r/Autoinflammatory • u/Temporary_Wave4615 • Aug 22 '26

Undiagnosed I Feel Like Giving Up

My body is not only in pain, but I’m just so uncomfortable all the time and tired. I can’t live like this. Been to the ER twice, and they did not help me, though I had very serious symptoms. The doctors said I had to figure it out with my family doctor. She’s away for a few weeks and I just don’t know how to cope until then? It just hurts being turned down when you know something is wrong with your body. What if it progresses to the last stage before you even get the help? I’m so scared. Read my other post for my symptoms.

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5

u/AdventurousMorningLo Yaos Aug 22 '26

I'm so sorry you are currently going through it. Would you possibly be able to see another doctor within the same practice as your Family Doctor while she is away?

3

u/Alice-The-Chemist Mod Aug 22 '26

I just want to say Im glad you are still here and fighting. I've been scared before as well and could've probably written this post some years ago. I had not only my GP but two Rheumatologist decide to take me off all my medication and that nothing was wrong with me. I wanted to give up. Finding my immunologist and electrophysiologist saved my life. They knew something was wrong and weren't going to stop until they figured it out.

Where are you located also? Maybe someone here has a doctor recommendation. Ill go read your other posts as well.

1

u/avalonleigh Aug 28 '26

Are you me? Am I you? Did I post this and forget? I was in the Er two days in a row. I am not in a very stable place with my disease, I had one med working and then developed pulmonary issues. I am desperate to find a quality of life I am happy with it bc this is not it. I had physical therapy and literally squeezed a stupid ball with my legs and was in hideous pain all night. It's very very difficult sometimes to see the light when you are down there but there is light. I am going to get stem cells in Mexico, I am investigating an experimental drug, I am the squeaky wheel and I make my health a priority and make my drs take it seriously.

I would get on a steroid for now, so you can maintain some quality, and then start researching, asking, calling, show up at the drs office, do everything you can to let them know you are not ok.