I don't know what to do next - I'm tired

Posted by kizu @kizu, Apr 8 8:48pm

I don't know where to go, I don't know who to talk to. I've fought for years to get my pain and myriad of other symptoms taken seriously. I was finally referred to a rheumatologist, and I've seen him 3 times. I thought it was going to be good because he gave me a bunch of tests the first time and everything to rule out a bunch of stuff.

But then everything came back normal... just like its always does ... he gave me meloxicam and told me he thought it was fibromyalgia and left. Today was the third appointment and my sleep study results finally came in -- except when I did I have it done it was an at home sleep study, and it was the first night before back to school again. I couldn't get it to stay on, either the finger thing stopped working or the nose cannula stopped reading and I only got like 2 hours of sleep because I couldn't get it to stay on.

I tried to tell him this, but he just kept repeating that the results said I had sleep apnea and that losing weight would help. "You can use this diagnosis to go back to your pcp and get ozempic." I've already lost 120 pounds in the last year and a half. I'm still a bigger girl, but I'm just so fed up. I tried to tell him I felt like I wasn't being listened to and no one is really looking at all my symptoms together, that I feel like a few are picked out that seem "easiest" to fix, and then I'm given medicine that never seems to work and then nothing else is done about it. He just shut down, told me he's open to me getting a second opinion since I'm obviously not happy with his care.

I started to cry. I said I'd waited 2 years and gone through so much just to get into this office and I just want someone to listen and help. I hurt so badly and all my other symptoms and I just don't feel like fibromyalgia is the whole picture. I get this horrible pressure in the front of my face and get dizzy when I stand too fast, my skin turns mottled constantly with no discernable pattern, I hurt all over and sometimes even just accidentally bumping a spot that hurts is crippling. I can't go to the gym as much anymore, I can't work full time without hurting so badly. He just looked at me crying, handed me a paper and said "You can give this to the front desk ladies and you don't need to schedule a follow up."

I'm only 25, I just. Now I've sat here all day wondering if I did something wrong. What if it is just fibromyalgia, and I just burned a bridge I needed? He never even really explained why he thought that or why it wasn't something else I just.. I don't know what to do now. How much weight do I have to lose before I'm finally believed?...

I'm sorry for this being so long. I just wanted to get it all out, I don't know who to really talk to about it and I thought maybe here someone could relate I don't know.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for nana4justice @nana4justice

Does anyone know anything about IGA deficienc?

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Welcome @nana4justice, You might find the following discussion helpful for learning more about IGA deficiency:
-- Treatment for (low) IgA deficiency: https://connect.mayoclinic.org/discussion/medications-for-low-iga/

Also here's a search link of Connect that lists the different comments members have shared about IGA deficiency - https://connect.mayoclinic.org/search/comments/

Have you been diagnosed with IGA deficiency?

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Profile picture for margaret216 @margaret216

I'm a 77 year old female who has been suffering for decades, one diagnosis then no it's not that you have anxiety so I just pushed through till 5 years ago a Rheumatologist did tests and I have RA and Sjogren's plus a list of stomach problems too. I just quit going because all the meds made me sicker and the doctor wasn't a "sharer" and gave me no help at all so I do feel your pain. Doctors won't do the work it takes to figure out how to help and they mistrust everyone and you get judged when you first see the doctor, good luck.

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@margaret216 I Hi I am so sorry you're going through all this. I understand I have three autoimmune diseases r a Hashimoto's and now secondary Sjogren's. You have to advocate yourself You have to search on on here on YouTube on chat GBT Google get on some groups on Facebook they're very helpful. I had a lip biopsy and a blood test done for just test to see if I had Sjogren's disease. They both came back negative. I went to an ear nose and throat doctor for this. When I went to go see my rheumatologist she looked at the whole picture She looked at my blood work she looked at the other autoimmune diseases I had She looked at all of my symptoms and she said you have Sjogren's disease. I didn't want the disease I just wanted to know it was wrong with me. You have to advocate for yourself I'm 67 I am a whipper snapper when it comes to doctors not doing what they should do so I'm telling them what test and what blood test to take. I'm also telling him how it is affecting my life and it's interfering with relationships in my children I'm tired all the time I don't see anybody I'm almost like a shut-in. But now that I'm getting better I feel good about myself because I advocated for myself and I researched researched researched. Probably should get another doctor?? Good luck to you

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