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Original poster

Fibromyalgia - be honest.

651 replies

Hellovation · 19/03/2025 21:16

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?

OP posts:
Thread gallery
14
octopusenergyfree50 · 20/03/2025 04:29

Bathnet · 19/03/2025 21:42

My honest opinion is that it’s a diagnosis given to people whose poor mental health manifests itself in physical symptoms. I think it’s a predominantly psychosomatic condition. I wouldn’t ordinarily say this directly to someone but you seem to want honesty

@Bathnet I was the happiest I've ever been when I got fibro so that really isn't right. It was numerous surgeries for endometriosis and resulting chronic nerve pain that caused it for me. There's a very well known link between Endo and fibromyalgia but u suppose my insides being stuck together is all in my head as well.
Maybe refrain from judging what you clearly don't understand

octopusenergyfree50 · 20/03/2025 04:34

sometimes wonder if the distraction of work, children etc would help them focus on something else.

@Werthering there are plenty of people out there with fibromyalgia who have children and they still have fibromyalgia. Plenty of people work or did work when it first started. You can't distract away a chronic illness which the recent research says is autoimmune. If only it was that easy

octopusenergyfree50 · 20/03/2025 04:43

@Hhoudini it becomes all encompassing because you are in constant agony, feel like you have been run over by a bus, can't sleep, complete exhaustion, the list goes on. You then have to fight for treatment, benefits etc and the attitude from most people that you are exaggerating/not determined enough/not trying hard enough etc it's shit and I wouldn't wish it in anyone.

The point about pain signals is correct, there's research proving this but no one wants to hear that.

I never would have believed something could take over my life like this and there is no medical help apart from pain meds

There may not be a test at the moment but people used to say the same about MS until the tests became available. Believe me it is very real.

Interested in this thread?

Then you might like threads about this subject:

General health
octopusenergyfree50 · 20/03/2025 04:45

MargueriteInBloom · 19/03/2025 21:54

You’ll find two groups of people

  • those who know fuck all about fibro, think they know just because. Usually completely outdated ideas that puts it into the ‘it’s all in your head’ category.
  • those who are more educated. Maybe they’ve read research papers and they know it is all but in your head.

For those who have doubts, here is a paper showing how mice receiving blood from fibro patients develop fibro symptoms.
Here

@Hellovation it’s not all in your head. You’re not making it up. And it’s a proper diagnosis.

Edited

Well said !

octopusenergyfree50 · 20/03/2025 04:46

Hohofortherobbers · 19/03/2025 21:56

The only person I know with it is about 25 stone. That has to contribute to the symptoms.

Omg there are thin people with fibro, I was thinking when it started!

MumChp · 20/03/2025 04:47

octopusenergyfree50 · 20/03/2025 04:34

sometimes wonder if the distraction of work, children etc would help them focus on something else.

@Werthering there are plenty of people out there with fibromyalgia who have children and they still have fibromyalgia. Plenty of people work or did work when it first started. You can't distract away a chronic illness which the recent research says is autoimmune. If only it was that easy

Lots of people suffering badly of fibromyalgia are married, have work and children. Why shouldn't they?

octopusenergyfree50 · 20/03/2025 04:48

Booboobagins · 19/03/2025 21:57

Fybromyalgia is considered to be linked directly to trauma. Do you know what trauma caused it in you?

My SD has fibromyalgia. She is in constant pain and it can be really debilitating. Try taking hemp based cbd oil to help. Try to find the cause of the trauma to address it head on. It is not in your head, it is real. However unlike many other conditions, you may be able to heal it given the right support.

Watch this reel about fibro by a british GP www.facebook.com/reel/1111377550785913/?mibextid=rS40aB7S9Ucbxw6v

Good luck x

@Booboobagins no trauma here, fed up of hearing this sweeping generalisation

octopusenergyfree50 · 20/03/2025 04:53

@Toddlerteaplease sometimes something defines you whether you like it or not! Would you say that to someone with another illness that means they can't get out of bed 95% of the time?

PoopingAllTheWay · 20/03/2025 04:55

Basically means , they couldnt find anything else wrong to explain your symptoms

So for that reason alone,
Make sure you have had a full set of blood tests, including lack of Vitamin & minerals, Thyroid , Liver, Kidney, Inflammation markers, Literally everything
As well as a bunch of xrays on knees, hands, Feet etc and even an ultrasound too depending where your main pain is

Every test i have they find something, i now have so many diagnosed conditions, You wouldnt believe them all if i told you

Iv been diagnosed with Fibro too but i dont really believe i have it
I think its because there isnt an actual test to say yes ‘You 100% have this’
I do think its the drs ‘guess’

octopusenergyfree50 · 20/03/2025 04:55

@Illbefinejustbloodyfine I hope you don't work in the medical profession with prejudices like that

octopusenergyfree50 · 20/03/2025 04:58

Snapplepie · 19/03/2025 22:16

It's something of a controversial diagnosis and people seem to have strong opinions about it often based on not very much knowledge.

Research suggests that people generally find it a helpful diagnosis to receive, it draws a line under the investigations, and provides an explanation as well as reassuring people that their symptoms aren't being caused by something worrying. On the other hand some health care professionals tend not to value it as a diagnosis and it can carry a stigma in medical settings and also sometimes mean that any further medical issues are put down to fibromyalgia.

Pain is your body's way of telling you there is danger and our current understanding is that FMS is a disorder of the nervous system where everything, including pain, is amplified and things that aren't a danger to us start to cause pain too.

Some recent animal studies have suggested that this increased sensitivity in the nervous system might be switched on by our immune system and in the distant future this may provide some sort of avenue for treatment.

Our understanding of FMS isn't great and we don't have any really effective treatment options. Medications in particular don't tend to be helpful. It's best managed through pacing, the right amount of physical activity, addressing stresses in your life and otherwise looking after your mind and body by addressing sleep, mood, nutrition etc.

Versus arthritis do a good explanation on their website as well as a nice critique of the research surrounding treatments. Looking at the NICE guidelines for chronic primary pain will give you a good idea of what you should expect in terms of assessment and treatment.

Edited

@Snapplepie this is a great post thanks

Nat6999 · 20/03/2025 05:02

I was diagnosed with Fibromyalgia 6 months after ds was born, the rheumatologist said it was my body's response to a very traumatic birth where I nearly died. I've had it 21 years & have since been diagnosed with ME/CFS, underactive thyroid & peripheral neuropathy which are also autoimmune conditions. I worked for the first 6 years after I was diagnosed, but was having increased bouts of sick leave when I had a bad flare up. In the end I had to stop work, the brain fog & fatigue meant that I was struggling to retain information, my work was getting increasingly difficult, the pain relief I was on didn't help either. When I was first diagnosed, a good day was about 6/10, now a good day is 4/10. It's not just the pain & fatigue, it's the poor sleep, IBS, bladder problems, brain fog & memory problems, if I didn't know better, I would think I had dementia, I forget names, struggle to find words, often forget what day it is. Fibromyalgia comes under the Disability Discrimination Act, employers should make reasonable adjustments & any sick leave for it should be disregarded by law. I take 4 kinds of pain relief & use CBD to help relieve the pain & stiffness in my joints, I use heat & cold to relieve the pain in my neck, shoulders, back, hips & legs & have someone visit to give me a massage once a week to keep my joints moving & relax the knots in my muscles. I'm now completely disabled & housebound, I know no two cases are the same, but this is my experience of having it.

octopusenergyfree50 · 20/03/2025 05:06

It's quite sad to see people saying they assume fibro is caused by depression. It just isn't true.
It can lead to depression because of trying to deal with it but it isn't caused by it.
I think there are many causes for fibro in the same way there are many causes for a headache it's the generalisations that are really unhelpful and makes people's live even worse.
I never suffered from depression, I didn't have any trauma unless you count multiple surgeries as trauma. I wasn't fat. I was healthy and physically active. So I'm sorry I don't fit peoples stereotypes.
I do believe there is a hormonal aspect which is why more women get it and it gets worse after menopause.
I also believe it gets worse over time.

octopusenergyfree50 · 20/03/2025 05:10

PrettayGood · 19/03/2025 22:21

I echo this - it’s often mental health related.

I have a family member who says she has fibromyalgia, or ME.

@PrettayGood why don't you believe her then or do you believe ME is also a mental health condition? The NHS guidelines would tend to disagree, it is listed as neurological.

octopusenergyfree50 · 20/03/2025 05:14

Sugarnspicenallthingsnaice · 19/03/2025 22:24

I 100% believe peoples' symptoms are real and hope they get all the support they need to manage them.

I do wonder what the fuck is wrong on a societal level, that so many people are becoming unwell with autoimmune/inflammatory conditions that were quite rare 50 years ago and probably unheard of 50 years before that. Is it the appalling quality of the food supply? Toxins/pesticides/microplastics? Sedentary lives made worse by covid, gaming, screens? I hope that there's some research being done on the root causes - without people feeling personally victimised by any theories that come out of it - so that there can be better treatment or even prevention.

ETA: I also wonder if it's predominantly experienced in Western societies.

Edited

It's always existed but people didn't connect as much as they do now. Please stop saying it's because of being sedentary, I was very fit and active before I was diagnosed but I am sedentary now because I also have ME/CFS.
Gaming, now there's a cause I never thought of , I've never heard anything so stupid

octopusenergyfree50 · 20/03/2025 05:17

minnienono · 19/03/2025 22:24

I have this, my symptoms are pain in the connective tissues, between my skin and bones basically. Hard to describe. It’s triggered in me by stress, uncomfortable more than acute pain.

In your case yes but it can be different for different people. I am in agony tonight that's why I'm awake, pain meds not touching it, it is definitely proper pain. I've been in labour etc so I know what pain is. Please don't assume everyone has the same pain level as you, I hope you never feel like this

octopusenergyfree50 · 20/03/2025 05:20

@fourelementary me, I have no childhood trauma or mental health problems

Sugarnspicenallthingsnaice · 20/03/2025 05:22

octopusenergyfree50 · 20/03/2025 05:14

It's always existed but people didn't connect as much as they do now. Please stop saying it's because of being sedentary, I was very fit and active before I was diagnosed but I am sedentary now because I also have ME/CFS.
Gaming, now there's a cause I never thought of , I've never heard anything so stupid

Show quote history

My god, are you going to reply to every single post on this thread?!

I didn't say fibro was sedentary. Read my post again, if you're not busy quoting all the other ones. I asked a general question about the increase in autoimmune and inflammatory diseases and put question marks against a few possible causes while saying I hoped more research is done.

Take care not to accuse other people of being judgemental or making assumptions while acting like your personal experience is the only relevant one here - I see you've already challenged someone else's diagnosis!

octopusenergyfree50 · 20/03/2025 05:25

FoolishHips · 19/03/2025 22:37

From what I see in my own life, people with fybromyalgia tend to have a history of abuse, trauma and mental health problems. It tends to affect very sensitive /ND women whose bodies just give up.

@FoolishHips can we please stop the generalisations and stereotypes. I don't fit that stereotype!

garlictwist · 20/03/2025 05:29

I was diagnosed with it by the GP and have dismissed it because I don't think it's real. I think my pain is caused by something as yet undiagnosed and I'm pushing hard to find out what that is. I think fibro is a catch-all term for "we don't really know" and my brother-in-law, who is a doctor, has told me the same thing.

octopusenergyfree50 · 20/03/2025 05:30

Whateverfloatsyourgoat · 19/03/2025 22:40

A doctor randomly diagnosed we with it when I was about 18 because I had some pain that couldn’t be explained. It was before widespread internet use so I never knew much about it…and then forgot about it….suffice to say at 50 I don’t have a chronic illness. Am pretty sure it’s a made up illness. Not to say some people diagnosed with it aren’t suffering from something but….yeah, it’s a cop out

@Whateverfloatsyourgoat you probably would have said the same about someone with MS 49 years ago before they had a test for it. They do have to check for everything else first but that doesn't mean it isn't real, the test just aren't there yet.
There are lots of studies proving it is very real

MaggieBsBoat · 20/03/2025 05:34

Of course it’s real. All diseases exist before they find out the underlying causes or unseen physical changes biologically.
I am so sorry OP. I’ve not got it but have a friend with it and she is in pain much of the time.
I do think that having a clean diet and gentle movement help. Also I would reiterate the comments of pps to avoid support groups.

Podgirl50 · 20/03/2025 05:42

OldCottageGreenhouse · 19/03/2025 22:52

Yet again, backs up what I said! You’re not reading them clearly!

Stop throwing a tantrum and go away!

Show quote history

To arrive at a diagnosis of Fibromyalgia, the patient has to see a Rheumatologist to determine that there are no other causes, including. Arthritis & Sjogren’s Disease. After exclusion of all other possibilities, does the Rheumatologist tell the GP to consider Fibromyalgia. What this document advises, is that secondary Rheumatology or different Specialist appt. is not required to confirm & treat Fibromyalgia by the GP.

ThreeMagicNumber · 20/03/2025 05:43

I absolutely believe it's real. My sister in law has it and is massively debilitated by it and in constant pain. I've watched her change over the years due to it.

Sunshineandclearskies · 20/03/2025 05:49

octopusenergyfree50 · 20/03/2025 05:06

It's quite sad to see people saying they assume fibro is caused by depression. It just isn't true.
It can lead to depression because of trying to deal with it but it isn't caused by it.
I think there are many causes for fibro in the same way there are many causes for a headache it's the generalisations that are really unhelpful and makes people's live even worse.
I never suffered from depression, I didn't have any trauma unless you count multiple surgeries as trauma. I wasn't fat. I was healthy and physically active. So I'm sorry I don't fit peoples stereotypes.
I do believe there is a hormonal aspect which is why more women get it and it gets worse after menopause.
I also believe it gets worse over time.

I would definitely count multiple surgeries as trauma, it's not always psychological. Believe me, I know it's frustrating, it’s like people are saying it’s all in in your head but you're projecting and not coming across well.