Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

My Rheumatologist refused to treat me.

Jan 04, 2016 8:28 PM

I had one appointment in September with a rheumatologist I had been referred for fibro diagnosis and possibly treatment.
Just got the news I was diagnosed officially with fibro but the doctor doesn't believe in nor does she treat fibro patients.
I am so confused since so many people keep saying I should be treated by a rheumatologist, especially sincey family doctor has never treated anyone with fibro before.
If you have any thoughts or advice, speak up please :)

Jan 04, 2016 8:44 PM

My rheumatologist I only saw once for diagnosis and then she referred me to a pain management doctor for the rest. She said that rheumatology couldn't treat fibro because it's an issue of managing pain. There's no cure and treatments are meds and lifestyle changes. So my team consists of a PCP, a pain management doc and a psychiatrist. Them they refer me to the various specialists or surgeons etc to test side issues and stuff. Hope that helps

Jan 04, 2016 9:08 PM

My rheumy treats my fibro and my PCP is working along with him. Rheumy Dr prescribed the lyrica and some other meds even one which I found later to be an antidepressant. And then PCP want to add to rheumys meds. I think it's really dependant on the Dr. Sadly for this illness u have to shop around. Find the right one for u.

Jan 04, 2016 9:16 PM

I did get a referral for a pain management clinic from my family doctor. I have been told that I should hear back in at least a year.

Jan 04, 2016 9:17 PM

A year!!!!!!! What?! Sorry is that normal

Jan 04, 2016 9:53 PM

Apparently in Ontario it is. I'm not happy about it. Two of my doctors couldn't even convince my neurologist to do a neural workup/ scans for me for chronic migraines and headaches/ just in case. Sigh...medicine today I suppose.

Jan 04, 2016 11:16 PM

I went to an internist for my Fibro diagnosis. I'm not a big MD person (I never went for annual physicals). I have been going to random professionals for the last 13 years trying to find individual diagnoses for my various symptoms. I finally met with the internist, and he ran a series of tests to rule out all sorts of possible diseases. By my 2nd visit, my diagnosis was set.

Have you tried medicine in the U.S.? If you can pay out of pocket, you might get a faster answer.

Jan 05, 2016 12:02 AM

I think if you find the right one they will help I just finally got a rheumatologist and he did an exam and labs I was prescribed savella I'm on the starter pack and found I'm deficient in vitamin D so he prescribe a supplement to up that

So they are out there you have to look :)

Jan 05, 2016 4:54 PM

RaeCarletonGirl, I'm sorry your doc won't help you. Mine didn't either when all I had was the fibro. A year later I returned to her and now have Sjogrens & hypothyroidism. She treats the sjogrens, my endocrinologist treats the hypothyroidism, & my PCP Ives me gabapentin for the fibro. I have Tramadol for pain but it really only helps with flare ups or extreme pain. My PCP also gave me muscle relaxers for nighttime leg cramps (RLS). My pain specialist basically dismissed me, but I'm not sweating it BC my PCP has that address covered. 😷🙏🌼

Jan 05, 2016 6:08 PM

I don't think I've mentioned I've had hypothyroidism, hyperglycemia for years. But had no idea that I could.be related to the fibromayalgia I was diagnosis with middle of last year.

Jan 05, 2016 7:18 PM

Newfibrogirl, there's a lot of dx I've had for decades, like IBS, which has also been tired to autoimmune issues. I've learned more through this community's members and research links than all my docs combined. Lol 😷🙏🌼

Jan 05, 2016 8:22 PM

Most people go to a Rheumatologist to rule out auto-immune diseases. If in the end you don't possess those diseases or they have yet to be exposed, some Rheumatologist will just say since you don't have these things and you are in pain like those diseases, you must have fibromyalgia. A good Rhuematologist will make sure that you truly fit the profile of a Fibromyalgia patient. There are not a lot of rules but there a couple things that are common with all Fibromyalgia patients. I was diagnosed without those symptoms simply because they could not find an auto-immune disease on me. Later, I fit the criteria for Fibromyalgia but that was several years later. But most rheumatologist do not follow up on Fibromyalgia patients. It is something that a primary care doctor can handle along with pain management and physical therapy. So don't let this surprise you. There is nothing known about fibromyalgia to treat from a rheumatology standpoint. They don't use chemotherapy, steroids, as they do with their other patients. With fibromyalgia, it all comes down to pain control and trying to keep you as active as you can be. Hope my post doesn't offend.

Jan 05, 2016 11:02 PM

A lot of good advice. I agree with trying other drs, especially if auto immune hasn't been ruled out.

Go to your family dr and get a new referral. I'm in Saskatchewan and DO have RA and my first rheumatologist frigged me around for a couple months then decided in the end NOT to treat me at all because "I wasn't as bad as some of her other patients" Like seriously wtf?!
It's unfortunate that there are so many drs that suck ass. But my next referral was with I dr I loved who treated me for a couple years until she died, and now im with a third whos a total douche but he keeps my Remicade a flowin so I'm cool with it.

My point is you have to be your own advocate or else you'll get pushed aside. Keep searching for answers and for healthcare providers that will listen and take your pain seriously. You just might have to go through a few duds first.

Feb 19, 2016 12:36 PM

Hi everyone. I have had fibromyalgia since 2003. I have been to many doctors since 2003. Anyway there has been many studies and not many promising out comes. But even with this said you all probably know this anyway. There are medications that help ease it. And just to say doctors not all are so stupid to the new treatments. Keep pushing your doctors don't give up. They have to treat you regardless; or find someone that can. Also I have a number of diseases or health problems that have also gone hand a hand to fibro.IBS, migraines, tmj, back and neck problems. Neuropathy, depression and more. Anyway research doctors they are out there. Write down your complaints were the pain is, what times, how long it lasts what you are doing that causes more pain even the weather. If anything you do eases it. Any kinda stress causes symptoms too. I can say that relief is out there to a point.

Feb 19, 2016 12:41 PM

I have been put on so many meds than I can count and some work some dont . but the point is don't give up push you doctor until they do something. There is no reason you need to live in pain.

Feb 19, 2016 2:34 PM

Sweetsassy, my rheumy doc passed me off to pain management because all I had was fibro (then), and she felt it didn't warrant her time. She only saw me again because my pcp sent me back to her due to suspected sjogrens. Even when she got the positive lip biopsy results she didn't want to believe it. She called the lab physician and talked directly to him, then she decided I did need treatment for sjogrens. Ha! Really? I had complained for 2 years saying, "it has to be more than just fibro.". It wasn't until I got the oral rash that required the biopsy before the docs listened & investigated. Why don't they just listen? 🙂💕🙏🌼

Feb 19, 2016 4:17 PM

I don't know why either.

Jun 30, 2016 1:32 AM

I was diagnosed by a rheumy but she didn't even tell me what that was. She prescribed me Lyrica and told me it could make me gain weight. She didn't ask about any mental health issues in me or my family. Luckily my GP has been great. Just shop around for someone that fits you and listens, treats and supports. Gentle hugs x

Jun 30, 2016 9:31 AM

I was referred to a rheumatologist who wouldn't treat me and the pain specialist said there's nothing he could do, that I should smoke pot. My PCP and I are muddling our way through this Dx.

Ready to start relieving your pain?

Join Community