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Sick of doctors guessing and getting no answers

Aug 23, 2015 8:16 PM

I am new here, but I have been in pain for about a year. I am 32 years old and work as an elementary teacher. I have made two trips out to Mayo clinic as well as changing doctors and seeing other specialists out of state. I recieved no answers for sure. Initially at Mayo they said I had fibro, but the specialists disagreed with that diagnosis. I also have AS, but that is not my main issue. I returned to Mayo clinic this summer because every time my regular doctor would give me steroids (for a limited time) I would feel like myself again, then it would disappear and pain would come back. She said this shouldn't happen with just fibro, so sent me back to Mayo. Specialist out there said he thinks I have a spinal disease that takes years to diagnose and the tests cannot detect, so put me on Enbrel injections. I just began this medicine and I have been pukey and ill feeling. It has reduced the severity of the pain, but it is still there and the side effects are terrible. I am tired of eating pills and still not feeling well. I am afraid of hurting my body and at the same time I am afraid of losing my job. Last school year when this began I had to leave teaching for a few months because I could not function as a human being. Has anyone heard of anything for the pain that has helped without taking more pills? My husband is ready to pack up and move our family to a hot climate because the best month I have had was July when the temps were 75-90 degrees on average. We are from MI and this is a huge move and far from family. Not sure what to do, but I can't live like this. I am literally taking pills for side effects for other pills. I hate it! Any advice?

Aug 24, 2015 8:03 AM

We went to see my mother in law yesterday in the assisted living. She's blind and slightly weak on her right side, but otherwise healthy. She was complaining "I hate all this happened to me. It's not fair. Why did it have to happen to ME(as if others should have it happen but not her)? I just want to die." I asked what "all this" meant and she said going blind. I told her no one wants any hardship or gets to choose who it happens to, and that life isn't fair but we have to learn to deal with it. Then she said, " no one has it as hard as me. " I asked her, "If you could have your sight back, but had to have all my medical problems (she knows all of them), would you be willing to swap?" Her response was, "well of course not! I want a normal life." I told her this is my normal life, and she'll be better off when she accepted her blindness and started trying to learn to cope with it. Then I told her about the spoon theory, how it costs each of us with chronic pain a spoon (energy amount allotted) to cook, clean, bathe, dress, etc. She responded by saying, "that's just silly! Your have more than that." I told her she has no idea how blessed she is that she's not paralyzed lying in a bed, and she needed to stop complaining and try to learn from those who are there to help her. She grumbled at me. When we were leaving another house mate commented, "she gripes and complaines about everything.". I said, "I know, she's been like that all her life." 🙏🌼

Aug 24, 2015 8:13 PM

Teacher, have they checked you for autoimmune disorders? If the steroid helps, it almost sounds like that. I live in michigan also, and can relate tho the weather. Have you tried changing your diet?

Aug 24, 2015 8:47 PM

Hi there teacher. I can relate in part with the feeling so much better on steroids and/or antibiotics. I've never really thought about it so not considered that maybe there's another reason for my pain. May have to ask the GP about that.
I believe many use a tens machine for pain. I've never used one but I know some swear by them.
Do hope your pain eases and you are able to continue with your work.
P.

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