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AMA

I have Fibromyalgia AMA

223 replies

brightonbeautifull · 10/03/2019 21:06

Ask me anything!

OP posts:
Tolleshunt · 11/03/2019 09:55

Wow, this thread is awful. Let's hope that none of the cynics on here who are being so dismissive/nasty ever get it. Or a MH condition, as the attitudes to that largely stink on here too. You do know that MH conditions are medical conditions, right? And that somebody choosing to describe a condition in a way that's different to how you would describe doesn't in and of itself make it therefore a made-up condition?

Way to support somebody who's ill and suffering.

Bigonesmallone3 · 11/03/2019 09:55

Do you think that anyone can be diagnosed with fibromyalgia if they chase the diagnosis enough?
As there is no definitive test to say you do or you don't have it?

I was diagnosed with Crohn's disease in 2011 and no one knows I have it as I chose not to share, I know a few people with fibro and find they talk about it a lot.

Voila212 · 11/03/2019 09:59

This reply has been deleted

Message withdrawn at poster's request.

Tinyteatime · 11/03/2019 10:00

@DaphneduM I do believe the symptoms are real for many, whether that cause is psychological or physical. However there are definitely piss takers and frauds. I know a woman who has lived on the sick for years with fibromyalgia (got it in the days before all the cuts though not sure she qualifies as disabled now). There is absolutely nothing wrong with her. It has never affected her life, she cycles round town, goes to regular festivals, dances all night, drinks plenty, has never mentioned feeling unwell except when it’s to get out of something she doesn’t want to do, like work. All her friends find it incredibly annoying. She just knew how to play the systems back in the days when you could get away with it (I’m not justifying benefits cuts at all but there were clearly a few people who did take the piss). This always lead me to be sceptical of it as an illness also. However I know a few people now diagnosed who definitely have symptoms and who aren’t attention seekers/depressive types (most are though I have to say).

Tiles · 11/03/2019 10:01

Tolleshunt

I have spent my whole life fighting depression and anxiety. A childhood filled with neglect, abuse and never being parented properly. Leading me to not quite understand the world how I should as an adult. I work my ass off everyday to be happy and calm.

Doesn't mean I have to believe in fibro.

BingLiveisRubbish · 11/03/2019 10:03

@sleepalldays I have had Fibro for years and 'Spoons' is not a medical term, no. But what it refers to very much IS real!!!!

I have to compartmentalise my life, to make sure I don't use up what strength & energy I have.

Rest. Do the hoovering. Rest. Do the laundry. Rest. Do a little bit of shopping but only 2 shops because if I 'spend' all my energy shopping, by the time it gets to 3pm my muscles will ache, I'm in pain all over and I won't be able to move for the agonising pain later on.

Portions/Spoons whatever term you want to use for spreading out your energy sensibly.

FYI - It was a Consultant Rheumatologist who used the term 'Spoons' to me Hmm

Tolleshunt · 11/03/2019 10:04

You don't have to, no, but I am surprised, given your background, that you are not more accepting of people who are suffering. And I'' never quite sure why people without medical training ever day they don't 'believe' in a diagnosis that is accepted by the medical profession.

Voila212 · 11/03/2019 10:05

This reply has been deleted

Message withdrawn at poster's request.

Tolleshunt · 11/03/2019 10:06

Do those saying they don't 'believe' in fibro also not 'believe' in back pain? After all, there isn't a week goes by without the tabloids running a story about a 'benefit cheat' who has alleged back pain and is then spotted running around like a gazelle. Does that mean there aren't any genuine back pain sufferers?

BingLiveisRubbish · 11/03/2019 10:07

@Howtostopalifetimeoflearntbeha Hahaha are you serious? Fibromyalgia is diagnosed by Rhuematologists you absolute clown! I have had it since I was a child and I'm partially wheelchair bound. A hospital in Leeds has an entire Ward dedicated to the treatment on Fibro.

Bore off. Reported!!

BingLiveisRubbish · 11/03/2019 10:09

@theredjellybean Hahaha are you serious? Fibromyalgia is diagnosed by Rhuematologists you absolute clown! I have had it since I was a child and I'm partially wheelchair bound. A hospital in Leeds has an entire Ward dedicated to the treatment on Fibro.

Bore off. Reported!!

BingLiveisRubbish · 11/03/2019 10:09

@MegaBat Hahaha are you serious? Fibromyalgia is diagnosed by Rhuematologists you absolute clown! I have had it since I was a child and I'm partially wheelchair bound. A hospital in Leeds has an entire Ward dedicated to the treatment on Fibro.

Bore off. Reported!!

WeBuiltCisCityOnSexistRoles · 11/03/2019 10:09

I agree it is an issue that there is no way it can be diagnosed formally by medical evidence (ie it won't show on scans, x rays, blood tests) as a small number of people will use it as the new "bad back". It does happen, and I say this as someone disabled and claiming PIP.

This just fucks it up for people who genuinely have medical issues as the government use it as one of their excuses to make the PIP criteria so stringent that people who should qualify, don't, and if they do they have to jump through so many bloody hoops and stress.

BingLiveisRubbish · 11/03/2019 10:11

@MegaBat @Howtostopalifetimeoflearntbeha @theredjellybean Finromyalgia has been proven to be a Neurological condition, caused by inflammation on the Brain which is now diagnosed by CT Scans. FACT

Please get your facts right before spouting hurtful rubbish

FormerlyFrikadela01 · 11/03/2019 10:12

And I'' never quite sure why people without medical training ever day they don't 'believe' in a diagnosis that is accepted by the medical profession.

There in lies the problem... to a lot of the medical profession it isn't accepted as a diagnosis. Lots of medics are just as sceptical about it as lay people.

I very much do beleive it exists and gave seen it take over my friends life. But I've also seen people who make me sceptical of their diagnosis. Prime example is one of my childhood friends who has literally never worked a day in her life and was always determined to have something wrong with her was diagnosed 5 years ago, it's literally the only thing she ever talks about and she certainly fits the stereotype of being obese, lazy and wanted someone else to fix her problems. If she was the only person I'd ever come across with Fibro then I'd probably be sceptical about it too.

QuirkyQuark · 11/03/2019 10:14

Tiny actually people with chronic illnesses are very good at faking being well.
The spoon theory was originally made up by someone with lupus who was trying to tell a friend about how they had to live their life. And yes we do have to be very careful, if I go shopping then I wouldn't be able to do any housework that day if I wanted to try and make some dinner later. I have to balance out what needs to be done with what's going to be good for me mentally. So a trip to the shops with my husband is good for me because I'm getting out of the house but if there's no clean pants left because I've not got the machine on then I won't be able to go out because laundry needs doing. My husband does help out a lot but sometimes if he has a late meeting at work then the onus falls on me to get things done.

PillBug · 11/03/2019 10:15

I was diagnosed with fibromyalgia a few years ago by a Rheumatologist. I gave up work at one point as I was so ill (and No, I was not entitled to any benefits) I am now back at the same place part time and am managing ok. I do not have pain though, just neurological symptoms and am in fact being investigated for the second time for MS (I have an abnormal brain scan)

I am afraid that I too do not really deep down believe in fibromyalgia syndrome. I really do believe that there is something physical wrong with me.

I have not told anyone at work about my problems, only DH knows so NO, I am not an attention seeker.

Tiles · 11/03/2019 10:18

Voila212
I would say it's up to them. But I really don't let it take over my life anymore. And I certainly don't let it effect other people. I had a hard time in my life, now I am free from that so that is what I focus on. The now. And the now is OK. I don't tell people in real life what I have been through, it's non of their business. I don't care saying it on here. I am behind my screen after all!

Tolleshunt · 11/03/2019 10:22

Formerly tbf, there are lots in the medical profession who fail to keep knowledge up to date about any number of conditions.

Also, non MH professionals, including Drs, are usually not very well informed about MH issues, to the extent that if a condition is affected by MH/psychology in any way (as many conditions are, not just fibro), this translates in their mind to 'must be all in the mind'. Likewise, if a test is not yet available for a condition, this translates to 'must be all in the mind', not 'that's interesting. I wonder if it's psychological, (in which case this is a real condition, how can I help with that?), or if we just don't have a test for that yet?'. Unfortunately, there can be an arrogance and an ignorance of history, e.g. the fact that MS was categorised as a psychosomatic condition until the tests became available, does not appear to change anybody's certainty that if a test can't show it currently then it isn't real.

I don't know about fibro, but for ME/CFS there IS a test that reliably distinguishes those that have it from those who don't. It's just not available here. So far I think it has only been used in research settings, in US universities.

Tiles · 11/03/2019 10:23

BingLiveisRubbish
please don't report people for disagreeing with you. Let's have a healthy debate instead. I never once said I couldn't change my mind.
If you really want to change my.mind...go ahead ..

TryItAndDieFatLass · 11/03/2019 10:24

My H was diagnosed with Fibro about 20 years ago by a Rheumatologist but hes basicvally been left to cope alone with painkillers. It doesnt help that he also has Borderline Personality Disorder for which he has also been left to cope alone (with the help of Quetiapine). He was labelled a benefit cheat where we used to live because people see him walking round the supermarket with me (leaning on the trolley and probably 1 week in 4) but dont see him unable to move for the next 24 hours. Its a horrible illness but my brother bastard asked him for all the symptoms so he could claim PIP and ESA. There are people who cheat the system and its shit for those of us left battling and fighting, going to appeal after appeal.

Madhairday · 11/03/2019 10:25

Some really heartless and ignorant posts on here. Those who are so cynical, putting it down to a 'personality type', have you thought that it is perhaps because those who shout loudest about it tend to be more like that? For every one of those there will be thousands more who are simply doing their best to get through this, in daily pain, desperate to get better and be able to work again. To then be told that they are making a fuss about a few aches and should simply get on with it simply adds so much more stress and pain to their already difficult existence. Try a bit of empathy, people! Just because you haven't experienced it doesn't mean it does not exist.

I would recommend you all watch this film - it's about an ME/CFS sufferer, but the same things have been said to her and those she interviews. It's a beautiful and bittersweet film.



I don't have fibro or ME. I have a different chronic illness - one that cannot be disputed, so it is easier for me as I don't come across people telling me I must be making it up because I am lazy or attention seeking. But I can have empathy for those suffering from something harder to understand and quantify.

The spoons theory has helped me and my loved ones understand how chronic illness and pain can affect me day to day. I've found it helpful to explain how some days I might have 20, and some days 2, and some days none, depending on symptoms. Those who don't even try to understand this are just being outright insensitive. I'm sorry OP.

As for your AMA; my question is on the basis of what I've read here, how do you cope when others say you are just being a bit pathetic and they just get on with it and so should you?
Flowers
PuddingsAreMyJam · 11/03/2019 10:25

There in lies the problem... to a lot of the medical profession it isn't accepted as a diagnosis. Lots of medics are just as sceptical about it as lay people

I agree. I know a few medical people and when fibromyalgia is mentioned, they'll all roll their eyes and say it's usually 'diagnosed' with a certain type of person to get them off their backs. Not one of them actually believes it exists.

I also agree with other posters that it's a symptom of depression and that a few of the people (not all) use it as an excuse not to get better. The constant searching for symptoms, sharing memes etc. make it an never ending cycle because it becomes their whole life. My mother has it and researching it has become her hobby. She spends hours looking for looking it up on the internet, joining self help groups and the like.

sagradafamiliar · 11/03/2019 10:29

This thread is shocking. I've been suffering from the symptoms of fibromyalgia most of my adult life but am undiagnosed. I'm the least attention-seeking person ever and won't even ask a GP outright for a referral or tests to specifically rule it out for fear of being seen as 'wanting' the diagnosis and not being taken seriously in future.
I'm not one to draw attention to myself or even make it known how much pain I'm in, but the pain is still there. After reading the prejudices on this thread, I actually hope that one day my symptoms can be pinpointed to something else. Who in their right mind would choose to be not only chronically ill, but to be met with unapologetic, sneering judgments just for speaking about it?

user1457017537 · 11/03/2019 10:30

My much loved and missed Aunt had fibro. She always said stress was a killer and she had had an enormous amount of stress as a young woman. Multiple miscarriages in the 60s when starting at 19 until early 20s. Family drama and tension, she basically cared too much for the children in the family who were not being cared for adequately.
Her health problems started in her early 40s.

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