Recently diagnosed. Looking for a specialist. Does anybody know of a doctor who specializes in fibro in Toronto to Ottawa or norther NY state?

Cutiegirl

Member
Joined
Sep 18, 2022
Messages
14
Recently diagnosed. Looking for a specialist. Does anybody know of a doctor who specializes in fibro in Toronto to Ottawa or norther NY state?
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,790
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I am looking for a doctor who is willing to do all the testing vs. my GP who only did one blood test and an x-ray to rule out arthritis. and than gave me this diagnosis.
Very understandable!
How about going to others (different GP or specialists) for further exclusion first? That's how I have to do it here.
The fibro specialist might only come in afterwards according to the treatments you're looking for - esp. if you want the med route, otherwise maybe functional etc. I (have to) make do without, after 50+ docs and fibro clinic, but knowing the 'research' etc.
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
270
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
to my knowledge, there is no medical "specialty" specifically for fibro - it most often falls under the umbrella of rheumatology.
my diagnoses came from my physical medicine doc (physiatrist), but only after other possibilities had been ruled out - things like RA, Lupus, Lyme disease, and so on.
I did come back with an "abnormal" for the ANA Immunofluorescent test (mild at 1:80 titre), but all other inflammatory markers were negative..

my typical average BP is around 108/65 - but it has been like that my entire life, so not something i am concerned about.. in fact, i am grateful for it because the rest of my family tends to run in the high range.
 

JayCS

Legendary member
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Joined
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Messages
1,790
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
to my knowledge, there is no medical "specialty" specifically for fibro - it most often falls under the umbrella of rheumatology.
Definitely right.
We have to distinguish between
a) docs that do tests to exclude similar conditions,
b) docs that then diagnose fibro and
c) docs that have decided (taken or bitten the bullet) to specialize in treating it, whatever their specialty.
All three can be GP, rheum, neuro, orthopedist, pain...

Cutiegirl, your GP seems to think they can do all of that, a + b + c.... :rolleyes:
And that's right, if they were able to and wanted to do it properly... :rolleyes: :rolleyes:
But like you say, gently persuading them is probably the best start ...
You could hint what the ACR 2016 criteria say: that you can still have other conditions next to FM.

At the other end
a) I had 8+ specialties for excluding similar conditions,
b) my 2nd rheum diagnosed 3 months after my 1st didn't, and
c) she gave a pain killer that harmed and said 'continue exercising, you're doing fine', 1 orthopedist & 4 pain docs tried harming meds and 4 clinic rheums let me try many PT forms and "pain coping" and gave me a pretty good book to read, which I knew most of though.
Everything that helped I got/learnt from 2-3 gentler PTs and the web, esp. here.
 
Last edited:

sunkacola

Moderator
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Joined
Dec 2, 2016
Messages
2,174
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
To address the comments about the moderators not responding to these requests about the doctors lists.
I am sorry you got no response. If it had come to me, you would have had at least a reply but it did not.

As for updating the list, I am not in charge of that. But I think that it would be a lot of work to keep that updated if it covers two large countries. Doctors in various places hang up shingles every day, retire every day, move every day, change what they are doing every day. The truth is that it would be pretty much a full time job to keep up with all of that and update it as often as it would need to be. Also noting that many doctors who are good with fibro patients do not in any way advertise this fact. They are GPs or Internal Medicine doctors or family doctors and there's no way to know if they are any good with fibro people or not. I don't think there's really any way to keep it current.

I could start a thread if you want, and you list on it the doctors you have gone to who were really good and where they are. My big concern about that is that there would be replies on the thread that would take tangents away from the purpose of the thread, and people posting complaints about doctors rather than just listing the good ones, whereupon the thread would end up closed. So it doesn't seem like a good way to go about it to me.

As pointed out, we are volunteers on a free forum. It might be true that there shouldn't be such a list unless it is kept current, but it is also true that some people have found a doctor by looking at it. It might at least be a place to start.

Of course, it is regrettable that the list is not up to date, and I am sorry about that, although there's nothing I can do about it.
 

cookiebaker

Senior member
Joined
Jul 26, 2022
Messages
270
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
I am not complaining about forum mods not doing this stuff.. I do not expect you to do that kind of stuff - not your job.
the email I sent was to the forum OWNERS.. via the "contact us" form accessed from the home page.. as it should have been.
would it be a big job, yeah, it would, but it would be made easier by collecting info sent in by users (like the email i sent) and acting on it (which has not happened).

I honestly do not expect it to be perfect - a list like that never is.. but it could be a bit more up to date than it currently is.

as i have said before, the clinic i go to is huge.. there are literally hundreds of doctors there in over 150 different specialty areas.. and they come and go all the time - new docs finishing up residencies, older ones retiring.. etc..
but put yourself in my shoes.. you go to the list for your state/region/country, and your city.. Oh boy.. 10 docs listed as specializing in fibro care.. so you start researching the individual names only to find out this or that doctor is no longer at that clinic/in that area, and has not been for quite some time.
The one remaining name from that list that is still there is iffy.. he used to get good comments/ratings from patients, but not so much anymore, which leads me to believe that he is getting ready to retire.. (he has been a doc since 1983, rheumatology specialty since 1988)
And we wont even go into the question of whether they are taking new patients or not... that is a whole different ball of wax.

Perhaps I am just being too whiny about it and need to let it go.. Sorry I have taken up so much space about it. 😔
 

sunkacola

Moderator
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Joined
Dec 2, 2016
Messages
2,174
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
but put yourself in my shoes.. you go to the list for your state/region/country, and your city.. Oh boy.. 10 docs listed as specializing in fibro care.. so you start researching the individual names only to find out this or that doctor is no longer at that clinic/in that area, and has not been for quite some time.
The one remaining name from that list that is still there is iffy.. he used to get good comments/ratings from patients, but not so much anymore, which leads me to believe that he is getting ready to retire.. (he has been a doc since 1983, rheumatology specialty since 1988)
And we wont even go into the question of whether they are taking new patients or not... that is a whole different ball of wax.
I don't have to put myself in your shoes because I, like many of us, have been there! Many times. Try getting a list of doctors (of any kind) from an insurance company, and see how real or up to date that is!

The forum owners do not involve themselves with the day to day operations of each forum because they own a platform on which many - perhaps dozens or more - forums are held. They are not going to spend the time to make sure something on one of the forums on their platform has a list that is or is not being kept up to date, nor is it really their job to do so because each forum has its own administrators and moderators and that is probably why you never got a response from the owners.
Perhaps I am just being too whiny about it and need to let it go.. Sorry I have taken up so much space about it. 😔
While I completely empathize and you don't need to feel bad about asking these things, there's nothing further that can be done about it, as least as far as I know. The list may have been up to date when it was put up, but it has not been possible to keep it updated. I do not refer people to that list myself. If you do refer someone to it, it might be best to inform people that the list may not be accurate so they don't get frustrated.
 
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