Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

I was diagnosed with Mesenteric Panniculitis around 5 weeks ago. Previously, I had been diagnosed with fibromyalgia. None of the treatments helped and had been living with intense back and lower joint pain daily. Before this I lived with Gallbladder disease for over a decade before they removed it. They removed my appendix before they removed the gallbladder. After they finally removed the gallbladder I soon realized I was continuing to have similar stomach pain, but they never found anything. This last time they did a CT scan with contrast and diagnosed me with MP. My GP started me on a prednisone taper and all the horrible “fibromyalgia pain” I’ve been crippled with for years was magically gone. Unfortunately, stepping down in mg on the taper it has all suddenly returned. Because MP is so rare my GP doesn’t know who to send me to. He referred my to a gastroenterologist and a rheumatologist, but admitted they might not know anything about MP. Because the prednisone alleviated my intense back, hip, knee, ankle, and muscle pain, both my chiropractor and the doctor I get TP injections from have mentioned the pain must be caused by systemic inflammation. I have read that MP can do this, but I feel like I have to convince my GP. He actually said to me that MP is very rare and most patients have no symptoms. Like I shouldn’t be attributing my mysterious inflammatory symptoms to the inflammatory disease I was just diagnosed with because most patients are asymptomatic. He also went over how I was diagnosed and did confirm it was done correctly, but has still failed to update my chart with the diagnoses even though he is treating me for it. Being such a rare disease, I feel like I’m fighting an uphill battle with my doctor because he just doesn’t know enough about it and isn’t confident. He would prefer to send me to a specialist, but has no idea who. I don’t know if this information helps anyone, or at least validates their symptoms. If you have symptomatic MP, best of luck.