Thursday, 11 May 2017

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


FATIGUE
Scleroderma, Raynaud’s 
Autoimmune Rare Disease


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. 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 4th 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.  

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   


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 29th June 2016, Click here

World Scleroderma Day 29th 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  

More unmet clinical needs  

Rare Disease Day 2016



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



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 19th 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. 

1st 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.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  



100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018




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