Thread by @keikoinboston

1. I ended up at an emergency appointment yesterday to see my PCP’s NP because I called to inquire about some bizarre burning pain I had in or behind my left breast on Tuesday.

I was just calling to ask how concerned I should be & the asst offered me an appt in an hour. 😬

2. NP was very nice, asked me lots of questions, wanted to do an EKG to make sure it wasn’t my heart (I have high blood pressure), did a physical exam which hurt though I hadn’t had the burning pain since Tuesday.

Tl;dr: I seem to be fine.

3. She felt that whatever it was, it wasn’t in my breast but under/behind it. Most likely some sort of muscle issue, possibly a cyst. She offered me an ultrasound order but ultrasounds increase my pain so I wasn’t keen on going and spending time at the hospital to get it done.

4. I’m hypermobile and have chronic pain so weird pain is nothing new for me, but this type of burning sensation was something I haven’t experienced before. It felt like my breast was on fire. 🔥😳

5. She recommended I take 400mg of ibuprofen a few times/day and alternate heat and ice. It was really hot yesterday so there was no way heat was was happening.

We decided that I’ll wait until Monday and see if I improve. If I’m the same or worse I’ll get the ultrasound.

6. It seemed like it may have been unnecessary to go in but she told me that women often present with “atypical” symptoms when having a heart attack and any chest pain should be checked out ASAP.

heart.org/en/health-topi…

7. Before I left we were discussing the fact that I’d Googled my symptoms on Tuesday night and she admonished me not to Google. 😠

8. So i told her that I’d more or less had to self-diagnose myself with ME/CFS (which took me 10+ years to get official confirmation on) and non-relaxing pelvic floor dysfunction (which multiple doctors missed for years and which I’d likely had since childhood).

9. She seemed a bit surprised and I was wondering how she could not have heard stories like mine. 🤔

I hear the same story from others with complex cases.

10. I’d been on the phone with someone at a hospital before I went to my appointment who said my story was so familiar to her. She told me that her sister had gone undiagnosed for Lyme disease for 10 years & like me had to do her own research because her doctors weren’t helping.

11. “It’s like a full-time job” she said to me which is exactly what I’ve been telling people about what it’s like to be chronically ill and not have good care coordination from your healthcare providers.

12. I understand why doctors tell patients not to Google. It’s so easy to find all sorts of concerning info which may or may not be relevant to your situation and may not even be accurate.

13. But I can’t call my doctors every time I have a symptom I haven’t had before or else I’d be on the phone and in their office every week.

Having access medical websites and more access medical papers has made a huge difference in my ability to manage my own care.

14. When I googled “left side breast burning pain" I got breast cancer, gastritis, costochondritis (“inflammation of the cartilage that connects a rib to the breastbone”), and I already knew that it could be a muscle spasm and something myofascial.

mayoclinic.org/diseases-condi…

15. I think people have to use their best judgement and know when searching for medical information online may be useful and when it’s better to call or write your doctor.

I wish doctors would stop telling patients that we shouldn’t look things up online.

16. Patients SHOULD be more informed about their health and should learn how to advocate for themselves. You can’t do this if you aren’t willing to do your own research and always looking to your doctors to have all the answers.

17. Doctors -never- have all the answers for patients with complex cases and if we didn’t do our own research, we would miss so much. 🤷🏻‍♀️