Every doctors appointment feels like an audition to see if I’m worthy of their care.

I am a 40 year old single mom to a teen. After an extremely stressful and traumatic 4 years—I suddenly developed a myriad of symptoms that seemed to come on suddenly. I’ve had weird nerve pain for years but everything ramped up into overdrive Feb of last year.

I remember 2 years ago, I took my son to Vegas. I had an episode while there that shook me—it was like all my senses went into overdrive and the lights were too bright, noises too loud, colors to bright, smells too intense. I had to wear a mask and sunglasses everywhere I went. It was terrifying.

Soon after, I developed migraines that would last 3 days and neck pain. I’ve had countless X-rays and blood draws. Nothing ever showed up. In Feb of last year—everything went into overdrive.

I lost half my hair, periods of weakness, I developed gastroparesis, low fevers, abdominal pain, Reynauds, skin flushing, joint pain and stiffness, I could go on. The symptoms would subside slightly and then when they would ramp back up, new ones would appear. My dr ran X-rays, abdominal CT, chest xray, abdominal ultrasound and everything was clear. They told me it was all in my head. I convinced her to let me see a rheumatologist and they ran bloodwork first.

Everything came back negative except anti DSdna which was 2x higher than the high end of normal. The rheumatologist told me it was a false positive and there is no way I have lupus. He told me that I had fibromyalgia and that “my hard drive is fine but my brain software isn’t working.” He also told me I probably have OCD and to see a therapist.

So I did. I assumed I was going insane and I saw two different therapist (one CBT and one trauma) and saw them weekly for a whole year. I kept getting sicker. My back was hurting worse by the week so my dr FINALLY did an MRI. Herniated lumbar disc L5-S1 bulging into my cauda equine (left side only so not at risk for CES). My entire lumbar spine is arthritic and degenerative. They gave me epidurals which did nothing. Told me to do yoga when I could barely get out of bed.

I went from camping solo every weekend to not being able to walk without a cane in less than 7 months. I finally got into a new rheumatologist a few weeks ago for a second opinion. She didn’t say much but ordered a ton of bloodwork and also ordered a hip xray. I wasn’t sure why she ordered the xray as my hips weren’t hurting it was my SI joints and lumbar spine. But I trusted her and sure enough, both hips have significant sclerosis and a lesion on the right one.

All my bloodwork came back negative EXCEPT the anti dsdna, which this time is 3x higher than the top end of the reference range.

I don’t know what any of this means and I’m so overwhelmed by how quickly I’ve gone down hill. I meet with the rheumatologist again this Friday to go over results.

I am terrified she will tell me she can’t help me like every other doctor I’ve seen. It feels like every appointment is an audition to see if I’m worthy of their compassion or treatment. If she tells me it’s not autoimmune and she can’t help me, I think I might give up. Not by ending my life but by accepting that I’m going to deteriorate until I die because nobody thinks I’m worthy of helping. I’ve seen two rheums, a neurosurgeon, pain management Dr, and gastroenterologist (did MCAS bloodwork and it was neg). The second my symptoms become systemic, they lose all interest.

I am a single mom and I support my teenage son financially by myself as his dad has been unemployed for years. I want to keep fighting for him but I feel like I’m getting so much worse by the month and it makes wanting to fight so much harder. He deserves a mom who isn’t sleeping all the time because any other position than laying on her side is excruciating. He used to have a mom who swam, played games, danced and went on adventures with him. Now he has a lump who sleeps, eats and works.

I’m even finding it hard to work these days. It kills me because I worked so hard going back to school as a single mom to get the job I have and it’s my dream job. Now I am waking up at 4.30 am to go through a crazy routine just to get my body loose enough to drive in a car (which is so painful). I used a cane at work for the first time last week and it was difficult because I’m not used to showing my weakness. I’m used to pushing through pain, grief, sickness and sadness to put on a happy face for everyone else. Me showing up to work with a cane was me saying “yeah, I’m sick” and that was hard to do.

Anyways. I’m rambling now. I just need all the good vibes and could use some support from people who are here or who have been here, because I feel very alone right now and very helpless.

UPDATE New rheum dismissed me as I assumed she would. Tried blaming my anti dsdna being high on a medication I took for maybe a week 9 months ago and haven’t taken since. She had no explanation as to why my numbers continue to increase despite not being on the meds for 9 months. Told me to try CBT therapy (which I’ve been doing for 2 years weekly and my therapist agrees that this is not mental related.) tried telling me it’s fibromyalgia and maybe I should stop taking adhd meds (I’m literally on a child’s dose and it has helped me a lot). She said my hips (which both show prominent sclerosis and a lesion on the right one) could be “just how I was born” even though my hip xray from 6 months ago showed nothing. I felt so dismissed. I told her I’m a single mom and I’m getting too sick to work she goes “I’m sorry” and that’s it.

I’m mad. I’m going to keep trying and will probably reach out to the Cleveland clinic but I feel so defeated. If even doctors don’t care about me, who will??