Undiagnosed

Join the Conversation on
Undiagnosed
17.1K people
0 stories
2.3K posts
  • About Undiagnosed
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Undiagnosed
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    ⭐️ NEW ⭐️ Chronic pain collections!

    Hey, spoonies. Our editors have been hard at work curating our chronic pain collections (think of them like playlists for your health, all by theme) — there are 17 jam-packed ones to explore, save, or pass along to someone who might need it.

    🔎 You can find all of them here: #ChronicPain

    A few of my favorites:

    🤨 themighty.com/topic/chronic-pain/collection/636e62a73abf1800249407a4

    💥 themighty.com/topic/chronic-pain/collection/636e668c85afc6002bb52622

    👵 themighty.com/topic/chronic-pain/collection/636e7d690d03f3002bb8cad1

    ♿️ themighty.com/topic/chronic-pain/collection/636e7f9757a3ed0036ccb1de

    Hope you dig them!

    #ChronicPain #ChronicIllness #Spoonie #Disability #Fibromyalgia #EhlersDanlosSyndrome #Migraine #RareDisease #Undiagnosed

    Post
    See full photo

    Another Loss

    Hi everyone. I’m having THE worst time right now with grief. Ive been grieving for my Dad for awhile and will for a long time, but now on top of it I’ve lost my beautiful, precious dog Roxie. I feel like I’m going to die myself (not suicidal or anything but just worn out from the pain of it) because he’s been such a huge part of my world for his whole little life. I just cant get my mind around the idea that he’s really gone. He had diabetes for many years and had gone blind years ago, but did so great at adapting to it. Im still so proud of him for that. Unfortunately in this last year he started having problems with being up and down with his insulin (needing different amounts, being lethargic sometimes, etc) but he always bounced back and did great. For all of October he did really good, and had gotten old for sure (he was 13 and 1/2) but still scampered in the backyard when I let him out to go potty and drug his bed around with his teeth before chewing on it. He was just himself. Last Tuesday it was the same, acting normally, eating and drinking well, etc. And I was so happy because there had been no lethargy or anything so I thought it meant that he was stabilized again. But that night out of the blue he had a seizure. It was horrible to see but worse for him. He looked so scared it broke my heart. I took him to the er vet and they gave him anti seizure medicine, which helped, and I brought him home. He was very tired the next day but did eat, drink, and go potty. Then that night he had another one. I got him to the er again, and the poor love was foaming at the mouth. I realized this was going to continue, and though it killed me, I had him put to sleep.

    Now Im just sick to my stomach and in shock still because this was the last thing I expected. To think he was doing okay and then have this happen has just torn me apart. He was the great dog love of my life, and I keep looking for him to walk in here so I can scratch his back and cuddle with him. I just honestly don’t know how Im going to get through this. 😔
    #Grief #Pets #Bipolar #ADD #ChronicPain #Undiagnosed

    Post

    Having chronic illness is like your body punishing you for simply trying to live your life.

    I went to a picnic on Saturday, and I am still suffering the consequences of me trying to act like a normal student and have fun.

    #POTS #AutonomicDysfunction #Undiagnosed #University #Student

    Post

    New ankle injury

    I have a history of sprained ankles. 4 years ago I suffered a severe sprain and never fully recovered for multiple reasons. This afternoon I had just walked into the kitchen when I suddenly I had severe pain in my ankle and was unable bear any weight. Has anyone ever had a torn ligament suddenly like this? I haven't injured my ankle recently. I'm most likely going to go to the ER in the morning. The thing that makes this more interesting is I currently have #Undiagnosed #ChronicPain all over my body but mostly in my feet and legs.

    Post

    I am soooo sick and tired of apologizing…

    It was pointed out to me yesterday in this way…. Mom, stop apologizing to people for THEIR bad behavior. Let me explain a bit.

    Yesterday, I was having a very difficult morning with pain and numbness and burning in my spine and lower body. I was just trying to walk/function a bit in my home with my rollator and cane as I always try, if I can. Quickly, I was losing the ability to feel my spine and lower body as the numbness can be quite severe and it becomes all I can feel. I can’t put it in pretty words, it’s not pretty. I was losing control of bodily functions and could not feel it at all (again!). I told you, it’s not pretty. Of course, I was in the privacy of my own home. I can deal with that but it still ticks me off.

    Then, it came time to get to the hospital and have my brain mri already scheduled. I wanted to go in the manual wheelchair, I couldn’t walk anymore. My daughter drives me, ok, here we go, done ✅.

    Now, we stop at a local store here in town, a small store, the only one in my town. This time, I’m going in too. I’m tired of not being able to go into any store to get anything for myself because my ability to walk on my rollator can be suddenly, excruciatingly painful and numbing on very short notice. Of course I cannot walk up and down most isles like a typical healthy person but I have fought for the ability to keep my limbs working for a very long time now along with a tiny bit of independence. I think most people would, however; I’ve learned now that I have days and weeks that the rollator is just not sufficient and a wheelchair has to be used. Like yesterday, to the hospital and the local store.

    Here we are, in this store and I soon realize that yes, there’s several isles that I cannot go down at all because they have carts here and there and excess boxes of products they are trying to stock, the isles are very thin. That’s not my main problem though. More and more customers are filling up this store and I’m in this wheelchair fighting to use my one ☝️ better arm and strengthen the other too. I’m in an isle picking something for myself (yay😂. I feel like a big girl for a moment). My daughter’s nearby pushing a cart for me and gathering things I cannot get to.

    Little by little I found that I was in the way, of many, it seemed. I found myself apologizing over and over AGAIN, to anyone and everyone who appeared to be inconvenienced by my sheer existence in a wheelchair. Regardless if I was in the isle first, I was still apologizing. Because they can walk much faster with their carts they are trying to make noises and give me looks to get out of their way faster. I cannot maneuver this chair in these tiny isles around every dang thing piled in the store fast enough to suit the lady in front trying to push past where there’s clearly not enough room. The lady trying to come in behind me could see that I couldn’t back up to please her and I couldn’t go any further to the side to please the people coming toward me. I could NOT physically get out of everyone’s way fast enough. It happened several times during this visit. I don’t know how many people I apologized to but after a bit it kind of starts to make a person feel like they are a burden to the public. To the community they call home, their fellow neighbors. I apparently don’t have the right to go into a store and buy something for myself because the mobility equipment might make someone else have to wait a few seconds longer than they wanted.

    Out speaks my daughter, a few times, but this time louder and with solid, stern, tone of voice. “Mom, you don’t have to apologize to people because of their own bad behavior”! I realized it then. She has told me on more than one occasion, that I apologize to strangers all of the time because they show they are being inconvenienced for a few seconds/minutes of their time.

    I want to say that I’m sick and tired of apologizing for my existence. My body is controlling my life. I don’t care anymore if your inconvenienced. Turn around and go the other way. Keep your snarly comments and moans and groans to yourself and go the other way. If you cannot do that, try a little human kindness. Have a little patience, a little respect for other human beings. ALL human beings deserve a little respect and kindness. It shouldn’t matter that some of us cannot walk like you. I picked a few things for myself in a local store. It felt really good 😊 👍🏼!!! I needed that. I was not in the wrong because I’m still fighting for what’s left of my limbs, my life. I’M NOT SORRY!!!

    #Undiagnosed #MightyTogether #ChronicPain #MobilityAids

    Post
    See full photo

    You can’t always get what you want, but if you try sometimes…you get what you need

    I asked the universe for a motorcycle this year, and they gave me a wheelchair instead 🦽

    Grateful I can get to the bathroom on my own now with the help of new wheels

    #MightyTogether #Wheelchair #bedbound #Undiagnosed #AutoimmuneThyroidDisease #PolycysticOvarySyndrome #Dysautonomia

    Post
    See full photo

    My new normal? #Undiagnosed #Fibromyalgia #SeronegativeRA #RheumatoidArthritis #parentwithpain #Jointpain

    I've been icing my hand to cope with the joint pain. I had blood work from rheumatologist that can back "all normal" for RA. Next step is MRI on my hand. He thinks it's possible I have fibromyalgia. What am I supposed to do without a diagnosis?

    Post
    See full photo

    #Undiagnosed

    Yesterday I made camping reservations. It was something my kids and I did nearly every year. I wanted them to feel like things were going to be ok. We haven't been camping since I got sick.

    Yesterday I drove my son to a neighboring town for a school project. I don't normally drive much or far because it is painful and I get so tired I have to pull over to rest a couple of times. Lately I've done well and felt pretty decent.

    I ate a healthy meal, hydrated, took my meds, had slept well, and was feeling calm and happy to spend time with him. Just outside of town something went wrong.

    I was driving down the highway when I suddenly out of nowhere became very light headed. It felt like a weight pushing me down and my peripheral vision went black. Like...being on a rollarcoaster or a power tower just before the drop. I pulled over quickly. My chest started to hurt and I broke out in a sweat.

    Over a month ago I was referred to Mayo clinic to have another EEG done because my last one showed something abnormal. I haven't heard from them. I also have a sleep study soon because of exhaustion and sudden nap attacks.

    Armed with absolutely no helpful information or advisement, I have tried to carry on my life the best I can, with discretion. This incident scared me so bad. I asked my ex husband to come pick up our son. I missed the turn going home and felt exhausted, clumsy, and absent minded for awhile.

    Worse, I had just reserved a spot to go camping. I chose to cancel because it requires me to drive my children.

    This feels like a huge loss to me. I feel like a stump. People see a stump as something that decomposes if they notice at all. They don't say, "look at what's left of a mighty tree". After awhile no one even remembers what the tree looked like or it's life. They see it as something other than tree. I still feel like a tree, but I fear I am becoming a stump now. I'm losing pieces of myself. Driving and camping are huge pieces. I've already lost education, career, hobbies, and relationships.

    I sense others expect me to suddenly be ok with the changes that have taken me over the last few years. They have accepted it quickly and I am still feeling the wind in my branches and expect birds to build nests in them when the spring arrives. I can't grow taller or sink my roots down deeper, but I'm also not exactly dead either. I'm still part of the ecosystem, just not the part I liked. The moss grows and the undergrowth starts to cover me and I'm left shouting, "I'm still here!".