swallow something and they tilt you. They found scarring and evidence of reflux, and the muscles in my oesophagus don’t work properly. In fact the technician said it was as bad as anyone she’d seen with Scleroderma (I wasn’t diagnosed then). I was then prescribed a ppi. This healed my scarring and at last I could talk better. I have a feeling the talking issue had become less often over the years I was ill before seeing them. It’s such an easy solution I’m surprised they haven’t prescribed a ppi for you. Mind you, I’ve been on them for 20 years and I have osteoporosis but I do have other gut problems which have made me lose weight.

Hope you get some help. Were you diagnosed at the Royal Free?

[SBQ1971]

Great that you have got this appointment. One thing I would suggest is that you write down a full history of your condition to take with you. Being a first appointment they will probably ask for all sorts of details about when it all started , first symptoms etc, how long ago, medical history and it's easy to get mixed up when you are trying to remember, quite handy to have that with you. Good luck, hope you get some good information. I always find things much easier to deal with if you know and understand the problem.

Nothing to do with my Scleroderma etc, but for me a wonderful Christmas present. 10 years almost to the day, from my first diagnosis with Colon cancer, 2 operations and Radiotherapy, the little beastie kept coming back, my latest scan showed no further growth and I have been discharged by my Surgeon. Just wanted to share my news with you lovely people.

[Goldcrest100 in reply to SBQ1971]

Thank you so much for the advice, I'll definitely do that, as I do find it hard to remember everything sometimes, especially when appointments are a bit rushed.

That is wonderful news! And great timing, just before Christmas. I'm so glad you've got some good news after what sounds like a very long ordeal.

[honeybug]

Hi Goldcrest100 😊🌿🌸🦋

Yes you should do everything you can to prove your symptoms/experiences especially since you’re going private with possible wait time.

Keep a journal of your symptoms including dates of occurrence plus activities that result in symptoms the times and length of flares plus photos of flares.

Keep all of this info in a home chart on your cellphone and keep adding to it every time this happens. As time passes without pics/writing it down it may slip your memory due to life getting in the way.

I’m sorry you’re going through this. I’ve had it since birth and it took decades before diagnosis for me. I didn’t have the documentation for my doctor visits and was dismissed as it was all imaginary or being completely ignored…glad to take my money and was so mentally upsetting and depressing to suffer for years without any help.

I don’t want you to suffer like I had too. Best wishes for being believed and treated as soon as possible.

Love and prayers

EJ 🤗♥️🙏🕊🌿🌸🦋

[Goldcrest100 in reply to honeybug]

Hi Honeybug,

Thank you for the advice, I'll definitely put together a brief list of my symptoms and some photos so I have them in case.

I'm so sorry you suffered for so many years. I really hope things are better for you now.

[honeybug in reply to Goldcrest100]

My pleasure to be of any help. Thank you for your kind words. I hope your documentation is invaluable at your appointment.

Best wishes for proper diagnosis and treatment.

Love and prayers

EJ 🤗♥️🥰🙏🕊🌿🌸🦋