Emma Emmerson: Why I'm raising awareness for my daughter

At the age of 18 my daughter Molly was diagnosed with Fibromyalgia. For me, this wasn’t too much of a shock as we had fought for 4 years to get a diagnosis of some kind for the constant pain, she was in. For me this was the worst part fighting for a reason behind how she felt. It took so long that it really impacted her mental health and she started to think she was imagining it. So, in some ways it was a relief to get that diagnosis. 

Then the thought process starts - How will she cope with the constant pain? How will she deal with being so limited in her ability to exercise? How will this affect her career? One thing was certain this wasn’t going away but it wasn’t life limiting so we had a huge positive there to start from. 

In the last 12 months, Molly has been increasing her exercise little by little in the hope that one day she will be able to ride her horse or attend dance classes again. She chose to continue her accountancy studies which is difficult with the fog but she is fortunate that I have a practice so if she is struggling with the exhaustion, we can work around it. Socialising takes its toll on her and whilst she does go out with her friends you wouldn’t find her in a nightclub at 3am. 

Read more...

Jenny Timms: How heat can impact my fibromyalgia

When it comes to seasons like many, I used to look forward to the summer months where I could enjoy the sunshine by lazy days in the garden sunbathing, gardening, daytrips at the beach enjoying an ice cream whilst the sun beat down on me or else I would track the sun by going abroad to a hot climate, that was until I developed fibromyalgia.

Today I am finding myself doing the opposite, wishing that we have a cold spell all year round, why, you must be wondering, well the reason is that those long-awaited hot days now cause me to sufferer terribly!

As the temperature rises so does my distress because my skin feels like it is blistering burning all over, I cannot even bear cloth next to my skin and trying to find a comfortable position is impossible because any areas of pressure feels raw and prickly.

Read more...

Foggy's: Celebrating 10 years as a support group!

I (Deb Cooke) suffered with a number of symptoms for many years, and believed that my medical records had me written up as a Hypochondriac.  My symptoms would vary from day to day.  One day I’d have pain in my right leg for example, and the next day would be my left arm, and ALWAYS my neck hurt.

I finally found a doctor who diagnosed Fibromyalgia.  When I read the symptoms for Fibromyalgia, I cried.  Here I was written down, and I wasn’t alone.

However, June 2010, I contacted FMA UK to find the nearest support group and was told the nearest was in Calne.  I was actually more interested in finding support and information for my then partner, as he found Fibromyalgia harder to live with than I did.  I was encouraged and assisted by FMA UK to start the group and Foggys was born.

16th August 2010 ~ I sat nervously, in the small hall of Liden Community Centre, Swindon, hoping someone will turn up to Foggys 1st ever meeting!  I can still remember myself saying to my then partner, “I hope people turn up”.  An hour later, nerves gone, as 50ish Fibromyalgia sufferers and loved ones turn up and Foggys was officially born.  At one point we thought we'd be out of the door, as we had to keep moving to make room.  Sounds scary? That amount of people. No, it was brilliant.  Relaxed atmosphere, few tears, lots of laughs.

Read more...

FMA UK Volunteer Vacancy - Berkshire & Buckinghamshire

We are currently recruiting a volunteer to cover our Regional Coordinator role in the Berkshire & Buckinghamshire area.

Our Regional Coordinators are our point of contact for new enquiries via email and telephone, provide support to the local Support Groups in the area, and represent FMA UK at events among other tasks.

Read more...

Billy Ray Mansell: Exercising whilst living with fibromyalgia

Billy Ray Mansell answers questions below about how he exercises whilst living with fibromyalgia. Billy supports the We Are Undefeatable campaign which encourages activity and exercise in those who are living with a health condition and has provided us with an informative insight into his experience of this. 

How can fibromyalgia make you feel, and what barriers would this bring to exercising? 

With my fibromyalgia, I can’t ever seem to escape the physical pain and the muscle tension I have all over my body,  the random aches and pains, and the fatigue on a bad day can be tough to manage. 

Consequences of this can lead to:

- Forced bed rest. 

- Sometimes I cannot exercise how I would prefer or at all

I may have to strip this back down to my roots like some simple stretching, some short walks or low impact activities (activities with less chance of additional injury but what will still have a positive impact with me moving more).

These are just some of the physical barriers, which again are closely linked with the mental health barriers, such as when I ask myself, can I do that?, my body won’t like that?, this will make me worse?, all questions I have asked so many times but the biggest one for me is, not even necessarily the thoughts of doing whatever activity it may be, but the aftermath of doing some activities don’t necessarily impact me straight away, they hit me hard the following day or the day after that. 

Read more...

Janet Horton: Why I volunteer for FMA UK

My role in FMA UK is as a trustee and my specific role is Benefits Adviser, I also respond to all the emails that come in on the This email address is being protected from spambots. You need JavaScript enabled to view it. emails. I help in any other way also, as needed.

I became involved with FMA UK - then Fibromyagia Association UK in November 1993 when I got my official diagnosis of Fibromyalgia, I had had it 4 years by then. I immediately offered to do benefits advice as I had been volunteering for Citizens Advice since 1990. The offer was accepted and I have been the Benefits Adviser ever since. I was not a trustee at the time but became one when Bob Stewart took over FMA UK in 1997. I took on the role of responding to emails in the early 2000's.

Apart from being available on the Benefits Helpline every Monday, Wednesday and Friday up until 2000 and since then Monday and Friday, I have attended all the conferences that FMA UK have arranged, travelled several times to London for meetings with various bodies of Government including the Chief Medical Officer of the DWP back in the early 2000's.

Read more...