My doctors don't believe me

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I'm 17 years old, so all things medical that happen to me are still up to my parents. I had shoulder surgery a few months ago which is healing fine, but I never liked the doctor because I felt he was a little condecending. I expressed this to my parents months before it was decided I needed surgery but they didn't really care what I thought and he ended up doing the surgery anyways. I am now coming up on three months post op and a few other medical professionals have told me they don not think this surgery was necessary. I also have thorasic outlet syndrome (TOS) which we have been able to fix with PT but after my surgery we havent been able to relive the symptoms, they only get worse. I went to a neurologist who I also didnt like because when I told him my symptoms, he didn't belive me. he said I was fine and just perscribed more PT and a medicine to relieve the nerve pain. Two weeks ago I started getting shortness of breath and rib pains. It took a week of begging my parents to take me to the doctor before they finally did. I went to see my general practitioner and she said it is probably just anxiety. It was after that appointment that I began to question if my symptoms were even realy because so many people have told me otherwise, including my parents and other adults I typically turn to for advice. When I went back to my PT and told him that he immediately called my GP to explain that it is not anxiety and my symptoms are very much real, as he has witnessed me suffer through them. I was then sent to get a chest xray which showed up clean. My PT then advocated for a CT with contrast since he fears a blood clot. For this to happen I basically had to go behind my dads back since he claimed it would only cause me more anxiety. The results for that also came back normal. I am at a loss. Personally I would like to go to a specialist but my parents are against it. I am starting to question again whether this is all in my head or not, but I feel like it must be real when I have to put my head between my knees or just sleep because I am in so much pain. I've looked up my symptoms countless times but something would've showed up by now. It's gotten to the point where I hope I just collapse at school where they are forced to call 911 so I will be taken to the hospital and we might be able to get to the bottom of this. I've started to feel so hopeless that there will ever be an end to my pain. The only person advocating for me is my PT but I'm worried he is starting to give up on me also.

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  • Posted

    Hi Sarah I know exactly how you are feeling. I'm a little older then you are I am 42 and I am not saying there is nothing wrong with you but I felt excatly how you were feeling and alot if it was anxiety. I kno the feeling when the doctor keeps saying it's anxiety and u r in pain it gets to b very frustrating, and u just want someone to listen and stop thinking you r crazy and it's all in your head. You r NOT crazy! Even if it is anxiety it's something we can not help and people that do not go through this do not understand. What are all the tests that you have had done so far? Excatly what kind of pain are you feeling? You are so young and the odds are is there probably is nothing wrong but that does not mean you should be ignored I don't think that is what your parents are doing I think they are just trusting in your doctor's. Sometimes people with anxiety like me and you those answers just are not good enough. Feel free to private message me if you need someone to talk to. Try not to worry I kno that is alot easier Said then done!

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    • Posted

      Thank you for your response❤️. I have had a bone scan, EMG, chest x-ray, and chest CT with contrast. I have shortness of breath and rib pains when I breathe. I also have a sharp pain and swelling around my right collar bone/right below it. I have a lot of nerve pain down my right arm along with weakness in my hand and coldness. Also recently the SOB is followed by a headache and I have been overly tired recently. 
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    • Posted

      If there was something wrong Sarah ct with contrast would have shown. That's even more than what I had I had ct without and it found something in my colon so with contrast def would see if something was wrong. When you have anxiety so bad your body almost makes u think you have certain symptoms and when you go online and look things up it makes it worse trust me I know first hand. Mine is so bad I had to go see a psychologist for it I was diagnosed with illness anxiety hyprocondria. It's not fun and it can take over and consume your whole life if you let it and you r way way to young to let this do this to you. I take a med to help me with this. My sister had this many years ago and she use to drive me crazy I now apologize to her for not being there for her and telling her to just stop acting like she did but you truly don't understand it unless you go through it. You have to tell yourself you are ok. Even though I am slowly getting better I still have days where it's hard for me I recently found out I have a very small nodule on my lung well right away in my head I have lung cancer as 3 doctors told me it's prolly nothing to worry about I just have to get it checked again in 6 months they said it's xommon I'm a non smoker never smoked just got over a very bad cough all my other ct scans chest x rays all came back clear and mind u I had about 3 of each cause I was flipping out because before that I was having bad pains in my chest n right side I thought some thing was wrong like u. Try and stay positive this is coming from someone that has been through this I understand how u r feeling and I am still going through it! ?

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  • Posted

    Sarah, I know this is an old conversation, but I’m hoping that this message manages to reach you. I stumbled across your post, and it struck a nerve with me so much that I created an account just so that I could tell you the following:

    Please trust yourself.

    If someone tells you that “if you really had an issue, it would have shown up in the tests” - they are wrong. I’m 36 years old and I knew that something was “wrong” with my body for as long as I can remember. Some of my symptoms have been similar to the ones you described - the chest pains and shortness of breath, the overwhelming pain... 

    I can’t even tell you how many doctors told me I was wrong - or crazy -  before I wound up in the office of one who decided to run a handful of incredibly simple tests that confirmed the following: I was very sick. It wasn’t anxiety. 

    (It’s also worth noting - prior to my diagnosis, an incredible number of tests were run that  DIDN’T show me as having anything wrong. There’s a reason for that: they were doing the wrong tests.)

    Last year I was officially diagnosed with a genetic connective tissue disorder called Ehlers-Danlos Syndrome, and autonomic dysfunction (Postural Orthostatic Tachycardia Syndrome.) The autonomic dysfunction is the cause of my chest pains, the shortness of breath, and what sometimes feels like a million other unrelated symptoms. It took me 25 years of telling doctors something was wrong before I received my diagnosis.

    If you haven’t found your answers yet, I recommend looking up Ehlers Danlos Syndrome and/or Dysautonomia/Autonomic Dysfunction. I’m in no way a doctor, and I know that I have no clue what your medical condition truly looks like, but there’s a saying in the EDS-world, which I’ve since discovered (AFTER my diagnosis, of course...) that goes something like: “If there’s no connection (between a long list of confusing symptoms), think connective.” Connective tissue is involved in every. single. system. of the body. EDS can present in a million and one different ways. Most doctors (in my experience) have no clue what to look for or how to diagnose it. 

    I’m sorry to go off on such a tangent, your story just... It felt like I was reading a letter from my 17-year-old-self. My heart aches for you, because I know how horrifyingly alone it can feel when you know that something isn’t right and everyone else thinks they are the expert on your body.

    It’s your body, girl. YOU are the expert. Nobody - not doctors, not your parents, not some random person online ranting about rare genetic disorders - none of us know more about YOU than you do. Hold on to your power, because you deserve your answers. Whatever they turn out to be.

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