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I don't know what to do next - I'm tired
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.
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@kizu Oh my goodness, I could just hug you. So many of us who have commented have been through it with doctors ourselves, and I will say this, as it’s my own experience: rheumatologists seem to be the WORST specialty when it comes to communicating effectively.
It is NOT you. It’s them. And you may find you’ll have to visit and drop one or more two doctors in the coming months. So many people who have been to a rheumatologist experience this. So my advice to you is to make sure you are taking full and complete care of yourself. Take many deep breaths. Get good sleep. And above all, put yourself FIRST.
You will have to be very direct with this specialty. There’s no other way around that. Practice being assertive before you go in.
It’s a lot. I know, believe me.
If you can get to Pittsburgh (such an amazing city), do.
Call your insurance company too, and tell them the issues you’re having. It’s their job to help you find doctors in-network to help you. Lord knows we pay them enough; put them to work for you.
Hang in there. This is tough, but you reached out here, and that was a big first step.
I am pulling for you from South Florida! 🌴
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3 Reactions@kizu I think I reacted very favorably to what you said because I feel kind of the same way, not about weight, but about age. It seems like people often disregard what I say and lack patience to even try to understand. People can be even more unnatural and unfeeling than automated phone voices or AI.
People often assume a superior, know it all attitude with me. I am just a doddering old lady. And the rules of both medicine and human kindness are suspended, because I can’t be made younger and therefore worth paying attention to. I am left to die and lied about. And if I tell somebody or ask for help, I am ignored, as if I had said nothing.
It's not always this bad. Sometimes people are quite decent, even fun to be with. But I am shocked at how dismissive people can be with me because they see me as old and therefore unintelligent.
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3 ReactionsI just want to say I understand your frustration and you did nothing wrong. The doctor was wrong in how he treated you. I have to say my first symptoms of my autoimmune started prior to 1994, and I wasn’t formally diagnosed until 2024. There was much discouragement, frustration, and just pushing past all of the symptoms in the in between times.
I want to encourage you to keep trying, keep pushing for referrals, researching and finding different doctors. There are some good ones out there that can think outside the box, really listen, and be kind and considerate as well.
Saying a prayer for doors to open for you to reveal a diagnosis and treatment that will help.
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2 Reactions@johnbishop Thank you so much for all the help ❤️ It really makes me feel better knowing there's people like you in the world
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1 ReactionI'm sorry to hear your story and empathize. I've thought 8 months of no diagnosis has been long, but you've been through much more.
Doctors see disease through the prism of fitting symptoms into diagnoses and not from our perspective. That doesn't make them wrong, but in cases like ours disappointing.
My personal experience has been that fibromyalgia has been the term used when no diagnosis fits or no treatment helps. I've decided to take at least one small step toward life again each day and treat that as a victory. I haven't given up on doctors, but for now I just need to help myself along. I've been an athlete all my life and today I'm going to "restorative yoga," which will ironically be exhausting.
It's good that you reached out. You are not alone.
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1 ReactionSadly there’s a name for what you experienced - it’s a common phenomenon that women especially experience called implicit bias. My son is almost done with his occupational therapist degree and just turned in a paper on it. Whether it’s socioeconomic, racial or based on stereotypes or beliefs about patients with higher body weights - healthcare professionals unfairly dismiss patient concerns and often their diagnosis and treatment is delayed as a result of it. A common thread of implicit bias is a lack of empathy in dealing with the patient which seems to be the case as well here. I’m so sorry you were treated this way.
My best advice is don’t give up. I’m on the chunky side and it took 4 rheumatologists before I finally found one who was willing to listen. She found what every one of the others missed - I have dermatomyositis … a diagnosis that is 9 out of every million people. Three before her kept telling me I had fibromyalgia as well, lose some weight, get some sleep, maybe you have anxiety, yada, yada, yada.
No - my body hurts all over, I can’t get out of a chair, and my legs drag. This doctor really listened, took me seriously despite many of my labs looking fine, and figured out what was wrong with me.
There are good doctors, but sometimes it takes a few jerks before you find a good one. Don’t be discouraged. Look online, look at reviews - if someone repeatedly has reviews that their bedside manner is abrasive, I tend to avoid them. Don’t let this one doc defeat you. Keep looking for answers because you deserve to feel better and you deserve to be treated with respect 😊