We are all on our own journey - Fibromyalgia Acti...

Fibromyalgia Action UK

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We are all on our own journey

Tootiepie profile image
6 Replies

I feel that Fibro is a term used by Dr’s and Consultants when they can’t pin down an exact cause for the pain that we all experience. They don’t fully understand it yet, although there are many research programmes that are ongoing all the time. Central nerve problems, virus, emotional, are all reasons that I have been given over the years. I tend to vary between manageable full body pain and total disablement. Both can last for several months and change on a whim. Some people benefit from exercise, in my case it only makes things worse. Some people respond well to painkillers, they do nothing for me and simply make me feel unwell. However, Duloxatine was a big NO for me, it made me very very unwell both physically and mentally - not that it does that to everyone who uses it. Personally my Fibro responds better with Cipralex and Cipramol anti depressants. I feel that we are all different but are all joined by the hope that our futures may be brighter. I hope that you find your ‘suitable help’ it may take time, but don’t give up hope. The hardest emotion to deal with is when someone - especially your Dr does not believe that Fibro exists. I suggest changing your Dr until you find one that fully supports you in your quest to find the right medication that may make a difference.

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Tootiepie
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6 Replies
desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

I could agree that "some" doctors may think like this but it is not the case. At least the research from the last 50 plus years does not support it being a waste bin diagnosis. But it is complex and hard to deal with / treat.

Agree that your relationship with a doctor should be a partnership and working together to find what works for you.

Dizzytwo profile image
Dizzytwo

Hi there, I was wondering how you got on with the Mickle Therapy. Did you find it helpful at all 😊

Tootiepie profile image
Tootiepie in reply toDizzytwo

I’m afraid that despite two attempts to get a proper meeting - one face to face with the originator of Mickle Therapy I am still waiting for an appointment. It could be Covid related !?

Mathex profile image
Mathex

Hi. I am the same when it comes to exercise, even a simple walk to the shops am guaranteed to be writhing and rolling around in pain few hours later ...

Tootiepie profile image
Tootiepie in reply toMathex

I’m so sorry to hear that. My own experience has been anti depressants helping ??????? I’ve no idea why ????? But cipramol and cipralex have eased my condition to a tolerable level - after living with Fibro for 20 years with a variety of levels of manageable and unmanageable periods. It may be worth looking at. I know we are all different and our conditions vary greatly but I never thought for a minute that an anti depressants could help the brain respond to pain ?????

justharry76 profile image
justharry76

There are probably a lot of symptoms people with fibro get that are treatable and not directly the result of fibro. I think they just get fed up listening to you.

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