Raynauds Scleroderma Global Patients: FATIGUE in Scleroderma, Raynaud's, Autoimmune Rare Disease

FATIGUE

Scleroderma, Raynaud's, Autoimmune Rare Disease.

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The fatigue which accompanies scleroderma is not only an unwelcome relentless symptom which is difficult to control and manage, it can quite often be overlooked, with the initial management of the disease focussing on the more important (quite rightly), life threatening, skin and organ fibrosis progression.

There are possibly a combination of factors to the scleroderma patient which cause fatigue- not only the body’s immune system being out of control, but also medications, lack of quality sleep, constant pain are all contributory factors in the fatigue mix. Furthermore, a Raynaud’s attack can set me back for hours, feeling as though I have been wiped of any energy.

Even the most simplest / basic of tasks (bathing, getting dressed etc) can seem to require Herculean strength on some days, which can lead into months, years, decades…..

The severity of the scleroderma patient fatigue is not on the same level as a ‘healthy’ person would feel fatigue.

The fatigue which I felt, before scleroderma turned up in my body, (usually caused by a few nights out enjoying myself, being a singleton living in a vibrant city), would probably go away by having ‘an early night’.

That fatigue was a breeze compared to the typhoon which has engulfed me for most of the last 19 years, and, which is gradually improving to an almost acceptable, manageable level.

This has required extreme self discipline on my part, by being awake in daylight hours and keeping sensible bedtime hours- in the hope to minimise the severity of the other multitude of symptoms, of the next day!

And of course, it is always a cause of celebration to be able to sleep long enough without being awoken by pain. That is, if you have managed to get to sleep in the first place!

I have to prepare my body for weeks in advance of a ‘big day out’- which is usually to attend a meeting in London for my NHS or EMA advisory roles.

My last ‘big day out’ was to attend the Rare Disease UK reception at the House of Commons for Rare Disease Day. The article also features on the Rare Disease UK website, here.

Me, Ben Howlett MP Chair APPG on Rare, Undiagnosed and Genetic Conditions,
Dr Larissa Kerecuk Rare Disease Lead at Birmingham Children's Hospital

Although the experience of attending the reception was one of the highlights of my 19 year patient journey, my body, 5 weeks later, is only just, easing its protest at having been out and about!

For the 2 days following the event, I was unable to eat or digest food as my body was too exhausted!! I was not even able to stand long enough to make my daily juices!!

But at least that was an improvement from the experience of the previous ‘big day out’, where I blacked out on my tiled bathroom floor whilst making my way to bed! I now have a dent at the top of my forehead as a reminder that I have to pace myself!

It would appear that other autoimmune patients experience a similar partnership with fatigue. Katie, www.misstreated.org is a lupus patient and included the following very helpful fatigue scale in her recent blog post on tiredness:

FATIGUE SCALE

10. Can barely move. Can’t talk

9. Can barely move. Can talk.

8. Can move, but cant do much more than watch tv

7. Can watch tv and play a game on my phone simultaneously

6. Can do work on my computer lying in bed

5. Can get around the house, but definitely could not go out

4. Can run a light errand

3. Can get in my 10,000 steps for the day, making my fit bit happy

2. Can do three or more activities in a single day

1. GOING CLUBBING

Using this scale I am usually a 5, with a 4, a couple of days a week, if I have been going to bed at a decent hour!

To read the full article, Click here

It would also appear that, there are many other similarities with MissTreated including a lengthy time to diagnosis and disbelief from medical professionals who are not familiar with the diagnoses and their symptoms.

This is a topic for a future post, as well as, please share your story, here

On a personal note, I have learnt to silence the voice in my head which tells me I am being lazy when my body is having a flare of symptoms, and I have replaced it with a far more helpful, gentle voice, that tells me to rest, so that I can give myself the best chance of feeling better tomorrow.

As, all in all, I want to feel good.

As it is with all of the symptoms for the Ssc patient, everyone has a different experience / coping mechanisms. I hope that this gloss on fatigue has been helpful for you.

April 2016. Column

2017 UPDATE

Sadly, 12months on, from first writing this article about fatigue, this symptom still remains a huge challenge for me, physically and mentally. This can lead to immense frustration, which can be self destructive if not monitored and kept in check.

I have shared some of my coping strategies of living with this body hijacking diagnosis, on my ‘alter ego’ blog CosmicFairy444.

Living with a chronic, currently incurable, rare diagnosis forces you to respect that your health and wellbeing is a daily priority.

To read my article, ‘Ah Great, another day to spend in bed, said no Raynaud’s Scleroderma Patient’, Click here

To read my article ‘My Job Today is to Simply Get Better’, Click here

To read my article ‘Mobility in Raynaud’s Scleroderma’, Click here

To read my article ‘Living the dream as the real life tin man’, Click here

As a patient, it is very encouraging to note that the symptom of fatigue is now being recognised by the scientific community, having been featured during the 4^th Systemic Sclerosis World Congress last year. Read more here

For more details, Click here

An edited version of this article was published here, in my Column with Scleroderma News. April 2016.

Scleroderma Family Day 2020

25^th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME

09.30 – 10.00 Registration and Coffee

10.00 – 10.20 Welcome Dame Carol Black

Prof Chris Denton & David Abraham

10.20 – 10.40 What is a Biopsy? Dr Kristina Clark

10.40 – 11.05 Dental aspects of Scleroderma Prof Stephen Porter

11.05 – 11.25 Gastrointestinal problems – Dr Fiza Ahmed

shedding new light on old problems

11.25 – 11.50 Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15 Scleroderma cohort studies – Dr Francesco

‘Learning from our patients’ del Galdo

12.15 – 14.15 LUNCH BREAK – see below

14.15 – 14.45 25 years of progress – Prof Chris Denton

from ‘black box’ to ‘positive trials’

14.45 – 15.15 International speaker – Dr Madelon Vonk

Scleroderma Management in Netherlands

15.30 Raffle

Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials Rachel Ochiel and team

National Institute of Health Research Christine Menzies

Drug Information / monitoring Pharmacy

Massage Keith Hunt MBE

Pulmonary Hypertension Education / nursing Sally Reddecliffe/Adele Dawson

Rheumatology Laboratory Research Laboratory Staff

Scleroderma Education / Nursing Louise Parker/ Joseph Cainap

Thermography Dr Kevin Howell

SRUK Ollie Scott

Sjogren’s syndrome British Sjogren’s Society

To Read My Articles:

Gift in My Will, Click here

Planning for the Future, Click here

Rare Disease Day:

Rare Disease Day 2020:

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here

Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here

Rare Disease Day 2019: Leaving a Legacy Gift, Click here

Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here

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

2017 Rare Disease Day Medical Research

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

2016 Rare Disease Day Patient Voice

2016 Rare Disease UK Parliamentary Reception

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.

To read about medical research at the scleroderma unit, Click here

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 overall.

For optimum patient care, 3 hallmarks preside:

Early diagnosis

Expert specialist centers

Access to innovative medicines

supported by a medical ‘dream team’

(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.

To read my articles:

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here

NIHR Video: 'My Experience of Clinical Trials', 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

2018 Scleroderma Awareness Raising and Medical Research, Click here

SCLERODERMA:

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- How to Diagnose, Click here

'All you need to know', 2016 Awareness Video, Click here

Global Patient Profiles 2018 Video, Click here

Unmet Medical Needs, Click here

Calcinosis Video, Click here

The scleroderma tooth fairy, Click here

Skin Cancer and scleroderma, Click here

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019

This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.

Read more, here.

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.

I am truly humbled and inspired by their work ethic and commitment to their patients.

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 original diagnosing doctor, that I was looking at a 15month prognosis.

Chat Magazine May 2019

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. Read more, here

World Scleroderma Day 2018, Click here

World Scleroderma Day 2017, 29th June, Click here

World Scleroderma Day 2016, 29th June. Origins of the date, Click here

World Scleroderma Day 2015, 29th June.

James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.

I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.

To view the presentation, Click here

Raynaud's:

October:

Raynaud's, Click here

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

The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

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

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here

50 Shades of Blue, Click here