Question: Sporadic episodes of shortness of breath, feet and hands bright red?

Hello I am currently undiagnosed and am needing some advice/ possible diagnosis on my health. It started 9 years ago when I was admitted to ICU with Pericarditis, Pleural Effusion, Cardiac Tamponade. My symptoms only started about a week before admission- extreme fatigue, Spardiac episodes of SOB, low grade Temp. I ended up having pericardial window, > 500cc drained from around my heart. I was in the hospital for about 3 weeks and was told by the different specialists that they didn’t have a diagnosis- didn’t know what caused it. I was told my labs were ok except my CXR showed a large granuloma in my lung. Again they don’t know why I had a granuloma and they said that it was nothing to worry about. Well one physician said he would “bet” I had Lupus. A few weeks after being discharged I had episode of chest pain and shortness of breath. Again I was told everything came back normal. I had 2 more episodes of the same symptoms with same answers except this time they were going to try Ibuprofen and Colchicine. I stayed on the medication for about 3 months and my symptoms seemed to go away. I was discharged from cardiology and medication changed to PRN. I only had a few episodes of chest pain and shortness of breath for 7 years. Then about a year ago I started experiencing joint issues- ankle, feet, and hand and wrist. I had difficult time walking, and nodule appeared on thumb joint- X-rays showed no fractures and was finally referred to a Rheumatologist. I was at appointment and my feet and hands were bright red- looked like I had burned, and felt that way too. They had no idea what was wrong either- I have had Raynauds episodes in the past but my hands would always be cold and blue and when I got them warmed up – they still felt cold. I had never felt like my hands and feet were on fire, swollen. Labs were done and the only a normal level was my ACE test. My burned hands/ feet symptoms continued regularly everyday. When I went back for F/U appt. Rheumatologist still didn’t know what was wrong but did say she “thought” I had Sjogrens ( can’t spell-sorry) but I thought a high ACE could indicate Sarcoidosis? She did do a repeat CXR and granuloma was still present and large with no changes- I was put on plaquenil bid. I had some lab work about a month ago- only abnormal was a high RBC – and still no diagnosis. I almost gave up that day trying to figure out what was going on with me- but now I’m starting to have sporadic episodes of shortness of breath. I honestly don’t know where to turn to or what to do anymore. Any advice would be much appreciated.

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5:58 am

i understand your concern about the issue and i know, its really frustrating that we havent got upto a diagnosis still .

i would like to see your old reports so that i could have helped you better.
but to my knowlwdge, it feels you have a multi system hormonal issues causing these symptoms.
a endocrinologist opinion will be of immense help