Online Test Says Yes; how to get my doctor to listen

[JoggingGirl]

I took the online test on this site and it confirmed how I feel is Fibromyalgia. My family doctor just sent a referral to an internal doctor because she just doesn't know and keeps telling me to lose weight. Yes i could use a few less pounds but I am dealing with brain fog, extreme fatigue, and all the fibro symptoms. Life is frustrating and I can't even jog 3 miles anymore. How do you get doctors to listen?

 

[cookiebaker]

I cant even jog to the end of my driveway, if it makes you feel any better, LOL just walking that far can sometimes be a challenge (my driveway is almost 200ft long)

but yeah, getting them to listen is sometimes very hard..

I would start by sitting down and making a list of all the symptoms you have and when they started.. pain and where it is located, how often and how bad; the brain fog; fatigue, digestive issues? sleep problems? edema? depression and/or anxiety? all of it. write it down! (You can find a copy of that test in pdf form and take it with you, but not sure i would lead with that item)
Start the symptoms list now and every time you think of something, add it to the list, so by the time you go to your appointment, you have at least 85-90% of the symptoms noted.
Then, when you go to see your doc, just tell them "there is no way i should be feeling THIS bad at my age - there HAS to be a reason for it" then hand them the symptom list...

This is what I did with my primary.. and that was when all the testing really got started - was tested for Lyme disease, RA, Lupus, psoriatic arthritis (psoriasis runs in the family) and so on... blood work to check vitamin & mineral levels, hormones, etc. x-rays of various things.. lumbar spine, cervical spine, hands, etc.. also had an MRI of one hand, to get a better look at the joints - I have osteoarthritis, but they wanted to make sure there was nothing more serious.

When it was all said and done, I do have osteoarthritis, pretty much all over, but with the fatigue, ibs, sleep problems, wide spread muscle/tendon pain, etc.. there is really only thing that can cause all of that after ruling out other more serious problems.. and that is Fibromyalgia.

And, in the midst of all of this testing, and PT, and treatments on my lumber spine to reduce arthritis pain.. and trying several different meds (and trying to wean off one that resulted in withdrawal symptoms) I came down with a kidney stone and all the fun that entails.. yeah.. has been a rough year! but I am still here, still kicking and still fighting the fight.

 

[JayCS]

Hi JoggingGirl, and welcome "in"!
Don't forget that docs can't help much anyway, @sunkacola's advice etc. is much more important. But of course it's important to get other things checked and we may need it for things like disability etc.
Like cookiebaker suggests what should help is describing our symptoms precisely, without downplay, listing as many as possible in a way similar to the "test" = 2016 ACR criteria.
If that doesn't, change docs.
But artificial as it may seem, it may also be the way we appear, a doc in a video said: No make up, go when you feel bad, not good, like early in the morning. Downside is it's harder to concentrate, but along those lines.

 

[cookiebaker]

go when you feel bad, not good,

dont often get the choice on when to go.. here at least, appointments are anywhere from 3 weeks, to several months out.. I had to book my annual checkup months in advance.
If you have something that needs more immediate care, you either go to Urgent Care or the ER.

but yeah.. no makeup, dont wash the hair that day (or at least wait until after the appointment, lol), long hair gets put into a loose messy bun, loose, comfy, and not flattering clothing. (over sized sweats are a favorite of mine - i have one 3x sweatshirt that i love! i normally wear a large or 1x if i want a bit looser)
the last thing you want to do is go in looking all fresh and ready to take on the world (despite the fact that so many of us put on that kind of front nearly every day) Go in "looking like you feel" - tired, rumpled and not at your best. Didn't sleep well and have suitcases under your eyes? Perfect!

 

[JamieMarc]

Go to the internist recommended. A fibromyalgia diagnosis is a process of elimination. It took me 7 years of specialists, radiological testing, consultations, physical therapy, rinse and repeat all of that, to arrive at my diagnosis and subsequent treatment for fibro. It's extremely frustrating and difficult, but I advise patience and footwork.

 

[sunkacola]

Time that it takes to get a diagnosis varies a lot. It may not take years....may not even take one year....just saying, so that people don't get discouraged!

As for looking bad to go to the doctor, I personally have found that a balance works a lot better than going in there with uncombed hair and so on.
If a person looks over so bad the doctors will tend to think there's a mental health problem going on and they will not believe you that your physical symptoms are that bad.

If you go in looking tired, but as if you are doing your best (ie: no makeup, but hair tidy; nothing fancy on but wear the right size clothes that are clean), they will tend to take you more seriously.
This is my experience. I did not deliberately experiment with this, it is just what I have learned from going to a lot of doctors over the years.

 

[cookiebaker]

nothing fancy on but wear the right size clothes that are clean

just to clarify - i did not say wear "dirty" clothes, just maybe oversized..
on a bad pain flair day, for me, wearing the appropriate sizes kinda hurts, so a little larger is not a bad thing.

what you dont want to do is go in looking like you just stepped out of the pages of a fashion magazine.
I had a great aunt that refused to face the world before "putting on her face", as she called it... hair perfectly done, makeup done, etc. even if it was to just go out on the pontoon boat with family for a little fishing or relaxing.. you never saw her without hair & makeup done to a "T"

 

[akabore]

I hear you. I went through multiple doctors and specialists and tests so far and they will not even give me the official diagnoses.
Usually I find that women especially needs to advocate for their health because not often taken siriously (we are supose to take it all in)
I change doctors when I am not being listen to. However, I do all the tests they recommand so they do not say later that I did not comply.
Next appointment I am asking an official diagnosis or referal to a doctor that treats fibro. Best of luck to you and keep us updated

 

[JayCS]

Usually I find that women especially needs to advocate for their health because not often taken siriously (we are supose to take it all in)

Hmm, isn't the discrimination of females more from the belief that they are letting it out too much, i.e. exaggerating?
Edit: So yes, sort of supposed to take it all in because it's not believed.
And it's men that are more expected to take it all in and so they don't go to the docs and are not diagnosed that easily?
Both beliefs are discriminating, but I as a male feel the discrimination of females is of a worse & more embarrassing kind.
Nonetheless males actually seem to be getting a lot less help for this than females.
And of course none of us is getting enough help!
Edit: Because of disbelief that our pain and symptoms exist. Which good docs & researchers know and say is wrong.

(That's one of the reasons that the clinic presentation of ratio of females to males is now around 7:1, some say 4:1, whilst in general surveys using the criteria the ratio appears to be 2:1, which seems likely. That was just confirmed in a UK fibromyalgia webinar I "attended" on Monday with the researchers/docs Choy, Häuser, Goebel and Ravindran. Another is that the antiquated tender points test didn't work as well in males.)

 

[OldKarz]

I went in with 'The List' of my symptoms and the doctor said "I can't do anything with that. There is too much to find a place to start". Hello Fibro!!

 

[JayCS]

I went in with 'The List' of my symptoms and the doctor said "I can't do anything with that. There is too much to find a place to start". Hello Fibro!!

Yep, here I don't even get to start with any lists of anything.
And the other day in I think a webinar a doc recommended to just start with the 2-3 main symptoms first.
At the same time: In the 2022 UK guidelines for fibro it's a pointer to fibro if the doc feels overwhelmed by a patient's symptoms (as well as the patient...)

 

[cookiebaker]

I simply told my primary i was sick and tired of feeling sick and tired, and there was no way in h-e-double toothpicks i should be feeling this bad at my age. Apparently I got my point across, because I then got sent for a bunch of blood work (including vitamin & mineral tests that I requested), referred to rheumatology, who requested x-rays & more blood work, physical medicine who went further with the x-rays and a couple MRI studies, etc, etc... all told, it took about 2 years of intense scrutiny to actually get the fibromyalgia diagnosis (ie: actually listed in my medical records)

 

[sunkacola]

I went in with 'The List' of my symptoms and the doctor said "I can't do anything with that. There is too much to find a place to start". Hello Fibro!!

Probably the long list was not the best way to approach it but you didn't know that, and why would you know that. I think @JayCS 's advice to start only with the worst things first is sound. If you go in with only 2 or 3 things they are less likely to have that attitude, or to think you are a hypochondriac. One has to play it right with doctors. We shouldn't have to tip toe around them to get what we need but that is the reality most places.

 

[JoggingGirl]

Thanks for all the pointers. I did see an internal doctor last week who didn’t listen to me at all. He was completely focused on my weight and said I needed to drop 65lbs and I’ll feel better. Ah nope I have no plans of weighing less than my 25 year old daughter. Anyway, now I went back to my GP and said I am to young to feel like this and said send me to a doctor who specializes in fibromyalgia. I now have a referral to the same rheumatologist that my auntie goes to. Cross your fingers.