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 lewin @lewin

I live in Pittsburgh and care is terrible here. I''m just curious why you recommended Pittsburgh? It is a nice city but health care system is a big problem.

Jump to this post

@lewin I live in rural PA and the closest big city to me is Pittsburgh. Even then, it's an hour away.

REPLY

Some doctors are asses; only a few really care! You ARE NOT WRONG for feeling unheard and dismissed! It is amazing that you have lost so much weight! You should be celebrated for that incredible accomplishment!
(not important, BUT it makes it relative...to explain my opinion)
I've been dealing with severe abdominal pain AND lower back pain (sitting/laying) for YEARS; no doctor could diagnose thus help me. I kept on...
Years later, during a CT scan for my stomach; they noted my lower spine has crushed vertebrae; hence the lower back pain that a doctor didn't notice from their prior x ray nor the xray reader see it. My stomach issues took years and a dedicated gastrointestinal to diagnose, thus cure. I have been abdominal-pain free to almost one year now!
Prove that A-HOLE wrong! I'm sorry for you, but let that be the STRENGTH to motivate you!
I got great pleasure telling the "previous doctors" what the professional doctors found!

REPLY
Profile picture for ktp @ktp

Some doctors are asses; only a few really care! You ARE NOT WRONG for feeling unheard and dismissed! It is amazing that you have lost so much weight! You should be celebrated for that incredible accomplishment!
(not important, BUT it makes it relative...to explain my opinion)
I've been dealing with severe abdominal pain AND lower back pain (sitting/laying) for YEARS; no doctor could diagnose thus help me. I kept on...
Years later, during a CT scan for my stomach; they noted my lower spine has crushed vertebrae; hence the lower back pain that a doctor didn't notice from their prior x ray nor the xray reader see it. My stomach issues took years and a dedicated gastrointestinal to diagnose, thus cure. I have been abdominal-pain free to almost one year now!
Prove that A-HOLE wrong! I'm sorry for you, but let that be the STRENGTH to motivate you!
I got great pleasure telling the "previous doctors" what the professional doctors found!

Jump to this post

@ktp keep going to Drs. Use Chat GPT to help. I have been to 5 Rheumatologists, 5 dermatologists, oral medicine specialist, oral surgeon, 4 dentists etc in the last 3 years. Finally found a dr who did a biopsy of my tongue to tell me I had OLP and not crazy. Keep trying to get answers. The only person who cares about you is you. I had a neuro dr just tell me this 6 weeks ago and it has stuck!!!

REPLY

I feel for you! I had a journey where doctors kept prescribing the same med over and over! And no results that helped. I switched to a functional medicine doctor and finally found relief. I was tested for so many causes based on my symptoms. That’s where most doctors go wrong - they treat the symptoms and NOT the CAUSE! You can find one by city and state at this website: ifm.org if you’re interested.
Best to you.

REPLY

Please don’t give up! Perhaps a functional medicine MD Doctor, would be of help to you! Your situation reminds me of how frustrated I was, when my heart kept beating at 170 to 225 beats per minute for hours ( like 10 ), before it went back into normal rhythm. I got in to see my primary care Doc. right away! He thought that symptom, which was recorded and documented, on my smart watch, warranted further investigation. So, he referred me to a cardiologist. The cardiologist took an EKG, and ultrasound of my heart, and said everything looked perfectly normal, so he could do nothing to help me. i was so flustered. I felt like crying and when I had another episode like that, it was, also, upsetting, but, I thought, what’s the use, even calling the Doctor! I had been made to feel like I was a ‘turkey’ by that Doc, so I let that episode go, and did not report it! That was several years ago! I would have occasional episodes, again, that didn’t last so long. I did report them to my primary Doc.
He seemed uninterested too! So just this last year, I had one of those fast heart episodes, and, at 223 beats per minute, according to my smartwatch, after about 10 minutes, into the episode, I had this horrible feeling in my chest, where I actually felt like my heart moved, a flip flop sensation! Then, what scared the wits out of me, is that I couldn’t feel my heartbeat, and I started feeling light-headed. At the same time, my smartwatch flashed a red light, and a notice came up on the face screen! YOUR HEART BEAT IS IN ATRIAL FIBRILLATION! CALL YOUR DR. RIGHT AWAY, AND PRESS STEM OF WATCH, HOLD FOR 10 SECONDS, AND 911 WILL BE CALLED TO YOUR ADDRESS! So, I woke my wife up, and heard the ambulance sirens approaching! EMT Ambulance service is only 2 miles from my home. Anyway, my smartwatch recorded that ECG, and I sent it to the Cardiologist’s office the next day. Meanwhile, my heart had gone back into sinus rhythm. So, I was sent to a heart rhythm Doctor, an Electrophysiologist Cardiologist, who had a monitor put on me for several weeks, where several other A-Fib. episodes were recorded, and I was officially diagnosed with A-Fib. So, the lesson that I learned, was stop crying and feeling hopeless, because my body was trying to tell me something, and eventually, something happened, symptom wise, where the Doctor’s could see that something definitely was wrong, and that I needed help! Please try and be patient, and keep trying to find an answer for your symptoms, and concerns! I can tell you of several other instances, in my lifetime, where I’ve run into uncaring, or unconcerned, or overworked medical providers! Due to my perseverance, I have met Doctor’s that cared enough to truly investigate my symptoms, and, actually, those Doctor’s, who cared, about me, and thoroughly investigated my symptoms, all came up with my, unfortunately, having very serious disorders! Over the years, I have been diagnosed with Parkinson’s Disease, Gammaglobulin anemia, Supra ventricular Tachycardia, Ataxia, Tonic/Clonic Seizures, Pancreatitis, Fatty liver disease etc. So, please do not give up! Sometimes, caring, investigative, low patient load Medical Professionals are hard to find, especially in larger populated areas, where there is only one hospital, and the Doctor’s patient load is determined by non medically trained administrators, as I have found out, concerning my experiences! Good luck to you!

REPLY
Please sign in or register to post a reply.