Summer D. - Diagnosed at age 42
When I was 28, I started feeling tired, more than normal. It was almost painful how fatigued I became. Shortly after that, I started getting joint pain and not regular aches and pains either. I was spaced out, and it took everything I had to function and concentrate. That was so unlike me because I worked out, I even had a trainer.
However, my job was managing restaurants which was becoming too much because of the hours and staying on my feet for 10, 12, 16-18 hours at a time. I went to my doctor and he wasn’t concerned. He gave me ADHD meds for my foggy brain and exhaustion. The meds helped with the fatigue and brain fog but the joint pain kept getting worse. I applied for a management position at a nicer restaurant because the hours aren’t so brutal. They transferred me, where unfortunately my boss decided since I was unattached, he could work me as much as he wanted.
I thought I found the right doctor for a minute afterwards. He did a CT of my abdomen and admitted me to the hospital. Unfortunately, he couldn’t figure it out so he accused me of drinking Pepto Bismol to throw off the scan. I was accused of being a drug seeker when all I ever asked for was a referral to a rheumatologist. Each time the medical staff was rude and skeptical until they had bloodwork and scans. Then after hours of tears and pain, they treated me.
Finally, my general practitioner kept ignoring some serious back pain for over a year. He said the x-ray was fine. I couldn’t take it and didn’t need a referral so I went to an Ortho doctor. He immediately sent me to a surgeon and she did injections and an ablation procedure to deaden the nerves in my lower spine. She agreed with my autoimmune theory and sent me to a rheumatologist without bloodwork to back it up. Her sister had a stroke before anyone listened so she knew all about it. My ANA was extremely high, as was my cortisol from all the stress on my body. It took 14, almost 15 years for me to get help. That should never be the case.