itsnotallinmyhead

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The picture of health... #ChronicIllness #allinyourhead #ER

Getting so frustrated with being treated like a crazy person seeking attention or faking symptoms. Saw my doctor again yesterday and was sent to the ER, because I had been experiencing shortness of breath, extreme muscle fatigue that made it hard to walk, dizziness, and lightheaded when standing and muscle twitching and shaking. Blood pressure dropped and heart rate spiked when standing. I go through a lot everyday, but this was not my "normal". IV was started and so much blood work done. Then they sent me up to CT. Hours later he comes back in as I am still shaking and twitching and dizzy and tells me that all tests were normal and that medically speaking I am "The picture of health". He said not sure what's going on, but maybe it was my antidepressant causing "side effects". Told me to check in with my doctor next week. I asked him what else could be going on as my meds weren't new and this has never happened before. He said well, you have fibro and are taking pain pills and muscle relaxers, I'd start with that. He said he had to go and that I would be discharged. They pushed me out in a wheel chair (because I couldn't walk) and said have a nice night. I left crying and defeated. It's not that I was hoping they found anything wrong, I was just hoping to be validated in what I'm feeling. To prove that it's not all in my head. To be believed and taken seriously, not dismissed like I am faking it...My husband is having a hard time believing me now because he keeps just repeating the doctors saying, well they say you're fine. He says it's always something, so he never knows what to take seriously...All of it! all of it is serious to me. It's scary and painful everyday, all day. And I just want to know that I am not going through it alone. That he is on my side, that he is there for me and will fight for me to figure this out!
Back to the pain specialist next week for hopefully some better insight. Just needed to vent for a minute as I am sure I am not the only one feeling "dismissed " by the doctors. It's like they take one look at my chart, see my meds and instantly write me off! Thanks for listening warriors! We got this and will keep fighting everyday!
#Fibromyalgia #EDS #CFS #Depression #itsnotallinmyhead #InvisibleIllness #realsymtoms #Spoonie

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Finally #itsnotallinmyhead

today I heard words that I must have been waiting to hear for years, because it instantly brought me to tears. I have had neurological problems since 2014 with no diagnosis. Everything is “normal”..... a few months ago I started having pulsatile tinnitus and knew something wasn’t right. I was dismissed by the ent, but when my neurologist and pcp read my CT they also knew it wasn’t right. Anyway, today, after a long two weeks of lots of symptoms, a migraine etc my doc said, “there is something wrong, you aren’t crazy, and I promise you, you will not live like this for the rest of your life.”😭 A medical professional that supports you and believes in you is so important! Don’t give up your fight to get better, no matter what the fight is. I gave up after a few years and my husband encouraged me to be persistent and not just take “normal” for an answer. I’m so glad I listened to him. You all are worthy of living the best life you can! XO 💗
#CheerMeOn

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C-PTSD and Doctor’s Appointments

Nothing like the familiar feeling of your heart droping into your stomach when another doctor says there’s nothing significant on your MRIs. #itsnotallinmyhead #CPTSD #EDS

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#roses and #thorns

My thorn is finding out that my immune system is attacking me again and that I have to go through a looooong process again to figure out what it is
My rose is that it is visible so I have proof of my condition and that #itsnotallinmyhead #RelapsingPolychondritis#Fibromyalgia
#CheckInWithMe

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