Embarrassed to tell people about fibromyalgia

[fringeneedsatrim]

Hello, it's my first post in this board so please bear with me.

For the past 3 years I've been in constant pain. Aching, fatigue, just generally feeling like crap. I have a stressful job which I really enjoy but recently the pain is getting to a point that's making dealing with every day life difficult. I've so far not taken any time off work sick, and I don't intend to, but I'm at the point where I'm having to tell people a bit about my struggles.

I'm just in the process of being referred to rheumatology but the nurse says I have all the classic symptoms of fibromyalgia.

I'm embarrassed to tell people this due to the stigma associated with fibromyalgia. Unfortunately it is one of those illnesses where a lot of people seem to think it's all in the mind or you're making it up.

I'm so fed up of being in pain. I've probably not helped myself at work by being one of those people who doesn't moan and just gets on with stuff so no one has any idea how I've been getting worse and worse over the past few years... except for the brain fog! I've had quite a few of those moments in the office which I've just laughed off.

Have any of you had to deal with stigma at work and how have you dealt with it?

You may not have fibromyalgia. They thought I probably had it other joint issues but after 4 years they now think it’s an autoimmune disease either Palindromic Rheumatoid or Lupus. You could also have the early stages of rheumatoid arthritis you need MRI, X-ray, blood tests. I think fibro can be a catch all sometimes you need to persevere

I hear you!

CFS & Fibromyalgia and, on the rare occasion I have to mention it because I’m struggling, I can almost hear people rolling their eyes.

Rheumatology took bloods, said I didn’t have R.A, then simply confirmed that they agreed with the GP that I had fibro & discharged me back to primary care. Very disheartening.

It’s up to you who you tell health is personal thing and yes lots of illness far down the ladder of “deserving real illness”. You could say I have condition affects my joints or muscles or make something else up entirely. Only really of concern to occupational health who may need to know exactly needs but that’s private anyway and probably not something you need yet.

I’d stick with vague auto immune condition if you feel you need support without judgment.

I’m very open about my fibro and I’ve never had any negativity. Yes I don’t think people understand but I don’t think anyone can really understand chronic pain unless you unfortunately have it

My work has been especially supportive apart from a few wobbles but they really do try

I tell whoever it concerns etc, about my fibromyalgia/cfs. Only ever had negativity from one person and my BFF soon told them!

I had fibro/CFC for seven years, and read some research about SIBO, which apparently 90%+ of people with fibro actually have. I tested for this, and after treatment I’m pain free and normal energy levels, all the other random twitches and symptoms e.g. brain fog have gone too. Worth googling SIBO and Fibro together and seeing if this could apply to you. I would never have thought bacteria could be behind it - struggled to keep working through it but all resolved with antibiotics. Good luck.

@Buttercup72

I had fibro/CFC for seven years, and read some research about SIBO, which apparently 90%+ of people with fibro actually have. I tested for this, and after treatment I’m pain free and normal energy levels, all the other random twitches and symptoms e.g. brain fog have gone too. Worth googling SIBO and Fibro together and seeing if this could apply to you. I would never have thought bacteria could be behind it - struggled to keep working through it but all resolved with antibiotics. Good luck.

Hi, can I ask where you had your testing done and how much it cost please? Also, what symptoms did you have? So happy for you that you found a way out!

Sorry @Dotheythinkourkidsarestupid I missed your question. I got tested with healthpath - it cost £160. Tbh, you could probably just skip to treatment as it wont do harm. NHS gave me antibiotics’rifixamin - but that was only because I was referred to gastric already.

Oregano softgels with a high carvicol content will kill the bad (and good bacteria). I got them from Amazon. It can take several months to treat. It really important to build up the good bacteria at the same time- quality probiotics and better still kefir will help.

My symptoms were chronic fatigue, chronic pain and brain fog. I also had lots of smaller symptoms - restless legs, insomnia, palpitations, clumsiness, slurred speech, memory issues, morning nausea, burning feet.

When your bacteria is out of balance it can cause food sensitivity, I can’t eat gluten now but hopefully as I heal I will be able to in the future. It’s really worth cutting out gluten completely for 2-3 weeks to see if this impacts your symptoms. I noticed a massive difference with this alone. Good luck

My aunt has fibro and I was diagnosed CFS I my 20s. You need a thick skin, a really thick one because people as a general rule, are awful when it comes to "invisible illnesses".

You are not lazy, you are not imagining it, you are doing enough and you are enough. Live by that and ignore everyone else x

I would probably never have heard of fibromyalgia but for MN.
I suspect most people haven't heard of it.
I don't understand where the stigma would come from.

This article says sufferers self-impose stigma.
I don't know how to tell OP not to self-impose stigma.

Doesn't that mean the stigma is a form of mental illness related to beliefs, the resolution is to get treatment, maybe CBT?

I know exactly what you mean OP, accompanied with the eye roll en you say it. I was in constant pain and fatigue for 15yrs before I was diagnosed 2yrs ago. It’s not just the brain fog but the ‘tender spots’ that ache constantly, the accompanying problems, tennis elbow, hip pain, sensitivity to temperature (I get horribly hot all the time, for some it’s cold all the time). Burning skin sensation. I mAnge it by walking everyday, a 1hr walk and doing pilates.

@lljkk The stigma comes from it being difficult to diagnose, many people having not heard of it including doctors and many just not understanding it. Lots of research is still being done to determine the most effective care pathway for fibromyalgia from diagnosis to treatment (I’m on a Like focus group for this). Like @redpandaalert said, some doctors use it as a ‘catchall phrase’ for everything making sufferers seem like they are lying about their symptoms. It’s a bit like autism. Autism has taken ages to get the level of awareness it has nowadays and how it presents and how it affects day to day living, even still, you’ll be amazed the number of people who think it’s all ‘made up’, just naughty dc etc. In 2001, I spoke with a GP (senior partner) who told me, in his personal opinion ‘autism’ can be dealt with with a smack! I kid you not.

Fibro is a diagnosis of exclusion- you don't have A, B or C yet you still hurt- must be Fibro. They don't yet have a test that confirms it, just exclude everything else. That's why some people worry about stigma.

I've not experienced anything, I've been met with understanding when I say I can't manage x, y or z.

But who applies the stigma?
Doctors?
Can't be People like me who never heard of it.

if someone says they have multiple area, chronic pain, why wouldn't I believe them or attribute stigma?

@lljkk Because it takes long to diagnose, Fibromyalgia sufferes are likely to have complained for yrs about tiredness, aches, pains etc to their family & friends as one thing after the other gets eliminated, they start to gain the reputation of a ‘moaner’. When eventually they get diagnosed, it’s met with the eye roll “oh here we go again, fibromyalgia!” Or what I got, “What’s that? ”, followed by, ‘nothing serious then”. When I sought a second opinion from my old GP practice, the doctor I saw looked me in the eye and said, ‘You’ve had myriad blood tests, and you don’t have Abcdefg, there are just some people like you that cannot be helped’. He clearly hadn’t didn’t know the signs of fibromyalgia.The stigma, comes from doctors, nurses, receptionists, and just people in general. There was thread a while back where a sufferer was told by a nurse, fibro is all in the mind but not really a condition. There are lots of theses types of ideas floating around.

It can be some doctors, but also friends/colleagues who imply that mental health/stress is the issue, or question why you were ok yesterday but asking for help today. It feels like you are questioned more, in a different way, than those with other illnesses

There's no stigma associated with fibromyalgia diagnosis, is what you gals are saying. None at all.

The stigma is associated with malingering. Now OP can prove she's not malingering. She has a diagnosis.

But we do have a diagnosis, we’re not just bandying the word ‘fibromyalgia’ about because we think we might have it. We’re saying people don’t believe in our diagnosis.

I suspect a lot of perceived eye rolls are people reacting to the Information in a positive way rather than a skeptical way. It’s a type of diagnosis that merits an eyeroll. It’s annoying and difficult to deal with. It’s tiresome. That all deserves an Eyeroll. Assuming that Eyeroll is meant as skepticism isn’t going to help anyone.

Personally I’d just say I have a condition that effects my joints. I don’t see why people need to know the details.

@TrollsAreSaddos Most of us are adults and been round long enough to know a positive expression to a sceptical one. Fibromyalgia does not warrant an eye roll. Please stop telling us we have misunderstood. Like I said before, I’m on a focus group and even there, everyone says they are viewed with skeptisicm even by medics, are we all just imagining it including the researchers? there is ongoing work to try and raise awareness. Even on here, it shows we are disbelieved.

[quote Sonick]@TrollsAreSaddos Most of us are adults and been round long enough to know a positive expression to a sceptical one. Fibromyalgia does not warrant an eye roll. Please stop telling us we have misunderstood. Like I said before, I’m on a focus group and even there, everyone says they are viewed with skeptisicm even by medics, are we all just imagining it including the researchers? there is ongoing work to try and raise awareness. Even on here, it shows we are disbelieved.[/quote]
@sonick
I think my post wasn’t clear. I didn’t think a fibro diagnoses deserves an Eyeroll because it’s not a proper diagnoses but because it’s a particularly annoying thing to be diagnosed with. I don’t think a single poster on this thread has said anything that suggests they ‘disbelieve’ such a diagnoses, 🤷🏻‍♀️

I think there is a stigma. Also a reluctance to try and find a cause.
I have Rheumatoid arthritis and the rheumatologist said I had fibromyalgia. This was after one conversation where I had unexplained pain (it later resolved). I was stuck with this diagnosis on my medical records and several times when my RA was flaring I was met with oh, it's your fibromyalgia, from rheumatology nurse.

@lljkk

I would probably never have heard of fibromyalgia but for MN. I suspect most people haven't heard of it. I don't understand where the stigma would come from.

This article says sufferers self-impose stigma.
I don't know how to tell OP not to self-impose stigma.

Doesn't that mean the stigma is a form of mental illness related to beliefs, the resolution is to get treatment, maybe CBT?

That really isn't what the article you refer to says. It says "Many women with fibromyalgia find themselves stigmatized through no fault of their own" How that means the people with fibromyalgia have a mental illness and need CBT is beyond me, I think you get the wrong end of the stick there.

I understand why you feel that way.

HR / occ health etc manager will know position.

Do you need to tell colleagues?

If so. Just tell them something else and tell manager you want to keep things private.

Even just. Very unwell docs looking into it having tests. The end.

Wow. I could written this post word for word, even down to not telling colleagues but sometimes having to just to explain slightly.

I’m seeking a new career path as this job is far too physically demanding. I am shaking with exhaustion by the end of the night, collapsing on the couch just to rest for hours before I can do some basic self care tasks like washings or make lunch.

I’ve increased my self care routine a lot to include eating better, taking vitamins and minerals and also prioritising sleep.

Fibromyalgia is real, your aches and pains are real. It is okay for pain to be transient and have an ebb and flow!