Raynauds Scleroderma Global Patients: Managing Primary Raynaud’s

Managing Primary Raynaud’s – Jane Ogilvie

Having been loosely diagnosed with primary Raynaud’s by my GP in my mid-twenties, nearly 20 years ago, I have been learning since then, what helps me to manage my Raynaud’s and what does not.

I am quite lucky as I am not severely affected compared to some. However, I am regularly exposed to the elements and the outdoors when looking after my pony.

I was also a motorcyclist until 3 years ago – but a fair weather biker, so I only ventured out when the weather was fit (not all that often in the UK!). I still have my pony, andso, I am out in all weathers at least twice daily.

Over the years I have tried ginger and gingko biloba supplements – neither of which I felt provided any benefit.

I have tried a few different types of clothing, thermal base layers work well with many layers over the top, finished off with a waterproof and windproof outer layer if possible.

It means feeling like the Michelin man and I have often worn two coats at the same time, but it is worth it.

Neck tubes and scarves are a must, both together for extra heat retention! Deerstalker style hats really help, especially when protecting the ears against a biting wind.

Footwear in a muddy field for me has to be neoprene wellingtons, there are several brands around and all, I assume, are similar. I have found it is important to not have socks which make footwear tight, as this can also compromise circulation.

Neoprene face masks, sold for use by skiers or motorcyclists, are excellent too.

Despite all of this I still get cold hands and good gloves have not been so easy to find. Neoprene gloves are not very useful in my experience- sailing neoprene gloves are combined with other materials, I think, to make them more durable, but thermal qualities are poor.

Mittens are, of course, better than gloves, but can be very restricting when you are trying to open and close gates, do/undo buckles on horse head collars and rugs etc.

I have ended up using ski gloves and mountaineering mittens (fit for serious subzero temperatures).

I have never had much joy with heated gloves, although I guess they must work for some.

Heat pads are all very well, but impractical when you are constantly using your hands, I have tried the 'teabag-like' ones and also the ones that have a little metal disc inside that you flex to activate.

Aside from neoprene, and thermals, my other favourite material is sheepskin – and before I had an electric blanket, I used to have sheepskin rugs in bed.

When I replace my feather duvet I plan to try a duvet made of wool.

I wear sheepskin boots to work all year round as the office is cool even in summer.

I keep fleecy wristies, a bit like fingerless gloves, in my desk drawer for chilly days when typing isn’t easy.

Overall my advice would be:

YES

Waterproof and windproof outer layers

Wear thermals / Wear layers

Bath

Sheepskin / wool, neoprene

Gloves, hats, scarves

Bed socks

Going outside in the cold if underdressed

Standing around in the cold

Putting cold hands / feet directly on to a radiator

Shower

Wearing thin flimsy smart / dressy clothes

Driving the car before it is warmed up

Winter sports

Swimming in a pool or outdoor swimming

A few years ago, my symptoms were extremely painful during a particularly cold winter.

I went to see my GP and was prescribed calcium channel blockers. Sadly, I could not tolerate the side effects of headaches and a rapid heartbeat, despite the novelty of having lovely warm hands and feet!

My strategy now, is to stop getting cold – and for the most part it works well. Some things are off the cards these days like standing outside to watch a firework display, going swimming or a skiing holiday, it’s just a case of knowing my limitations I guess.

Jane is a scientist who lives in Nottingham, UK.

#RaynaudsFreeWorld

To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here

To view the EULAR treatment guidelines, Click here

To view Thermograph Video, Click here

To view Thermograph image, Click here

My Raynaud’s reality, Click here

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here

To read My ‘Invisible Disability’ experience, Click here

Please DONATE to help fund medical research into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free Hospital, UK.

All of your monies will be used for medical research purposes only, lead being, the world trail blazer Dr Kevin Howell.

Dr Howell and I, Sept 2017

#RaynaudsFreeWorld #RaynaudsAwarenessMonth

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Living the dream, hoping for a cure ....

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October 2017.

To read my articles:

Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here

March Autoimmune Disease Awareness Month 2018, Click here

Global patient video, Click here

Becoming a Patient Research Ambassador for the NIHR, Click here

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here

Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here

Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here

The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

Key Event Dates 2018, Click here

Importance of an Early Diagnosis, Click here

Taking Part in Clinical Research Trials, Click here

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here

Expert Specialist Centres, Click here

My Skin is Cured from Scleroderma, Click here

UK Guidelines for Managing and Treating Scleroderma, Click here

Fatigue, Click here

Mobility, Click here

Diet and nutrition, Click here

Raynaud's, Click here

World Scleroderma Day 29^th June 2016, Click here

World Scleroderma Day 29^th June 2017, Click here

Why Global Collaboration is important to the Rare Disease Patient, Click here

RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here

2016 Rare Disease Day Patient Voice

2016 Rare Disease UK Parliamentary Reception

2017 Rare Disease Day Flashback

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –

Medical Research provides the brightest light

for the illumination of the rare disease patients’ plight.

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.

VIDEO

INDEX

Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same:

Early Diagnosis

Expert Specialist Centres

Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here

Preamble - here

The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19^th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre.

Sept 2017

I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.

I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004.

1^st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis.

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.

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