How to ask my Doctor - can I chat with one of you?

AntiZombieOwl

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I wonder if anyone here would chat with me about this one on one?

I've been wondering if my every day fatigue is actually fibromyalgia, even though it feels like tiredness.

I'm trying to figure out how to ask my general family doctor to refer me to a specialist. Without getting dismissed/brushed off.

So far I've come up with an idea to tell the doctor something like, "I was talking to someone who has fibromyalgia, and she said it sounds like the symptoms of fibromyalgia. Could I explore that possibility further?"

To make that true, it would help if I actually chat with someone about it. Could I chat with one of you, about it, so that it doesn't have to be a lie?

I don't want to tell them that I figured it out on my own by searching symptoms on the internet. I shouldn't have to worry about that, but Doctors seem to not like it when you do your own research. I'm worried they'll think I'm a hypochondriac. And I've been mostly brushed off every time I complained about fatigue for years.

So I've had to try to figure it out on my own. I came to fibromyalgia, as an idea, because I realized my tiredness feels like a painful type of tiredness. Then searching this. So I don't know if it's fm, I just want to look into it.

It's A vague pain, not a sharp noticeable pain, a feeling vague enough that I think I've been mistaking it for just fatigue, but is actually fatigue and pain combined. Other symptoms are that I feel it every day, as well as oversleeping all the time, drowsiness when waking up, difficulty concentrating. I did a sleep study recently, no results. But sleep studies don't test for specific things like fibromyalgia.
 

cookiebaker

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Hello and welcome!

there is a simple test form you can print and fill out (there is an online version of it on the home page of this site, too, but that is hard to show a doctor)

simply enter this search term in your search engine of choice - 2016 Fibromyalgia Diagnostic Criteria
that should get you to a printable form (look for a pdf).
Fill it out and take it with you to show to your doctor, without fear of being put down, because that is the current standardized testing criteria for FMS - and if they are unaware of that, then definitely find another doctor.


I do understand about not wanting to sound like a hypochondriac, and the simple truth is, if you are being treated that way, you should try to change doctors. I finally got so frustrated with how crappy i was feeling, that i flat told my primary that there HAS to be a reason for it all.. I should NOT feel this crappy at only 58 yrs old. I was no longer going to accept the "it is all a part of getting older" brush-off - sorry, but no, it is not supposed to feel this bad. Basically it boiled down to me being sick and tired of feeling sick and tired.

You are your own best advocate - you should be able to stand up for yourself and not be ridiculed for doing so. Doctors are not gods. They do not know everything, and they certainly do not know how you are feeling physically - unless you tell them.

Do keep in mind that this discussion with your doc will most likely lead to a whole host of testing, mostly to rule out other underlying diseases/conditions, but the thing to remember is that there is often a fair bit of overlap with these other things and fibro - they are not mutually exclusive to one another. You may also discover other problems you had no idea about as well... for me, it was wide-spread osteoarthritis - i knew i had it in my hands, but i was not aware of just how wide spread it was - in my back, neck, pelvis (SI joints) and pretty much every other joint too.

In the mean time, there is lots of great information you can utilize here, whether you actually have FMS or not (probably do, but..) ... start by taking a look at this thread by sunkacola - plenty of good, general purpose advice to try to help yourself cope a bit better.

I hope you are able to find some relief soon.
 

JayCS

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I wonder if anyone here would chat with me about this one on one?
We can only private message once you've got up to 10 or 20 messages here, so whilst you're climbing there you can chat to us 1 to many and so "talking to someone" isn't a lie, you could even say chatting to quite a few people. 👐
I've been wondering if my every day fatigue is actually fibromyalgia, even though it feels like tiredness.
simple test form you can print and fill out
I've attached that form in case that's easier for you.

The problem for your plan is that we can't say it sounds like the symptoms of fibromyalgia at this point....

The "vague" pain you're describing sounds a bit like what I call my overall Ache as opposed to sharper local pains. This Ache even before my fibro-diagnosis was sometimes so severe I had to cry (like in wind or cold weather - and I 'never' cry (that's a 7 for me). However if I haven't been overdoing it (by doing more than a few hours of physical / strenuous activity per day) or been triggered, it's usually a 1-2. It also is related to my tiredness, like yours seems to be. And now I've got my local pains down it's my main pain type and if I overdo it can still occasionally reach crying point. So I can relate.

On the other hand, if the tiredness is going in the direction of fatigue like you mentioned, and not foremost pain, that would rather suggest getting ME/CFS getting looked into as well, because that fatigue can come with a bit of pain too.
Some docs even describe it as a "continuum", with fatigue/CFS on one end and pain/FM on the other, and most of us with some of both.

You might be developing fibro, but that doesn't help yet. So I'd ask your doc about what my docs first recommended to me before diagnosis: Getting bloods checked for Lyme, vitamin B12 & vitamin D, iron, zinc and supplementing any deficiencies, plus magnesium (best malate or glycinate) to take to see if it makes a difference.

Similarly the problem is that this isn't the point yet to look into fibromyalgia because you need to get other similar issues checked first, see below.

So at this point I can't see the sense of asking your doc about fibromyalgia, rather I'd suggest insisting on the severity of the symptoms, and praps they are increasing? And now calling it a deep, dull, severe Ache, or pain, not just tiredness.
oversleeping all the time, drowsiness when waking up, difficulty concentrating. I did a sleep study recently, no results. But sleep studies don't test for specific things like fibromyalgia.
Oversleeping and drowsiness are symptoms of ME/CFS rather than FM, where most of us have difficulty falling asleep, staying asleep or both.
Brain fog is common to both.
Although I had great difficulty staying asleep, 2 sleep studies didn't show much for me either.

Now you're saying "sleep studies don't test for ... fibromyalgia":
But there are no "tests for fibromyalgia": if you fulfill the criteria (attached) and a doc has tried to find other reasons and agrees, that's then a diagnosis. A sleep study does contribute in that it's excluded other things, e.g. sleep apnea, which would have been another likely possibility.

So my suggestions are not to focus on the diagnosis "fibro" apart from staying here, cos we can still help, like @cookiebaker said, but instead focus on sensing and describing all your symptoms as clearly as possible:
Don't "look good" when you go to the doc, e.g. go there directly after getting up,
don't downplay the symptoms in any way,
call it an Achey / painful fatigue and brain fog,
check and tell them how much the symptoms inhibit your activities,
ask for bloods, the above,
but also rheumatological (CRP etc.) and endocrinological (hormones etc.).

For symptom severity think about things like:
How much physical or emotional activity does your fatigue allow you per day.
How long breaks do you need after each of your certain activities?
How much % of concentration do you feel you have or have lost?
How intense are the 6 "main" symptoms in the diagnostic criteria?
If you think your doc will be peeved if you show him the form, which is possible, you could just do a run-down of the symptoms contained in it.

If they then don't progress, I agree with @cookiebaker: switch docs
(that's harder, but still is possible if you're in the UK)
and check with others here and websites like healthrising if ME/CFS might be a possibility too.

Hope this helps clear up some of your ideas/thoughts...?
 

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sunkacola

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I agree with Jay that this is not the time to be bringing up fibromyalgia with your doctor because without further testing, and especially looking into CFS/ME it will possibly (probably) appear to the doc that you are trying to self-diagnose and that's not what you want at this stage of the game.
If you approach the doc with a diagnosis you think you might have, it will be likely with most doctors to put them off and make it much harder to get them to listen to you.

Also, there is no need to rush any diagnosis at all. Let it take the time it needs so that you don't start assuming something that is not going to help you. If your tiredness is caused by something else and you or a doctor assume it is fibro, then you can miss out on getting treatment for the thing it really is, which may be very different from treatment for fibro.

Take a deep breath and trust the process. Get the testing and take it a step at a time.
 

AntiZombieOwl

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I agree with Jay that this is not the time to be bringing up fibromyalgia with your doctor because without further testing, and especially looking into CFS/ME it will possibly (probably) appear to the doc that you are trying to self-diagnose and that's not what you want at this stage of the game.
If you approach the doc with a diagnosis you think you might have, it will be likely with most doctors to put them off and make it much harder to get them to listen to you.
Thanks but if I don't ask the doctor to help me look into something specific, then I'll just get completely ignored. I'm trying *not to self-diagnose, but instead make guesses and find things to look into. Doctors will not seem to help me make those guesses or move any process of testing along. I seem to have to make guesses on my own. In other words, there is no process to trust, if there's no process at all. A catch 22. My fatigue is not a new thing at all, it's not as if I've suddenly expected a diagnosis at the first sign of it.
 

cookiebaker

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you could always do what i did... tell the doc that you are sick and tired of feeling sick and tired and you want answers. Real answers, not brush offs. And if they are not willing to try to help you find those answers, you will find someone who is. Sometimes you have to give them the metaphorical kick in the butt to get things going.

Not sure where in the world you are located, and I know in some places it can be hard to get a different provider, but sometimes that is exactly what is needed.

I will say it again - with emphasis, YOU have to advocate for you. The doctor wont do it for you. Don't go in all meek and accepting of nothing for an answer. Stand up for yourself and demand answers. Yes, it will take time to get them, but the process needs to at least be started, which it sounds to me like it has not been.
 

sweetkamie20

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Hi there 😁

If anyone here sounds more bold than you are comfortable being it might be because we got frustrated that being meek wasn’t getting us anywhere.

I was too meek and had severe symptoms on occasion for 18 years. All my meekness got me ZEROwhere. I can’t blame the doctors though. If I had done what cookie baker said, I might have found out a lot sooner!

Brace yourself, you are entitled to respect from the doctor just like you are entitled to respect from everyone else. Doctors don’t get a free pass. You got this! Get some lab work. What if this all boils down to a vitamin deficiency?! That’d be great to know 😍
 

cookiebaker

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I was too meek and had severe symptoms on occasion for 18 years. All my meekness got me ZEROwhere. I can’t blame the doctors though. If I had done what cookie baker said, I might have found out a lot sooner!
I was too meek for many years as well... in all things, not just health care
when i started driving truck is when i learned to stand up for myself, to insist on the same level of respect that the guys were getting (being female in a male dominated business will force you to stand up for yourself, lol) When i started it was at a time when there were VERY few women in the business.
When a warehouse receiver looked right past me to the guy behind me, I HAD to speak up, or continue to get ignored.

I do admit, sometimes i get a little pushy, and for that, i apologize if it offends anyone. That is not my intention.
 

sunkacola

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I agree with all of the above.
And many of us know from experience that if you say to a doctor that you think you might have X and would they please look into X, it will cause them to start thinking of you in negative terms, and fibromyalgia is probably the one that will do that the fastest and with the most doctors.

Take our advice or don't, because this is your life and you need to do what is right for you, but we speak from experience.

Also, since there is no test that can show you have fibro for sure, you will probably get somewhere a lot faster if you just keep saying that you hurt, that you don't feel good, that you are fatigued, etc. You need to have the tests that actually can show the presence of other things that could be causing this so that those can be eliminated. You don't want to have something bad that will get worse if not treated, and not test for it because your mind is already made up that it is fibro. Let the doctor test for what they think it might or could be.

If your doctor is resistant to what you say, and won't run any tests, you really do need to get a different doctor right away.
 

AntiZombieOwl

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Brace yourself, you are entitled to respect from the doctor just like you are entitled to respect from everyone else. Doctors don’t get a free pass. You got this! Get some lab work. What if this all boils down to a vitamin deficiency?! That’d be great to know 😍
Who knows. I tried getting my iron levels tested once, and thyroid another time. It was normal both times. I've tried taking a little extra vitamin D. I take a multivitamin but it doesn't have all the vitamins in it. Have tried quite a variety of different supplements and also herbal teas.
when i started driving truck is when i learned to stand up for myself, to insist on the same level of respect that the guys were getting (being female in a male dominated business will force you to stand up for yourself, lol) When i started it was at a time when there were VERY few women in the business.
When a warehouse receiver looked right past me to the guy behind me, I HAD to speak up, or continue to get ignored.

I do admit, sometimes i get a little pushy, and for that, i apologize if it offends anyone. That is not my intention.

I think that's ridiculous that any person with any bias against women is allowed to work with people at all. It's like they're willing to hire 5 year olds to do the job of working with the public. Literally, we shouldn't have to worry about dealing with five year olds in the bodies of grown ups. Where are all the responsible adults, people who actually want to be constructive and a service to the community? Especially doctors and other professions, where our lives depend on these people, and we have no choice but to rely on them.
 

JayCS

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ridiculous that any person with any bias .... willing to hire 5 year olds... Where are all the responsible adults
Well, that's the way of this world of course - we're all human. 5 year olds are being hired by 5 year olds. I don't see enough "responsible adults" to go round. And even if there were, some 5 year olds can hinder it. Ranting and raving a bit is good for mental hygiene, but I like to use that energy to stick up for myself if possible, like cookiebaker says, to find workarounds if not, and to try to do my part to improve the rest bit by bit with every word I use....
 

cookiebaker

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I think that's ridiculous that any person with any bias against women is allowed to work with people at all.
Unfortunately, this kind of attitude has been around for a very, VERY long time, and still persists to this day...
A lot of it stems from where and how we are brought up - each new generation learns from the one before it... and some of the ones before seem to have a hard time accepting that women can do most things that a man can do - those are the "women should be home in the kitchen, barefoot & pregnant" ones..

you also need to understand that this was years ago.. when there were very few women in the trucking industry.. when i started there were probably less than a dozen that actually drove on their own. Most women in trucks at the time were wives riding along with their husbands. Things have progressed a great deal since then.

even more sad are the ones that have issues with skin color/nationality..
Racism is alive and well, and even more scary, seems to be having a resurgence..
I guess I am more progressive than a lot in my age group, because I believe there is only one "race" in humankind.. it is the Human race... skin color, nationality, religious beliefs, economic backgrounds - none of those really matter - we are ALL human, and as such, we ALL deserve to be treated kindly and with respect.

"Dont judge someone unless you have walked a mile in their shoes (moccasins)" is an old proverb that I think all of us here can relate to.
 

sweetkamie20

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Who knows. I tried getting my iron levels tested once, and thyroid another time. It was normal both times. I've tried taking a little extra vitamin D. I take a multivitamin but it doesn't have all the vitamins in it. Have tried quite a variety of different supplements and also herbal teas.
The tests are all quite limited :rolleyes:. Even when they say, "everything is normal" I have very little confidence in them :cautious: BUT sometimes they do show a clear problem and it sure would be nice if your doctor can look into that. Sun is right, if you can't get the doctor to do anything, it's an important move to find a better one.

At the end of the day, if indeed you are dealing with fibromyalgia, I don't think you need to have a lot of confidence in doctors in order to get better. (As you have heard, doctors have nothing more to offer for fibromyalgia than a few medications that don't help most people or make things worse. They can't even tell you what fibromyalgia is.)

I think a good portion of us got better faster when we started looking at doctors more like professional (semi-educated) "guessers". Now that I know I am the only "expert" on fibromyalgia in my body, I am moving more quickly through various treatment options.

So, now it just comes down to you feeling confident about what you are dealing with - is it fibro, or x or y or z or all of the above. You will be "eligible" for a fibro diagnosis once other things get ruled out and for that your doctor needs to jump on board or take a hike :)
 

sunkacola

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I think a good portion of us got better faster when we started looking at doctors more like professional (semi-educated) "guessers". Now that I know I am the only "expert" on fibromyalgia in my body, I am moving more quickly through various treatment options.
Well said.
Everything changed for me when I decided that it was entirely up to me to manage the fibro and that I had to take charge of those efforts to the best of my ability on a day-to-day and ongoing basis.

Not only do I feel better, but since I now expect a lot less from doctors and are able to understand better that they are only human and don't have answers that are not available to them, I feel better about doctors.
Of course I would not for one minute put up with someone who was not paying attention to me or being dismissive. Or racist. Or....anything else that makes me uncomfortable.
 

Zahnj

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For me I did change primary care providers to one who would follow up with specialty doctors.

I saw a therapist/psychiatrist who worked in the same clinic, and took meticulous notes to present to the specialty doctor that showed they ruled out - in my case mental health diagnoses.

I brought an elder family member with me to my appointment. To help me with clarifying and advocating.

I would state I am concerned about xyz symptoms, and I would say that if you (the doctor) don't feel the need to follow up with any other procedures I want that written in my patient notes.

Once I said that they'd start listing off procedures and their process of ruling out possible causes.

I hope that helps.
 
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