Trying to find answers and right diagnosis and Dr

Posted by jej @jej, Jan 3, 2023

Lengthy, but a run down. I had a horrible experience at my 1st rheumatologist visit today.
41 female. Got really sick last January, been seeking answers ever since. Always been active, and relatively healthy,aside from issues with feet and back.
Fatigue hit me hard past year, putting my normal life on back burner. Also have hair loss, lost 30 pounds, nausea, vomiting a lot, loss of appetite,constant low grade fever, bruise easily and all over, the fatigue is horrible, stay hot all the time (spent entire life being cold till now) . I spend every day feeling like I have the flu, is a good way to describe it. I don't sleep at night, not a problem falling asleep,but wake up and can't sleep after that. Headaches are non stop. I also spit up blood ( not cough, but spit up blood). My joints hurt and pop, and swell. I have started to lose motion in my hands ,and they are bothering me terribly along with my knees ,and wrists. Worse of morning and after sitting, but does keep me up at night too. Hot water and hearing pad helps.
13 years lower back started hurting, didn't have it looked at . 9 years ago feet started. Been numerous times. Diagnosed as plantar fascitis, insertional Achilles tendinitis, collapsed arches, neuropathy, retrocalcaneal bursitis, bone spurs, bone marrow edema,arthrits, degenerative ankle tendons. Told overuse due to job,and work,and had to be a root cause but dr never followed thru with finding.
Been for knee and elbow. Arthritis and tendinitis.
Started spitting up blood about 5 years ago. Have asthma and assumed work caused it from paint,sheetro k dust etc. Not painful at all,but irritating.
Dealt with all that,but can't handle fatigue
Seen primary. Ruled out diabetes, thyroid etc. Waited 4 months for gastro appointment. Did more bloodwork, high ferritin, high esr ,high platelets and alkaline phosphate. Said I need to have gallbladder removed but definitely awasnt cause of these symptoms. Said labs pointed autoimmune,and sent to rheumatologist. Primary and gastro both do not listen. Rheumatologist has been the worst visit of my life.
Told me I have 5 of 6 fibromyalgia symptoms. Did hand x rays,all he said was degenerative ,not life altering crippling. I won't even go into his attitude and what not, but proceeded to tell me i had a lot going on and may have a ..chemical imbalance.. I stayed on the forms I have been diagnosed with anxiety and depression since 16. This definitely isn't what this is, but of course hasn't helped that situation. Depression doesn't cause high esr and me to spit up blood. Wanted to do labs and do thyroid panel which was already done,but yet wouldn't xray my back. Told me he was a rheumatologist not a back dr but I definitely needed it looked at. I am at a loss, and haven't got much fight left in me with this. Nobody listens,nobody gets it. Nobody will do anything. Primary has pulled me off meds except bp,saying they do t wanna exasperate the situation with a potential bleeding ulcers. Gastro says to seek other help,because those symptoms are more bothersome..agreed. Rheumatologist said I should seek some more testing from Primary and gastro to help with the puzzle,and that if I see someone for a chemical imbalance I may feel better. I am at a loss, and just need some direction .

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Hi jej. I've read most of this thread, and so sorry you don't have a primary doc. I finally just found an Internist as my primary. The whole primary situation has been a MAJOR reason I've not been diagnosed in 5 yrs (the fabulous one I had moved away). This is obviously a MAJOR issue for you. Any luck finding new one? And you are paying out of pocket? ...I can't imagine. So sorry 😞. I have 12 of the symptoms you have. But I have low Ferritin vs high. I don't want this to get too lengthy, but I'm happy to private msg with you. P.S. The way I found new primary was by asking several friends and neighbors for recommendations. I finally got lucky. It can happen for you, too. Xo

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