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Emily Canwood: Raising awareness of fibromyalgia

Hi, I’m Em. I’m 26, and from East Anglia and I have been living with chronic pain for more than ⅔ of my life.

I became disabled in the eyes of the government in 2018/2019 due to being diagnosed with fibromyalgia. In 2018 this was not when my journey with chronic pain began.

I remember being as young as 9 always complaining that my muscles and my knees hurt which was ruled down as growing pains. I was never the “healthiest” and I dealt with a great list of symptoms like being constantly nauseated, had poor balance/very clumsy, muscle cramping, lacking energy, just to name a few.

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Research - Attitudes of healthcare professionals towards those with Fibromyalgia

Research advert for Laura Scott

Lay study title: Attitudes of healthcare professionals towards those with Fibromyalgia

Institution: Staffordshire University

About the study: This study aims to explore the attitudes of health care professionals toward those who are diagnosed with Fibromyalgia and the impact these attitudes have on patient care.

Type of opportunity: To help in the development and design in a potential research project

When will this study be recruiting?  August 2021

What will participants be asked to do? Participants will be asked to share their experiences of Clinician attitudes towards them and how these attitudes impacted them and their care. After participants have shared their experiences, their experiences will help to develop statements will be used within the research. Participants will be asked to confirm the accuracy of these statements so that they may be used within the research.

Who can take part?Participants must have a diagnosis of Fibromyalgia,18+ years and English must be their first language

Who is conducting the research?Laura Scott, Trainee Clinical Psychologist

Who has reviewed the study?Yvonne Melia, Clinical Psychologist

How will the study benefit people with fibromyalgia?We are hopeful that the results of the study will help to develop improvement of patient care and start the development of training for clinicians.

Expenses: Unfortunately we are unable to pay for any expenses at this time.

What next / who to contact: If you are interested please feel free to contact Laura Scott for more information on This email address is being protected from spambots. You need JavaScript enabled to view it.

 

FMA UK Statement on NICE guideline changes

With the release of the NICE guideline on primary chronic pain we can start to examine the impact it may have on patients. It is our view that the fibromyalgia community will see this as a significant step back – both in their treatment options and their ‘legitimacy’ within the health service.  
In devising the guideline, the committee was looking to find best practice; yet was selective in the evidence it considered in scope. We feel that patients, with their body of first-hand evidence, are being overlooked. 
There are patients who can remain in employment, maintain a good quality of life, and increase their activity levels, thanks to treatment protocols that will now be unavailable to new patients. Some of these treatments help patients to such an extent that, in time, they can reduce these medications and leave them behind.  
While the committee recognises that there could be sub-groups that these medications are indeed effective for, the lack of understanding of chronic pain means that these sub-groups will be side-lined, together with everyone else. 

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Steph: Pregnancy with fibromyalgia

This is an emotive subject for me, I feel as though I’ve come almost full circle since having my daughter in 2016. I don’t look at my first pregnancy with fond memories - because I was debilitated by hormonal migraines, and by 16 weeks I was on crutches with a condition called Symphis Pubic Dysfunction where the ligaments in your pelvis become stretchy making walking painful, this condition later saw me in a wheelchair. (Hang in there, there’s a fibromyalgia related point to this, I promise.) At 36 weeks I was diagnosed with preeclampsia, I had to be hospitalised and induced, I had to have my waters broken manually and when my daughter finally arrived she was born withdrawing from antidepressant medication I was taking in pregnancy.

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A look back at 2020 for FMA UK

The year gone by is one which we have never seen the likes of before. It presented a huge challenge for the charity, as well as our community which we represent and society in general.  
 
Lockdown measures meant our staff members working from home – something which we have been doing throughout the year. It has had its challenges, but by using Microsoft Teams, we have been able to get most things done from home. We have still managed to get resources out to people during this, but as you can appreciate, it has taken longer than usual to get stuff out due to remote working.  
 
In 2020, we saw many of our fundraiser’s events cancelled or postponed which has impacted our income, however, we saw new inventive ways of raising money, with people taking part in virtual events. Some of these include a virtual Hadrian’s wall challenge, gaming streams, sponsored head shaves, and many more. To everyone who has helped with fundraising and to those who’ve deferred their events, we say a massive thank you and appreciate all of your efforts.  

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Chris: My experience with fibromyalgia

For as long as I can remember, I have suffered with aches and pains. Some days it would get me quite low.
I always remember thinking how I shouldn’t feel like this at my age, but everyone would always shrug it off as either, growing pains, because I carry a little extra weight, the fact I’m diabetic etc…
 
It was made worse when about 8 years ago, I slipped over and hurt my back, which then gave me a weakness.
For years I would just keep going, not moan too much – even when close friends would notice something was up. I started to talk to doctors, I saw a private physio & osteopath, I was referred for acupuncture and saw an NHS physio. All helped for a short while, but nothing long term!
 
As years moved on, about 3 years ago things got worse, I noticed other joints hurt, I was losing grip in my hands so I started to seek more medical help, it was just put down to my previous back injury.
I started to feel like I was going mad, like it was all in my head. People weren’t believing me. This is when my anxiety started, and I started to feel like people were against me. 

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More Articles...

  1. Katrina Irapah: My experience with fibromyalgia
  2. Steph: My experience of fatigue
  3. Ian Taverner: How Fibromyalgia has impacted me
  4. Fibromyalgia Grief
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  6. Harvard Article - CBD for chronic pain: The science doesn’t match the marketing

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