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talkhealth forums • Lost with Fibromyalgia
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Lost with Fibromyalgia

Posted: Fri Aug 16, 2013 10:56 am
by CarolineK
I was diagnosed with Fibromyalgia last December but since then I have been a little lost. Please could someone tell me where I can get help and advice? I have been rejected for Blue badge and all ill-health benefits and I have a feeling its because I havent got the right medical letters and stuff.

How do I know what is Fibromyalgia and what is something else that I need to go to the doctor about?

I just have so many questions and dont know what sources to trust. My GP is brilliant but just doesnt have the specific expertise to help.

Please - just need someone to help me as I am sick of this and need some way to start fighting back.
Thank you

Re: Lost with Fibromyalgia

Posted: Fri Aug 16, 2013 4:59 pm
by Wendy Green
Hi CarolineK,

I understand your confusion as fibromyalgia is a syndrome, which means it involves a variety of symptoms.

'Fibromyalgia' actually means 'tendon, ligament and muscle pain,' but as well as widespread pain and tenderness, sufferers usually experience a range of additional symptoms including: stiffness, fatigue, sleep disturbances, irritability, anxiety, depression, problems with thinking and learning ('fibro-fog'), headaches/migraines, tinnitus, IBS, sensitivity to foods noise, bright lights etc. and restless leg syndrome (RLS).

For a definitive diagnosis of fibromyalgia you need to have suffered from pain continuously for at least 3 months. The pain and tenderness should be widespread and affect both sides of the body above the waist. GPs often carry out the 'tender point test' which involves applying light pressure to 18 specific sites on the neck, shoulders, elbows, chest, lower back and knees. Experiencing pain and tenderness in at least 11 of these sites indicates you have fibromyalgia.

As you have been diagnosed with fibromyalgia it seems sensible to assume that if you suffer from any of the additional symptoms above they are likely to be part of your condition - but each one can still be treated individually - for example adapting your diet to manage IBS, or following good sleep hygiene to manage insomnia, etc; so if any of these symptoms are troublesome you have every right to seek help from your GP.

You could also explain your confusion to your GP and ask if you can be referred to a pain clinic where a specialist can offer suitable treatments.

I would strongly recommend that you look after your general wellbeing by following a healthy lifestyle and possibly taking one or two supplements recommended for fibromyalgia such as vitamin B complex, vitamin D, magnesium and malic acid, 5-HTP, and Red Montmorency Cherries (CherryActive juice/capsules/dried cherries). For more detailed information on a healthy lifestyle and these supplements please see my posts under the threads 'What supplements can help?' and 'Is it all in my head?'

Finally, there are organisations and websites offering excellent, reliable information, advice and support to fibromyalgia sufferers like yourself. These include:

Fibro Action - www. fibroaction.org
Fibromyalgia Association UK - http://www.fmauk.org
Fibromyalgia Support Net - http://www.fibromyalgia-support.net
Fibromyalgia Syndrome - http://www.fibromyalgiasyndrome.co.uk
UK Fibromyalgia - http://www.ukfibromyalgia.com

There are also some very helpful books about fibromyalgia including my own title 50 Things you Can Do Today to Manage Fibromyalgia, Living with Fibromyalgia
and The Fibromyalgia Healing Diet - both by Christine Craggs-Hinton.

I hope you'll find this information will help you gain a better understanding of your condition.

Good luck! :D