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Ptsd from back pain and years of misdiagnosis?

Discussion in 'Medical' started by Strangelongtrip, Jul 11, 2018 at 4:08 PM.

  1. Strangelongtrip

    Strangelongtrip Active Member

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    So I’ve been having a lot of dizziness, almost syncope, and heart racing, all when I’m sitting or standing up. I’ve had it for a while but was always told it was related to anxiety. It isn’t anxiety related, and I can finally tell the difference. I have ever single symptom of POTS, which I didn’t even know existed until I looked up syncopal episodes. I’ve even been tracking my heart rate and it’s consistently jumping 30 bpm and past 120bpm every time I stand up. But the doctor was pretty sure it wasn’t orthstatic hypotension because my blood pressure didn’t change. I didn’t ask about tachardia and they didn’t check it because I froze up completely and felt like I couldn’t ask for a table tilt test or suggest POTS, that she would think I was crazy, or seeking attention, or questioning her and she’d get mad at me. My granddad keeps telling me not to look on the internet and that I’m making stuff up but I’m not. I felt so awful answering the questions because I just expected her to say it was all in my head. We’re running a bunch of tests next month. I started panicking and wanted to get out and leave and never come back. My dad just told me it was all in my head too and I was just looking for something. I’m just going to stop telling them anything about my health because they’re condescending narcissistic. They also don’t understand why I hate doctors so much, or don’t trust them. They believe they always know the answers and can always help you, which in my case is VERY untrue. And in many people’s cases. I don’t get how they didn’t see I went undiagnosed with chronic pain for years (even before this all of my joint and muscle pain that is still undiagnosed). They always think I’m making it up and it isn’t real.

    I went through 4 years of disabling back pain and it took around five doctors to find out what was wrong with me. It lasted from when I was 14/15 to when I was 19. We ended up having to go to a specialist that doesn’t take insurance because I had a very specific tear and also had a hip impingement that no one else saw. I had to drop out of college once because of horrific pain and panic attacks and half of my high school I was homeschooled and on crutches. I had to use a wheelchair briefly. I was on tramadol and something like 1600 mg of ibuprofen a day which ended up seriously messing up my stomach which still isn’t recovered. I was in near constant pain during this time, and I was told everything from it’s all in my head to it’s mental illness to I’ll just grow out of it. One physical therapist told me I was a lost cause and I was just going to have to live in pain the rest of my life when I was 16 and two doctors from one of the best hospitals in the country said they had no idea what was wrong with me. I also had cortisone shots where I was strapped to a table couldn’t move and my lower half was nearly all exposed about four times, which for someone who’s been through childhood sexual trauma is just I don’t know how to describe it it was awful. Around this time all the dizziness started and I was told no matter what I was on that it was my medication, depression or anxiety.

    I have no trust for doctors. I avoid going at all costs the only reason I went to one this time was because I blacked out for a few seconds while driving and I realized it wasn’t safe to not get this checked out. I feel like she’s taking me seriously but she was brusque and made me feel weird and I didn’t want to tell her that I thought it was POTS. I HATE psychiatrists as well and have no trust for them, no matter how much they listen to me or prove me wrong. I mildly like my current one, but he’s super busy and schedules me for every three months and I think that’s really wrong when I’m adjusting medication. I feel like medication from them has messed me up more than it’s helped me.

    I honestly don’t know what to do because I’m going to have to go at least four or five more times to this cardiologist. I started shaking while I was talking to her. I had a panic attack in the office today and completely shut down and couldn’t speak and my mom had to talk for me. My mom was super rude about it too and told me I was being ridiculous. I have a service dog in training but we haven’t gotten to long downstays long enough she could come with me and help with my panic attacks. I’m going to go over it in therapy. My therapist understands because he went through years of mistreatment in the medical world and I don’t get why everyone doesn’t know how common it is and won’t listen to me. I’m also scared I have EDS because of joint dislocation, all over pain and painful joints and stretchy skin but I’m scared of going to that doctor because of where it’s located and who lives around there (all people tied to abuse trauma) as well as being seen as an attention seeker from my family. I may just go and not tell them. I’m going to get my dog’s downstays down so I don’t have to take any of my parents to that one and can just go alone. I’m scared everyone thinks I’m looking this stuff up because I want something wrong with me. I don’t want these things to be true. I always have a good gut instinct when something isn’t properly diagnosed though, and I have experience with this, and have always been right. I just hope I can get some answers because right now I’m on edge constantly scared I’m going to black out again. Korra alerts me but she isn’t with me all the time and isn’t to the point she could go anywhere with me. I don’t know this whole thing was a huge rambling rant I’m sorry.
     
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  3. LuckiLee

    LuckiLee I'm a VIP

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    Hi there. I'm sorry you're in so much pain. You say you have PTSD from misdiagnosis? But you were sexually abused as a child. Does your therapist know about the abuse?
    It's possible you had the disorder prior to your back issues.

    I hope you're able to find the help you need!
     
  4. Strangelongtrip

    Strangelongtrip Active Member

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    @LuckiLee hi there! Thank you and thank you for reading. No my PTSD diagnosis was right and from quite a few things, it’s considered complex from years of narcissistic abuse from my father on top of the childhood sexual trauma on top of a relationship with a psychopath where every type of abuse was enacted and my medical history. I wasn’t diagnosed until I was 18 and sought professional help but I starte showing the signs of it somewhere between 5 and 8 years old, when I was sexually abused. I didn’t tell anyone about that until I was 19. I was also diagnosed with mild borderline at 20 years old. Both are getting much better but sometimes can’t figure out where one thing starts and another ends lol, it’s all just one big clusterfunk of symptoms and events.
     
    LuckiLee likes this.
  5. EveHarrington

    EveHarrington _______ in progress. Premium Member

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    I’m confused why you think your PTSD is from back pain if you already have PTSD from childhood sexual abuse?
     
  6. Strangelongtrip

    Strangelongtrip Active Member

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    I was just wondering if it were possible that all of that contributed to it. Multiple traumas
     
  7. EveHarrington

    EveHarrington _______ in progress. Premium Member

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    If you follow the DSM, I don’t think so. But, it all adds to your stress no doubt!
     
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  8. Still Standing

    Still Standing I'm a VIP

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    Hi, @Strangelongtrip,

    You are not crazy!!!!!!!! I know what you are talking about. I happen to go the best physical therapist I have ever had. While he is working on me...deep tissue massage and ASTYM treatments, he updates me on his working with POTS clients. He is working with a doctor who treats POTS in the inner states. There are a couple of clinics on the West Coast and the East Coast of the U.S., too. It is not a well-understood disorder and if often dismissed as other issues. It is only recently that Drs and PT's are getting on board and now are treating this condition. My PT has written papers on this and is working with others to further educate what it is and how to treat it. You need to search for folks, via the internet, who treat POTS and seek them out for confirmation on a firm diagnosis. I checked the internet and there are options available to you to further investigate.
     
    Strangelongtrip likes this.
  9. Strangelongtrip

    Strangelongtrip Active Member

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    @Still Standing hi!! Thank you so much. For some reason I thought the cardiologist would kno about it. I’ll do some more research and see who I can get who takes my insurance! I’m near Baltimore, MD and I hear there’s some doctors around here I can look into. Thank you!!
     
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  10. piratelady

    piratelady Not Broken Premium Member

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    I have POTS. The symptoms can be greatly managed by increasing your salt intake somewhat and also drinking a lot more water. It keeps your blood volume higher to help with dizziness.
     
    Abstract likes this.
  11. Friday

    Friday Raise Hell Moderator

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    The ptsd cup explanation

    ^^^
    Just because this disorder is strongly affected by stress, it doesn’t mean that stressors cause this disorder.
     
    Abstract, piratelady and joeylittle like this.
  12. Strangelongtrip

    Strangelongtrip Active Member

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    @Friday thank you so much this makes so much sense!!

    @piratelady thank you! I’ll see if this helps! I took a magnesium tablet this morning and feel way better, my friend told me it helps with salt and potasssiun uptake
     
    Last edited by a moderator: Jul 12, 2018 at 5:48 PM
    Abstract likes this.
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