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  • About Undiagnosed
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    What's New in Undiagnosed
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    Tubie or not tubie?

    So I’ve had a feeding tube for a couple of years now, & at first I got weird looks from everyone, including my extended family. About a year ago the stares eased up & I felt like a “regular” family member again, but now my body can’t even handle my tube feedings so I’m using TPN. I was relieved that my GI was willing to put me on TPN, because I haven’t been able to eat in weeks (even soup broth causes pain/nausea) & I was scared of malnourishment. But seeing my family today was rough. I got the pity stares/comments that just make me feel insecure. Everyone knows I cannot eat without paying serious consequences & I was still urged to drink soup. So I ate a few spoonfuls of broth & am now in pain. I feel so conflicted… I wish they could understand that the looks of pity don’t help when my nutrition is coming from a bag with vitamins infused, while theirs is french toast, syrup, & bacon. I keep telling myself the doctors will figure out what’s going on, but it’s hard to have faith on days like today. #Undiagnosed #Depression #Multiplediagnoses #Gastroparesis


    Fatigue Management Tips?

    Hi! I have POTS and my symptoms have been worse since I had COVID in December. How do you guys mitigate or work with fatigue? #POTS #Undiagnosed Thanks!

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    What are your favorite waiting room distractions?

    One of the most exhausting aspects about endless medical appointments is definitely the long hours spent in waiting rooms.

    What helps you to pass the time while you wait for your doctor, nurse, or therapist? What helps you to stay occupied and busy?

    💎 P.S. If stim toys are your jam, we love these suggestions from Mighty contributor Amelia: 8 Wearable Stim Toys for Autistic and Neurodivergent People

    #Undiagnosed #CheckInWithMe #ChronicPain #ChronicIllness #RareDisease #MentalHealth #Spoonie

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    How do you manage pain. When you don't have a diagnosis?

    I'm very early in my health management of trying to figure out what is causing my pain. Therefore, I haven't been prescribed anything to help manage my pain. The last 10 or so days were good days and I thought I had found a good balance of work and rest. But today is a bad day and I'm bedridden in pain. I tried soaking in hot water and while that did work for a little while the pain returned. I've tried cbd cream and I think it helped a tiny bit. Tylenol and Advil do nothing for the pain. I have a high tolerance for pain but it hurts to just walk to the bathroom. Part of me wants to take Tylenol and Advil but the other part of me says it never helps so why bother. I guess I'm looking for suggestions to help manage my pain. I see the doctor next week to go over test results.
    #PainManagement #Pain #ChronicPain #Undiagnosed #Anxiety

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    Tell me about a time you trusted your instincts.

    I’m trying really hard not to cry while I write this post but that strategy is not proving successful (definitely crying in my kitchen right now). I had a really bad day yesterday, Mighty fam. In fact, I don’t think the words “bad day” really do it justice. It was traumatic.

    I was supposed to have a medical test in the morning. Everything started out OK but about 10% of the way through it (the total test time was about an hour), my physical and mental reaction to the procedure was so overwhelming and triggering that I had to stop it. I am not even sure how to describe what I’m feeling, really. (Also, I don’t want to reveal the name or details of the testing as I don’t want to create an environment of fear for others who might need the test themselves.)

    I think what I’m feeling is shame? There’s also a hearty dose of numbness as well. Writing this post is one of my first steps towards starting to process it. So in an effort to do that, I’d love to hear about a time you trusted your instincts. It could be a positive experience — like deciding to go on a spontaneous trip or quit your day job to follow your dreams. It could be a negative one, like mine (though at the end of the day, I AM really proud of myself for trusting my body).

    I mostly just want to know I’m not alone (and neither are you). 💖

    #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Undiagnosed #CPTSD #PTSD #Trauma


    May not be Fibromyalgia after years?

    I had to get a new doctor because my insurance change and they did basically a full work up. A blood test came back with a positive marker in one of the autoimmune disorder and they had to take more blood to do another test. I was so shocked I did not take in which test it is. I should get my results back by the end of this week, but I have been sitting on this question mark for a week and a half ago. I have been so stressed thinking about what it could be. I have been treated for Fibro for 5 years now and have been suffering since I can remember.

    #ChronicIllness #Undiagnosed #Undiagnosed autoimmune disease

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    Some good? and disappointing news #Undiagnosed #ChronicPain #ComplexPosttraumaticStressDisorder #Stigma #Anxiety #Referrals

    As some of you know, I am struggling with a lot of different symptoms, many of which are not diagnosed. I have been trying for almost 2 years to get some answers. After seeing my orthopedist 2 weeks ago, he diagnosed me with hip bursitis and said I probably have a labrum tear. I then asked if he thought I might have a systemic tendon issue (due to other tears and inflammation I have been diagnosed with). He said that it is definitely a possibility that he thought of. Since then, I contacted my PCP and asked for a referral for rheumatology again and some labs that the doctor who does my testosterone shots recommended based on my symptoms. My primary finally said yes! She ordered a morning cortisol blood test and a catecholemine urine test. The cortisol came back normal, but I'm still waiting on the other one.

    Yesterday I saw on the patient portal that my referral went through. When I read it, it said "41 yo man with chronic widespread musculoskeletal pain. Low suspicion of rheumatologic cause given multiple normal lab work ups. Patient requested rheum eval." I am trying to stay positive, but I'm pretty upset that she wrote "low suspicion" instead of using that energy to write a few of my other symptoms. I feel like I am going to be seeing a doctor who already has the assumption that nothing is wrong before they even see my face or hear my story. Why do I have to keep fighting the biases people have of me? I keep "firing" providers and getting new ones that are not much better. I do have a few very competent and caring medical providers, but unfortunately there's only so much they can do as a therapist, physical therapist, and neurologist who did every test she could think of.

    My trauma has made me think that nobody cares about me. I feel like very few people actually believe that I know my body and when something is wrong. At the end of my appointment with the ortho, he told me to "trust your spidey senses." It was an amazing feeling to be acknowledged for having good intuition and that I know my own body more than anyone else. That validation was the jump in energy I needed to continue to fight for myself. I am so exhausted and want to give up often, but I'm not going to.

    For the first time in my life, I am asking for what I need... and it hasn't been going so well. People who have known me as this passive person my whole life, do not like the change. My best friend and parents did not like the boundaries I set in our relationships and I don't talk to them anymore. The medical stuff has also had mostly negative results. It's so frustrating. How do I get to a place where I feel comfortable asking for things when I keep getting pushed down by people who are supposed to care about/for me? I thought there was an ethical component of medicine to help people and do no harm. There are hurtful biases and judgments healthcare professionals put on me due to my mental health diagnoses, weight, and gender identity.

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    What makes a waiting room good or bad?

    Usually figuring out what’s going on with your health is accompanied by various appointments across new practices, specialists, clinics – the list goes on.

    When entering a new office the first impression you get is of the waiting room, the place that prepares you for your appointment. I don’t know about you but I’ve been in a range of good to very bad waiting rooms.

    For me a good waiting room:

    ✅ has a friendly staff who helps and assists you through their process

    ✅ is fairly empty with only a few patients (this usually means they’re running on time!)

    And a bad waiting room:

    ❌ has a staff that stares at you like you should already know what to do

    ❌ is very full with patients, at increased levels of frustration (this usually means they’re running very behind)

    What attributes make a waiting room good or bad in your experience?

    #ChronicIllness #Undiagnosed #MentalHealth #Disability #RareDisease #Cancer


    Feeling down and depresses

    I am feeling somewhat down and depressed plus anxious. I joined The Mighty a few days ago and I'm just now feeling more comfortable telling my story. In 2006 i was diagnosed with Leukocytoclastic vasculitis. I had purpura all over both legs and it was very painful. It took a few months but I recovered and was relatively healthy for several years. Then as soon as I hit 40 it was like my health fell off a cliff. I was extremely tired all the time, depressed, and had night sweats. My doctor repeatedly checked my hormone and thyroid levels but they kept coming back "normal". Then I went to an ENT to get my ears cleaned. During the exam he felt my throat and said my thyroid was enlarged. I had an ultrasound and my thyroid levels checked, again. Finally I was out of range and I started synthroid. I noticed over the next few months my symptoms got worse and my neck was getting bigger. I had another ultrasound and talked my doctor into increasing my dose. The ultrasound showed I had nodules on my thyroid so he sent me to a pathologist who I well known around me for only testing the thyroid. I had a fine needle biopsy which came back benign. However, he said he could tell by looking at my thyroid I had hashimotos and sent a note to my doctor to test my TPO. It came back way, way out of range at over 800. My doctor said I had hashimotos in the past. By this point though I had been doing my own research and new that wasn't correct. Plus I went to an endocrinologist who was concerned I not only had hashimotos but graves disease too given how large my thyroid was. The graves test came back inconclusive. Meanwhile, I was on a hormone rollercoaster plus I developed shingles. I wound up in the hospital a few times and was taken seriously once till shift change where the new doctor brushed me off and sent me home. My primary care doctor was not happy the hospital brushed me off because I had chest pain. I saw a cardiologist a few times, was taken off synthroid then back on because my thyroid levels were all over the place, then after about 6 months everything calmed down and I was stable. I ended up changing primary care doctors since I couldn't get the old doctor to believe I had hashimotos plus he wouldn't check my iron levels. The new doctor checked my iron at my first appointment and found my ferritin level was very low but never tried to figure out why. Fast forward a couple of years and I start having severe pelvic pain. After seeing 6 doctors in the span of 2 months I finally get diagnosed with adenomyosis and fibroids. Nothing was helping with the pain and I had a total hysterectomy only keeping my ovaries. I woke up from surgery and the pain I had been in daily for several months was gone. Then about 7 months later the thyroid pathologist told me my thyroid was getting so enlarged I should see a surgeon about getting it removed. The same week I severely sprained my ankle and lost my insurance. Two months later with new insurance and still dealing with the sprained ankle I went to a pain management specialist and he sent me the physical therapy. By this point it was December so the holidays interfered with starting therapy and my Achilles tendon quit working and I was on crutches. Meanwhile, I couldn't work because I worked in catering and had a heck of a time getting on disability. I ended up having to quit my 2nd job because I just couldn't walk and be on my feet as long as that job required. Over the next 6 months I faithfully went to therapy and doctor appointments. I wound up in a walking cast at one point, sprained my ankle again, and had the big toe on the same foot sprained after someone walked right into me and stepped very hard on my foot. This caused me to go on workers compensation because it happened at work. Meanwhile at the same time my landlord decided he didn't want to renew my lease so I had to fight him in court and look for a new apartment. Oh and my insurance decided I had enough physical therapy so they cut me off. This brings us to January 2020. My whole family got sick in January with what we now know was covid, we didn't then. While I was still recovering we moved. I was able to return the physical therapy for a brief period till lockdown in March. I had a few virtual appointments then I was discharged about a month later. In September I went to a new endocrinologist and she looked at my records, ordered a new ultrasound. She confirmed my thyroid was way to large to even figure out what was thyroid tissue and what was nodules. She sent me to a surgeon who immediately scheduled me for surgery for a total thyroidectomy. I recovered from that, my anxiety spiraled way out of control and my husband took me to the emergency room one day. That got me into the counseling and with a psychiatrist right away and I'm on medication. With my anxiety getting under control of course something else had to start. In October I started having what I think are vasculitis flares. I tell my doctor who prescribed gabapentin and also started me on a statin due to high cholesterol because genetics. I am allergic to dairy, have gluten intolerance and overall already eat fairly healthy. So I started both new medications and immediately break out in hives over Thanksgiving. I stop both new medications and the hives don't go away. So after 2 rounds of prednisone they finally go away. The doctor wanted to wait a few months before trying anything new again. Meanwhile, the pain my legs gets worse but mostly tolerable. Then one day in February I'm doing normal housework and halfway through the day I am in so much pain I can't walk. I'm laid up in bed for a week. I make an appointment with a rheumatologist who I saw last week. He was really thorough, nice, and clearly explained his thoughts. He doesn't think it's the vasculitis flaring up and runs A LOT of tests, 12 vials of blood and a cup of urine. He briefly mentioned fibromyalgia. When I Google fibromyalgia I do check a lot of boxes for it. He said expected all the test results to come back negative but they didn't. I did what I know you're not suppose to do but I Googled the test results that came back out of range and the only things I can speculate is maybe I do have fibromyalgia, the vasculitis is flaring, and I may have a mild case of a hereditary blood disorder that is in my family, my dad had it and several cousins have it. It's spherocytosis. The only reason I speculate on the fibromyalgia is the soles on my feet really hurt and that does not go with vasculitis. I'm currently learning that I can't push myself or I over do it and wind up in a lot of pain. My feet constantly throb. I am starting to pace myself. I see the rheumatologist the first week of May to go over the test results. So that's my story, sorry it's long.

    #Anxiety #hashimotos #Hypothyroid #Adenomyosis #Hysterectomy #HighCholesterol #Undiagnosed #Fibromyalgia #LeukocytoclasticVasculitis #ChronicPain #MultipleDisabilities #Spherocytosis #ChronicPain