Flare up symptoms
Hello, 23F. I’m writing because I’ve been having these ongoing flare ups for over three years and no specialist can seem to get to the bottom of it. I need the chronic illness community to help me point me and my doctors in the right direction.
My current medical history includes Endometriosis, Type One Diabetes, POTS, SVT, EPI, Gastroparesis, Narcolepsy, Sleep apnea, chronic fatigue, chronic migraines, suspected Sjogrens disease, connective tissue issues, hypotension, tachycardia, GERD, Fibromyalgia, Occipital neuralgia, Posterior tibial tendon dysfunction, pelvic dysfunction etc.
These flares first start around fall 2023, and I would have period where my cervical lymph nodes on both sides of my neck would swell. They didn’t cause any other symptoms for awhile, no pain or anything just inflamed nodes measuring up to 3cm at points showing hazy stranding indicating inflammation was present.
Fast forward a couple of months, these flares slowly started to come with more symptoms with the swolllen nodes.
Before a flare comes on, I typically notice a sore feeling in my throat (not sick sore, but like a muscle strain kind of sore), and my sweat/urine will smell slightly sweet.
Then that typically follows with severe inflammation, widespread body aches, drenching night sweats, fever, limited neck mobility, hip pain, chest pain, knee pain, constipation, shoulder pain, dizziness, debilitating fatigue, lack of appetite, nausea, sometimes a dry cough etc.
When these flares happen I have had imaging done, as well as labs. So far they have ruled out bartonella, toxoplasmosis, active EBV, all hepatitis related things, lupus, ANA was negative, spinal tap was normal, etc.
I have noticed possible triggers for these flares include, alcohol, immune support pills, mold exposure, excessive exercise or movement, stretching my neck, heat, lack of sleep, or after a sickness when my immune system is already weak.
I can’t pin it down to a single thing.
The next step is a biopsy w my ENT, but because the lymph nodes don’t stay swollen and are painful, she says it’s likely not lymphoma because it typically presents without pain and they don’t go away.
The only thing that somewhat helps during these flares is IV fluids, Torodol injection, medically administered fentanyl, or morphine. But even then, the medicine never really helps the neck pain.
Is there something my specialists could be missing? Has anyone else had these symptoms?
Could this be endometriosis effecting my lymph nodes?
I appreciate any help, at this point even if it is cancer I would just be happy and relieved to have an answer.
#endometriosis #typeonediabetes #flareups #autoimmune #lymphoma #lymphnodes #lymphaticsystem #chronicallyill #chronicillness #ent #rn #pac #moldtoxicity #heatintolerance #POTS #fibromyalgia