Page 2 | Embarrassed to tell people about fibromyalgia

AliceMcK · 11/01/2022 17:40

Hi, I spent years going round in circles with rheumatologists. They did all the usual tests, ruled out the common AI diseases. There was no interest in finding the actual cause of my symptoms it was all about treating my symptoms. I was put on seven different types of medications on top of taking pain meds every single day. Every medication I was put on I either had an allergic reaction too or made me so much worse.

Last year I left the uk and paid to see a private rheumatologist, I had my first physical exam in almost 5 years, the nhs rheumatologist only examined me once, when I was having a good day. The new dr immediately suggested fibromyalgia but ran all the tests just in case. She diagnosed me with fibromyalgia and put me on pregabalin for nerve pain. I was also diagnosed with sleep apnea at the same time with another dr. With the pregabalin and my cpap machine my life is so much better, I’ve gone from taking the max doses of co-codamol & naproxen daily, sometime exceeding the max to taking one dose of one or the other maybe every couple of weeks when having a bad day. I’m on what’s called a maintenance dose of pregabalin and it’s changed my life.

I honestly don’t care about the stigma of fibromyalgia, all I care about is I finally know what’s wrong with me, I can put a name to it and I’m being treated correctly. I still struggle with fatigue but its definitely more bearable without all the pain, same with the brain fog.

Before seeing the rheumatologist get as much advice as you can of MN & look on fb as there are some great autoimmune support groups. Write everything down and make sure you get definitive answers from the Dr.

And, most importantly you don’t have to justify yourself to anyone, but I would say if your worried it’s effecting work speak to your boss and say your undergoing tests, you don’t have to mention fibromyalgia at all, just saying they are looking at rheumatoid issues. Good luck.

Jasmine5552 · 16/02/2022 21:02

@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?

I am thinking about going to a private rheumatologist as I have had over 14 years of this pain. It started in my feet at 22 and moved up to my legs and fingers at 24. The doctor has put me on all sorts of medication and I have had blood tests done. No diagnosis has been forthcoming as yet.

Lightning020 · 22/02/2022 07:53

I think t is outrageous that such stigma exists. I have known at least six people with this. I have never doubted them once. People who dismiss invisible conditions should experience it themselves! Why would anybody make it up. Absurd isn't it.

OnlyAFleshWound · 22/02/2022 07:59

This is a very helpful explanation.

Fibromyalgia” is a medical UFO: the diagnosis is descriptive, not explanatory
Fibromyalgia is not an explanatory diagnosis. It sheds no light on the nature of the beast; it’s just a label for a distinctive but unexplained pattern of symptoms. It doesn’t “explain” the condition any more than “unidentified flying object” explains a mysterious object in the sky. Seeing a UFO doesn’t mean you have seen a vehicle piloted by aliens, and a “diagnosis” of fibromyalgia doesn’t imply any specific cause either: it’s just the word we use to describe feeling a certain way, badly enough, for long enough. Two cases of fibromyalgia might have completely different causes, for all we know.

YOU: I have unexplained chronic pain.
DOCTOR: You may have fibromyalgia.
YOU: That’s literally what I just said.

Thanks to this confusion, patients usually think the diagnosis is more meaningful than it is. Here’s a glaring example: “Finally, in 1998, McCullough was diagnosed with fibromyalgia, a condition that had only been given a name a decade before. After seven long years, she finally knew what was wrong.”6 But she knew no such thing; she had been labelled and classified as a patient, that’s all

Long but excellent article
www.painscience.com/articles/fibromyalgia.php

picklemewalnuts · 22/02/2022 08:01

This thread is from last autumn.

OnlyAFleshWound · 22/02/2022 08:02

@picklemewalnuts

This thread is from last autumn.

Ah sorry the poster above me had replied today. Doh.

ImJustMadAboutSaffron · 02/03/2022 23:17

@picklemewalnuts

This thread is from last autumn.

And still relevant. And useful.

sergeantmajor · 24/03/2022 10:22

"No evidence of infection is not evidence of no infection".
This brilliant phrase from my sister's doctor emphasises the fact that just because modern medicine has not yet got a good way of detecting the problem doesn't mean that it is imaginary.

My DH has fibro, tells no one, mostly so that they don't ask him about it. It may be simpler to say "chronic pain, still looking into it", and avoid the whole debate. I am usually a great one for sticking two fingers up at stigma, but people can be accidentally insensitive, so it's easier to dodge the issue.

Ihatemyjob22 · 31/03/2022 18:05

I was told last year at a pain appt by the consultant that there will soon be a blood test that detects fibro so there is hope. He said they've found a chemical or something that shows in people with it.

Scouse21 · 08/04/2022 02:39

Hi love I really feel for you I am the same I went neurology for many tests for pain through whole body falling over and exhaustion.. I been like this for few years now but over time got worse. Mi said to doc no such thing as fibromyalgia.. what can I do I cannot live like this it’s ridiculous.. he said only advice I can give you is your must listen to your body’
I understand now what he means my body in control not my brain .. when I’m bad I have to stay at home and rest I feel like my life is over I cannot even plan anything as don’t know how I will be.
You doing well going to work you must try carry on and again as Dic said listen to your body this is an illness and a horrible one!! You must take tablets for pain.. relax when you need to and most of all love look after yourself .. I have good days but lit bad says 🙏🏼

B0J0ker · 08/04/2022 04:01

Gosh I feel for you and can identify. I was diagnosed with fibro 20 years ago and one of the first people I told replied "oh, that's just one of those made up illnesses isn't it? It's all in the mind..." after that experience I've hardly told a soul.

And that's been my experience with a lot of people until about 3 years ago when attitudes started to change as it became [a bit] more understood. I still find a lot of people think a nice hot bath and a few early nights will sort things out!

Try not to get too worried about this though as you owe no one an explanation. I understand that some colleagues can be a bit nosey and unpleasant though, and it feels like some are basically saying we're swinging the lead.

If you need to say anything just tell people you are unwell and having some tests done and seeing specialists.

And try to become thick-skinned about it! People can be very insensitive in a way they wouldn't be with a more understood illness - they'd never imply that a colleague with Chron's disease or cancer or a visible disability for example, was taking the piss by having time off. Yet fibro is a lifelong condition that can seriously impact the sufferer's quality of life.

I hope you find some treatments that help OP and support from the many online resources/forums.

Midlifemusings · 08/04/2022 04:06

I was told I had fibro. Saw a rheumatologist who agreed.

A couple years later I was seeing an endocrinologist for something else and she told me to try getting my ferritin levels to above 50 to see if it helped with the pain. All my pain went away as my ferritin levels rose. I have to take iron everyday. If I miss a few days, the pain comes back.

No idea if that applies to you but I was frustrated I spent years in pain thinking I had one illness when what I needed was iron supplements.

Nat6999 · 08/04/2022 04:41

I have Fibromyalgia & ME/CFS, I never mention the Fibromyalgia as I feel like it's an old ladies disease.

ImJustMadAboutSaffron · 09/04/2022 11:50

I felt like that but have read lots and people get it in their 20s.

I've got a new doctor now and he's taken me off naproxen because of the potential side effects. No medication and I've been in terrible pain two days this week around my yoga and body balance classes.

AMBE123 · 08/05/2022 19:00

Hi, I have fibro and I know what you mean, but actually usually when I tell people I pre-empt it by saying "which I used to think was one of those things that didn't really exist" ....and most times people say to me "oh no, it's real, my mum / sister / friend has that....so sorry you have it too"

That's been a pleasant surprise to
me and I hope you have similar.

BTW the app Curable helped me a lot...as did being able to stop travelling for work for the last two years ..

ImJustMadAboutSaffron · 08/05/2022 23:56

I don't usually tell people, unless I get comments on the way I am walking or similar. I cannot walk when I get up from sitting and have to get moving to get moving if that makes sense.

Sortilege · 09/05/2022 00:01

redpandaalert · 17/08/2021 13:32

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

This was - more or less- me too.

Lots of women get fobbed of with a dx of fibromyalgia, when really there is another issue. Fibromyalgia is a functional or psychosomatic condition. It’s not an illness with a physical cause. Take as old as time to tell women it’s all in their head.

Sortilege · 09/05/2022 00:05

OnlyAFleshWound · 22/02/2022 07:59

This is a very helpful explanation.

Fibromyalgia” is a medical UFO: the diagnosis is descriptive, not explanatory
Fibromyalgia is not an explanatory diagnosis. It sheds no light on the nature of the beast; it’s just a label for a distinctive but unexplained pattern of symptoms. It doesn’t “explain” the condition any more than “unidentified flying object” explains a mysterious object in the sky. Seeing a UFO doesn’t mean you have seen a vehicle piloted by aliens, and a “diagnosis” of fibromyalgia doesn’t imply any specific cause either: it’s just the word we use to describe feeling a certain way, badly enough, for long enough. Two cases of fibromyalgia might have completely different causes, for all we know.

YOU: I have unexplained chronic pain.
DOCTOR: You may have fibromyalgia.
YOU: That’s literally what I just said.

Thanks to this confusion, patients usually think the diagnosis is more meaningful than it is. Here’s a glaring example: “Finally, in 1998, McCullough was diagnosed with fibromyalgia, a condition that had only been given a name a decade before. After seven long years, she finally knew what was wrong.”6 But she knew no such thing; she had been labelled and classified as a patient, that’s all

Long but excellent article
www.painscience.com/articles/fibromyalgia.php

Well said.

It is so often a “piss off” diagnosis. Medics know there is no measurable science behind it. It’s overwhelmingly women who are being let down.

picklemewalnuts · 09/05/2022 07:15

I went to a group and found great comfort in looking at those around me. They were young and old, slim and obese, high flyers and more modest. There was no unifying factor, nothing I could blame, except intolerable levels of stress at some point.

I was relieved that I hadn't simply allowed my weight gain and lack of fitness to make me ill.