My sister Deena found your site and suggested I check it out. As she said in her intro, we were diagnosed a few months apart, about 4 years ago.
My journey began in 2011 when I answered my personal cell phone, which I often transferred my office phone to after hours, and identified myself by my sister’s name. It scared me. I thought I’d had a stroke, but there were no other symptoms. I went to the doctor right away. He laughed; said I must have been thinking about my sister when the phone rang. He said it was probably hormonal, PMS or maybe menopause. And that I was depressed and wrote me a script for anti-depressants. I didn’t take them.
A few weeks later, I was using the bathroom, which according to my mom I have been doing quite successfully for some time. After I wiped my hoo-ha, I threw the TP on the pile of dirty clothes on the floor. I immediately realize my mistake, but it still scared me. I went back to the doctor. More laughter. More nonsense about my lady parts being to blame and not to worry so much and, oh, by the way, here are some more anti-depressants. Which I did not take.
I’ve live with depression on and off for most of my adult life, and I know myself pretty well. I knew for absolute certain that I was not depressed and told the doctor this each time I went back for these kinds of symptoms. This was met with much poopooing and suggestions that I was just being stubborn.
The last straw came after I went in to discuss the fact that I was having trouble with my vocabulary and word recall and he literally dozed off. I found a new doctor. I really liked him. He was attentive and interested, he made me feel like the only patient that mattered. He scheduled an MRI after the first visit, which showed no evidence of a stroke and no lesions, just some 'turbulent flow". He tested for early onset Alzheimer’s. I passed with flying colors. But he listened and kept looking for answers until I moved in 2013.
Another new doctor. But luckily, she also listened to me right from the beginning and tried to find a reason for my weird and varied symptoms. Cognitive difficulty, (including reaction delays, decrease in spatial intelligence, word recall problems, inability to pay attention, forgetfulness), hip, shoulder and elbow pain, little patches of skin that felt like raw nerve endings, olfactory hallucinations, profound exhaustion, gnawing lower back pain, numbness in hands, urinary problems, etc., etc., etc.
After multiple visits to a neurologist and 2 more brain MRI’s, a visit to an ENT, numerous lab visits and soooo many blood draws, my Dr. referred me to a rheumatologist as a last resort. She didn’t think my issue was autoimmune and all my ANA’s were negative, but she was flummoxed and I wasn’t finding any relief.
For more than 3 years I had been searching for an answer, 20 minutes into my appointment with the rheum. he gave me a definitive diagnosis of fibromyalgia. While I had been ranting about my mental difficulties, he had been squeezing and poking and watching me move. Until then I didn’t even know fibro could cause brain fog, let alone that it was so prevalent that there was a name for it.
My relief in having an answer was somewhat short lived. No magic bullet. No sure fire treatment. Just a future of pain and fog and chasing the next medicine or therapy. Sometimes they work, sometimes they don’t. And sometime they work…then they don’t.
My husband of 23 years and my adult children try their best to comprehend and pick up the slack. I work full time as an elementary school custodian and my boss and co-workers know about my condition and are supportive. But the only person in my world who truly understands is my little sister. We have been on this path together for nearly 4 years. With each other we don’t apologize, explain or need excuses. Soulmates <3
I have a lot of questions and a little life experience to share here. I’m so happy to have found a place to meet more people with whom I can be the real me, without guilt. Thanks for being here.