hashimotos

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    I DID IT.

    After 45 years of fibromyalgia, disc disease (leading to 4 spinal fusions), Arthritic changes requiring 12 major surgeries, I have given up Hydrocodone/Vicodin for good.
    I knew that I was addicted when I couldn’t imagine my life without it. My family confronted me about the lack of clarity in my speech. I had absolutely no motivation for anything.
    I feel everything coming back to life! My daughter calls me to “chit chat” again! I had no idea she had been avoiding those calls. My own home is taking shape and getting organized.
    I now treat my pain locally with heat or ice and Tylenol. I’m going to be just fine without narcotics. Has anyone else gone through this awakening?? #Fibromyalgia #Epilepsy #EssentialTremor #PTSD #Anxiety #ChronicDepression #hashimotos #AutoimmuneDisease

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    Mystery Night Episodes & My Resolution

    Almost 6 months ago now, in addition to my other chronic health issues, I started having what I can only refer to as “night episodes”. I’ll wake up feeling weird, nauseous, shaky, weak and generally discombobulated. We had originally assumed it to be a hypoglycemia related thing. I took consistent readings of my blood sugar for a while and did a 10-day continuous glucose monitor and neither showed anything abnormal.

    I’ve tried tracking my heart rate, my blood pressure, my temperature. I’m going to see a rheumatologist and a neurologist. But I’m struggling to even describe my symptoms.

    Sometimes my limbs feel disconnected and floaty. Or they’ll feel unnaturally heavy.

    Sometimes my head feels pressurized and floaty.

    Sometimes I feel like my body is filled with bees. They’re not stinging, it’s not painful. But they are buzzing around. And I’d like them to stop.

    Or it feels like my body has been hooked up to a very low voltage power source. Not enough to hurt, barely even enough to shock you if I touched you. But enough that I’m extra aware of so many nerves all at once.

    The only thing I’ve found that helps is heat and food. I will grab a small snack and get under my heated blanket. Then I can usually get back to sleep. Once I get back to sleep, I’m usually okay.

    I don’t get night episodes every night. But some weeks they’re more frequent than the nights I don’t. But they do seem to be connected to my circadian rhythm and anxiety as they’re more likely to occur on nights before I have to work the next day or when I stay up too late (past 10pm) and they have gotten a little less intense as I’ve been working on my anxiety coping skills.

    Some nights have been especially bad though. One night I kept having a head-squeezing paired with the brain equivalent to the feeling in your nose before you sneeze. It would happen at random though the night. I was so scared I was about to have a seizure, which is odd, because I’ve never had one before. But I think it was so close to what I imagine the lead-up to a seizure feeling like. (For those that are aware of the lead up to their seizures anyway.) Then another night I woke up at 5am in a panic. I oriented myself, thought it was odd and tried going back to sleep. Every time from then on when I would get to the twilight phase of sleep, it would happen again. I’d get an electrical tightness across my chest and upper arms, and panic. Then rhythmically, even after I’d given up going back to sleep and got up, I’d feel like someone were taking each of my internal organs and squeezing them. It was discomforting to say the least.

    At this point, I don’t have any answers. I don’t even have good medical terms to describe half of this. But I’m going to keep looking. The flame of hope flickers still. As a song from one of my favorite childhood movies says, “Hope is frail, but hard to kill”. Hope takes a beating. But she rises yet again.

    I am determined. I will pray. I will search. I will be kind to myself. I will utilize my curiosity and be courageous. I will acknowledge my emotions. I will wander this road till I find my way home.

    #Mystery #hashimotos #chronicinflammatoryresponsesyn drome #PostconcussionSyndrome #IBS

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    My fat (happy) cat

    Thought my fibro friends might like a dose of omg look at that fuzzball! Lol. He is spectacular. I call him Big Boy Roy and he is the sweetest rescue. Now the weather is beginning to cool, he is my real live heating pad.😉 Smile! Roy loves you. 😁 #Fibromyalgia #degenerative disc disease #Arthritis #hashimotos Thyroiditis #Depression

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    Dying to be loved.

    Because of my illnesses, I tend to come off as “broken” and “unlovable” to possible partners. I only see myself alone with this mindset. Anyone out there fall in love —post diagnosis?? #chronic depression #Epilepsy #PTSD #religious trauma #EssentialTremor #Arthritis #RapeSurvivors #hashimotos #Fibromyalgia

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    Pain and IBS has me up and racing

    I’m up, I actually laid down about 7:30 (since being up since 3:30 yesterday am). I have multiple autoimmune and bipolar. Plus IBS has me racing to the potty. I can’t get comfortable. I’m maxed out on rescue meds. I just want sleep! #BipolarDisorder #IrritableBowelSyndromeIBS #chronicmigraine #Lupus #hashimotos

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    Mindset

    I’ve been trying to change my mindset from an incredibly negative state, to a better state. I have a lot of undiagnosed pain and nobody can seem to find the cause. I have a MRI coming up to look at my brain, and spine. Hopefully an answer will be there?

    I’m terrified of dying. I have a wonderful husband and 3 beautiful young children ages 4,2 and 1. I feel like I’m going to die everyday. My mind gets really weird.. it’s so hard to explain. It just doesn’t feel normal. I have neck pain, jaw pain, both arms hurt, migraines, fatigue, etc. I’m convinced I’m dying. I saw my neurologist put on my medical notes “somatoform disorder”.. makes me feel pretty depressed having that in my medical notes.

    I’m trying to be myself again. Trying to think more positively because if I am dying, I at least want to spend the rest of my time enjoying my kids, husband and the things that bring me joy such as reading. #ChronicMigraines #Undiagnosed #hashimotos #GravesDisease #AutoimmuneDisease #ChronicPain

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    Good days

    Today was a good day. Still experiencing weird, hard to explain pain. I managed to try and push through it. I made our bed. Did the dishes, finished my daughter’s enrollment for Pre k4. Handled some issues with debt by correcting insurance information. Got half of our dinner started and my husband will finish the other half. Finally laying down on the couch and resting. Appreciate the good days! You’re more than your symptoms. You got this. ❤️🤘🏻 #GravesDisease #hashimotos #Neuropathy #Silentmigraines #ChronicMigraineSyndrome #Fatigue #mom

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    Fatigue?

    I’m always pretty tired. A couple days ago I was pretty busy, when I sat down I got this over intense exhaustion. Almost like uncontrollable urge to fall asleep. It freaked me out so bad I started panicking.

    Yesterday, I was really busy again around the house. Today I’ve also been really tired. It happened again when this uncontrollable tiredness hit and I felt like I was falling asleep. Again, made me panic.

    does anyone else experience this? #Fatigue #hashimotos #GravesDisease #AutoimmuneDisease #Undiagnosed #HashimotosDisease

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    Myself

    I sometimes have these moments where I feel myself come back. I sit there and take it in knowing it won’t last long. I’ll sit there and appreciate that I’m still here, deep down I’m still here and I’ll come out every once in awhile. I fight for her to come out everyday but it’s not easy.

    I sit there and appreciate the moment of peace, no pain, no rapid thoughts, just myself. Not the amber that’s filled with physical anxiety, not the panic filled amber, not the amber that has full body tremors almost daily.

    I appreciate the moment of silence, of peace, the small moment I get to think “I’ll be ok, I’m not dying” the small seconds I get to breath and my brain calms down before it all slips away again. #Anxiety #PanicAttack #hashimotos #GravesDisease #MentalHealth #ChronicPain #painsucks #anxietysucks

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    Music is my therapy

    I listen to music almost all the time. And just to warn you, I’m going to be singing along. (I have a good voice though) My kids complain about it (13,17 both boys and both on the Spectrum but at completely different levels. I suspect that I’m autistic #Autism so I understand why certain things bother them. It doesn’t matter if it’s their favorite song playing, they insist that I turn it down (one seems to have super hearing because he’ll be on the computer (which is between all of the bedrooms and all of the doors are to remain shut) WITH headphones on, and I’ll be on my bed listening to my #Music and possibly singing, and then I’ll hear one of my sons yelling “Turn it down!” And I have to turn it down to where I can barely hear it or put my headphones on. And when I yell to one of my kids from the same place I had been playing music, they yell back “If you’re trying to talk to me then come out here!” Or they knock on the door and I yell “Come in!” And they reply, “What? I can’t understand what you’re saying! Can I open the door?” But my music is WAY TOO LOUD. And then I’m going, but you like Slipknot! And they always say that they don’t want to hear it right now.

    So I go out to the porch with a speaker and I can blast my music outside. Music was one of the only things that would calm down our feral #Cat (we’ve had him since he was 5 weeks old and his mother was rejecting him) but he was just amazed at the sounds coming out of my cell phone and stop using his teeth and claws when we had him in the bed. (Side note- no matter how young the feral cat is, and how used to humans they are, they are still wild animals and you have to take time to tame them) His favorite band was #tool . He would actually curl up on the phone and listen.
    I have several chronic illnesses and emotional issues—#Ehlers -Danlos Syndrome type 3, #Fibromyalgia , #idiopathic peripheral neuropathy,#Dysautonomia and I’m being evaluated for #Lupus and #rheumatoid arthritis (EDS likes to bring friends), and I have a small cyst on my pancreas that could turn cancerous (my grandfather, great grandmother and my great uncle [my grandfather’s brother and g-grandmother’s son] all died of #pancreatic cancer. I have a bunch of #nodules on my liver and my #thyroid , #Migraines AND #cluster headaches, #hashimotos , and I suspect #Celiac disease since my mother and nephew have it and it would explain a whole lot (right now I’m cutting out dairy, then wheat, then soy-which is difficult because I’m a #Vegetarian ) plus my mental illnesses, #PTSD , #Bipolar disorder,#Anxiety and depression—and those last two are actually a CRITERIA for #EDS .
    I have to have my music and be able to listen to it—before I had ear pods, I would just play it on my phone with it stuck upside down in my bra. The music that is played in stores that I have to go to will actually give me a #Migraine so I don’t have any problems with bothering other people by playing my favorite playlist. They need to be exposed to good music anyway.
    I loved that I had a Bluetooth radio in my car, and I would have it turned up loud, and when I was smoking (I just quit!) I would have the a/c blasting (I live in #austin #texas , so it’s running year round) and I would have my window down for my cigarette. And this way I could expose people to good music (if I had a chance to say just 5 words to the country, it would be “ STOP LISTENING TO SH*TTY MUSIC”(seriously, what’s with all the smut in popular music today?)) and possibly find another person that enjoyed the bands that I play.
    My number one song for my bad days is #invincible by #tool and this song has been my anthem. Also, A Perfect Circle’s #feathers , another #tool song, #thepatient (can you tell that I’m a big fan of Maynard James Keenan? I have everything that he’s released on my phone) and when I’m dealing with my #PTSD , there’s nothing like The (Dixie) Chick’s “Not Ready to Make Nice “and L7’s “Sh*tlist” and a whole lotta Hole.
    I’m into a lot of different genres, but mainly #Metal and #Punk (not pop punk! I don’t call that punk. It’s alternative.). And if I’m not in a motorized cart, having a good day, and I can see the security camera, then I’ll start dancing along the aisle (but not with other customers in it unless I can tell that they’re a punky/gothy/metal head/freak and then I’m talking bands with them.
    #Music has also been a way for me to meet people with similar tastes. I can’t go to listen to live music or go to a concert because of my #Dysautonomia . I don’t think that they would let me bring in a couple gallons of Gatorade. But I also made a battle vest with band patches and tons of band buttons (mainly punk bands and metal) and people will comment about this or that band, and ask what my favorite album is and my favorite song by that band (I know at least one song by each band and I’ll either name the song that is considered the best or an obscure song by a band that is mainly associated with just one song (like the Sex Pistols—I like the song “Pretty Vacant”) because I don’t just listen to one song, because you’re going to miss out on so many great songs that weren’t played on the radio.
    This is what I collect. Music. Musicians. And I’ll research them and tell people obscure things about that musician or band-like that during a Nirvana concert, Kurt Cobain saw a girl being sexually assaulted in the audience and he didn’t say a word but put down his guitar, grabbed the guy and hung him from his belt loop on a prop so everyone could see him and then Kurt went back to his chair and as he was picking up his guitar he said into the microphone while looking towards the guy and said “Now you get to be exposed.” Not the only time a musician has come to the rescue of a fan.
    If I’m not listening to my music, that’s a signal that I’m extremely depressed. Because it’s such a part of my coping methods when I’m dealing with pain or exhaustion or anxiety or depression or dehydration or nightmares. I’m not savvy enough to post my parts of my favorite playlist, but for anyone who is dealing with a #chronic illness that has changed their entire life (which one doesn’t?) I highly recommend listening to TOOL’s #invincible from the Fear Inoculum album. And if you’re dealing with #PTSD , listen to A Perfect Circle’s #feathers . That song is like Maynard’s supporting you in your recovery.