15 years no closer to answer's

Hi everyone, I'm just winging it and reaching out to the Internet today to ask if anyone knows anyone or any conditions that sound like mine. If you have, I would love to hear from you. I'm not sure how to explain my condition to the people of this site. But as I mentioned, I'm just winging it today. I'll try my best with the ages & symptoms. I got sick as a kid. My condition affects my whole body now. But the first 6+ years just my legs, specifically the shin bones. 'Still does today at 30.' Upto waist. Before spreading upward to other regions of the body. So think of it like this, shin bones legs upto the thighs groin region to then the belly button aera. Then to chest high, then shoulder armpits area to the head. Complete .The process was slow. Every 2/3 years give or take. If I took care and rested in bed not pushing my body it was slower if I tried being " normal" forcing my body, faster deteriorating/ spreading. With that it spread, for ex: it could be waste high and I could feel it in my chest region already. Like a early warning of what's to come before fully committed to the knew aera. A ghost like kiss before completely overtaken. The onset of the disease was quick at 15 yr old. Some early warning signs were there, tired, fatigue, slept a lot. 10 + hrs night plus day naps, sore. Legs bones hurt. But 15 yr olds don't know what they don't know. The symptoms are unbelievably agony . Extreme pain in both shin bones that cause walking issues. And no bending or squatting for context, that's more force to the legs. That causes issues to this day but not like years ago. Best of routine I made that helps. The Agony in both shin bones also simultaneously seem to release something that causes me to have to constantly circulate through my body. This is that extra complicated part. Causing me being bed ridden, more so the first 6+ years but still need to be to this day. Before I found a balance that works for me. Now being bedridden and standing vertical seems to help, no sitting long or exterior pressure to legs, and like a brita filter, I urinate constantly. It's my body's only source of trying to process it in & out my body. I'm reaching out because 15 yrs no answers and my diseases /illness has changed this march 2026. It has always been progressively getting worse. But this year it's to much. It's different and the same all at once. I'm still figuring it out myself. If anyone knows of a similar case or person. With bone pain, leg swelling. (Skin honey comb pattern mild) Hot boiling leg to touch. Radiating heat from the bone in the legs. Hot to touch if you break resting or routine that works. Cold helps / heat makes it worse. Urination releases the pressure on the bone & legs themselves. Sitting more than 20 minutes makes it worse. Causes fatigue. Need sleep & naps. Causes dizziness & passing out but not so much now with routine. And primarily affects blood circulation system & lymphatic & most important bone. I've seen lymphatic so that's been ruled out. Rheumatologist only 2 long term and bounced around being told no by others, cause they want text book easy. Neurologist a few but same situation 3 & done. One vascular & blown off. Urology 5 dr cause there are issues there a lot as it effects it greatly, having to urinate constantly. And over 3 dozen family medicine and Internal medicine offices. Other than that just misdiagnosed left & right. Do to the complexness of the symptoms and young age it started. And lack of care in medicine. Do to money & travel , I got no medical help with onset of disease at 15. Went to a Dr at 19 yr. With very visible symptoms but blood work was normal. So I was given no help or options. So as I said, just leaving it in the hands of Internet people. Hoping for a hail Mary. Thanks for anyone that reads this, I hope if the time comes I can see your posts. Thanks to anyone that reads this.