I have lived the majority of my life with back and body pain. I had several pediatricians as a child, one blaming the pain on lack of stomach muscles, another on my weight (mind you I always weighed under 145lbs as a teenager, not even close to obese), another stated I had scoliosis. Regardless of the numerous reasons I was given, not one doctor was ever able to make the pain stop. I just lived with it, switched positions frequently, took a lot of Advil and continued on with life.
The pain was there at my heaviest, the pain was there when I was 120lbs and in perfect shape, the pain was there when I was pregnant, and after I gave birth. However after the twins were born, that dull nagging non stop pain became intense sharp pain. I saw doctor after doctor trying to receive some sort of relief, most just wanted to give me a pain killer and send me on my way, not a great plan to be doped up with two little ones at home but that was all anyone could offer me.
Blood tests were negative, nerve tests came back normal, MRI showed a slipped disc but it was determined not to be the root of the pain, an X-ray showed my hips were unaligned and discs were deteriorating but that only caused the back pain. I quickly received back injections which helped my back pain for the first time in my life, however that only intensified my body pain. Finally I saw a doctor who changed my life, my pain specialist, he sat down and discussed how this pain felt and then examined me by putting pressure on certain spots of my body. This pressure made me want to crawl out of my skin and run out of his office, but man am I happy I got that exam! I finally had a definition, a reason, a diagnosis! It was Fibromyalgia!
Once I left that doctors office I became google obsessed trying to figure out what exactly was Fibromyalgia. I have learned a lot since being diagnosed 2 years ago, I’ve learned that being from New England has added to my pain because the extreme cold in the winter exacerbates the pain as does the extreme heat in the summer, so I’ve learned to truly make the most of the fall and spring. I’ve learned there are good days and there are bad days so I treasure the good days all the more. I’ve learned most doctors will try to make you a walking pill box by loading you up on each and every kind of pain reliever, anti inflammatory, and anti anxiety pill out there but you need to take control of your own disease and figure out what helps you. I have gotten my self down from over 30 pills a day to just 6 by learning my triggers and relievers. The two best non medical things for me is keeping my thermostat at about 78 with a humidifier going all the time, and using any and every pool available to me. Swimming is my best friend, I use every opportunity available to swim. I use the pool at the gym, the Y, the local lake in the summer, and best of all my moms back yard pool in the summer.
However while I’ve learned so much about my disease and what helps me, I’ve also learned other peoples perspective on the illness and most peoples views are appalling to say the least! People who have no direct relation with the illness will straight up look at you like you are crazy, like its all in your head, like its a dib for attention, like you are making up this elaborate story or that you are simply lazy! Because you cant see my pain, because you cant feel my hands and feet go numb or my knees give out, because you cant comprehend how I can sleep for 10 hours at night and then wake up to stiff to get out of bed and more exhausted than the night before, Because you get a fever and have body aches for a week and I don’t get a fever but live with those exact body aches each and every day, because YOU cant feel my pain, it simply doesn’t exist? Really???
The tip of this mountain of aggravation over peoples misunderstanding of the disease came when my pain specialist switched practices. Unaware I called the office and made an apt vagley just asking for the pain specialist. I didn’t realize I was seeing someone new until I got to the appointment. This new “doctor” came in sat down and straight out asked if I ever thought about seeing a psychologist? What??? he went on saying that he’s looked at my xrays and they don’t show any real picture as to why I have body pain. OBVIOUSLY! you cant see fibromyalgia on an xray! I was infuriated and began to lay into him telling him I also saw a rhumatologist and neurologist in the same practice both who agreed with my diagnosis, that my disease was real, and that he must have gotten his licence to practice medicine from the bottom of a cracker jack box because his bed side manner was horrendous! I stormed out of the office and hadn’t seen that doctor sense, I immediately went home did some googling and called the new practice where my old doctor was and have been treated fairly and ethically ever sense!
This story still eats at me months later, this “doctor” didn’t examine me, didn’t talk to me, nothing! He looked at my chart saw I was on an anti anxiety medication and immediately assumed, that’s it, she’s just crazy! If this arrogant medical professional had taken more than 5 minutes reviewing my case and more than 2 minutes talking with me he would have realized, Yes I take anxiety medication now, who wouldn’t have anxiety issues and bouts of depression with three young children all on the autism spectrum, a husband who works extremely hard but with that has very long hours, and to top it off is in constant pain. However I didn’t have these issues when I was complaining of pain in my teens, or in my early twenties, or even my mid twenties. You cant label my condition of 15 years by blaming it on a life situation of 3 years!
One day I hope there will be more information about chronic pain available to not only the general public but also to the medical professionals in society because the one thing that hurts worse than the pain a person with fibromyalgia feels everyday is the feeling of knowing just how many people out there think your simply crazy!