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(234 Posts)
MrsDylanBlue Wed 23-May-18 22:00:21

A lot of my FB friends have this and a lot of families I work with.

Is it a new (ish) illness and if not what was it beforehand.

Do we know what causes it.


Clandestino Wed 23-May-18 22:03:08

I suggest you read up what's available. As far as I know, there are multiple causes, immunity issues, genetical predisposition (it appears to run in the families) etc.
And it's an old mean bitch to live with.

MrsDylanBlue Wed 23-May-18 22:04:48

There seems to be an explosion of it and I just wondered why - is it similar to ME?

GreatDuckCookery Wed 23-May-18 22:06:40

I don't think it's new, it's just got a name now. I've been feeling like this for about 20 years but only in recent years been given a diagnosis of fibro.

Domino20 Wed 23-May-18 22:07:15

I've been diagnosed with it several years ago. Tbh I think it's a catch all term for 'we have no idea why your body is in constant pain'. It's absolutely shit and just as I think there's no joints left in my body for it to progress to, it finds somewhere else to go. No, no-one knows what causes it but (very unscientifically) I've come to think it's more prevalent in people who have had some kind of painful physical trauma in the past.

BumpowderSneezeonAndSnot Wed 23-May-18 22:07:33

It used to be called rheumatism back in the day.

The reason more people are being diagnosed is because treatments are now available for it

hormonallyspeaking Wed 23-May-18 22:07:38

It's not new but it's also really not understood. From what I understand it all used to be lumped together with chronic fatigue syndrome/ME. They separated out and now if chronic pain is the biggest issue you're diagnosed with fibromyalgia where as if fatigue is a bigger issue you're given a diagnosis of CFS/ME.

Fibromyalgia is often triggered by trauma, infections, anything that can overwhelm the brain and send the body into meltdown.

If you have any questions about it, I can try my best to answer them. 5 years on from diagnosis and I still hate the condition but love talking to people about it.

SuperLoudPoppingAction Wed 23-May-18 22:08:21

Lots of info in the comic linked here

Clandestino Wed 23-May-18 22:08:46

MrsDylanBlue - there's no explosion, it's been simply only recognised as a diagnosis a short while ago but it's been here for millennia.
It's because it's such a wide range of symptoms which are really difficult to pin point and put together as a part of a one thing.

MrsDylanBlue Wed 23-May-18 22:08:53

Is it like sciatic pain?

BumpowderSneezeonAndSnot Wed 23-May-18 22:09:26

For me it's like living with the flu. Heavy lethargic sluggish painful achey

MrsDylanBlue Wed 23-May-18 22:10:48

Like being on interferon sounds like.

BumpowderSneezeonAndSnot Wed 23-May-18 22:11:48

No idea what that's like.

I forgot to add the ibs, migraines and fuggy brain too

Clandestino Wed 23-May-18 22:12:09

MrsDylanBlue it's different kind of pains. It can also be anywhere in your body. Persistent but can be flare ups and then calm down a bit. Mental health issues are a part of it so anxiety, depression, suicidal thoughts ....
The bitch is that you have to learn with it because it's not something that gets progressively worse to the point where you die. It wears you down physically and mentally though.

Domino20 Wed 23-May-18 22:12:23

No, nothing like sciatica.

Domino20 Wed 23-May-18 22:15:53

Imagine you were using small dumb bells to do reps and you'd lifted the weight 100 times. The ache and exhaustion that you'd feel in your arms from that, except you've only picked up a cup of tea.

MrsDylanBlue Wed 23-May-18 22:16:26

Interferon is like having the flu, mind fog, tired but no appetite.

Sorry am just trying to get a sense of what it feels like - seeks to be more women than men?

smurfy2015 Wed 23-May-18 22:16:43

a copy and paste where the info was last updated July 2013

Fibromyalgia syndrome is a widespread chronic pain condition. There are specific points of tenderness along with sleep disturbances, headaches, cognitive problems, fatigue etc.

The condition has been known to mankind since the 1800’s when physicians wrote about a condition that leads to pain, fatigue and disturbed sleep. They called it muscular rheumatism and found no joint involvement.

Fibromyalgia timeline

It was in 1824, a physician in Edinburgh described tender points.

In 1880 a psychiatrist in the United States wrote about a group of symptoms including widespread pain, fatigue and psychological problems. He called it neurasthenia and believed it to be the result of stress.

Next in 1904, Sir William Gowers introduced the term fibrositis. It meant inflammation of the fibre. He described the tender or sore points among patients with muscular rheumatism of earlier times. It has also been called chronic rheumatism and myalgia since then.

In 1913 in the British Medical Journal, a physician by the name of Luff wrote about the symptoms of fibrositis. He found that the symptoms worsened as air pressure fell and as rains came on. This is a common phenomenon even today. Luff spoke about temperature variations, fevers and motor accidents as well.

In 1987 fibromyalgia was first recognized by the American Medical Association (AMA) as a defined disease entity and cause of illness and disability. As there was no evidence of inflammation, the term fibrositis fell off and in 1976 the term fibromyalgia that meant pain in the fibres and muscles replaced fibrositis.

The disease was described clearly by Smythe in 1972 with the descriptions of the widespread pain and tender points.

In 1975 the first sleep electroencephalogram study was performed.

An article on fibromyalgia appeared in the Journal of the American Medical Association (JAMA) in 1987, written by a physician named Goldenberg.

The connection between fibromyalgia and other similar conditions was proposed in 1984.

In 1990 the first American College of Rheumatology criteria were published.

In 1986 the antidepressants that raised brain levels of serotonin and/or nor-epinephrine were found to be effective in treatment of fibromyalgia.

The diagnosis of this condition is still taken sceptically and many physicians believe fibromyalgia to be a fad disease due to lack of X ray or imaging as well as blood test evidence regarding the disease.

Fascinate Wed 23-May-18 22:18:18

It's not new, and it was called something else before. Improved differential diagnosis has raised the number of known cases. Seems to affect women 6 out of every 7 cases. The definition and recommended treatment seems to get updated very often. The cause appears to be partially genetic, and may be linked to some form of serotonin disorder.

As a sufferer, I can only say that the randomness of the condition is really depressing. You wake up every day not knowing which bit/how much of you is going to hurt. I ignored pneumonia for 3 weeks before going to the doctor, because I assumed the pain was caused by the fibro. Other symptoms include freezing under 3 layers and a duvet in 28 degree heat, conversely clearing 4 inches of snow off the car in t shirt and leggings. Symptoms vary immensely between sufferers, and also from day to day for an individual patient. The most important thing is to manage the energy levels, plan ahead and don't try to push through as an extra hour doing a task can result in days just crashed out in bed.

BumpowderSneezeonAndSnot Wed 23-May-18 22:19:07

It's horrible. Lots of drugs now help but increase the appetite (antidepressants at low doses and antiepileptics at fair doses). CBT is also a recommended treatment.

The worst bit is the psychological battle. Knowing this won't get better other than periods of remission which is why psychotherapy helps.

CrochetBelle Wed 23-May-18 22:21:27

It is definitely overdiagnosed. Fibromyalgia is a syndrome, supposed to be a diagnosis of exclusion. I know many people diagnosed with fibromylagia who have not even had investigations to rule out other possibilities.

MrsDylanBlue Wed 23-May-18 22:22:38

How is is diagnosed?

Pebblespony Wed 23-May-18 22:22:44

This thread has really opened my eyes. I must admit I was slightly dismissive of this condition as the only person I knew with it was a really horrible bully of a colleague and it kind of clouded my opinion of it. I'm sorry to have held this view.

Clandestino Wed 23-May-18 22:23:36

No, it's not like having a flu. It's worse. And can be better. And you can get sharp pain and then it gets dull again. And something else starts hurting.
Also, you don't get depression and anxiety attacks with the flu just because it's flu. Genuine suicidal thoughts where you understand how someone can walk in front of a passing train and feel nothing, just emptiness and a fleeting sense of a final relief. Sometimes a sound or noise can trigger an anxiety attack and feel like someone's slicing your brain to pieces.
It's a weird diagnosis and it hasn't been taken seriously for many years. But if you go through every fucking blood test under the sun, x-rays, mris, cts and nothing comes up to pin point an issue while you still know that your fingers and whatever else are hurting like hell and when someone touches you it feels like they have hammers instead of fingers, you know that something is wrong.

BumpowderSneezeonAndSnot Wed 23-May-18 22:24:17

By a rheumatologist after ruling everything out such as arthritis, neurological disorders and general injuries.

I have ehlers danlos syndrome and was diagnosed with both at the same time. It's a common thing to happen.

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