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AMA

I have Fibromyalgia AMA

223 replies

brightonbeautifull · 10/03/2019 21:06

Ask me anything!

OP posts:
Tinyteatime · 11/03/2019 08:22

I don’t believe she’s seen a rheumatologist or had what I would call extensive tests done to find other causes. Do you think it’s possibly ‘overdiagnosed’. I’m just think through the people I know well enough to discuss health issues and I can think of at least 7 who have a diagnosis of it, all women. That’s a lot for a serious life long debilitating condition. It’s a small sample size I know but some thing seems off. It’s way out of kilter with the prevalence of other chronic conditions.

brightonbeautifull · 11/03/2019 08:24

No not at all, I find that a bit strange tbh (sorry)! I’d rather have less symptoms than more, but of an odd competition in my eyes. One of my cousins has it much worse than me and the other is about the same as me. I also go to a support group and we definitely don’t compete.

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Walkmehome · 11/03/2019 08:26

Good point about more diagnoses in women than men. I don’t think an explanation for the difference in diagnosis can be explained by ‘it’s the way women’s brains work.’ I wonder what a doctor’s theory would be.

I do have a family member with the condition and it is very debilitating.

brightonbeautifull · 11/03/2019 08:26

If you think that it’s measured by spoons and memes that’s ridiculous and I know a lot of other conditions such as autism that have memes to raise awareness. As I said ‘spoons’ is a way we measure our energy not the illness itself.

And yes it is ask me anything, it doesn’t mean I have to agree with what you’ve said.

OP posts:
brightonbeautifull · 11/03/2019 08:27

She should definitely see a specialist, it may just be her dr palming her off. I believe we are seeing more cases because it is slowly being more understood.

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Walkmehome · 11/03/2019 08:29

What are ‘spoons’?

brightonbeautifull · 11/03/2019 08:32

It’s a way we measure our energy levels so we reserve some for things we need to do and prioritise. A normal person has many spoons we only have a few to use up.

I have Fibromyalgia AMA
OP posts:
sleepalldays · 11/03/2019 08:33

A lot of fibro symptoms can be psychological. If you're anxious/stressed you can bring on physical symptoms. I've experienced very similar symptoms but I'm diagnosed with anxiety. I used to have chronic pain and ocular migraines as well as nausea, bad sleep etc and after I started anti depressants (which I'm now off) and therapy things slowly improved.

I'm not too sure fibromyalgia actually exists. It's a large, vague, set of symptoms that when investigated individually, can have many other root causes. Many doctors are incredibly sceptical.

brightonbeautifull · 11/03/2019 08:34

We raise awareness of spoons because we have to cancel plans etc and hope it gives people an understanding of how we need to reserve our energy and how it can be spent only a few hours into a day, depending on what you’ve been doing.

OP posts:
sleepalldays · 11/03/2019 08:34

The spoon thing also doesn't help with my scepticism. Measuring in 'spoons' is not a medical term.

brightonbeautifull · 11/03/2019 08:35

It does definitely exist and there is research to prove that now, that’s why more people are getting diagnosed now because more doctors are accepting the research

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FormerlyFrikadela01 · 11/03/2019 08:35

To be fair I know a fair few people with various chronic illnesses including Fibro... fibro rather unique in the meme sense. Yes you see the occasional meme about autism or other conditions but a Fibro diagnosis does appear to coincide with a person's Facebook being entirely taken over by Fibro memes.

I don't thinking raises awareness tbh. I think it makes people look like they're determined to be victims, I too have seen the competitive symptom comparing amongst a few friends on Facebook and I can understand why it would make people be sceptical of the condition.

As it stands one of my friends has Fibro and hates all the memes and posts, she's only ever mentioned it on Facebook once... the day she had to quit her very successful career. She just said fuck Fibro.

brightonbeautifull · 11/03/2019 08:36

No it’s not, they’ve called it spoons but it can be anything you want it to be. Is there a medical (and friendly) term for units of energy? It’s for examples sake, not for medical professionals themselves.

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Mysteriousbee · 11/03/2019 08:36

I feel it’s too easily handed out as a diagnosis possibly used when blood tests come back clear and time and money pressed GPs and other doctors have run out of possible other ideas , ie depression, anxiety, rheumatoid arthritis (some doesn’t show up on blood tests), Ehlers Danlos, Hypermobility, somatic Illness, reaction to trauma, thyroid or vitamin deficiency. It’s like IBS. Too easily dished out when there could be something else that’s causing it and which could be more appropriately treated.

I was recommended a fibromyalgia support group run by the rheumatology dept at my local hospital but lasted one visit before the defeatist, spoony, my whole life is defined by this attitude made me feel irritable. I didn’t go back.

brightonbeautifull · 11/03/2019 08:38

I’ve never experienced competition with the illness, again I think that’s really strange. I don’t understand why you’d want to suffer more!

I don’t post memes myself as I personally don’t like being treated differently but one of my cousins do and I know she said it’s to raise awareness. I personally believe it could help, it could make people look into it more and to increase understanding.

OP posts:
brightonbeautifull · 11/03/2019 08:40

That’s a real shame, I’ve met some wonderful people at my support group and thankfully there are no self sympathisers. We all give each other ideas and have a WhatsApp group that we share research in. I can honestly say they are all lovely, strong women who want support not to feel sorry for themselves.

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brightonbeautifull · 11/03/2019 08:43
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Howtostopalifetimeoflearntbeha · 11/03/2019 08:44

I don't believe it's a real illness. I think it's just your depressed brain making more reasons to stay depressed.

Also that picture you just put up about spoons is bullshit. I don't have an unlimited number of spoons. What a stupid thing to think. Sometimes I have enough energy to do the basics sometimes I have lots more. Your just trying to feel sorry for yourself.

brightonbeautifull · 11/03/2019 08:48

You can think that all you want, I really couldn’t care less because I know what I’m going through and you’re not a medical professional. I also do not feel sorry for myself, I know there are people who have much more worse illnesses than me. I posted because as you can clearly see from replies people do not understand. Read the link I posted which clearly states that is is real.

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theredjellybean · 11/03/2019 08:56

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Decormad38 · 11/03/2019 08:57

Ok I will perhaps become slightly less cynical when these articles make it out of medicalnewstoday and into the BMJ.

You sound defensive op but the thing is you know the views around this condition so seriously what were you expecting?

IvanaPee · 11/03/2019 08:57

I had a doctor tell me I have developed it because of other debilitating illnesses.

I listened politely then ignored her. I’ve only ever known attention seekers to suffer with it! Not saying that’s you, just anecdotally that’s been my experience.

IvanaPee · 11/03/2019 08:58

*doctor was locum GP.

Howtostopalifetimeoflearntbeha · 11/03/2019 09:04

Exactly the people I know who have it are all drama queens who don't really seem to have much control.over their lives. They all seem to suffer from depression and make everything about themselves and everything is much much worse for them.

SIL is a GP and she says it's just a way of doctors saying shut up and have a diagnosis you moaning drama queens. She refuses to diagnose it.

I really think it's just your mind telling you your ill.

Bananasandchocolatecustard · 11/03/2019 09:05

Brighton - I was diagnosed with Fibromyalgia recently. It has taken 5 years of me suffering with joint pain, having lots of blood tests, MRI scans and ultrasound and tests for rheumatoid arthritis, plus I have Epstein-Barr.
The people who say the condition doesn’t exist can get lost. No right minded person is going to make up a condition and have their lives changed for fun!

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