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Posted By : FibroIsReal - 1/13/2014 12:17 PM
Hi all,

I have had Adult Onset Stills Disease since 2003. I was living with constant pain and coping with the pain until last year May 2013 I had an accident and the pain just got severe and unbearable. Ended up in emergency. After many tests found out that Stills was in remission and finally in October I was diagnosed with Fibro.

I have been devastated! My Rheumatologist is great for diagnosing me with this but he is always in a rush and has asked me to get a family doctor who can take the time to treat me. problem is that I do not have a family doctor. Well I had one but long story short I fired her last year summer as she was very incompetent and misdiagnosed my kids and now i realize for me too. Anyways, since then I have been looking for a family doctor however all the doctors that are taking new patients refuse to take me on when I tell them that I have Fibro and I need a dr who understands this syndrome and knows how to deal with such patients.They are fairly young doctors and all the experienced ones are not taking new patients!

So here I am. Today my Rheumatologist flatly told em that he will not see me before six months :(

I live in Toronto, Ontario, Canada ( To be specific I live in Pickering - Durham Region includes Pickering, Ajax, Whitby,Oshawa. Does anyone here know of any doctors that are familiar with Fibro or chronic pain and could help me. Or any resources available that I can access and get the much needed help as I am in soooooo much pain!!!

Thanks so much!

Post Edited (FibroIsReal) : 1/13/2014 12:03:54 PM (GMT-7)


Posted By : getting by - 1/13/2014 12:45 PM
Hi FibroIsReal,

Welcome to the depression forum. I am glad you found us, but so sorry for the reason. But you are now among friends. People who understand what you are going through.

I am sorry I am not familiar with your area. So I don't know of a doctor. Do you have a teaching hospital near you? Any larger cities? You may have to travel some to find a family doctor that treats fibromyalgia, or a pain specialist. Have you thought about pain management? That might take the place of your rheumy.

You probably need a family doctor too because you are probably due for a physical. I just had mine, not much fun... But done and over with. Mammogram tomorrow, so much fun!!! NOT....

I am sure that there will be others welcoming you here and hopefully somebody can help you with your search.

Be sure to check the very first thread on the forum. It is called "fibro 101". There is a wealth of information on that thread, and I am sure you will find it informative and interesting.

I hope that you feel better soon. Thanks for posting. And again, welcome to the forum!!!

Hugs, Karen...
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

Posted By : FibroIsReal - 1/13/2014 12:52 PM
Oh Thankyou for such a warm welcome. I am sure that Toronto should have doctors but nothing is coming up on google. Have tried a lot of research but cant find any information. I am scared and frustrated with this. I am in need of friends who can actually nderstand my pain and not just say " Get some exercise", " Don't stress", "Eat Healthy"....I am sick and tired of hearing that.

You are right I do need a physical done. God Knows how long it has been since I had one. I have a meeting on Friday with another doctor. This one is in his 50's and just moved from another city and I am reallllllly hoping that he can help me or atleast direct me to the specialist that can helo me. I desperately need a family doctor who can atleast adjust my medications without me waiting for months to see him.

I will definitely check the "fibro 101" out. I am trying to educate myself and also have ordered the book called " Breaking thru the fibro fog". Hopefully I can share some info here as well.

(Gentle Hugs)

Posted By : FibroIsReal - 1/13/2014 12:54 PM
Oh and also I do have a teaching hospital here in Toronto. what do I do now?

Posted By : Myself 09 - 1/13/2014 12:57 PM
No clue where you live.

Ask your RH what doctor he would suggest, in your area, that has experience working with FMS. IF s/he cannot give you a few names, ask the office nurse. Don't back down; be polite but firm. "I am having trouble locating a competent physician who is willing to take on treatment of FMS in a new patient. Since you do not wish to treat me for this condition, I need your help in finding a doctor who will treat me."

Firm but polite.
Fibromyalgia DX 2005. Ulcerative Colitis 2003, Crohn's 2013, enteropathic arthritis and Ankylosing Spondylitis, 2013. History of Fibro--2 out of 3 siblings diagnosed. Started SCD-June 2013. *There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot

Posted By : FibroIsReal - 1/13/2014 1:02 PM
To make it easier I live in Toronto, Ontario Canada. I guess i will have to be firm . I have a hard time talking with my Rheumy :(

Posted By : Myself 09 - 1/13/2014 1:11 PM
He needs to do his job. If he doesn't want to treat you, and didn't hear that you do not have a PCP, then he needs to make suggestions.

Did you tell him you do not have a PCP? Did s/he give a reason as to why s/he was not willing to treat you?

A good PCP can treat FMS. Some flat out refuse to even try. Others are not capable.

The best RH I ever had was with a teaching hospital in Richmond, VA. It took me a whole to get an appointment with him, but it was worth it.

Honestly, if s/he cannot give you a few names, I would find a new RH.
Fibromyalgia DX 2005. Ulcerative Colitis 2003, Crohn's 2013, enteropathic arthritis and Ankylosing Spondylitis, 2013. History of Fibro--2 out of 3 siblings diagnosed. Started SCD-June 2013. *There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot

Posted By : FibroIsReal - 1/13/2014 1:16 PM
Yes, I also feel that my Rhemy has now passed me on to the Psychiatrist .I asked him today if he could adjust my meds and he said take it up with the Psych!??? He has not suggested me any family doctors. The process here in Ontario Canada is not easy. I was on the waiting list for family doctors and because i have a chronic condition I have been moved up on the list, however I need to do my research about the doctor before I decide that this dr is right for me. I met a few doctors and all of them hesitate when I tell them I have Fibro. Hopefully this Friday I can meet this other dr and he can then refer me to a specialist. keeping my fingers crossed.

Posted By : Myself 09 - 1/13/2014 1:24 PM
The process everywhere is different AND difficult, and finding a good doctor is hard. Most of us experience trouble somewhere along the line. I have had a so-so RH and a difficult PCP in my decade since diagnosis. They got replaced. But, you will not get the proper support you need until you find a doctor than can treat you.

Call back and talk to his nurse. Explain. Get some names.
Fibromyalgia DX 2005. Ulcerative Colitis 2003, Crohn's 2013, enteropathic arthritis and Ankylosing Spondylitis, 2013. History of Fibro--2 out of 3 siblings diagnosed. Started SCD-June 2013. *There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot

Posted By : Myself 09 - 1/13/2014 1:25 PM
University Health Network (UHN)
Fibromyalgia DX 2005. Ulcerative Colitis 2003, Crohn's 2013, enteropathic arthritis and Ankylosing Spondylitis, 2013. History of Fibro--2 out of 3 siblings diagnosed. Started SCD-June 2013. *There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot

Posted By : Myself 09 - 1/13/2014 1:26 PM
http://www.thestar.com/news/gta/2012/04/04/best_and_worst_gta_hospitals_torontoarea_lags_in_patient_care_national_report_says.html
Fibromyalgia DX 2005. Ulcerative Colitis 2003, Crohn's 2013, enteropathic arthritis and Ankylosing Spondylitis, 2013. History of Fibro--2 out of 3 siblings diagnosed. Started SCD-June 2013. *There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot

Posted By : Myself 09 - 1/13/2014 1:28 PM
http://www.rheumatology.utoronto.ca/Page245.aspx

http://www.mountsinai.on.ca/care/rmcad/programs/rheumatology-specialty-clinics

http://www.stmichaelshospital.com/programs/rheumatology/

http://www.uhn.ca/Arthritis/Education/Pages/education_rheumatology.aspx

Posted By : Sherrine - 1/14/2014 11:48 AM
Hi, Fibroisreal, and welcome! I think I'd find another rheumatologist or an Internist. The Internist can help with fibro if they are willing. My Internist does. They have more education than a regular family doctor or primary care doctor but, at least here in the US, they are considered primary care doctors also. I always make sure they are board certified but, again, I'm not sure how the Canadian medical programs rate doctors.

I think, since you are close to beautiful Toronto, you should call a teaching hospital. I know that was mentioned but you weren't sure what to do. Just call and tell them you need to see a doctor that treats fibromyalgia patients. I'm sure they would have several. I did this when I lived in Cleveland, Ohio. I called the Cleveland Clinic when my hearing was heading south and got a good specialist who dealt with my hearing loss. I'm sure you can get a referral from them.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you can learn a lot there. There is a good link when you first open the thread. It's an interview with Dr. Daniel Clauw who is one of the top doctors studying this illness. They think right now that this could be a neurological problem but the interview is great and in layman's language, too. All of the links are good. I've had fibro for decades but am still learning new things so you might find some new things there for you, too.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : FibroIsReal - 1/14/2014 2:35 PM
Thankyou for all the advice. I will definitely look into the teaching hospitals. Thanks

Posted By : I am Tired of being Tired - 1/20/2014 12:36 PM
HI FibroisReal,

I am also in TO and i to have Fibro. I was recently diagnosed and my doctor although I doesn't have the experience and told me to look for one (but there arent very many and those who do have a long wait list).

I did try to find one but was not able so they have been really helpful. They actually researched and today I received an email from them asking me how I was feeling and send me a whole bunch of links to help me understand what I have.

The office is located in East York so you would have a 30min drive but that team is worth coming down here. (My sis live is Pickering and comes down here because she is very happy with them) actually my whole fam moved to them. I was just there and they are excepting new patients. The have found a wonderful network of doctors who have been amazing and understanding. I would never go anywhere else.

If you are interested you can PM me and i can send their info.

Posted By : csmams - 2/24/2014 11:19 AM
Hi, I am also in Toronto and in such hard search for a doctor. Can FibroIsReal or I am Tired of Being Tired share their results ?
Thanks in advance.

Posted By : FibroIsReal - 5/2/2016 7:21 PM
No luck!!! I found a great family doctor in ajax but he had to close his practice because of allegations of sexual assault. So now i am back square one. still looking :(

Posted By : FibroIsReal - 5/2/2016 7:23 PM
Im tired of being tired, i can't figure out how to pm. Can you pls share the doctor that i great for fibro? thanks

Posted By : Ljm2014 - 5/3/2016 12:12 AM
Welcome to the forum,

Not in canada , but wishing you the best

Even with a good dr.. You will need to learn coping skills on your own also.

This forum always has folks ready to listen and share their experiences..have they checked your vitamin d levels?

Posted By : countingstarsx - 5/3/2016 7:50 PM
I have had incredible help from a functional medicine practitioner. I am about 75-90% better depending on the day. Here is a list of FM practitioners in Toronto. I hope you find the help you're looking for.

https://www.functionalmedicine.org/practitioner_search.aspx?id=117#results

Posted By : cdh - 5/6/2016 8:00 AM
I am also in Toronto - my family doctor is fabulous and she is really understanding and sympathetic about fibro. She works at a walk-in clinic, so even if you can't get in to be registered with her as your family doctor, you can still see her. PM me and I'll give you her info. I've been going to her for nine years and I have never had one bad experience.

Posted By : olympiannyc - 10/11/2016 9:29 AM
based on her website, Dr. F sees complex cases of Fibro, Lyme CFS etc.



regards

I just saw that you put a doctor's phone number in your post. We don't give out doctors' names or phone numbers on the open forum. You can email each other for that type of information.

Sherrine

Post Edited By Moderator (Sherrine) : 5/9/2017 2:29:09 PM (GMT-6)


Posted By : fibro2013 - 5/9/2017 1:24 PM
I'm also desperately looking for a new family doctor in the GTA who is sympathetic to and knowledgeable about our condition. I have other conditions which were initially incorrectly blamed on fibro and over looked. One of these conditions is life threatening, if left untreated. Would you be able to pass on the name of your doctor?

Posted By : Sherrine - 5/9/2017 2:51 PM
Hi, Fibro2013, and welcome! We don't put doctors' names or phone numbers on the open forum but, if you have put your email address in your profile, members could email you with information if anyone thinks they can help. Only members can see your profile.

Also read through this thread. There are good suggestions. You can look to see if there is a support group in your area. Even an arthritis support group could be quite helpful since they deal with chronic pain also. My rheumy treats arthritis and fibro. And, I got his name from my hairdresser! You have to ask around and do your homework. You can check the Yellow Pages and some doctors have ads that list illnesses they treat. Be sure to look for board certified doctors and hopefully they are diplomates also.

If you hear of a good doctor you can check them at healthgrades.com or vitals.com. These sites are fairly accurate and have info on the doctor plus reviews. If you decide to make an appointment with a doctor, be sure to ask if they treat fibro patients.

I hope this information helps you.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 5/9/2017 3:02:02 PM (GMT-6)


Posted By : fibro2013 - 5/10/2017 7:39 PM
Sorry, I didn't realize this was the case. I have done a lot of research but cannot find a family physician. Thank you to the member who attempted to provide me with the information requested. I have made my email visible to members so if anyone who lives in the greater Toronto area can recommend a doctor, it would be much appreciated. Thanks :0)

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