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

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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

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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

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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

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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

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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

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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

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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.
 

AhZo

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Kingston? That is a bit far from Toronto. I am in Markham.
My doctor is downtown, but he referred me to a pain clinic in Thornhill: Wilderman Clinic

I am still new, so I do not have an opinion yet. We have only tried one thing so far
 

sunkacola

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The thing about pain clinics is that they are most often going to prescribe pain mediaction because that is essentially their function.

If they can help in other ways, great.
But take great care with the medication if offered. Many are addictive, others have unpleasant or even serious side effects. You seem to be a person who pays attention to your body, so maybe I don't need to say this, but I am saying it anyway because it's so important.

Before you take any pain medication I recommend that you try non-medication routes first to see how far that will take you.
 

AhZo

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The thing about pain clinics is that they are most often going to prescribe pain mediaction because that is essentially their function.

If they can help in other ways, great.
But take great care with the medication if offered. Many are addictive, others have unpleasant or even serious side effects. You seem to be a person who pays attention to your body, so maybe I don't need to say this, but I am saying it anyway because it's so important.

Before you take any pain medication I recommend that you try non-medication routes first to see how far that will take you.

I am not familiar with this forum software, although it may be a skin on something I am familiar. HOwever, I do not know if this is directed at me.
I imagined that a pain clinic is the place to go when experiencing pain, no?
I do not understand non-medication routes. Within the context of the pain clinic, it seems these are ways they address fibro.
 

cookiebaker

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493
Reason
DX FIBRO
Diagnosis
07/2022
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US
State
WI
I am not familiar with this forum software, although it may be a skin on something I am familiar. HOwever, I do not know if this is directed at me.
I imagined that a pain clinic is the place to go when experiencing pain, no?
I do not understand non-medication routes. Within the context of the pain clinic, it seems these are ways they address fibro.

Pain clinics can be useful in the right situation, but may not be all that helpful for fibro type pain, which is different than say pain from a surgery or other injury. I regularly go to our pain management clinic for help with my arthritic neck and low back. They are also the resource for my low dose N(altrexone) that I am currently trying for the fibro pain. But I will not accept narcotics from them (not that they have tried to prescribe them to me) - just not something i want.

I guess we are not saying "dont try it", but more a "try with caution" - pain clinics also commonly prescribe pain medications - some of which are addictive narcotics, which in truth are generally not all that helpful for fibro pain. Granted, the medical community in general is moving away from narcotic pain meds these days, but there are still those that wont give a second thought to prescribing them. Narcotics are definitely something to stay away from if at all possible.

Non-medication routes are forms of managing your fibro without prescription medications. Things like diet, OTC supplements (preferably with a doctor's supervision), mild to moderate exercise/stretching (if you can) and mindfulness are all forms of non-medication therapies.

Mindfulness can be in the form of yoga, tai chi, meditation, etc.. being aware of your limitations, and forgiving yourself for not accomplishing every little thing on your list is also a form of mindfulness. So you didn't clean the entire house in one day, big deal.. it is not the end of the world.
sometimes even cleaning just one corner, or doing the sink full of dishes is about all one can manage, depending on how they feel that day.

I spent most of this past week doing as little as I possibly could get away with, preparing myself and saving my energy for making Thanksgiving dinner for my partner and myself yesterday. And today, I hurt and am tired, but proud of myself for putting on a pretty good spread, considering it was just the two of us, LOL. It will probably take me several days to finish the tidying up but I am ok with that. It was worth it, to me.
 

AhZo

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DX FIBRO
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Pain clinics can be useful in the right situation, but may not be all that helpful for fibro type pain, which is different than say pain from a surgery or other injury. I regularly go to our pain management clinic for help with my arthritic neck and low back. They are also the resource for my low dose N(altrexone) that I am currently trying for the fibro pain. But I will not accept narcotics from them (not that they have tried to prescribe them to me) - just not something i want.

I guess we are not saying "dont try it", but more a "try with caution" - pain clinics also commonly prescribe pain medications - some of which are addictive narcotics, which in truth are generally not all that helpful for fibro pain. Granted, the medical community in general is moving away from narcotic pain meds these days, but there are still those that wont give a second thought to prescribing them. Narcotics are definitely something to stay away from if at all possible.

Non-medication routes are forms of managing your fibro without prescription medications. Things like diet, OTC supplements (preferably with a doctor's supervision), mild to moderate exercise/stretching (if you can) and mindfulness are all forms of non-medication therapies.

Mindfulness can be in the form of yoga, tai chi, meditation, etc.. being aware of your limitations, and forgiving yourself for not accomplishing every little thing on your list is also a form of mindfulness. So you didn't clean the entire house in one day, big deal.. it is not the end of the world.
sometimes even cleaning just one corner, or doing the sink full of dishes is about all one can manage, depending on how they feel that day.

I spent most of this past week doing as little as I possibly could get away with, preparing myself and saving my energy for making Thanksgiving dinner for my partner and myself yesterday. And today, I hurt and am tired, but proud of myself for putting on a pretty good spread, considering it was just the two of us, LOL. It will probably take me several days to finish the tidying up but I am ok with that. It was worth it, to me.

Ah, I see. THank you for that. I think Canadian pain clinics are a bit different than American ones. I do not think they get [political ranting removed]. The pain clinic is the one pushing the duloxetine, which from my 'resurch' (aka "the googles") is a common starting point.

I used to do yoga, and pilates, and exercise regularly. Now I can not walk without at least a cane, but have a walker for the tougher days.
Congrats on Turkey Day dinner! I know making a meal takes it out of us. I cook about twice a week, usually recipes that make for great leftovers or freeze well. If I do a full on French meal, then I need a few days to recuperate. My other half does not mind eating beef bourguignon for a few days, as long as I make fondant potatoes (his current fave).
Congrats for making it through Turkey Day! Rest well & proud.
Our thanksgiving was last month. I think I made carnitas (Mexican pork dish).
 

cookiebaker

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Joined
Jul 26, 2022
Messages
493
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
Ah, I see. THank you for that. I think Canadian pain clinics are a bit different than American ones. I do not think they get [political ranting removed]. The pain clinic is the one pushing the duloxetine, which from my 'resurch' (aka "the googles") is a common starting point.

I used to do yoga, and pilates, and exercise regularly. Now I can not walk without at least a cane, but have a walker for the tougher days.
Congrats on Turkey Day dinner! I know making a meal takes it out of us. I cook about twice a week, usually recipes that make for great leftovers or freeze well. If I do a full on French meal, then I need a few days to recuperate. My other half does not mind eating beef bourguignon for a few days, as long as I make fondant potatoes (his current fave).
Congrats for making it through Turkey Day! Rest well & proud.
Our thanksgiving was last month. I think I made carnitas (Mexican pork dish).
Thank you, AhZo 🤗

and yeah, it can take a lot out of one to do a lot of cooking. I tend to occasionally take shortcuts when I can do so in a reasonably healthy way.. Birds Eye steamer bags of rice & veggies are a huge time saver for me. no chemicals in them, just the natural ingredients.
I have never had fondant potatoes but they sound amazing! Sadly, however, at the moment, i am trying things without white potatoes for a while... even yesterday, I had roasted and mashed sweet potato instead of regular mashed potatoes but i did make some for the partner. LOL

and yeah, duloxetine is a pretty common starting point with meds.. gabapentin is another.. I have been thru a bunch of the "common" ones with not so stellar results - mostly just side effects and no pain relief. as a last resort am trying one more not so common one.. (the forum software flags the common initials so I try not to use them)

I also use a cane if I have to go more than say 30-40 feet with nothing to grab on to.. the low back just kills me without a bit of support. My partner brought home a walker so I have one if I should need it, but so far I have not.
 

AhZo

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Thank you, AhZo 🤗

and yeah, it can take a lot out of one to do a lot of cooking. I tend to occasionally take shortcuts when I can do so in a reasonably healthy way.. Birds Eye steamer bags of rice & veggies are a huge time saver for me. no chemicals in them, just the natural ingredients.
I have never had fondant potatoes but they sound amazing! Sadly, however, at the moment, i am trying things without white potatoes for a while... even yesterday, I had roasted and mashed sweet potato instead of regular mashed potatoes but i did make some for the partner. LOL

and yeah, duloxetine is a pretty common starting point with meds.. gabapentin is another.. I have been thru a bunch of the "common" ones with not so stellar results - mostly just side effects and no pain relief. as a last resort am trying one more not so common one.. (the forum software flags the common initials so I try not to use them)

I also use a cane if I have to go more than say 30-40 feet with nothing to grab on to.. the low back just kills me without a bit of support. My partner brought home a walker so I have one if I should need it, but so far I have not.


Cooking/Shortcuts: I am the opposite. About the only pleasure I have left in life is food,which made the low FODMAPS escapade especially heinous for me (cutting out everything I enjoy in the last bastion of anything positive in my life - it felt). I make everything from scratch if I can. I make mayonnaise, and mustard for burgers, in addition to the buns (can not knead the dough anymore so we bought a bread maker). Some things I have not learned how to make yet, but I will get there. We do not eat out because it is very expensive here and I can cook much better than most places that are in a casually affordable range. We do still eat out (at least pre-pandemic) at one restaurant: the one the husband & I had our first date that also catered our wedding. When I can leave the house again we will probably go there for dinner.
I ADORE sweet potatoes! You do garlic and onion and turmeric, can you also do that generic "curry powder" from the regular grocery store? I love love love tossing chunks of sweet potatoes in those and roasting them on the bbq. Great with raita (if you can do dairy) and grilled tandoori-esque chicken thighs. nom nom nom

My husband's family is from England so he is emotionally invested in white potatoes. I make them for him.

Gabapentin: going to hit up my pain clinic for that when I get the nerve to call. I might be coming out of the duloxetine depression (it made me more depressed than usual).

I do not know what initials flag the software. (blank look #137)

I have canes stashed around the house! LOL
I have one at the back door for when I take the dogs out, one by the sofa, one with the umbrellas by the front door. The walker I keep by the bed at night because mornings are the worst for me. Poor hubby has to get up for the dogs every morning, and one of ours is very old (she will be 17 on Sunday - a breed that generally lives 14-16 years)

Sorry for typing/chatting your ear/face off.
I do not get out much (read: at all).
 

AhZo

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DX FIBRO
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Apologies everyone who has been getting alerts/emails about this thread. I did not realise it was this thread and not one I had started elsewhere. Apologies for the thread hijack. Back to your regularly scheduled thread topic.
At least the positive is it has helped me feel better today. I truly appreciate that.
 
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