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.
Research - Attitudes of healthcare professionals towards those with Fibromyalgia
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. 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.
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. 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.More Articles...
Highlights
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- National Helpline 0300 999 3333 (10am - 4pm Mon - Fri)
- Benefits Helpline 0300 999 0055 (10am - 12pm Mon, Wed and Fri)
- Complimentary information booklets for doctors and other professionals (fully referenced)
- Books and videos
- Website Contacts with legal specialists
- Conferences
- Local support group and helpline contacts
If your Health Care Professional needs some education in fibromyalgia you can request that an FMA UK Health Professionals Pack is sent out to them. All we need is the name of the Health CareProfessional and the address of their practice. We will then send a pack to their surgery addressed from us to them.
You can request a medical pack using this form.
Trustee meetings are held monthly via Skype and last about 2 hours. There is an annual meeting that coincides with our group leaders’ meeting over a weekend.
To make a donation, text 'FIBRO' to 70085 to donate a default £10. This costs £10 plus a std rate msg.
Alternatively, you can opt to give any whole amount up to £20, by texting Fibro + the amount you wish to donate, e.g. FIBRO 5 to donate £5.
Please share to make our followers aware of our new text donation arrangement.
You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.
