UnknownIllness

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    I wish

    I wish I have someone to talk to. I wish I knew what's going on inside my head. I wish all the pain to go away. I wish I could have proper sleep.

    I wish I was normal.
    #UnknownDiagnosis #UnknownIllness

    Community Voices

    Where do I start to get a diagnosis?

    I was diagnosed with generalized anxiety and depression almost 4 years ago and have been struggling with treatment ever since. I've tried just about every antidepressant and some other medications but my body is too sensitive to even get up to a treatment level dose on anything.

    I saw someone else post about their journey to get a diagnosis with similar symptoms. That got me thinking that maybe there is something else going on. The only thing is, I have no idea where to start. We're in the middle of a pandemic, I don't have a GP, and I recently relocated so have no idea what's what here. I also have some learned anxiety from doctors who miss-diagnosed me or didn't care or listen to me.

    This little glimmer of hope quickly turned into more dread and hopeless. How do I get started? #Depression #Anxiety #UnknownIllness #Diagnosis

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    Community Voices

    what is wrong with me though?

    None of my doctors can ever tell me what exactly is wrong with me. They just go back to my weight! I know I have undifferentiated Mixed Connective Tissue Disease. I’m now having neuro symptoms including muscle weakness, twitching, motility issues. i have to get my esophagus dilated and Botox injection in my esophagus and now need a liver biopsy. I have new dry patches on my wrist and ankle and my fingers swell. My bloodwork is pretty normal right now. So frustrating trying to figure it out!
    #venting #UnknownIllness #MotilityDisorder

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    Community Voices

    So I feel like I'm a broken car my body being the car my sickness being what is wrong with the broken car now imagine taking your car to the shop and the mechanic telling you that there's absolutely nothing wrong with your car but your car still won't start or you fight to get it to start and u cant get it out of the driveway just don't know why your car is broken so you search your mechanic tells you the most stupid thing try filling it up with gas but you're so desperate that you decide to try you get a whole tank of gas fill it up and it still goes nowhere some days you maybe get lucky enough to get it to start but you're still hearing weird noises and all your emergency lights are on so and once again you decide to do one final search cuz your car is saying something is wrong so you know you're not going crazy but you find nothing wrong so if the mechanic is probably wrong and saying there's nothing wrong you decide you have no choice but to use your car even though it's saying something is wrong there's no fixing if they can't find anything so you decide to go ahead and get your emergency things done and get your car back home before it completely breaks down on you and you're stuck being able to go nowheres this is my body my body being the broken car the doctors being the mechanics your car starting is my body working on a good day but still having all of those emergency lights flashing still being at a pain level of a 7 still knowing not to push yourself not to go to your far get your emergency stuff done get home as soon as you can for your car / body can completely breaks down on you out of nowhere doesn't matter how much sleep you get or how much gas you put in your car that doesn't help that doesn't take away your emergency lights it may take away maybe one that's it and it will be a small one just my late night thinking my body starts the same more and more like a broken car

    Community Voices

    I don't usually do this but #CheckInWithMe . Im afraid to go outside but I can't take being in the house. Im so isolated and I want to interact but im terrified of letting anyone in. Its something ive struggled with my whole life but being chronically sick amplified it. Its brought me to a dark place i hadn't been in while, i don't know how my childhood self made it through. I never had a real sense of security, nobody who got my back, defenseless against the world. I was picked on all my years of school and i worked hard to overcome those wounds was making something of myself for chronic illness to come and slap me back to square one is agony. #Depression #Anxiety #Fibromyalgia #UnknownIllness

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    Community Voices

    Knowing the unknown

    Today as I wake up, I realize again that my body doesn’t like me. Diagnosed as a child with cerebral palsy, 39 years later to be diagnosed with heredity spastic paraplegia, but waiting on the type. Doctor said it may be an unknown type because my symptoms are so rare. Then fighting chronic fatigue, leaky gut, migraines, Hashimoto’s disease a whole host of other issues, it’s disturbing not to know what’s wrong. I am doing my own research, trying to find an answer myself. It sucks when you don’t know. It’s like the monster from the deep. A faceless creature that is making life go from walking to being in a chair full time in rapid fashion of 3 years. #ChronicIllness #ChronicFatigueSyndromeampME #HereditarySpasticParaplegia #HashimotosThyroiditis #ChronicPain #UnknownIllness #CerebralPalsy #LeakyGut #Anxiety #Wheelchair

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    Community Voices

    My blood pressure seems to be going crazy. When I stand or walk it goes up to 145-160/109-110. When I am on bed rest it normalizes to my normal (125/75). I’m lightheaded and have a headache unless I’m laying down. I almost pass out when I’m standing or walking too long.

    Went to the ER again on Saturday night. They told me I had had a panic attack and that my blood pressure was up. I could be transported to the hospital as non-emergency. After falling twice to get to the car with EMT help, I finally said I would go in their ambulance. The panic attack subsided and they took my blood pressure again. It was still high but still not emergency. However, every time I stand I get up and try to walk my blood pressure gets out of hand.

    And then my beats per minute can vary greatly. Sometimes I am at 82 when lying down/seated and then I stand up and it’s like 100. It might normalize down to 95 or so. Then it might be what it was yesterday: 69 laying down and rising to 99 when I get up. And then sometimes it seems normal.

    The ER doc is having me get tested for heart related issues (echocardiogram and 24 hour heart monitor), as well as having me monitor my blood sugar to see if there is a connection in drop in blood sugar to episodes.

    Does anyone have any ideas? My blood pressure and heart rate seem to be connected to my headaches, lightheadedness and near-fainting episodes. I’m #Strugglingwithfrustration .