Fibromyalgia

[MrsDylanBlue]

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.

TIA

Forgot to add the sudden onset of complete all encompassing exhaustion.

I have no doubt it exists but it is hijacked by a lot of less than genuine people/ attention seekers.
I’ll never forget when two people the where supposed “fibromyalgia sufferers” bumped into each other and started competing with each other. One decided to collapse after a rather basic test. The other started saying she was collapsing. They were blatantly competing with each other.

Jamiefraserskilt this. It's hard but at the same time you'd be going like "oh, but look at someone with MS or cancer or some other degenerative disease, aren't you lucky, all things considering."
But you don't feel like you won the lotto, especially when the main prize is a chronic pain and oversensitivity and fatigue for years to come.

I have fibromyalgia and I work. I am self employed so to some extent can adjust my workload to fit with the severity of symptoms. I work between 20 and 30 hours a week. I would really struggle to work a standard 35 to 40 hour week. When things are bad, I can spend all of Friday, Saturday and Sunday afternoons and evenings in bed, mostly sleeping to catch up with energy!

Bodicea, all you have to do to check with most is to grab them by their elbow. Not sure if all fibro sufferers but most would have the three pain points straight there, at the elbow.
And second, you don't really brag about it. It's nothing worth of a pissing contest.

Not the elbow go for the upper arm or bump your knee into their outer thigh. They'll physically recoil and/or yelp

One thing new research has found is that people with Fibromyalgia have many more pain nerve endings than normal which again will likely be contributing to the increased pain levels.

I too have Ehlers-Danlos Syndrome and what I deem secondary Fibromyalgia. (Diagnosed, but I mean I see it secondary to the EDS). I have had no physical trauma as someone mentioned above, but I have had long-term chronic pain from the EDS and I think after a long time my brain doesn't know how to deal with and the pathways get so worn the pain signal fires when it shouldn't.

I have a lot of Allodynia, which is when your body gives a pain response to something it shouldn't - for me things like clothing, labels, or even an unexpected touch causes physical pain. I also have hyperalgesia, where I feel more pain that should be normal. I.e. if I bump myself it will throb for hours. Both these things are very common with Fibromyalgia and chronic pain conditions.

More women do have it than men, but it may be to do with structures of the body. For example Ehlers-Danlos Syndrome is 50-50 between men and women but women tend to have it a lot worse due to structural differences in the body.

I also think a lot of people are diagnosed with it who actually have an underlying cause, but many doctors will just stop there instead of digging deeper.

The fatigue is utterly crippling. It's NOT tiredness, it's like needing to sit for an hour to try and get just the mental energy to think about getting up to get a drink.

A good thing for all able-bodied people to read is The Spoon Theory. It's one way of explaining what it's like living with low energy.

butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

When it comes to pain it's really funny because it can come and go even though it will always stay with you.
As I am typing, my fingers are really hurting like hell. I have to stretch them from time to time to stop them from cramping. I also can't sleep with my fingers curved, they need to be straight, otherwise it hurts.
My ears are really hurting because I'm sensitive to even slight breeze. My knees and feet are hurting, just because I tried being active the last few days and went for a short run and walks. I am tired but I would wake up at 1 and then go back to sleep at 3 and wake up at 5.30 again and can't fall asleep again.
My back is hurting just for the sake of it right now too. And I almost forgot what I wrote at the beginning so I know I need to get some rest soon.

Can you get DLA?

Sorry Bumpowder I wasn't more precise in my description.
For me it wouldn't be directly the elbow but the area just above it, from the outer side. Hard to describe but when the rheumatologist was examining me, he touched that part of my arm and I almost hit the roof.

For me the overlapping of symptoms with other conditions can be a complicating factor when consulting the GP about a new medical problem. When the doctor probes and pokes I inevitably recoil with pain as she/he hits one of my numerous trigger points. Having my blood pressure taken is extraordinarily painful and results in gasping with pain to the point of tears. Being an “ invisible” condition it means that sufferers are more often than not regarded as lazy. I’ve had FM since my teens - 60 odd years, and have always envied the energy most other people have. I have had very demanding careers and have coped by resting up when not working and by having what I call “ mental health days” when I have run myself into the ground.
I have tried many, many so-called cures and not one has been of demonstrable help. I take anti-depressants just to enable me to live but they don’t help physically. New supplements etc specifically for FM are prompted on a regular basis but they are invariably expensive. I read the reviews and disappointingly most reviewers report little or no relief.

MrsDylanBlue.....Fibro has been recognised as a "proper" disability in the last few weeks, so yes, an application for PIP is viable.
I wont be claiming anything yet as I feel still in early stages of it atm.
Compared to loads of people I'm a picture of health! Its a comfort to know though, that when the need arises, there is help available

Where the tendon joins the joint but more up the arm? Yeah that's the spot!

It is not really one condition- it just means chronic (long-term), distributed pain.

It is a diagnosis of exclusion so only diagnosed once no other conditions are found.

Can you get DLA?
It depends on the severity of symptoms, I imagine. Some people are really bad and the level of their pain is so high they can't work. Also the fatigue can be crippling.
I never tried and I won't as long as I can live a relatively normal life. I guess it would feel like I lost the war with the bitch if I give up but if the symptoms are really bad, I wouldn't have a choice I can imagine. I feel very sorry for the people who had to go on disability with that, especially as they must have gone through some really humiliating examinations and proofs that they were really sick.

The Spoon Theory is quite useful for describing how Fibro can effect you... although Christine has Lupus I can really relate to what she has written

butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

There is also this; A Letter From Fibromyalgia

healthunlocked.com/fibromyalgia-action-uk/posts/222137/a-letter-from-fibromyalgia..........

If I woke up and wasn't in pain I'd think I was dead!

Where the tendon joins the joint but more up the arm?

Fibrobingo!!! I felt like punching him in the face if it weren't for the fact that he just had his diagnosis confirmed.

Its not about bragging. They were both attention seeking and didn’t like that the other was receiving more attention than them.

Like I said does exist and there are genuine sufferers, but it’s an easy condition for an attention seeker to hijack.

Bodicea the idea that chronic disease sufferers are some noble martyrs is of course total bollocks.
You get pricks everywhere. Pricks can get sick just like good people.
I certainly wouldn't be competing for attention with anyone else suffering from the condition. I am a control freak by nature and the idea that I am losing control over my body and it's making this weird stuff with me is extremely annoying. I think it's also probably the only thing that keeps me going sometimes.

If I woke up and wasn't in pain I'd think I was dead!

Same here . It's such a part of your life, being without pain has become a thing of distant past. Being able to listen to your child squeaking a loud song without feeling like someone's slicing your brain with a dull knife is in the past too. The almost never ending amount of energy that was enough to get you through the day. Oh, past sweet past.

Someone asked me the other day if could get a blue badge?
I responded that I can walk 100 yards so no.
She said, today you can walk 100 yards but what about yesterday and tomorrow?
She is right. Some days I can walk or stand for longer than others. 100 yards is a long way when your balance is shot and your legs decide to go on strike.
This week has been a bitch. Showering in the morning has whacked me out let alone putting on a full day's work and then being there for the kids.
Tomorrow may be a good day, who knows?
The hardest thing is that if you are well one day and using a stick the next, people just don't get it and accuse you of putting it on.
Let me tell you, I would rather have my life back the way it was, thanks all the same.

I actually thought when I read your post that this was going to turn into a fibromyalgia bashing, so relieved that it's not. Unfortunately a lot of people mock it and some professionals don't believe it.I have fibromyalgia and to be honest it has taken over my whole life. The pain and tiredness is totally draining. Even going around my local supermarket will leave me with burning pain, severe shooting pain,spasms and aching limbs. I usually have to lie down afterwards. There are days I wake up so exhausted and weak that I feel like I have just woken from a coma. Then there are days I feel normal for a few hours and it only reminds me of what I have lost. Simple things like climbing the stairs can be a feat. It's a horrible disease that is often dismissed because there is no blood test or scan that shows it.

Thanks for helping me to understand this.

I am sorry, it sounds fucking shit, I will use this thread to improve my working practises in and to defend you to the eye rollers.

Ha I am in the process of trying to get Pip, because I managed to raise my arms in the assessment i got knocked back. Dispute letters from my consultant and GP detailing the pain I am in

MrsDylanBlue thank you.
TBH, I would prefer if the eye rollers were right and there were no fibromyalgia. Sadly it's a real condition and as I have already said, the issue with it is that it can vary, it can hit the sufferers differently, flare up and calm down or get even worse so it's very difficult to do anything about it.
I personally believe for me it were my frequent infections and then the encephalitis that triggered it but I certainly believe it's in the family too. I hope my DD will never get it.
Being curled up in a foetal position and screaming because a sharp sound triggered a complete meltdown in your brain is nothing to be happy about. It's real though and it's nothing to do with hysterics or just hypersensitivity.
As a fibro sufferer I learned to understand people with a wide range of health issues as the illness itself has such a wide impact on your body. It's a proper mean bitch.