How to find the right doctor for fibromyalgia

What doctor should I see for my fibromyalgia?

 

The short answer is, the doctor that you are most comfortable with.
The long answer is as follows…

As for many people that have been diagnosed with fibromyaliga, I had a grueling and emotional ordeal to reach my diagnosis. The lesson that I learned is that not all doctors are equipped to deal with this disease.

As I wrote in a previous post, my primary physician was the first doctor to suggest that I might have fibromyalgia. It was a very difficult concept for me to wrap my head around. She suggested that I have some blood tests run and then I visit a rheumatologist. I was so emotional at the time that I thought that she had misspoke.  Why in the world would she want me to go see and rheumatologist and why would I need bloodwork done to check for inflammation? It didn’t make any sense.

When I returned to her office, several months later, I was prepared to discuss the disease and had my list of question ready. We spent an hour talking about fibromyalgia and the steps that I would need to go through to get a proper diagnosis. I told her about my fear that no other doctor would believe me.  After all, you can’t see pain. I don’t look sick on the outside. She said one of the most comforting things that any doctor has said to me,  “I believe you”.

I took my referral and went to the rheumatologist. I was so nervous that I was panicking.  I called my husband crying and told him that I needed him to leave work and meet me at the doctor because I couldn’t do this by myself. I waited in my car until he arrived and we walked in together. I was the only one in the waiting room under the age of 60. I remember thinking how ironic that was as my body felt like it was in it’s 80s.

The rheumatologist was in his mid-30’s like me.  He asked me several basic questions.  Where was my pain? What was it on a scale of 1-10? Did anything make it better or worse? Any family history of arthritis? He checked my joints and proclaimed that I did not have arthritis and there was nothing that he could do for me other than some more bloodwork.  I was LIVID.

The books that I had read told me that fibromyalgia was diagnosed by the rheumatologist. I looked him in the eyes and asked him in a not so calm voice, “Well aren’t you a rheumatologist?”.  In a shocked voice he said yes and advised me once again that he was unable to diagnose me with fibromyalagia. He agreed with my primary physcian that it was the most likely diagnosis but if I wanted the true diagnosis then I would need to go to another doctor called a physiatrist. I left in a flurry of frustration and anger. This doctor’s poor bedside manner had clearly gotten under my skin and now I had to go to ANOTHER doctor. And what the hell is a physiatrist anyway?

The best way to describe a Physiatrist is a doctor of physical therapy. It kind of makes sense when you consider how important physical therapy is to restore function to sufferers of fibromyalgia.

It didn’t help that I had to wait another month to get in to see the physiatrist. After literally pacing in the lobby for over an hour because I was in too much pain to sit, I was brought back to a room and asked to get into a gown. So now I am cold, frustrated and in pain and a doctor comes and starts speaking in a very thick accent that makes it difficult to communicate. I attempt to give her my entire story, which at this point is well rehearsed and on-point, and she continually cuts me off.  She clearly does not care how long I have been in pain or how I am unable to sleep. She does a brief exam and proclaims that I have fibromyalgia. Hallelujah! I have a diagnosis. She writes me 2 prescriptions. One for cymbalta and one for gabapentin and hands me a packet of 5 pieces of paper. She says follow these guidelines and you will be feeling better in a couple months. We schedule a recheck for a month and she runs out the room.

I leave with a mix of emotions. I have obtained the primary reason for my visit which is an official diagnosis but I am feeling alone. When I get home, I start reading the packet of papers. It takes me about 60 seconds. It is an outdated photocopy of a doctors manual that says “You should tell your patients to do this, this and this” and a list of physical therapists that I quickly recognize is outdated as it still has the old address of the PT office that moved 2 years ago! Seriously?, I think to myself. I realize that I am going to have to figure this out on my own.

I order a couple more books on fibromyalgia and start reading. The Cymbalta starts to help a little bit, but I am still not sleeping. I canceled my recheck appointment with the physiatrist and made another appointment with my primary. We spend another hour discussing treatment options and answering all of my questions. I ask her if I can just see her for my fibromyalgia and she thankfully says yes. I have my diagnosis and I have my doctor that makes me feel comfortable.

These are the lessons that I learned….

  1. Find a doctor that believes you.
  2. Your doctor should be well educated about Fibromyalgia and believes that a proper treatment protocol should include medications, exercise, physical therapy and mental therapy.
  1. The doctor should take the time to answer all your questions.
  1. If you are not comfortable with the doctor then move on. The right doctor is out there somewhere.
  1. Ask friends or people in a fibromyalgia support group for recommendations.
  1. You don’t necessarily need a specialist to treat your fibro.
  1. Consider a doctor that also believes in complementary therapies like acupuncture and supplements.

I love my doctor.  She ticked all the boxes that I was looking for and is always just an email away when I have a question. I hope that you have an easier path to finding the right doctor for you.

 

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