Were you diagnosed by your primary care physician or a specialist?

United States
April 17, 2007 2:54pm CST
Were you diagnosed with fibromyalgia by a specialist? If so what type of doctor? What kind of doctor treats you? I have been reading and found that rheumatologists don't like being "stuck" with treating fibro patients. Many think it should be left to the GP. What do you think on this?
3 people like this
10 responses
• United States
20 Apr 07
I was diagnoised by a rheumatologist. I suggest anyone with muscle and joint pain go to one. Both the ones I went to understood me. It is priceless, plus they know know how to treat it. One of my doctors went on to do research, he cared about this patient no matter what the diagnosis and wants the best treatment for them. Keep looking until you find a good doctor. Do not settle. Also I believe in patient advocates. If you need someone to go to your appointments and listen to what goes on and help you make decisions and deal with difficult situations find someone. Somes when we don't feel well we over look things or allow others to mistreat us. We just need help when we are ill. It is ok to ask for help.
@patgalca (14309)
• Orangeville, Ontario
17 Apr 07
Rheumatologists are the best specialists to diagnose fibromyalgia but they need not treat you. Your GP can treat you. But you must be prepared to go through a plethora of medications until you find what combination works for you. I tried 8 different anti-depressants until I found one that worked and had no side effects. I was initially diagnosed by my sister-in-law because she has fibro as well. I know someone who was diagnosed by their dentist. My GP sent me to an internal medicine who made the initial question of a fibromyalgia diagnosis. From there I went to a few different rheumatologists because I needed back up for insurance purposes. I went for a sleep test and also went through a huge questionnaire by a psychologist to determine my state of mind. The insurance company sent me for a functional evaluation. I did not do well on the FAE but the insurance company STILL denied me disability. Back to rheumatologists, there are some who will continue to treat their patients but they see a lot of people. They do a lot of research on the illness so I would rather give them the time to do the research if my GP can do the same thing my rheumatologist would do as far as treatment. Again, it is up to you to find what works for you. You may want to turn to alternative therapies such as naturopathy or homeopathy. Doctors don't always agree in this alternative therapies but you do what you have to do for yourself to make you feel better. There is no cure for fibromyalgia. There is only treatment - tons of different treatments. I have tried things like Bowen Therapy and Sacro Cranial Therapy and found that the side effects were just not worth the money. But that's just me. Good luck with your journey.
2 people like this
• United States
17 Apr 07
My doctor had me start on amitrypteline (sp?) and tramadol. I started getting worsening headaches and my muscles would jerk randomly and frequently. This was scary to me so I stopped taking the amitrypteline. I told her about it and she said she didn't think it would do that. She prescribed flexeril with the tramadol and the pharmacist scared the daylights out of me by telling me that he filled it only because even after his calling my Dr. to question the combo she still said do it. He said he would absolutely NEVER even suggest anyone combining these two medications because of the danger and he was reluctant to even give them to me. I never could bring myself to take the flexeril. The last time I saw my doctor (just for an anual exam) I fasted and she still didn't do more blood work like I thought would and should be done and she said that everything seemed to be working just fine (even though I had been saying it is not!). I am thinking of making an appointment with a Rheumatologist since my insurance does not require referrals. At least maybe he could assure me this is JUST fibromyalgia that I am dealing with and perhaps lead me on the right path. Right now I am taking only Tramadol for pain and it just isn't cutting it a lot of the time. Of course, it is not a very high dose that I take and I have been worried that my Dr. will think that I am just trying to get the meds. I don't think they understand that I would very much like to just say "keep them!" I don't LIKE to take the medication but I HAVE to have them to function at all sometimes. Thanks for talking to me about this.
1 person likes this
@SageMother (2277)
• United States
17 Apr 07
I think there is something really weird about fibromyalgia that doctors aren't willing to deal with. Just looking at the word doesn't give the cause. Fibromyalgia just means pain in muscle tissue, or something very close to it when you translate it. It is a symptom but not a diagnosis. The doctor is basically stuck with "the patient has muscle pain" and they don't really care to look for the source. If the cause can be seen on an mri or other imaging technique then the diagnosis can change and you would probably get better treatment. Have you had any medical imaging recently?
2 people like this
• United States
17 Apr 07
I had blood tests done (CBC, rheumatoid factor - no numbers just + or -, and blood sugar levels) in January 2006. I had an MRI of head and neck within the past 6 months. Aside from that I don't think there have been any other tests. Does that sound about right?
1 person likes this
• United States
23 Apr 07
I was diagnosed by a specialist who initially thought I had Rheumatoid Arthritis. I'm glad it wasn't that, but Fibro is no picnic either.
2 people like this
• United States
23 Apr 07
I was diagnosed by a specialist who initially thought I might have Rheumatiod Arthritis. I'm glad it wasn't that but Fribro is picnic either.
@auntyann (16)
18 Apr 07
My doctor referred me to a rheumatologist at my local hospital and he was more than happy to help me! On his advice and recommendation I attend a Pain Clinic that helps me a good deal. I know that I will never be free of pain but I can control it with the clinics help. This is an illness that should not be left to a GP because they do not always have the resources that consultants have. If you are having trouble seeing a specialist then you have to keep 'nagging' your GP to refer you becase this IS an illness and it is more understood now than a few years ago.
@lreddell (172)
• United States
17 Apr 07
I was actually diagnosed with FMS by a GP. I had explained my symptoms, and told him all the specialists I'd seen, all the tests that had been, and the test results. He LISTENED to me, and thats when he did the "point test" on me. That particular doctor moved out of town (I was not a happy camper), and now my current doctor treats me. He is a GP as well. He is a very compassionate doctor,and also listens to what I say. I am very fortunate to have such an outstanding physician. I know first hand that FMS is difficult to diagnose, as it took 14 year of mis-diagnoses before I knew what was wrong with me. Since there can be so many different problems with FMS, and many of those problems can mimick other health issues, it is difficult to diagnose and treat. Any doctor can treat FMS patients, but if they've never studied FMS and the related health problems that present themselves, it can be very frustrating for both the patient and the doctor. My current doctor actually researched FMS so he would know as much about the disease as possible. I think whether one is diagnosed by a GP or a specialists, it doesn't really matter. Just to know that one isn't losing your mind, is enough. Having FMS has had a huge impact on many, many people, and I believe that finding a compassionate physician that genuinely cares about you and your health, and listens to you, is the most important thing in regards to treatment. Hugs.
@RosieS57 (889)
• United States
29 Apr 07
I was diagnosed by a Mayo Clinic Rheumatologist. Kinda hard to argue with THAT result. Like so many, I had never heard of fibromyalgia but soon learned a lot...mainly that there's no cure. Rheumatologists don't like to treat it because there isn't anything that the rheumatological remedies can do about it. FM isn't inflammatory and isn't progressive. A pain management specialist that actually treats FM is a good place to go for treatment. If they're the sports medicine or physical therapy types they typically won't know FM from a hole in the ground. The anesthesiologist kind of pain management is the kind to have. And enlightened Neurologists that do indeed know that FM is a central nervous system disorder can treat you, too.
• United States
29 Apr 07
I'm self-diagnosed. My previous experience with doctors told me that I would just pay for a lot of tests that wouldn't show anything, and that the vagueness of the symptoms would mean being treated like a hypochondriac. I developed fibro before it was more commonly known and understood, and even now, doctors have no real way of treating it. As far as I can tell, I've done better, by doing my own research and modifying my lifestyle to fit my needs than people who've let doctors fumble over them without any results.
• United States
29 Apr 07
Jennifer, I don't know where you live but I go to a specialist (rheumatologist), I have seen to just to get a second opinion, without either of them knowing about eachother. What my objective was, to see if treatment would be any different, or it he had any different suggestions, ect. This was just recently that I have done the just in the past 5 weeks. Everything he said was a repeat of treatment that I am already receiving. Some people can function, and others can't. As for the medications, exactly the same. So, I wouldn't say it was a waste of money or time, to put my mind as ease, he did praise me for going to physical therapy, which alot of people do not do, because they can't afford to. I am lucky to have very good insurance thru my husbands employer. Right now I can't go because I dislocated my hip, but it is very important to get some exercise, even if it is just around the house. My rheumatologist and my GP work together for my care. If that help you. They alway have. Jasmine.