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thankyouhon

New member
Joined
Aug 27, 2016
Messages
6
Reason
DX FIBRO
Diagnosis
07/2016
Country
US
State
NY
It seems that with fibromyalgia doctors don’t take it as seriously as diseases with known causes. I had a doctor ask me if I was stressed out and tell me that I’m too young and shouldn’t be having chronic pain. Another doctor saw me for five minutes and told me that a lack of serotonin causes fibromyalgia (i know some research suggests this but he stated it as if it was fact). When I said that having sugar causes excess pain, a doctor looked at me skeptically. Honestly, I feel downright disrespected sometimes.

I don’t want to be rude, so I just choose to say nothing in most cases. But I’m sick of being talked down to or ignored. It has gotten better lately but I want some advice for the future. What can I do when doctors seem to be unhelpful? I want to tell them in a nice but firm way that it's a tricky disease and speaking to someone in absolute terms is more harmful than not. I hope I'm wording this right. Even if it doesn't help me maybe they will be more mindful with future patients dealing with fibro.

Any help would be appreciated. :)
 
Pain Dr. May be your best bet. If you have one close by ,request to see him or her. You may get a listening ear. If your insurance doesn't require a refurrall, do some homework, you can find so much on the cp.
Feeling your frustration .
 
I have experienced the same thing with my primary care physician. When I first came to him needing a referral he told me that a rheumatologist would refuse to see me because my lab work came back normal. I am 24 years old and practically every doctor I saw wrote me off and explained my aches and pains away, refusing to give me any treatment or suggestion. I finally found a rheumatologist that diagnosed me with fibromyalgia 4 months ago. Prior to this I had been misdiagnosed with a nerve condition. My only advice, frustrating as it seems, is to never quit looking. Finding doctors and explaining symptoms over and over again is very frustrating, but if your gut is telling you something it wrong then there probably is. If your insurance lets you choose a doctor find the best one that accepts your insurance and never stop trying to help yourself. I found this really amazing video by a rheumatologist at UCLA Medical, it helped me a lot and shed a lot of light about Fibro.
Fibromyalgia | Dr. Ami Ben-Artzi - UCLA Health Search on youtube.

Good luck, I hope you find an awesome doctor that is willing to work with you.
 
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Ah the conundrum of being taken seriously. Certain factors can increase not being taken seriously, for example:

Being a woman (in most places)
Being non-white in majority white countries, unless the disease occurs mostly in non-white populations and as such can become somewhat opposite
Being fat (in most places)
Having a mental illness in particular depression, anxiety, or especially bipolar disorder (in almost everywhere)
Not dressing nice enough/feminine enough (if female)/masculine enough (if male) (in most places)
Dressing too nice for a chronically ill person! (In some places)
Being autistic/aspergers/asd (if pain related) (in some places)
Possibly your employment if you are employed, or being disabled from work if you are
Other things vary by place, culture, and passive bias

I've had my fair share of direspectful doctors, usually I put up with them, leave, and don't return if that is an option and replace them- if they act like that they have no place on my team and my problems are complex so I need a team of some kind. After a recent incident, I think I am done with this, as being passive nearly caused me more problems then being afraid of speaking up was worth.

You can try redirecting- some people find this effective. (Ex... I understand that my weight may be contributing to this problem, but what can I do in the short term to help my pain so I can accomplish that. Or: I think there has been a miscommunication, I am not interested in [x] treatment, but I was wondering what else you could suggest or if there would be other tests we could do to help find something that would be helpful.)

You can basically tell a doctor that you are going to leave because they don't appear to be a good fit, the okay or even good ones will like suggest you start over. The bad ones may be quite rude.

If you are told by a doctor that they "don't treat fibro" you have the option of leaving then, or asking for a referal to someone who does... You don't necessarily need to ever use that referal, but sometimes it can be a good segway to escaping out the door! If you feel like being confrontational you can ask them why they advertise they do treat the disorder if they did, or write a letter about your experience and send it to whoever refered you to them. If it was your insurance you can report the doctor to them.

If the doc somehow crossed an ethical line, you also can report them to the board or professional group they are licensed with, or their practice [if they don't own it], hospital. I don't necessarily think this requires legal follow up, it can just be a complaint and not a suit.

One important thing you could do is tell the receptionist when you make the appointment that you are there for a "fibromyalgia related complaint" or something like that- made an appointment like this once and was told straight out the doctor didn't treat fibro... Which at least is preferable over being lied to for years like my doc who was treating me who said she did, did nothing, and never admitted to telling other patients she didn't treat it. Woops.

When you get to the initial appointment say something like "I'm interviewing for a doctor to treat my issues including/particularly fibromyalgia," and "since fibromyalgia is my primary problem could you tell me a little bit about how you view this condition and how you would go about treating it typically." And things like "I feel I am an important part of my health team, how do you feel about a patient asking questions or doing their own research."

__________________________________________________________________________________________


One important thing to realize that many doctors don't seem to get, which is ironic because it's basic MD stuff like I'm a "fake internet doctor" (joke I am not a real doctor!) and I know this:
Fibromyalgia is currently considered by many to be a syndrome. In medicine "syndrome" has two particular, different meanings...

Syndrome, genetic
A verifiable genetic condition with noticeable and defining characteristics, example Down syndrome.
The cause is typically known exactly in the genetic code, prior to the cause being known the term "association" is often used instead
In these the "s" in syndrome is often lowercase.

Syndrome, general medical
A collection of symptoms
Typically has no known specific or provable cause, but is observable often enough to deserve a designation or name.
Can be related to certain diagnoses, evolve into one unique condition diagnosis, or simply be an observable cluster or phenomena of health issues. In the early stages can include a heterogenous mix of causes, but symptomolgy can be essentially the same or similar regardless.

In both cases, syndrome describes some type of pattern or co-occurence of features that is noticeable in some segment of a population.

Fibromyalgia Syndrome is not a genetic syndrome at this time.
Which means it is a general medical syndrome.
Which means it is at its core a collection of symptoms, and in particular we do not know the exact cause as of yet and cannot connect it to anyone genetic marker, it also signifies that most researchers do not consider it to have one underlying genetic cause, even if it runs in families.

It is also a fairly broad indication that we do not necessarily know of or have one particularly effective treatment. Syndromes of the non-genetic kind tend towards also being non-damaging in the same way a "disease" with a known staging or progressive system may be known. The word syndrome actually contributes a generally benign concept in a lot of the more commonly known syndromes- but it is not the rule. Syndromes are more meant to function as a categorizing label rather than a specific diagnosis or treatable condition I think... They also signify a "relation between symptoms more prevelent then if simply occuring by chance" to paraphrase wiki.

Commonly known non-genetic* syndromes:
Chronic Fatigue Syndrome (CFS)
Irritable Bowel Syndrome (IBS)
Premenstrual Syndrome (PMS)
Toxic Shock Syndrome (TSS) **
Sjogren's Syndrome or Sicca Syndrome (SS)
Asperger's Syndrome (AS)

*No specific gene or chromosome tied to these as of yet
**This can kill you

Now with all that said, some doctors and patients will still consider things labelled with "syndrome" to be definite diseases, with known etiologies we have yet to discover fully. I tend to think being able to think both ways can be helpful from a doctor. Just because something is a syndrome doesn't make it less serious than a disease, and doesn't mean that the symptoms can't progress into a damaging, progressive or systemic problem. It also doesn't mean the symptoms the patient have are not disabling, life altering, and majorly impactful on that patient and their family/friends/etc.

What is important is that if you are at a doctor they view whatever you are seeking treatment for as a medical condition that something can be done for. Conditions have negative impacts on a person's life.
 
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