I am alive, but I am not living...

I just wanted to share my story with everyone. I think it may me therapeutic for me, maybe it will help others? I'm not sure.

In the Summer of 2023 I got COVID-19 for the first and only time. It did not affect my respiratory system at all. It was just horrendous muscle aches, horrible congestion and severe headaches. I was in bed for a couple of days.

Soon after I started getting very mild tingling in my feet, I wasn't worried about it. It started to get worse and worse. It went to debilitating nerve pain in my feet and entire lower legs. I went to my PCP who referred me to get an EMG which was normal. I was then referred to a Neurologist who ordered a skin punch biopsy in May of 2024. At my distal ankle the nerve fibers were <0.2mm and the report said they were "almost absent"... At my thigh the numbers were normal but showed axonal swelling and beaded immunoreactivity.

The next thing that happened was I got SEVERE tinnitus in my right ear. A violent hissing that is reactive. 2 other tones but they are maskable. It then started in my left ear but not as bad. At night, I get SEVERE hypercausis in both ears.

Then came the autonomic dysfunction. My stomach, bladder, bowels, BP (OH), are all severely messed up.

At the beginning it was length dependent, but now it is all over my body including my scalp and face.

I have major blood pooling issues in my legs, feet and hands.

I have severe spinal issues. The worst being a T10-T11 extrusion that has migrated 7mm. This has caused intense ribcage pain. In my lumbar area at L1-L2 and L4-L5 I have moderate to severe spinal stenosis causing narrowing. This gives me intense nerve pain in my feet, legs and buttocks. I know it's connected to my spine because I only feel it when sitting or laying down. I have bulging discs in almost all of my vertebrae. In my cervical area the discs are pushing on my spinal cord. I have bone spurs, spondylosis, ligamentum flavum thickening. My tailbone is extremely painful and causes a lot of nerve pain.

I am 90% sure I have Ehlers Danlos. My PT said that I am hypermobile. I was referred to genetics 2 years ago and will not get an appointment until 2027.

I have severe tremors body wide.

I had my first ever HSV1 breakout shortly after the skin punch biopsy, all of it was inside my mouth and now it is recurrent.

I was recently diagnosed with Chronic Venous Insufficiency and have developed terrible varicose veins. May Thurner is suspected and I have imaging coming up for that. It also looks like I may have developed Lipedema also.

I get awful erosive mouth lesions constantly, they hospitalized me for it late last year. A biopsy was done, I did not get the results until after I was discharged. They were inconclusive due to the biopsy not being performed correctly. I have another one scheduled. They are screening for some pretty serious autoimmune causes.

I have also developed body wide extremely severe allodynia. It feels like someone has thrown acid all over me and then used sandpaper on my skin.

Every autoimmune lab has been negative. I have a lip biopsy scheduled for Sjogrens. Bechets has also been mentioned.

I recently saw Infectious Diseases as at the time of me getting COVID I was working in cat rescue and got bitten and scratched more times than I care to remember. So I asked for Bartonella screening. He ordered blood work, it was all negative but I also know the standard tests for it are very unreliable. It is a stealth pathogen.

I have a specialist for everything but all they do is try to treat the symptoms. None of them communicate with each other despite being all in the same hospital network.

I referred myself for Neuro-Palliative Care and was accepted. I had my first visit with the provider a few weeks ago. I see him in person in a couple of weeks. He will then be taking over my pain management from my PCP.

My life has been ruined. Before all of this I was very active, social, traveled, went to concerts, the movies and so many other things. I am homebound except for medical appointments.

It has been almost 3 years since this all began and I just feel absolutely lost. I grieve my former self.

If anybody is in a similar situation, has any ideas please let me know.