What is it

[Denisthemenace16]

What is fibromyalgia really like, I’ve read about it and I think I might have it

[desquinn Partner Volunteer FMAUK Trustee]

have a look at fmauk.org/publications and read the info there and then see if it reflects what you are going through

[thespianglobe]

It is a disease of mystery and confusion which sounds romantic but it isn't, its the original pain in the neck! There are many weird symptoms so I would start some online research but the main one is constant pain. It is difficult to diagnose and treatment is not great so the main thing is to manage symptoms. As time has gone on you learn what your body responds to so I am just off for a hot shower which will hopefully cure my early morning neck and head pains. Some people are lucky with their GP but mine has shown little understanding or interest so treatment is a bit of a battle.

[BButt in reply to thespianglobe]

Hi ThespianGlobe, I love your original 'pain in the neck' description, I believe you are right as it is literally (well nearly) what 'myalgic encephalomyelitis' translates to.

[SaikiK]

Hi Denisthemenace16,

Fibromyalgia is a disease that is incurable (at the moment) and the origin is unknown. I have fibro and I would say that its brought on by a mixture of; stress(physical or mental), depression, trauma, weak immune system or other under lying health problems. I think that it might be partly hereditary, for my case.

My family has a long history of mental health and physical ailments that have just seemed to bottlenecked into me.

I also think that your environment plays a part in it too.

Fibro is awful because it appears to be hidden, as in you can look fine but still be in tremendous pain. A lot of people still don't know about it which makes it hard to talk to people about.

It leaves you exhausted, there are bouts of insomnia and flare ups. Flare ups are when all your joints and muscles become inflamed and it makes it very painful and difficult to move around.

There are also nerve pains that cause spasms or shaking. These symptoms might not happen to everyone, I'm just speaking from my own experience.

I also get very bad headaches and stomach aches, or IBS. I can get acid reflux which is nasty and very annoying.

Some days I will be ok other times my energy is completely drained which makes doing household tasks difficult. I find walking very difficult and I absolutely can't run or jump. This is extremely frustrating because I used to be very athletic, cycling to work and going to the gym and endurance running.

The acceptance is something I'm still dealing with, I want to be able to do what I used to but I just can't. I am disabled. Even if I walk to local amenities I struggle and I take a few days to recover.

Frustration turns to anger and anger turns to depression. So its very important to find your limits and get to know yourself in a different way. The constant pain is also depressing, talking about it, getting therapy and medication can help.

There is also something called fibro fog, essentially its a break in concentration or a momentary/continual lapse of cognitive function mainly due to lack of sleep. This makes everything very hard to focus on, such as reading or following simple instructions.

Other symptoms I've experienced are; a heightened sense of smell, restless leg syndrome, sensitive skin, loss of balance and hand-eye coordination.

Fibro is a long haul fight and I empathise with everyone going through it.

Speak to your doctor if you think you share any of these symptoms and good luck.

[BButt in reply to SaikiK]

What a great description SaikiK.

[JayCeon]

Perhaps having a look at the criteria will help you sort it out. They aren't a full description, and a patient's version. So to make sure you could fill it in and take it to a doc and ask. Whether you have it or not, you need to get tested for many similar things you might (also) have. fmauk.org/files/acr2016Fibr...