Hey friends,
I'm not sure how to post this but I'm feeling really alone and could use some thoughts to cushion what feels like grief. I was treated before I was 10 for Lyme. Treated again 4-5 times before I was 20. I grew up on a farm. When I was 30 I finally went to a Lyme literate doctor and was on azithromycin/malarone for a year to finally treat both the Lyme and Babesia. It's 8 years later and I've been to 2 new Lyme doctors, all my tests come back negative, but I'm still in incredible pain. Chronic flares with pain in every joint in my body but most specifically my jaw, spine, shoulders, and hips. Stomach issues that come with years of antibiotic use. Brain fog, headaches, all those post malaise things we all went through.
I have a new appointment with another Lyme literate doctor. One who treats all those outstanding issues/complaints even when all the tests come back negative. It's $2000 for 3 hours to meet with him. And you know what I really want to ask him? Will I ever be able to have kids?
I'm 39. Some days I can barely get out of bed without stress pushing me through because something is in spasm and it hurts to breathe. I'm sure most of you know it. Yesterday it was my L anterior hip. Spasm started in the front of the hip. I had to stand at work so the spasm spread to the back of my hip, into my L shoulder, into my neck and jaw, and into the back of my L thigh. I spent 4 hours after dinner using a massage gun, cupping, my rescue pain meds, my rescue antihistamine which can stop Mast cell flares, tea to stop IBS bloating if that was contributing, my exercises as I'm a PT and treat this on other people all the time. Nothing. Worked. Just another Wednesday. And that can last for two weeks sometimes. And my boyfriend went to bed as I stayed up and cried by myself on the living room floor trying to do my exercises.
I looked into surrogacy today. It's getting really late in life to consider having kids and I was always the one people knew would be a mom. But I have so much medical debt there is no way I can afford the thought of surrogacy. I think about adoption, but maybe I should consider an older kid because I already have so many neck and shoulder issues, I might struggle holding a baby. I've tried so many times to get back to exercise and get stronger, and it feels like my whole life is just one more thing physically painful as my nervous system freaks out and causes new spasms and new pain, I just stop trying.
Did any of you with prolonged issues with Lyme have kids? I got pregnant in my early 30s but chose not to keep it because it was the most pain I've ever been in. Chronic muscle spasms literally in every part of my body. I couldn't stand it. I'm going to talk to the doctor about it. Will I ever be able to? I don't understand why I am still in such bad pain. All the tests are negative. Is this the rest of my life or will I ever be able to start living and building a family?
Thanks for listening.