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Sophie’s story – why Therapies Matter

“After sustaining sports-related injuries in 2004, requiring intensive physiotherapy, I was in constant, chronic pain, extremely fatigued, and subsequently diagnosed with Fibromyalgia (FM) in 2006.

“I joined the first therapy-led Fibromyalgia Self-management Programme (FSMP) at the RNHRD in 2007, where I learned strategies to manage the pain, fatigue, and cognitive dysfunctions (‘fibro-fog’).

“I was delighted to be invited and become a member of the team to support the programme as the first Rheumatology Expert Patient volunteer in 2008.

“The confidence and support that I received, helped me to consider studying part-time for an Open University degree.  I achieved my lifetime goal, this July 2017, gaining a BSc (Hons) Psychology degree just before my 60th birthday!

Sophie Moss landscape removed name

 

“To say that I was, and still am over-the-moon, is an understatement, proving it is possible to achieve your dreams with the appropriate support.

“The benefit of FSMP being therapy-led, is that it is an educational one, which is based on current research, drawing on the expertise of healthcare professionals. However, it is interactive, requiring patient commitment and involvement, to make the changes necessary to improve their quality of life.

“I owe a lot to this unique programme, and would highly recommend it.”

If you’d like make a donation towards the new RNHRD and Therapies Centre, you can make it via our website or through JustGiving.com

 

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Vikki’s story – why Therapies Matter

Vikki Knowles explains why the RNHRD and Therapies Centre means so much to her…

” In 2014 following a routine operation I developed severe pain and stiffness in my neck, shoulders and pelvis. This progressed quite rapidly and I became severely incapacitated with my husband having to help me wash, dress and manage everyday activities. I did manage to keep working in a limited capacity but the pain and stiffness was very difficult to manage at work. Getting in and out of my car was especially difficult and as a community specialist nurse this was possibly the worst aspect.

“I was referred to a Rheumatologist who diagnosed me with Polymyalgia Rheumatica (PMR). I was started on oral steroids and told that this would sort out all my problems. However, I wasn’t comfortable with the diagnosis as the symptoms seemed more extensive that those seen with PMR as the pain and stiffness continued to cause problems. I also experienced severe fatigue and interrupted sleep pattern.

“My GP who had been supportive referred me for a second opinion. Dr Chander, the second consultant I saw was extremely thorough and agreed that this did not look like PMR. Following extensive investigations and I was diagnosed with non-radiologic axial spondylitis.

“It was at this point I joined the National Ankylosing Spondylitis Society (NASS) and heard about the Ankylosing Spondylitis (AS) course being run at the Royal National Hospital for Rheumatic Diseases (RNHRD).

“In April 2017, I started the two week AS course. It was a revelation, the staff are amazing. I was lucky to be with a great group and we have forged a really close supportive network, which has helped keep us all motivated. Following the course I have gained pretty much full mobility and can now do all the things I was unable to do prior to attending including getting in and out of my car.

“The educational component of the AS course is also of great value as even though I am a nurse I learned so much more about living with the condition. It equips you with the tools to maintain a healthy lifestyle and keep you moving but it depends on the individual continuing to practice what they have learnt. I have started yoga and Tai Chi as recommended and do my exercises regularly so that on my six month post course review my scores had continued to improve. I would never have achieved this had I not been lucky enough to have access to the group as there is no local AS services where I live.

“Attending the AS course has truly changed my life and I feel so grateful to have had such excellent support from the wonderful staff at the RNHRD.”

If you’d like make a donation towards the new RNHRD and Therapies Centre, you can make it via our website (click here) or through JustGiving.com

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