Advice on coping with Fibromyalgia

shellfibro2006 · January 2020

I have decided to join because I feel very alone through this. I am married but I know its impossible for anyone to understand how it feels to have fibro. I have struggled with Chronic pain for the past 7 years or so with it steadily getting worse. I waited for two years to get an appointment with a rhuematologist on the NHS as my mother has rheumatoid arthritis but the blood results didn't show anything. So I arrived at the appointment and was told I had fibro and there was little to no treatment just management of the condition. I pay my taxes and I expected more from my GP as I attend every 3 years approximately, I am not an avid user, this should prove that when I am attending clinic I am truly ill. Anyhow, I wanted to going the forum because I am desperate to find some relief. I am currently struggling with day to day life, at the moment going through a major flare up and have nowhere to turn. Just in dire pain steadily. Any advice is welcome...

poppy123456 · January 2020

Hi and welcome,

I'm one of the community champions here on scope and i'm here to help and advise others.

A lot of our members here have fibro, myself included. I also have other severe pain conditions so i fully understand. I was diagnosed with it in 2013 and suffered with it for 2 years before i finally was diagnosed. After that i was also diagnosed with CRPS and pernicious anemia.

When i was first diagnosed with fibro it really wasn't very well understand by a lot of people, GPs included but not i find it completely different, More and more people are beginning to understand it. For me though, it doesn't matter how much pain medication i take, nothing helps. I do take morphine everyday and have done for quite some years but i'm still in a huge amount of pain everyday. I asked to be referred back to the pain clinic and have waited since April 2019 and finally i have my appointment in 10 days, but i don't hold out much hope of help.

I have found that hot showers/baths and anything that's hot will help my pain when it's at it worst but it's trial an error for everyone. What might work for one, may not work for another person because we are all different. Have you tried finding an alternative to pain medication?

You could ask your GP to refer you to a pain clinic but do be aware the waiting times for appointments are quite large and you could be waiting several months or more. If your GP isn't very understanding then i'd advise you to see a different one and hopefully they will be a little more understanding.

Hopefully you'll find something that will help your pain, even if it's a little.

chiarieds · January 2020

Hi @shellfibro2006 - Welcome to the community from me too. I'm sorry to read about the problems you're facing, as I also have some understanding.

I have a genetic disorder (the hypermobile type of Ehlers-Danlos Syndrome, or hEDS). Drs as yet don't fully understand why many with hEDS suffer chronic pain; myself included. I read just last week, that the pain we have is very similar to those who have fibromyalgia. I additionally have neuropathic pain. Like Poppy, I've found pain medications largely ineffective, including morphine, which I was on for 7 years.

I have a wonderful GP who understands Ehlers-Danlos Syndrome, but he has also said that pain medication is mainly ineffective in those with hEDS.

I've also found that heat helps. Again, it might just be a way of coping with the pain that will be a way forward for you. My mainstay is gentle exercise, relaxation exercises, visualisation, mindfulness & distraction.

I'm a physio, but haven't worked as such for a very long time. However, I did use to teach relaxation exercises including 'diaphragmatic breathing,' which can be effective in reducing stress, & therefore pain. Here's a link: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf

Here's some links to fibromyalgia websites, & those concerning chronic pain, which I hope may also be helpful:

https://ukfibromyalgia.com

http://www.fibromyalgiasyndrome.co.uk/

http://www.fmauk.org/

https://www.awaywithpain.co.uk/

http://painconcern.org.uk/

http://www.action-on-pain.co.uk/

Chloe_Scope · January 2020

Hi @shellfibro2006 and a very warm welcome to the community. How are you doing today?

We have quite a few members that have fibromyalgia so I hope they can continue to offer support and guidance.

deb74 · January 2020

Hi @shellfibro2006. I have fibro and ME. When I first went to see a dr with symptoms about 7 yrs ago I was told there was nothing wrong with me and that I was making it up! A couple of weeks later I went back to see the doctor and by this time I had developed the shakes really badly in my hands and I was struggling to straighten my fingers. the dr did a blood test that time but I think he did it to get rid of me! when I got my results and he continued to tell me their was nothing wrong with me. I got fed up with this and changed drs and finally got my diagnosis in May last year. I know someone who was told by her dr that fibro didn't exist!

Chloe_Scope · January 2020

Hi @shellfibro2006, how are things at the moment?

Advice on coping with Fibromyalgia

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