"Fibromylagia"

About: Lynebank Hospital Queen Margaret Hospital / General Psychiatry Victoria Hospital / Rheumatology

(as the patient),

For the past 9 years I have felt lost in the healthcare system. I have since been diagnosed with Fibromylagia and associated depression.

I feel that the healthcare system could provide a far better service to patients with Fibromylagia. Through the years I have seen a number of health professionals: podiatrist, psychologist, psychiatrist, numerous gp's, counsellor' rheumotologist and pain clinic.

I have felt moved from pillar to post which may have been partially due to my mental health. I found the mental health service extremely useful and they supported me to access further support for Fibromylagia.

I particularly found the rheumatology appointment difficult. I suppose in hindsight I was still looking for another curable case for my aches and pains. I had been told by another health professional that the aches and pains were associated with my mood and basically I should stop hunting for a medical cause and accept it. When I was seen at rheumatology I was told I had Fibromylagia, given some leaflets and told about support groups to look up online. Medication was mentioned but none offered. I was told to exercise. I responded it was difficult to exercise when in pain. I was told to take painkiller but none was prescribed. I ended the appointment in tears. I later asked my gp for a physiotherapist referral but was told as not made by rheumatology it was not needed. The psychologist later referred me to the pain clinic. I was hesitant due to previous experiences. The physiotherapist at the pain clinic was the first person I felt really understood my condition and was supportive but I personally felt the pain clinic set up was not the most supportive for my condition.

I personally feel there needs to be increased awareness of Fibromylagia within nhs fife and the public. I also feel a Fibromylagia dedicated service may be able to provide the best individualised support. E. g prescribe medication for all aspects for the condition, cognitive behaviour therapy, exercise programmes, support with things such as life and critical illness insurance. I understand this is not likely due to budget but it would be nice for people to understand that I'm young but I'm limited in what I can do. I feel the fact I have been turned down for life and critical illness insurance sums up the lack of knowledge of this condition as I have never been off work with this condition. I would just like further suffers not to feel so lost and ignored.

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Responses

Response from Louise Ewing, Patient Relations Manager, NHS Fife

picture of Louise Ewing

Dear fibromyalgia sufferer

Thank you for taking the time to tell us a bit about yourself and the condition you have been diagnosed with. Feeling lost and ignored is not how we want people to feel and I am sorry you have felt like this. I know that reaching the point of diagnosis can at times be difficult and involves people having to be seen by various specialties which can feel very disjointed for people adn clearly this is how you felt.

You highlight a mixture of positive and negative encounters in your experience and I will be glad to share with staff your positive comments about the mental health service and the physiotherapy service within the Pain Team. With regards the Rheumatology appointment, you recognise this was a very difficult consultation and I will share your comments with the team and also ask them to consider if there is more we can do to provide support to people like yourself.

In the meantime, thank you for taking the time to share your experience with us.

Regards

Louise Ewing

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