Some highlights from the Parliamentary debate on fibromyalgia.

As to the way forward, it is a confusing situation but there has been no change of the equality act or any other legislation. A back bench meeting like this cannot change the law and they have passed the motion in front of them

The minister said in the debate that fibromyalgia could be a disability under the act already but people are treated on a case by case basis so it is unlikely to change anything in DWP processing any time soon.

This was great for awareness and momentum but more needs to be done.

Woman becomes first UK patient to get cannabis prescription

On Sky News they have an article about Carly Barton becoming the first UK patient to be prescribed Cannabis under the new guidelines published in November. She has Fibromyalgia and it was prescribed by a private pain specialist.

While it is great to see movement on this and for someone with fibromyalgia having access to new treatments, we are concerned about the confusion over the rushed guidance with the official NICE consultation process on future guidance only starting after the November guidelines are in effect.

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FMA UK statement on recent government change in policy regarding Cannabis medicines.

Fibromyalgia Action UK firmly believes that clinical practice must be based on good quality evidence. As a charity responsible for advocating on behalf of people with fibromyalgia experiencing chronic pain, we support Pain UK’s recent statement, calling for further investment into research in this area, in order to ensure that we have the clinical evidence required to help people with chronic pain conditions like fibromyalgia.

We have heard from many people with fibromyalgia who reacted positively to the Government’s announcement in September 2018 about Cannabis-based products for medicinal use. There were expressions of hope that people may be able to legally access a treatment that they were currently benefiting from. We also recognise that the current draft scope guideline formulated by the National Institute for Health and Care Excellence (NICE) on Cannabis-based products for medicinal use does not include the Cannabidiol (CBD) food supplement area, which we anecdotally know that many people in the UK are using in hope of helping to manage their chronic pain. Fibromyalgia Action UK have registered as a stakeholder with NICE when developing this guidelines, to ensure that the voice of people with fibromyalgia is recognised.

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Male Case Study - Stephen

As Part of our recent request for male case studies during Mens Health Awareness month we have the pleasure of sharing Stephen's story below:

It took Stephen over 11 years to get a formal diagnosis and he had to see 4 doctors during this process.

"It's been such a long time. The last time I felt well would have been in my teens. I'm 34 now so over half my life has been difficult. It fills me with sadness to look back. I had hope and dreams. Had a career idea. I was sociable. I've lost pretty much all of that. I try to remain positive but it's very difficult.         

I injured my neck age 13 so all my pain was put down to that. I lost my self-confidence as I was told many times it was your neck even though I knew there was something else. It took 14 years to get diagnosed. Scandalous! I felt because I was young/healthy/physically fit I was dismissed. I was also put on end of life strength drugs Fentanyl for over a decade. The doctor that diagnosed me was very good but it took years and year of my persistence.         

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Male Case Study - Paul Evans

As Part of our recent request for male case studies during Mens Health Awareness month we have the pleasure of sharing Paul's story below:

Paul saw numerous GPs over a period of 3 or 4 years before finally getting a diagnosis of fibromyalgia over 30 years ago.

"I was physically active and enjoying life with a young family before I was diagnosed with Fibromyalgia.

One GP was dismissive, others were sympathetic but offered very little other than ‘change your lifestyle.' A family member searched out a consultant for me. Diagnosis by consultant was a relief after several years not knowing what was happening to me. Having a name to tell people when they asked made a big difference. Once I’d been seen by hospital consultant, diagnosis was quick. Follow up management in primary care was Ineffectual.        

I feel much more in control since having to leave full time employment and learning how to self-manage. Still very restricted in what I can physically do. I’m still prone to low mood, but feel better able to self-manage condition.        

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Sam Pierce's Great South Run in aid of FMA UK

Sam Pierce has run the Simply Health Great South Run to support Fibromyalgia Action UK. A big thank you from our Team for raising £175 via JustGiving. 

Sam told us her story: ''I last ran the Great South in 2009. I was fit, healthy, and enjoying my life as a Gym Instructor and Pilates Teacher.  9 years, no longer working, several scary symptoms and finally a Fibromyalgia diagnosis later,  I’m attempting to run it again.

 I have no idea if I’ll get round - it’s unpredictable this nasty Fibro creature, and my body doesn’t always do what I want it to do. On bad days, it gives me pain (and lots of it!) tingling, burning, numbness, hyper-sensitivity, affects my fine motor skills, makes me woozy, crazily tired and slow to process things. 

But...on good days, I can still run. I’m very aware that lots of people I’ve since come across who are suffering with this strange and not very well-understood condition aren’t able to. I’ve spoken to lovely people who are really struggling and who’s lives have been hugely impacted. So, I want to try and use my running do something for them, something to help fund support and research. 

If you would like to donate visit Sam's JustGiving page: 

https://www.justgiving.com/fundraising/sam-pierce1