Thursday, 11 May 2017

FATIGUE in Raynaud’s Scleroderma, Rare Disease – An Unwelcome Symptom



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 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, I blogged about the event 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 fitbit 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 huge future post, as well as, please share your story www.misstreated.org/contact

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.

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

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 4th Systemic Sclerosis World Congress last year. Read more here

For details and how to register for the 5th Systemic Sclerosis World Congress 2018 Click here 

The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  
EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.
Living the dream, scleroderma style, hoping for a cure
#SclerodermaFreeWorld #RaynaudsFreeWorld

29th June World Scleroderma Day. Read more  here

Scleroderma Awareness flashback 2016. Read more here  
Thanks to Sharon Esposito for her wonderful creativity
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates  

To view the Facebook page Scleroderma Awareness Month 2016 campaign images
Click here

To view Facebook page Photo Album ‘Wellbeing Side to living with Raynaud’s and Scleroderma’ Click here


Thanks to Sharon Esposito for her wonderful creativity
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