Dismissed Again...

PandaMarie88

New member
Joined
Nov 13, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
01/2012
Country
US
State
TX
So I just recently moved to a different city and I needed to find a new PCP. Unfortunately, do to crappy circumstances, I haven't had a doctor for months now and I haven't had any kind of medication other than over the counter crap which doesn't really help with anything other the severe osteoarthritis in my knee and ankle. So I finally got an appointment and I was finally feeling a little optimistic that I would finally be getting some help again. As soon as I told her about being diagnosed with fibromyalgia, She went into a whole shpeal about now there's been new methods lately for treating fibro. She then proceeds to tell me about how depression can create physical symptoms and it's crazy what the brain can do. She didn't even do any kind of blood work or any other kind of tests. All she did was ask me to fill out a few mood and mental questionnaires and write me a script for Cymbalta and give me a list of psychiatrists to possibly visit. She didn't even wanna schedule me for a follow-up. It's just so beyond frustrating having to find a new doctor only to be dismissed as crazy because you hurt constantly. I was so pissed off I just sat in the car and screamed afterwards. I don't really have anyone who understands how this feels that I can talk to and it's just really starting to get bad again.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,129
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Well, we here understand. So at least there's that.
I do sympathize with you completely. It's beyond infuriating to be told that "it's all in your head". I don't know what is available where you live but you could do some research and see if there is anyone in your area who treats fibromyalgia. Even call some doctors and ask them, so you don't go through this over and over. And/or you could possibly visit a pain specialist or clinic? They would be more informed than this doctor you saw.

It is very important to find someone who is willing to do the tests that are appropriate according to your symptoms in order to rule out the other things that could be causing them. If a doctor is not even willing to do those tests, they are of no use to you at all. If you have already received a formal diagnosis of FM, then try going straight to a pain clinic if there's one in your area. Might cost you, but at least you'd be heard.

In the meantime, see if any of the suggestions in the post that is a sticky at the top of the General forum help you. The post is called "Advice for managing Fibromyalgia" and it has a lot of thing you can try to see if they help. Most people find that at least some of it helps at least somewhat, so it's worth trying. Let us know what you are trying and how it is going for you!

And in the meantime, feel free to come here to vent and ask questions, or anything else you need to do. We are here to help.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
363
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I'd second shopping around docs, several kinds, too. But one of my psychiatrists is great: He knows and defends me that it's not in my head. I'm also sure after my first visit he did his homework and was better on fibro after. He's helping me think about symptoms, no meds, and how to manage rehab. Psychologists didn't help me, because I've done a lot of that anyway, but if you haven't I'd always consider counselling too, which could help you implement sunkacola's advice-suggestions. Not because it's in your head, but because your head is a valuable resource to find solutions.
 

BML

New member
Joined
Nov 9, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
04/2013
Country
CA
I have tried every antidepressant for fibromyalgia as they say this type of medication can help with pain etc. With my experience any antidepressant is garbage. I swear every doctor prescribed that to everyone. I try eating healthy, taking vitamins and daily stretching. The only medication that worked for me were opioids for when my pain got unbearable. The doctor ended up taking it away as he said it’s not a long term medication. Now when I get a bad flare I suffer and have little to no pain control.
 

Drummer76

Active member
Joined
Apr 15, 2018
Messages
43
Reason
DX FIBRO
Diagnosis
02/2006
Country
US
State
IN
I went to several doctors and found that an LPN will listen more then an MD will,just my experience.
BML have to agree,antidepressants do nothing but screw your head up. Been there already
 

TJB

Active member
Joined
Aug 17, 2020
Messages
34
Reason
DX FIBRO
Diagnosis
06/2011
Country
UK
State
CT
Hey, Hope your day isn’t too bad (fibromyalgia wise).
Unfortunately this attitude of Gp’s and Consultants constantly comes up where they only want you to be directed to mental health.
Im diagnosed both CFS/ME & FM, and there’s cross over symptoms with that.
At the beginning a Neurologist went full on ‘mental health’, didn’t even do tests he intended to (bank holiday hospital admittance...I say no more lol).
I found this v upsetting which looking back worsened my conditions. I resisted the MH referral.
I was lucky at that time I had an excellent GP, knew me well, and was adamant that was not the correct route. A GP your unknown to can be unhelpful sometimes, I found that out myself, 8 years after diagnosis after moving area.
Some may find MH meetings helpful, personally not for me. They can’t fix the problem, but having someone to talk to can relieve any stress or anxiety, if it’s even there.
I had to find my own way, learning to pace myself, accepting help, adjusted things in my life I now struggle with, automatic car, small food cartons (large ones too heavy)etc. accepting diagnosis alone was a start for me! Just tools to help me, not remove my conditions.
Did the GP tell you exactly what this new way of treating FM is? Just MH referral is not acceptable.
Have a look on the NICE guidelines etc...see what it says there.
You could see another GP, or speak to mental health and explain all, be honest with them.
Dr’s are still trained that FM CFS/ME is mental health! I say no more. SomeDr’s are far more supportive than others.
x
 

Drummer76

Active member
Joined
Apr 15, 2018
Messages
43
Reason
DX FIBRO
Diagnosis
02/2006
Country
US
State
IN
Hey, Hope your day isn’t too bad (fibromyalgia wise).
Unfortunately this attitude of Gp’s and Consultants constantly comes up where they only want you to be directed to mental health.
Im diagnosed both CFS/ME & FM, and there’s cross over symptoms with that.
At the beginning a Neurologist went full on ‘mental health’, didn’t even do tests he intended to (bank holiday hospital admittance...I say no more lol).
I found this v upsetting which looking back worsened my conditions. I resisted the MH referral.
I was lucky at that time I had an excellent GP, knew me well, and was adamant that was not the correct route. A GP your unknown to can be unhelpful sometimes, I found that out myself, 8 years after diagnosis after moving area.
Some may find MH meetings helpful, personally not for me. They can’t fix the problem, but having someone to talk to can relieve any stress or anxiety, if it’s even there.
I had to find my own way, learning to pace myself, accepting help, adjusted things in my life I now struggle with, automatic car, small food cartons (large ones too heavy)etc. accepting diagnosis alone was a start for me! Just tools to help me, not remove my conditions.
Did the GP tell you exactly what this new way of treating FM is? Just MH referral is not acceptable.
Have a look on the NICE guidelines etc...see what it says there.
You could see another GP, or speak to mental health and explain all, be honest with them.
Dr’s are still trained that FM CFS/ME is mental health! I say no more. SomeDr’s are far more supportive than others.
x
The Dr I see now doesn't view fm as a mental thing and hasn't referred me to any mental thing. She did find a good pain management dr who knows fm well and again no mental thing brought up.
I'm sure it helps some but not for me either.
 
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Lipshitz2

New member
Joined
Oct 6, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
MI
The first thing out of one rheumatologist's mouth that I saw was "I don't believe in fibromyalgia." One physical therapist told me that I needed to see a therapist to "fix" my problems before the things that they would do would help. The latest rheumatologist said that rheumatologists don't treat fibro any more because there's nothing that they can do, so they don't want to waste their time on it. I've given up on doctor's completely for my fibro problems -- I don't even bother to say anything to my GP about them anymore.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
363
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I understand fully - and the ones who believe may be (and are!) out there somewhere, but even then most can't put themselves in our position, and they won't even be able to when they can measure causes & effects reliably one day. The only reason I wouldn't've wanted to miss my 40+ docs is to rule out other causes. And after all, they found 3 things: a spinal tumour, probably OK, cardiovascular issues (in time to stop them having effect) and 2 root inflammations (!very helpful). But only the last was something to do with the fibro.
I've developed the self-confidence to stand for this 'diagnosis' and stand above such silly, pathetic docs, whilst acknowledging mine were doing their best. Pain & sleep diaries, pinpointing & alleviating reasons for pain, keeping to/under the invisibly moving sweet spots more and more = getting slowly better at pacing and (after trying 15) finding one physiotherapist (cryotherapy & TCM/acupressure) who is helping. Interestingly she has fibro herself...
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,129
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
I also understand. Many of us here do. We have been through all of these things. For a doctor to say they don't "believe" in fibromyalgia is absurd. I want to say to that person,
"OK, you don't believe in fibromyalgia. Fine, you are a doctor, then tell me what is causing so much pain for so many people all over the world, and ruining their lives. If you say that all those tens of thousands of people are causing their own pain with their minds, or are making it up, that is ridiculous and you should have more compassion and curiosity if you are a doctor!"

There. I told him off for you.
People like that shouldn't even be doctors.
 

NahSG

New member
Joined
Feb 10, 2021
Messages
9
Reason
DX FIBRO
Diagnosis
08/2003
Country
US
State
UT
We should be able to shop around for Drs we are compatible with just as we shop around for a hair dresser who knows what their doing and listens to what we want and need. It should be a given that not all Drs and patients are compatible even within a given field. You need too"shop" around to find a Dr that believes Fibromyalgia is not just, "depression hurts"!
They have finally proven that Fibro is not just depression, keep looking till you find one who understands this. We are NOT shopping for drugs we are shopping for knowledge and understanding.
 
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NahSG

New member
Joined
Feb 10, 2021
Messages
9
Reason
DX FIBRO
Diagnosis
08/2003
Country
US
State
UT
I understand that mentality completely.
I don't even mention Fibromyalgia as a problem anymore. I have broken myself down into small manageable symptoms listing things they understand like High Blood pressure (because more pain causes higher BP), arthritis in my spine (because it's visible to them and fibro just exacerbates the issue) etc.
It's pretty sad we have come to this point simply because they have to treat every problem with a drug. I wonder if they even teach how to treat and diagnose for a resolution not just a band-aid (drug) in medical school anymore.
Fibromyalgia, CF/ME isn't a Mental Illness, all three talk therapy and anti-depressants in the world can't fix what is obviously a physical ailment.
 

Drummer76

Active member
Joined
Apr 15, 2018
Messages
43
Reason
DX FIBRO
Diagnosis
02/2006
Country
US
State
IN
We should be able to shop around for Drs we are compatible with just as we shop around for a hair dresser who knows what their doing and listens to what we want and need. It should be a given that not all Drs and patients are compatible even within a given field. You need too"shop" around to find a Dr that believes Fibromyalgia is not just, "depression hurts"!
They have finally proven that Fibro is not just depression, keep looking till you find one who understands this. We are NOT shopping for drugs we are shopping for knowledge and understanding.
I agree with you on being able to shop around for a Dr a person is compatible with. I was lucky when Dr retired to have found a better Dr who actually listens to me, believes FM is pretty serious as far as life changing and has helped me to the best of her ability.
My problem is the medications for FM I can't take and it's caused a problem. She knows I refuse any sort of narcotic pain medication as well and doesn't try to push me on them.
Recently had a heart attack and had to make a lot of changes from there..stopped smoking change of diet more meds to take
1 medication (statin) was nearly killing me and she reached out to my cardiologist and explained to him my other health issues and said he needed to change it since it was causing muscle pain that I couldn't handle anymore. I thought the pain from FM was bad,the statin made it much worse. Got it changed and now I have been good thus far. I've been pretty impressed with my dr and she won't rush me out of the office. She always makes sure I have no more questions or concerns to talk about before the appointment is done and if something comes up,she'll see me as soon as she can,within a few days. Hopefully she will be around for awhile so I don't have to look for another Dr anytime soon.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
363
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I'm lucky that my insurance means I can shop around, been to 45 different docs in almost all areas the last 18 months. But they harm far more than they help (except cardiovascular). Each helped a tiny little bit in their own way, if only to exclude or try things. Shopping around for a good physio I find much more important. Altho of 15 only 2-3 really helped with fibro, that's been my main treatment (first 3 months of gentle osteopathy, then since June cryotherapy & since September acupressure).
I agree to break it all down, watching, pinpointing, but that again doesn't help my docs, because they can't see most of it. It helps me & my physio a lot however...
 

TJB

Active member
Joined
Aug 17, 2020
Messages
34
Reason
DX FIBRO
Diagnosis
06/2011
Country
UK
State
CT
A consultant , a nice one 😀, once told me that Dr’s are taught at medical school not to openly admit they don’t understand medically a condition. Said they will either just ignore it or take you down a diffe route. Maddening.
Doctors contracted to nhs are required to update themselves on medical conditions and use NICE guidelines...but they don’t . (gp’s are self employed and just work on contracts to nhs..nothing more. They run lucrative self employed businesses).
Trouble is they just keep getting away with it...doesn’t help us eh 😩
 
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