17 Long Years
I had the normal childhood health things growing up. Chicken pox, tonsillectomy, that kind of thing. I did end up with scoliosis. And I was allergic to the anesthesia used for the tonsilectomy and developed Vitiligo at age 4. It gave me a streak of grey hair at my right temple. Kids at school called me skunk-girl. (School aged kids aren't known for being the kindest.)
It was in June, I was 33. I'd been extra tired lately, even taking naps – something I never did, but chalked it up to being so busy with a full time and a part time job, a marriage, taking care of a house and having an elementary school aged son. I felt like I was coming down with the flu. I remember going to bed, not realizing the life I knew was over.
When I awakened the next morning I was so achy, and tired, and had a monstrous headache. After a few weeks of having this "flu", and experiencing migraines for the first time in my life, I went to a general practitioner. I remember taking all these tests for my thyroid, Lyme, blood test after blood test. Everything came back normal.
It was the first time a doctor ever told me the pain was all in my head.
All in my head (again)
I wouldn't accept that. Something was definitely wrong! In the few days after I got "that flu" the pain got worse. I started having debilitating 3 day migraines and developed food allergies as well. I was walking into walls because I was so tired. I went to more doctors, had more tests, had even more normal test results. Even more doctors told me the pain was all in my head.
One doctor made me so angry I actually kicked him in the shin. I asked him if he felt that. He said it hurt while looking at me in shock and rubbing his shin. I told him, "YES, the pain IS all in my head. That's where pain receptors are located...in the brain!!" I called him a fool and told him not to bill me. I never did receive a bill from him either.
I was at my wits end by then. My normally immaculate house was not getting clean, I couldn't do things anymore, I was taking too many sick days at work because I couldn't function, my brain stopped working right - I couldn't go to the store because I'd forget where I parked. If I found the car I'd forget how to get home...a house I'd lived in for years!
I finally called a local hospital and talked to a nurse. I explained all my symptoms. She had me talk to a doctor there who setup an appointment with a neurologist. I saw that neurologist, he did more blood/thyroid/lyme tests - they came back normal...again. He poked my body and each poke hurt so badly. I was finally diagnosed with fibromyalgia...something that was kind of “new” at the time and not widely known. I remember leaving that visit in a weird euphoria...glad I finally had a name for this horrible illness but devastated that this kind of pain was going to be with me the rest of my life.
He put me on medications. One for sleeping, another for anxiety, yet another for pain, etc. A bunch of pills. After trying a medication, we'd find it didn't work. Onto the next one. Or it would cause problems with another pill so I'd have to change two meds. One medication seemed to help but, over time it would stop being as effective so the doctor would raise my dosage. After several years of taking this medication, I was over clinical levels, and hallucinating on it. That doctor kept telling me it was working and I could take more. It was obvious that he wasn't listening to what I was saying.
Life coming undone
When my husband abandoned my son and I, due to the hallucinations and my health problems, I fired that doctor and weaned myself off of that medication. The hallucinations went away but my pain increased, as did my lack of sleeping. Sigh.
I became quite distrustful of doctors at that point. But I still had pain and was determined to find out what was wrong with me. Two dermatologists diagnosed me with rosacea and icthyosis vulgaris. An Optomologist diagnosed me with an early onset cataract in my left eye.
My full time job fired me because I threw my back out and couldn't come into work. Great, now I lost my insurance. Had to wait for my next work based medical insurance because, guess what! Medical insurance now classified me as having a pre-existing condition. The rates for a month of medical insurance was about the same as my monthly mortgage payment!
Fast forward a few years – to current time. I’d gotten, and lost, a few jobs because of various reasons. I finally found a job that I truly enjoy doing and they provide medical insurance too.
New symptoms and a final diagnosis
I was becoming even more tired and insular, the tips of both of my index and middle fingers became desensitized, my migraines calmed down at least – only a few in a year’s time instead of a few each month. However, my joints started to burn and swell. I picked up my laptop and ‘click’. Something in my back went awry. I dropped the laptop in severe pain. And I was instantly in a flare. Hurt to sit, stand and lay down.
I went to a GP – he refused to take x-rays and told me the pain was all in my head. Nope, been here before, not doing it again. Made an appointment with another doctor. I was talked down to, interrupted by this one, and she also refused x-rays, and treated me like I was drug seeking. Insert SEVERAL cusswords at this point! And that last doctor sent me home with physical therapy paperwork...that belonged to another patient! Sheesh!
I tried again. Made another appointment. By this time I’d seen 5 rheumatologists, 3 neurologists, 2 occupational therapists, 2 dermatologists, 1 physical therapists, and too many G.P.s to count.
This last rheumatologist saw my swollen knuckle joints and took down information about what happened to my back. Refused to give x-rays, talked down to me, but did give me prednisone. Told me to come back in two weeks.
The next time I took a patient advocate. He took one look at the advocate and treated me very differently. He took his time with me. I got my x-rays and found out he hadn’t fully read my chart to even know I had an auto-immune disease (vitiligo). That truly ticked me off! The information was in my paperwork but NONE of the doctors read that far (my chart is rather thick).
The scoliosis in my back had given way. My spine is a full sideways “s” now. My migraines were caused because bone spurs were pushing against nerves in my neck, and the migraines calmed down when they grew past the nerve. But...I was FINALLY diagnosed with Rheumatoid Disease, now that it has affected every joint in my body. It is now difficult to stand, sit, walk and lay down. My hands no longer work properly...
...and it only took 17 years.
When was your last flare?