u/Chemical_Sundae6370

Hello everyone, ‘complex case’ here. i would like to share my undiagnosed chronic pain issues. If anyone has any ideas or has experienced anything similar, please comment or message me. :)

Sorry it’s a bit long. In October 2024, i was diagnosed with HSV-2. I started experiencing painful symptoms in my legs, such as numbness and deep aches. I could barely walk properly. I had never had any symptoms like this before. I found out that these were normal symptoms for someone who has just had their first outbreak. However, when they didn’t stop and became worse, spreading to other parts of my body, I started getting concerned. I reached out to a hsv charity and they assured me that the virus only affects one dermatome and would not have continued this long. The pain began getting worse and was moving up my back, severely affecting me every day. I was only getting a few days in the middle of pain flare ups. I began having lots of time off work and working half days, then I ended up not being able to work at all. I was constantly at doctors appointments, many of them paid specialists. No one knew what was wrong. The pain moved into the form of muscle aches and intermittent numbness. At the end of march I developed a ring rash with a few small rings on my chest. This expanded over my abdomen, flaring into a huge itching rash. More doctors appointments and still no ideas. By May, the pain became so unbearable in my back that i went to A&E. They found weakness in my legs and were concerned so i had an MRI. They found slight 2 bulging discs- nothing very abnormal. It just made no sense. I was then instructed to have MRIs of my brain and pelvis which i did privately, both came back normal, with a ‘few tiny bilateral high intensity foci’ in my brain, which they said was normal. My blood work and Rheumatoid markers are also normal, and i have negative lyme disease results. I experience very painful muscle knots in all of my muscles seemingly randomly and my muscles become tense, hard and aching. I also get burning nerve pain, fatigue and headaches. the pain tends to affect my whole body, with really sore points around joints. I don’t have swelling. My pain affects me every day, and before this I was a very active and healthy 23 year old. I have been diagnosed with fibromyalgia but I’m convinced there’s something more. I would love to get to the bottom of it and get a diagnosis, for my own sanity and so i can find appropriate treatment.

Would anyone be interested in helping to direct me to the right professional/ share any thoughts? Should I get second opinions of scans? See a neurologist or rheumatologist?

Thanks in advance :)