
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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Update : I would like to thank everybody very much who showed an interest in my research project and to those who have agreed to participate, I am extremely grateful! I have had such a fantastic response that I can no longer include anyone else in the project, however I look forward to sharing the outcome of the project with FMAUK in a few months’ time. Best wishes, Sue Evans.
Is spirituality good for your health?
Hello. My name is Sue Evans, and I am an MSc student with the Alef Trust.
This study is exploring whether following a spiritual health programme can increase feelings of health and wellbeing in people living with Fibromyalgia.
Following the programme is simple and involves connecting with what makes you feel good – reading a book, listening to music or being in nature. Daily, short, meditations are encouraged as is keeping brief notes in a journal to mark your progress. You will be given a link allowing you to download the programme booklet before you start.
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We are currently recruiting a volunteer to cover our Regional Coordinator role in the South West 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.
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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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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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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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