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]

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]

I was wanting to got to a pain clinic alternatively or additionally to the rheum/fibro clinic I went to for 2 weeks here in Germany.
Both of these offered what they call "multimodal therapy/treatment", meaning lots of different types of physical treatments (about 15 where I was), some psychological pain management as in talks about how pain works, and relaxation exercises (progressive muscle relaxation sessions), 1 talk with a pain psychologist, and no meds at all.....

 

[Cutiegirl]

I don't mind. It was an interesting read. We do have a pain clinic here in Kingston but my doctor hasn't referred me to it yet, and I am guessing there is a 1 to 2 year waitlist. He also said that there really isn't a rheumatologist here who deals with fibro which was why I was asking in the first place--if anyone had a decent doctor nearby who deals with fibro? I would prefer traveling to Ottawa instead of Toronto. Lol

 

[sunkacola]

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.

Here is a guide to non-medication routes to take with fibromyalgia.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

The pain clinic is ONE place you can go to address pain, not THE place. In my experience and that of many others, a pain clinic does not offer any of the non-medication things that can and do help millions of people with chronic pain. they may or may not recommend such things, but all they will actually do is offer medication. That is the only way they directly address fibromyalgia, because they do not have alternative practitioners on staff. Medication is generally not the best way to start with fibro. I recommend trying non-medication things first, to avoid side effects and possible addiction. And to see what y ou can do for yourself without depending on meds.

 

[AhZo]

Here is a guide to non-medication routes to take with fibromyalgia.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

The pain clinic is ONE place you can go to address pain, not THE place. In my experience and that of many others, a pain clinic does not offer any of the non-medication things that can and do help millions of people with chronic pain. they may or may not recommend such things, but all they will actually do is offer medication. That is the only way they directly address fibromyalgia, because they do not have alternative practitioners on staff. Medication is generally not the best way to start with fibro. I recommend trying non-medication things first, to avoid side effects and possible addiction. And to see what y ou can do for yourself without depending on meds.

I am sorry, but if "alternative medicine" worked, would it not just be called 'medicine'? Being autistic I have difficulty discerning between actual medicine, corporate pharma slavery, and "woo woo". I believe I need to learn more information before I can map out some criteria/parameters to internally create a grid for decision making.

 

[cookiebaker]

but if "alternative medicine" worked, would it not just be called 'medicine'?

the term "alternative medicine" just means alternatives to "modern", mainstream medicine, which is increasingly dependent on the pharmaceutical industry, and only treating individual lab results, not the patient as a whole.

Alternative medicine can be things like chiropractic care, acupuncture, natural supplements, etc... and many of these things have been around for a long time, and are considered to be helpful in many cases. Herbal medicine has been around for thousands of years, and in many cases is just as viable (if not more so - ie: fewer side effects) than current "modern" medicine practices.

a prime example of not treating the patient as whole, but only lab results, is my current issue with low thyroid.
I have been exhibiting hypothyroid symptoms for YEARS, but lab tests always came back in the "normal" range (altho current research suggests that the TSH range should be narrowed by quite a bit) but rather than treat me as a whole patient, i was told time and time again, there is nothing wrong with my thyroid - despite having all of the classic symptoms, except goiter.
Now, years after symptoms started, my TSH labs are finally showing elevated above the "normal" range, and I was finally started on meds for it - altho it is a synthetic form.
I can say that since starting this medication, my tinnitus has been greatly reduced - not gone, but not nearly as bad as it has been. (and yes, tinnitus IS a symptom of hypothyroid) I also feel I have lost a little weight as well (i dont have a scale - will have to wait until my next appointment to know for sure)
My point here being, "modern" medicine is not perfect by any means, and sometimes we need to look at other alternatives for help.

 

[sunkacola]

I am sorry, but if "alternative medicine" worked, would it not just be called 'medicine'? Being autistic I have difficulty discerning between actual medicine, corporate pharma slavery, and "woo woo". I believe I need to learn more information before I can map out some criteria/parameters to internally create a grid for decision making.

Alternative in this case only means not-the-established-western-medicine-way. Doesn't mean it is not medicine or that it doesn't work.
As for woo-woo, it depends o n what you consider "woo-woo".

Little story: Many years ago I thought homeopathy was "woo-woo" and had no interest in it. Then I had a cat I loved deeply and he had a problem that no vet could solve or even treat effectively, and I'd taken him to several.
someone suggested a homeopathis vet. I didn't believe in it but I loved that cat so much I would try anything just in case. Two days after seeing the vet and giving him the remedy, I had almost a new cat he was so much better. After a couple weeks I stopped giving him the remedy (per the vet's instructions) and the problem never came back. The cat lived to be 17, never had that issue again.

I no longer think homeopathy is "woo-woo", and after that I had several good experiences with using it for myself under the direction of a good homeopathic doctor, which I strongly recommend. Going to the store and just buying a homeopathic remedy based on what the label says and using it is usually not very effective because it's not that simple. A good Homeopath will take a lot of different things into consideration before recommending a remedy.

But to the point........................

Basically, my philosophy is: Never argue with success!

Since that experience I have been much more open minded towards "alternative" health care. You can learn a lot with an open mind.

It was an alternative health care provider who suggested years ago that I go gluten free to see if it would help with a specific problem I had had all my life (not fibro related). I tried it and it changed my life, and I never went back to eting gluten. Multiple doctors only gave me drugs that had other effects even more unpleasant than the problem I had.

My chiropractor is magical for what he can do for my body. My accupuncturist is excellent and helps with many things. these are considered "alternative".

So, my oinion.....If it helps you to take a supplement or do an exercise or diet change or stand on your head ans sing or lay crystals on your toes.....no matter what it is, if it helps it helps!!

I always recommend that people try anything they feel like trying, including things they don't really believe in or that they think are woo-woo, unless it is dangerous or an addictive drug or something that has known bad side effects.
Something you thought was woo-woo might turn out not to be, you just never know.

 

[AhZo]

see also: "anecdotal evidence"(something Q does not tell you)

 

[JayCS]

I am sorry, but if "alternative medicine" worked, would it not just be called 'medicine'?
more information before I can map out some criteria/parameters to internally create a grid for decision making.

My brain works like this too, often enough I need external grids for decision making.
My supp list is one pretty big grid with the main effects, side effects, resources, dosages etc.

When my full flare of fibro overwhelmed me 3 years ago I tried to base my decisions on previous experiences that some kinds of alternative / complementary / natural treatments and especially prevention were what helped me, whilst meds usually harmed me, but pain teas and concoctions etc. did nothing.
So I quickly gave it over to docs, which I felt obliged to do for employer and wife.
I tried everything they said, some was "alternative", some "mainstream", but most things made it worse.

Then I started listening on forums and also researching and haven't stopped either, because it's the only thing that's helped. So like you am always on the lookout for information.
However at the same time I'm willing just to try out things, because I've found that while even the fullest information gives some orientation, it's something different to try it myself.

Mainstream medicine is based on "evidence" for large groups and it tries to find things that work for a large majority. Unfortunately they're not at all successful with that. That's one reason that the evidence and information isn't that easy. So it means that I do base my decisions on weak and anecdotal "evidence" as well as my trials, so the experiences of others and myself.

It's not as clearly cut as we desire. For us, "medicine", "evidence" and "averages" do not "work".
So the only thing we can do is a matter of intelligent and semi-educated guesses, of trial and error...
So I'm as so often fully with the others.

That said, acupuncture is definitely "alternative" and nevertheless has one of the highest amounts of clinical evidence for fibro, more than meds. Still not at all meaning it helps everybody!
So you might want to read the newest reviews of fibromyalgia treatments for guidance.
Or watch this screen .

 

[sunkacola]

Very well said, Jay.
Especially the part about mainstream medicine protocols being based on large studies involving manhy people. which, of course, is a very good thing. But which doesn't necessarily work for people with fibromyalgia because the symptoms and manifestations are so widely varied, and even if two people had the exact same symptoms, the same thing will not necessarily work to help both of them.

For us, it's good to take anecdotal evidence as an indication that something might be worth trying. Not that it will definitely work for one individual. I know from my own experience that doing your own experimentation with different things is the most informative way to go about exploring and finding the things that will help any one individual with fibro symptoms.

Reading this forum is extremely informative, because people say that this or that worked for them, others say it didn't work for them but this other thing did, and the person reading all this has the opportunity to try something out if they want to or think it might help them.
I have had an attitude of being willing to try almost anything that is non-drug and that I think has a chance of being helpful to me.

I believe that experimentation has the best chance of creating a lifestyle that suits the individual and makes the management of fibro possible, which in turn makes it possible to have a good life. And, bottom line, that is what we all seek.

 

[cookiebaker]

@JayCS & @sunkacola - hate to say it guys, but AhZo has left the building... they have decided that this is not the place for them.. sad, but there it is.

however, the info imparted above is good info for others, so I guess it is all good.

 

[sunkacola]

@JayCS & @sunkacola - hate to say it guys, but AhZo has left the building... they have decided that this is not the place for them.. sad, but there it is.

however, the info imparted above is good info for others, so I guess it is all good.

Yes, I knew that person left. I wasn't actually replying to them.

I wanted to reply in any case, because it's information that could possibly benefit someone else.

I am always aware that people come here and read our posts, whether or not they join the forum as a member, and that some people join and never post, only read. When misinformation or questions arise, I think it's good to respond for that reason whether or not the OP reads it.