“No such thing as Fibromyalgia “

[CancerSignFibro]

Yep, the new doctor that took over for my doctor who died of cancer! Of course she can’t tell me why I hurt so bad. My legs now hurt so horrible I don’t know what to do with them. I imagine she thinks I am making it up. This stuff is so hard and these idiot medical professionals make it worse.

 

[JayCS]

Of course she can’t tell me why I hurt so bad.

Yeah, I was once irritated when a sleep lab doc said "trash can diagnosis", but to him it luckily meant he was determined to find out what else it could be, so he did things like a spinal tap which made sure I had "nothing" "else"... One of his last theories was several different kinds of sleep disorders, but that didn't work out either...

 

[Badger]

I saw a doctor recently on a breakfast show who said that her mother has suffered with fibro from many years. She said that in medical school fibro was disregarded and there was no information on it as such. We seem to rely on their discretion rather than be treated as patients.

 

[sunkacola]

@CancerSignFibro , you need a new doctor. Is there any way that you can manage that? I don't know your insurance or financial situation (nor should you feel you need to say), but if it is possible to change doctors, I think you should. Most insurance plans will allow you to change doctors. If the insurance plan doesn't want you to, I would suggest giving them a call and telling them that your previous doctor was treating you for fibro, and the doctor assigned to you now is dismissive and rude and not intending to help you.

I also think it is the height of irresponsibility and incompetence for any doctor these days to think that, let alone tell that to a patient, and I offer my support and sympathy. It is terrible to be sitting in a doctor's office, in pain, and be dismissed like that.

If you have to stay with that doctor, then maybe you can press them to tell you what you do have, then, if it isn't fibro. Maybe if they are forced to run tests and they all come up empty they might have to learn something.
So sorry this happened to you.

 

[Rainbow]

Am so sorry you've had this awful experience with that doctor but am also sorry to say that it's not uncommon & many of us have been faced with some level of dismissiveness along the way on our Fibro journey.

Myself included, having posted on here previously about the manner of my original 'Diagnosis' by a so-called 'Specialist'
& reactions.

Having said that, I had hoped that some 13 years later that things would have improved but seemingly not.

Fortunately for all of us, this forum has some very knowledgeable & wise members, who through their own personal experience can offer understanding & guidance.

 

[Auriel]

Are you having a flaire up? or having a much worse time of it lately? can she not find the information of your fibro diagnosis? Or is this pain something new for you? (I know my pain is worse in my legs than the other areas and certain things make it worse)

 

[Auriel]

medical school fibro was disregarded

That's bad, that's really bad! , I guess that could explained why we've been dismissed so much over the years amd almost gaslighted into thinking there's nothing wrong with us (I'm angry now)

 

[Badger]

Yes it made me quite angry at the time too. It was interesting to hear it come from a GP whose own parent has suffered a lifetime with fibro.

 

[youngatheart]

That's bad, that's really bad! , I guess that could explained why we've been dismissed so much over the years amd almost gaslighted into thinking there's nothing wrong with us (I'm angry now)

For years I was gaslighted by Doctors! Statements such as "you're too young to be in that much pain", " you just want pills", and " it's the way you're sleeping on it" are just a few of the comments doctors have made over the years.

Finally finding a doctor who took me seriously and started looking for answers was a god send! Unfortunately, she retired but I was able to find a great new PCP. This one ran blood tests and referred me to a rheumatologist, who diagnosed me with fibro. Unfortunately, he had nothing to offer me except to say that the 3 meds FDA approved for fibro are a joke, reduce stress/anxiety, and improve my sleep. Told me nothing more could be done. He didn't even want a follow up appointment. My PCP was not happy to hear this and is currently helping me to find a new rheumatologist.

On a final note my 21yo child is now going through the same issues. Having watched me fight with the medical field their whole lives, have made them not take the gas lighting and demand answers.

 

[SweetWithSour]

have made them not take the gas lighting and demand answers.

What an incredible testament to the positive impact that you have had for your child. A sign of your true strength!!!! I do you you, and your child are able to form a great Healthcare team, that are supportive.

 

[Allglory2God]

I'm so sorry to here of your exasperation/ frustration in the seeking a knowledgeable physician! I know it well. Stay focused on the goal. Take a break and then regroup and get back at it

 

[Auriel]

Yes @youngatheart it's unfortunately all too common for fibro sufferers to be brushed aside with a diagnosis of its their imagination, there's nothing wrong with them or it's mental illness (I really don't understand why it's been the case for quite a few, though I guess what badger said could explain it) I'm just lucky right now I've dr's who understand just how painful and uncomfortable the condition is (and I've been though a few!) I'm so sorry your child is going through it, hopefully you'll find a sympathetic/educated Dr who can support them (or at least not dismiss) what they're experiencing
️ ️

 

[JayCS]

it's unfortunately all too common for fibro sufferers to be brushed aside with a diagnosis of its their imagination, there's nothing wrong with them or it's mental illness (I really don't understand why it's been the case for quite a few, though I guess what badger said could explain it)

She said that in medical school fibro was disregarded and there was no information on it as such.

Well the question remains why it was (used to be?) disregarded in medical school...

Mainly cos it's invisible (so even hard for us to believe ourselves), and that contradicts all medical thinking, needing everything to be "evidence-based". It's a mind screw. And needs a paradigm shift: The patient is right, we aren't. (Many patients aren't right, some hypochondriac, some psychosomatic.)

Attempts to solve that mind screw are the hypothesis that fibro is a central sensitisation, the new 3rd pain category "nociplastic" and the new mantra pain researchers try to teach their colleagues: "If patients say they're in pain, they are."
I'm actually surprisingly conservative towards these hypotheses and say that firstly there are quite a lot of biomarkers showing that something is wrong in us, and secondly that I think some day that various kinds of "injury" will become medically evident. (The CSS hypothesis may fit for those with hyperalgesia & allodynia.)
But/so I'm not conservative about medicine's self-assessment: I think medicine (being so keen to help?) always tends to over-estimate itself. And tends to attract people that over-estimate themselves, too...

 

[Auriel]

If patients say they're in pain, they are."
I'm actually surprisingly conservative towards these hypotheses and say that firstly there are quite a lot of biomarkers showing that something is wrong in us, and secondly that I think some day that various kinds of "injury" will become medically evident. (The CSS hypothesis may fit for those with hyperalgesia & allodynia.

Jayc, is anyone getting any closer to funding out what's going on with us? (definatly "something" wrong cos my back are my legs are letting me know this morning for sure!!! ) I like the term mind screw (sounds a lot nicer than the "other' word)

 

[JayCS]

is anyone getting any closer to funding out what's going on with us

No news in the reviews about "finding out".
But at least about "funding" there is:
Cort Johnson (healthrising) has this year been reporting more money is now going into ME/CFS & FM. His examples are
the "Metrodora Institute" (since 2021, for ME/CFS, but also FM),
for ME/CFS a big study grant,
and increasing work for a clinic and a researcher,
and for fibromyalgia the 2021 "autoimmune" study (“Passive transfer of fibromyalgia symptoms from patients to mice“) is being followed up with more research ideas around antibodies, which has won them an award of "£1,699,572 ($2,100,000) over five years". That would probably mainly be going into the possible autoimmune/antibody aspect.

From: "A Major ME/CFS Moment Just Occurred at…The Mayo Clinic!" - meaning that Mayo has finally condescended to take ME/CFS seriously - which means everyone else now has to as well, also good news and will be encouraging funding for both.

I like the term mind screw (sounds a lot nicer than the "other' word)

I like both, actually... But altho screw can mean the same,
here I think it is more fitting, cos when I have such an experience,
my mind feels turned around and inside out, so screwed.
And I feel betrayed by my sense of everything seeming solvable, so screwed. And I end up with one screw more loose... so unscrewed.