Fibromyalgia - be honest.

[Hellovation]

I think I’m going to be diagnosed with fibromyalgia.

I had never heard of it, until the neurologist and GP both mentioned it.

Having now mentioned this to a few people and their reaction leaving me confused, some internet searches lead me to believe it is widely believed to be a non diagnosis and simply something in one’s head or a ‘lazy diagnosis’ because doctors are at a loss.

I was heartened to think I might have a diagnosis and understanding and way forward to get better and live my life but now I feel so sad.

Be absolutely honest- what do you think of fibromyalgia?

Your post is eloquently put - thanks for a measured response.

I value what you are saying, and you come across as realistic and level headed.

I'm probably not wording it great. I'll try and keep it succinct: I am just pointing out the 'typical' demographic (this isn't my thoughts, it's just the information I found researched by others) I do accept that not everyone will fit that criteria.

I can't stress enough that I do believe the symptoms suffered. I just think that fibromyalgia can be a cop out diagnosis for medical professionals. If I go on, I'll repeat most of what I've already said. I believe there is harm in a 'functional syndrome ' diagnosis. If you look out 'pysch out cognitive bias' it's a very real phenomena where clinicians are swayed by diagnoses such as mental health conditons or fibromyalgia/CFS and are less likely to investigate future ailments.

I do believe there is often a pre existing depression or mental health/trauma background to women who are diagnosed with fibromyalgia. Mental illness and trauma are terrible sufferings, I'm not surprised they manifest into physical pain.

I mean you or others no harm. I understand it can be frustrating and insulting to feel belittled or questioned on a diagnosis you have. That isn't the intention. I was blunt and a little harsher in some earlier posts as one particular poster was being quite aggressive and hostile towards me and others.

Also, maybe other people have, but I haven't ever commented or assumed people diagnosed with fibromyalgia are looking to claim benefits or do it for the benefits - that would be cruel.

I do however believe it's as easy syndrome to pick for those wishing to abuse the benefits system, because of the lack of diagnostic certainty via tests. The same way anxiety and depression are (I've suffered once in my life with both to a level where everything looked very black Indeed) but I can still recognise people use it to fiddle the system.

But you have made several comments across this thread belittling symptoms (“what is severe fatigue anyway, we are ALL tired from busy lives while some who are lazy stay in bed all day and then claim they are tired”), questioning people’s diagnosis’ (“why are you up at midnight if you are fatigued”) and then ignored any evidence screenshot I’ve presented. Not sure why you’re backtracking now 🤷🏼‍♀️

If you read back that particular posters comments - I think you'll find they were in retaliation (probably not the wisest choice, granted) but her posts were extremely rude, aggressive, goady and childish and I'm afraid I could only keep my decorum for so long ! Just have a read back! You can't make out I just came out with those things as my initial statement that's unfair

The comments about fatigue were in direct response to me?

I can imagine it’s an easy illness to fake, if you’re a faker.
It’s also an easy illness to assume is faked, especially if you don’t understand how people end up trapped in a cycle of helplessness.

There’s some interesting research about the poor decisions made by people living in poverty. Surprise surprise, people’s math skills tank when they are very stressed. The time you most need to be savvy about maths, you lose the skill and end up making expensive choices.

There are selfish, lazy greedy people out there. And there are a lot of people doing their best under multiple stressors that mean their best just isn’t that great- and they are more likely to get ill than other people, so show up more often in the stats.

I think at some point some mechanism will be discovered behind fibro, that will hopefully make for more effective treatments. I don’t need it to back up my honesty. I’m lucky. Anyone who knew me before saw me really active in my community, going above and beyond, doing all sorts of outgoing, productive stuff that I wasn’t obliged to do. No one who knew me then would be in any doubt that I would still be doing it if I possibly could. Life is much smaller now.

But that’s ok. I find contentment closer to home, and am learning to put myself first and that’s a new skill!

Thank you ☺️

Don't you understand that it's attitudes like yours that push people with Fibromyalgia into unhelpful "support" groups. It's the only place they are believed and other people understand what they are going through. It's such a relief at first but it becomes very insular and because it's the only place they get validation and feel part of something a "family" even, their disability becomes their identity and they desperately want to hang on to it. Anyone looking to do anything positive to help like healthy eating are shot down and ostracised.

It has to start with societies attitude. People need healthy validation, not statistics, the potential for benefit fraud or judgement.

You're part of the problem. Please think before you share your opinion.

I'm allowed an opinion. I haven't worded it offensively. If you don't like that opinion, I'm sorry. But the poster did ask for honest opinions and I gave mine.

As I keep saying and you keep conveniently ignoring - you absolutely have been offensive throughout this thread so please don’t try to convince yourself and others that you haven’t. Your initial opinion may not have been offensive - unkind, unsympathetic but not offensive, your follow up comments that you were “goaded” into making were definitely offensive and showed exactly how you feel about those with Fibro and ME.

The reason I stopped responding to you is you've become like a dog with a bone. It has gone round in circles now.

You are determined to make my opinion this : " I think everyone with fibromyalgia is a lazy benefit scrounging mental case who I hate and think deserve shitty healthcare"

I've explained again and again and again my opinion, which is not the opinion you want me to have.

Yes,I hold my hands up! I dropped the decorum and became reactive to certain antagonist goady posts! I've already admitted that. I'm not a saint!

If I had the opinion you think I do, I would do as others have, and just come out with a one liner admitting it (why wouldn't I? It's an anonymous forum ! It'd be incredibly easy to do !)

I suggest you accept my opinion (I'm allowed it) accept you find it offensive and disagree with it (that's also allowed) but the repeated dissecting my every post to try to make me out to be something I'm not is tiresome now.

Same thing happened to me, i had head to toe pain in 2019 and i was diagnosed with fibro. I'm now pain free in 2025. The root of fibro is stress. Once i got rid of the stress, got onto a plant based diet, took a bit of steroids and holidayed in the sun, the fibro slowly disappeared and now it's gone!

"you're part of the problem. Please think before you share your opinion"

That attitude is part of today's society's problem. Any differing opinion being unable to be spoken, lest it offended someone.

It's unhealthy

I think you may have mixed me up with another poster as I didn’t mention benefits to you - I am not determined to make you out to look like anything, I’m picking things that you have said regardless of the reasons why you said them. I have the posts screenshotted so I can refer to and ensure I have NOT misrepresented what you said. I DO appreciate you admit you should not have said these comments but that doesn’t change the fact you did say them therefore you can’t play the “I haven’t been offensive” card because you definitely have.

My main issue was that you would make claims that I then disapproved (typical age of fibro patients, if you have fatigue why are you up at midnight) and then when I showed evidence from the NHS website, you ignored it while simultaneously demanding evidence from everyone else and asking them to do their research 🤯

I accept that you are entitled to have your opinion, I am entitled to not respect that opinion. I am also entitled to continue to dissect your posts to show hypocrisy as I see it. Thanks for the suggestion though 🙂

I think the distinction between physical and mental health conditions is a bit arbitrary and pointless.

Take something like PTSD, and something like Parkinson’s. Obviously very different things, but both can be treated with drugs that alter brain chemistry, both cause physical and mental symptoms, both show structural changes to the brain in an MRI. But you’d never suggest Parkinson’s was a mental health condition, nor would anyone dispute that PTSD was. Is the difference simply because PTSD can also be helped with talking therapies? Despite physical changes to the brain structure? And despite the fact that talking therapies can also be helpful for physical health conditions as well?

Or do we just define mental illness by whether or not we (society in general) have a general idea that someone should just buck up? Is that why people get offended at the suggestion that fibro may have a mental health element?

I think as a society we need to remember the idea of "convalescence". It used to be that after being ill, people were expected to convalesce for weeks afterwards. Eating nourishing food, resting as much as possible. There was even a time when people would be sent to sanitariums in the sun and fresh air for months after serious illnesses such as tuberculosis.

Nowadays if we have a serious bout of flu, as soon as the main symptoms are gone we're expected to hit the ground running at 100%. No wonder so many people then never fully recover.

I never once demanded posters need to research.

I stated a quick Google would show the demographic I'd suggested. That's not the same as demanding people look at research articles and sending links to them.

Also, you keep harking back to the midnight comment. That poster was shouting people down, calling names, using offensive language like a dog with a bone ! So it was a tongue in cheek retort "you're so fatigued that you're up until midnight ranting at people online" it was a quip! I've already admitted I stooped - imho, she bloody well asked for it!

I'm not responding further as I've already explained myself numerous times and this back and forth has become very circular

A quick google leads you to the NHS website states the typical age range for fibro patients/diagnosis is 25-55 which isn’t exactly what you say is the typical demographic.

This is actually so interesting and I’ve never even considered this before!

I think when people hear it might be connected with mental health what they actually hear is " it's all in your head" so not real.

There is so much we still don't understand about the body. Trauma, poor mental health and poor nutrition can all trigger autoimmune diseases for example and there's so much new research about microbiome and mitochondria.

Statistics dont lie but some people use statistics as a drunk uses a lamp post - support, not illumination.

Now that the research on mice has shown this is likely to be an immune problem someone could be able to develop a diagnostic marker and weed out the few fakes. Then perhaps the condition will be taken more seriously and there will be work on treatment. But since it affects more women than men dont hold your breath!

Until then it is worth trying a TENS machine, and looking at other suggestions that may make the pain less severe.

Reading this made me feel like crying because its kind and supportive after all the people on here minimising and denying and telling us it's in our heads. I got sick at 19, healthy, active, slim, did great at school was breezing through university. I've been in pain every single moment since, over 25 years of pain, every single moment. Morphine, fentanyl, amitriptyline, LDN, ketamine among a long of medications do nothing, don't even take the edge off. My pain is untreatable, nothing works, I've had specialist doctors apologise because they cant help me, because my pain is untreatable. A good day now my pains an 8/10. There haven't been many good days in the last 2 years. There is so much nastiness and contempt in this world for people who are sick, kindness is much rarer. It's easier to attack what we don't know then to consider it with empathy and try to understand. I'm sure most off these people think they're good people, but what they're doing is a lot of harm to those who have already been knocked down.

@EliflurtleAndTheInfiniteMadness Gosh, I'm so sorry to hear that you've been in so much pain for so long. Pain is miserable, demoralising, demotivating, depressing and frightening. ,💐

I was diagnosed in my early fifties. My diagnosis followed a divorce, shingles and then a frozen shoulder. My GP said that the previous stress and trauma might have triggered the fibromyalgia.
The best advice he gave me was to never do physical work until I’m 100% tired. To stop before I get tired. Obviously, life isn’t perfect so there have been many times when I’ve had to push myself too much. I’ve always paid the price, and had to rest more after these times.
I won’t let it define me, I have fibromyalgia, it doesn’t have me. CBD cream helps, diclofenic for flare ups, and gentle yoga.

Focus on pain management, not the label is my advice. I’m much better in the summer months, heat is very soothing.

Exactly, the fibro happened because of extreme mental and emotional stress. This is what happened to me. Nothing about fibro is made up. The pains took some time to go, it went gradually over a 2 year period after the stress was gone

I was diagnosed with Fibromyalgia 15 yrs ago. Had never heard of it before. It's changed my life so much, used to be so active, now sometimes it's hard to get out of bed and get dressed. I am sick of people who don't believe it's real. Live in my body when I'm having a flare, or any other day. Pain and fatigue, not just tiredness. Totally fed up with it, death can't come soon enough.