(You can find Part One here and Part Two here.)
So after after a visit with my new pain doctor that was more like the accidental collision of two random objects hurtling through space than an actual doctor’s appointment, I was sent to get an MRI. This was going to be a problem due to the fact that I am a tiny bit claustrophobic, in the same way that the Pope is a tiny bit interested in religion, and Atlanta is a tiny bit warm during July and August. Plus, I was also a tiny bit pissy because I felt like a circus animal being forced to jump through meaningless hoops in order to earn the “reward” of not having to spend every minute in unspeakable pain.
(Here I must stop and give a shout-out to my MRI technician, James, who doesn’t know me from Adam and will most likely never read this. But he was kind, patient, and very reassuring, and made a stressful experience infinitely better than I thought it could be. Rock on, James.)
Happily I survived, so the next day I went to my second appointment at the pain clinic, convinced that this was all an enormous waste of time and energy-right up until the doctor announced that they’d found something on the MRI. Somethings, actually.
Unfortunately, this news came at the end of a three-week period during which, in addition to all the medical stuff going on, one of my cats (my BABY!) was diagnosed with arthritis, my car (my OTHER baby) died, my husband was in a car accident (he was fine, but it took three weeks for his car to be repaired), he had a skin biopsy come back as cancerous (he’s fine now, thankfully), my chiropractor moved away, and they flew those two Ebola-laden American healthcare workers here to Atlanta, which was a tiny bit anxiety provoking.
So now adding to the whirligig that was my life was learning that I have a herniated disc in both my neck and my lower back. Finding that out was upsetting enough, but as the doctor started talking about what the treatment would involve I got more and more freaked out, and I realized that it had been a mistake to come to this visit alone. Since then I’ve finally admitted that I can’t be both the patient and the patient advocate, and even though I feel guilty every time he has to take time off of work to do it, my husband now accompanies me to all my appointments.
The doctor said that the situation in my back was serious and needed to be addressed right away, so he wanted me to come back in two days to start treatment. I was still reeling from the fact that they’d actually found something wrong with me so most of what he said was a blur, but I picked up enough to know that it was going to involve needles and my spine.
But the blows hadn’t finished falling yet, because as I dazedly asked him how this procedure was going to help my fibromyalgia pain he said, “Well, I don’t believe in fibromyalgia.”
And then my head exploded, because HOW IN THE WORLD WAS I SUPPOSED TO PROCESS THAT?! Why had my FIBROMYALGIA doctor, in order to treat my FIBROMYALGIA pain, send me to a doctor that DOES NOT BELIEVE IN FIBROMYALGIA?
W.
T.
F?!?!
So I said, “Um, what does my fibro doctor think about that?”, and he just kind of shrugged it off. He said, “I’ve seen a lot of people who come in here thinking they have fibromyalgia, but the problem is that they’re depressed, so they feel shitty, they’re obese, and they have a poor diet.”
In a superhuman show of self-control I reigned in all of my natural (and frankly, completely justified) instincts to violence and replied, “Well, I guess we’ll just have to agree to disagree.”
He replied, “Well, if it were me, I would want someone who didn’t believe in fibromyalgia because they would dig deeper to try and find other causes for the pain.”
This was a really annoying response, because unfortunately, he had a good point. So I could no longer enjoy an uncomplicated anger towards either him or my rheumatologist.
I was mad at my fibro doctor for refusing to prescribe pain meds for me anymore, and for sending me for treatment to a doctor who doesn’t believe in my illness. But, his doing so meant that they discovered a previously undiagnosed problem.
And I was mad at the pain doctor for kind of being a jerk, but he had treatments that might possibly take away some of my pain.
So, as the whirligig transformed into a tornado, I went to check out and try to figure out what to do next.
(To be continued.)
Please watch this vidio on You tube: https://www.youtube.com/watch?v=Ei8LbUDkQno, it explains how current research suggests that in over 70% of cases fibromyalgia is caused by cervical cord compression. This means that when the neck is in certain postions the spinal cord in the neck is compressed. This doesn’t show on normal MRIs as people are never imaged with their necks in anything but a neutral postion. This intermitent compression causes the symptoms of fibromyalgia by constantly putting the nervous system on alert this in turn causes chemical/biological changes in the brain and spinal cord (depression is a symptom of fibromyalgia not a cause). As you have something much more obvious compressing your spinal cord in your neck it isn’t unreasonable to think that this is causing your fibromyalgia symptoms. If its possible get you doctor to watch this as well, it is presented by an expert in the field of fibromyalgia reserch and a practicing doctor. At the end of the day it is just as damaging for a doctor not to beleive in fibromyalgia as it is for a doctor to inappropriately jump to the consulsion it is fibromyalgia without ruling out other possibilities. It means that many with fibromyalgia (not caused by other more obvious causes) will be subjected to numerous, stressful and pointless tests and when they all come back negative (because they didn’t do the MRI with their neck in extended) they will be deamed to be making it up etc and not given pain medication they need. What happens when its the fit 20 something (they too get fibromyagia) who has no signs of degeneration will the not be given the medication the need because the doctor doesn’t believe their pain is real.
Great article, Jenny. I enjoy your wit and humor as you navigate the medical maze that so many who suffer from “invisible,” chronic and painful diseases such as fibromyalgia go through.
I totally agree that it is a good idea to bring along an advocate to medical appointments. When my Fibro Fog was spinning out of control, even my profuse note taking did not help me unravel all of the information the “expert” rattled off in what my overloaded brain perceived as a foreign language.
“Why,” I often wondered, “couldn’t they understand my pain? If only every part of my body that was hurting was bleeding maybe then they could see my pain and help me.”
It took many years and countless treatments, both medical and holistic, for me to finally find the help I so desperately needed. Thanks to Joy of Healing I have been in remission, both pain and prescription free, for nearly 15 years.
Don’t let the nay-sayers who doubt the existence of Fibromyalgia get you down. Never give up in your search for wellness. Keep hope alive. Research and use your intuition to help you find the treatment that works for you.