I realized today that I had never recorded my whole chronic illness story. It’s very lengthy because I didn’t want to forget anything.
My story began about 3 years ago right after the birth of my son. Right after his birth I was feeling great-despite having had a c-section. I had been so sick during his pregnancy, I was just happy to have the 10 lb 10 oz kid out of me. I started feeling better and better, but then when he was about 2 months old I started feeling tired all time. I brushed it off, thinking it was because I had an infant. Then my hands went numb, and I ignored it. I have an extreme dislike for doctors, and I felt like if I went to the doctor they would just brush it off. Shortly after that my hands started to swell and hurt. I couldn’t do up buttons, open jars, anything that required dexterity. I ignored it. Soon after that my neck started hurting, especially on the sides. I went to the urgent care thinking it was some sort of infection. I was told it was probably my thyroid.
Then I went to the family doctor, where I brought up the sore neck and the swelling and pain in my hands. The doctor ran the standard tests, and they all came back negative for thyroid problems, rheumatoid arthritis etc. At the follow up appointment, I brought my son with me, and that was a mistake. The doctor said I must have postpartum depression. When I insisted that I didn’t have ppd and that getting this baby out was the happiest day of my life, he declared that I must have carpal tunnel, completely ignoring the fact that my left hand was way worse than my right (which makes no sense, since the right hand that I use all the time would have been worse). So I dumped that doctor.
I ignored my symptoms for the next few weeks, until the pain got even worse. My next trip was to an internist. He ran the standard tests, which all came back fine. He tried the postpartum thing is well, but when I argued he refereed me to an endocrinologist because he thought I could have a lump on my thyroid. So I went to the endocrinologist who found out I did have a lump on my thyroid, but he told me that would not cause any of my symptoms. He told me it was postpartum depression and wouldn’t listen to me when I explained that I was not depressed.
The endocrinologist sent me to get my thyroid biopsied and the biopsy turned out negative. I wasn’t convinced the endocrinologist was right about my symptoms, so I went to another one. This doctor said she didn’t even know what they had biopsied, my thyroid was perfectly fine. She questioned the validity of the other doctor and again PPD came up. Seriously people just because I had a baby and I am having health problems does not mean I am depressed! Believe me, if taking anti-depressants could have fixed my problems, I would have taken them.
So I was back to square one and my symptoms kept getting worse. The pain moved to my knees, arms, shoulders etc. I was in so much pain I could barely move. I was ready to give up, but my husband forced me to go see a rheumatologist. The rheumatologist was the first person who looked at me and said, “something is wrong, I can tell.” But all my labs came back fine, as always. So she diagnosed me with fibromyalgia, because I did have all the tender points required to meet the diagnoses (and more). At the time, I didn’t really believe in fibro, not that I thought people were faking, more like it was a diagnosis you get when the doctor has no clue what is wrong. I fought the diagnosis for a long time. After about six months, I finally decided that I better just accept that this was how my life was going to be. I still felt horrible all the time, but I started to learn to manage it.
Along the was a visit to an ENT for swelling behind my ears and intense ear and neck pain. After a cat scan and multiple visits- no answers. Then the pain spread to my mouth and so I went to the dentist. The dentist diagnosed me with TMJ and gave me a mouth guard to wear at all times. This at least helped with the ear pain.
Then my sister in law told me about a fibromyalgia/CFS doctor that was really good. I kind of put it off for a while because I hate doctors and I was tired of them giving me a hard time about my pain, weight, and supposed “depression”. Finally my husband bugged me enough that I made an appointment with the doctor, purely to make him happy. But I was pleasantly surprised by the appointment, not once was depression mentioned. She also asked if I had been tested for Lyme disease, and when I said no, she asked where I was from. I told her I was from Michigan, and she said that we should test for Lyme, just in case.
Well, surprise! It came back positive for Lyme, which shocked both me and her. I’m actually one of the lucky few Lyme patients who had a positive test by CDC standards. The doctor couldn’t believe that no one had ever mentioned Lyme to me before, and I couldn’t either! She also diagnosed me with CFS and Ebstein Barr which she felt had resulted from Lyme destroying my immune system, which was basically none existent. I thought all my problems were solved, all you have to do for Lyme is take antibiotics for a little while and you are cured!
Well, turns out that isn’t true. After Lyme treatment I’m left with a broken and damaged body from the years I went undiagnosed. Now I live with the consequences of all those bad doctors. My Lyme could have been cured in the beginning with one bottle of doxycline, but now I’m left with being and pain for the rest of my life. I will have fibromyalgia forever because there is no place in the medical system for people like me.