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I believe you

To all the mighties out there I believe you! What hurts hurts! And it hurts the way we say it does. Do we still have to do the things anyway? Yes. Do we still have to defend ourselves ? Yes. I believe you. #BrainInjury #Undiagnosed #ChronicVestibularMigraine #Dysautonomia #MentalHealth


Symptom Tracking

I'd really love to know if anyone has a good method for tracking their symptoms. In the past I've used a bullet journal but it gets so overwhelming to keep up with. I'd love an easier system or even an app or something. I want to track for myself to find patterns and hopefully some relief, but also for my doctors as I work towards a diagnosis. Any tips are greatly appreciated. 💜 #Fibromyalgia #Undiagnosed #ChronicPain #ChronicFatigue

12 reactions 6 comments

Meltdown Help #BipolarDisorder

Putting myself out there today to ask for help…

I wish I understood this disease more clearly. What my triggers are and how to combat them. Most of the time I am status quo. Then it hits. Especially at work. Today has been really hard. The worst is that I can sense my feelings coming out through my words but have no idea how I actually found to others which is terrifying. Do I sound mean brash and out of control? Feel pressured speech and just laying into other colleagues mostly when there is a high level issue at hand. Any ideas on how to calm down quickly and address the outburst before it happens? #Undiagnosed #MentalHealth #OCD

2 reactions 3 comments

I don't have a name for this phenomenon but does anyone relate?

I've recently had to live a life exactly like an able bodied healthy person whilst feeling basically every symptom ever. I've been bed bound and house bound but I always pushed myself as much as I could to fullfil others expectations of me but for a month when I had my exams I had to basically go to the exam hall climb four flights of stairs every other day and sit for three hours and I'm someone who can't sit in one posture for more than 2 minutes and get a mini heart attack from climbing just one flight of stairs. This was such a traumatic experience that I'm literally having repetitive nightmares about it. I have to do this every year now aswell and I just don't know how I'll survive. The worst part is I feel like I can't relate to the chronic illness community anymore because we're always talking about how much we have to rest and count our energy but I can't even do that anymore because I literally have to live the life of a healthy person despite being in so much pain. Bed rest seems like a privilege now. I feel like now I belong nowhere. The chronic illness community was the one place I thought I could relate to everyone but now it doesn't feel like that anymore. I know everyone in this community is pushing themselves beyond their limits and so was I every single day but now what I'm experiencing is just another hell. I don't know what to do anymore. There's so much self doubt now aswell like "if I can do this then maybe I'm not as sick as I thought" even tho that's so untrue because I'm still just as sick. I don't know what to do. I literally wrote about this twice now but the post automatically gets deleted for some reason so now I'm also annoyed I was literally crying after writing about this and then it just got deleted outta nowhere. I'm constantly being called lazy and being told I need to work harder and that has always been the case since I live in a very ableist household in an ableist country. But now it cuts so much harder since I've literally pushed myself beyond every human limit ever and they're still not happy with me. I got told this twice today and it's just unbearable. I don't even know what to do anymore.
#Fibromyalgia #IrritableBowelSyndromeIBS #Undiagnosed #Depression #Anxiety #ObsessiveCompulsiveDisorder #ChronicFatigue #ChronicIllness #ChronicPain

14 reactions 11 comments

new here

Hi, i'm new here, I have both diagnosed and undiagnosed chronic illness and right now really struggling with loneliness. #Undiagnosed

11 reactions 2 comments

Looking for suggestions on where to go next

Hi! I’m 27 years old and have been struggling medically from the time I was 5. At 7 I was diagnosed with Crohn’s, but since have been told “you don’t have any active colitis” or “we can see something wrong in your bloodwork but can’t identify it”. I have been to GI, hematology, ENT, derm (horrible skin rashes and HS diagnosis), asthma and allergy, nephrology, and nowwwww rheumatology. My rheumatologist has done work ups and landed on “fibromyalgia” and chronic systemic chrons disease. I have symptoms such as intense stomach pain from time to time, Reynolds, anemia, chronic inflammation, constant nausea, intense fatigue and in the past few years Ive developed severe joint pain at my shoulders neck and hips. I’ve started humira but I feel like it makes me worse and sick for 2-3 days, I feel great for 3-4 days, then have to do another injection. It sucks.

So….. I’m here to ask you, what else can I do? I’m looking into getting a genomic sequencing study done and traveling to the Mayo Clinic or John Hopkins for another opinion. Does anyone have any suggestions for genetic doctors (I live in the Boston area but willing to travel anywhere at this point)? And does anyone have any recommendations for who to go to first, immunology at a large institution like Mayo Clinic or genetics clinic? I’m overwhelmed. Any advice would help!!!!

#Undiagnosed #AutoimmuneDisease #Fibromyalgia #CrohnsDisease #RheumatoidArthritis #InflammatoryBowelDiseaseIBD

6 reactions 1 comment

I’m new here!

Hi, my name is kuhing. I'm undiagnosed and am hoping to find suggestions & support.

#MightyTogether #Undiagnosed

7 reactions 5 comments

Does anyone actually know what to do after a self diagnosis?

I've known I have fibromyalgia and many other illnesses for two years now after researching like crazy (not just on Google, on many trustable medical encyclopedias and sources) but I don't know what to do about it. I mentioned it to a doctor once and they just kind of ignored it and since then I've shut up and just kind of not done anything about it. I seriously don't know what I can do get an official diagnosis. I still struggle on a daily basis with unbearable symptoms and especially with chronic pain but I just don't know what to do to get diagnosed and treated since in the place I live in, fibromyalgia isn't even that well known even to doctors. Does anyone have any suggestions on how I can get an official diagnosis by a doctor?
#Undiagnosed #Fibromyalgia #ChronicIllness #ChronicPain #Depression #ChronicFatigue #Arthritis #IrritableBowelSyndromeIBS

37 reactions 31 comments

Never trust the smile of a spoonie

We are the strongest people you will ever meet. And don't you ever forget it.
We might look okay, but we seldomly are.

We can look like a thousand bucks but feel like we just fell 1000 feet from an airplane onto thousands of legos with oozing cuts and bruises all over but we'll be smiling and laughing.
Our smiles will fool even the ones closest to us. Why do we do this? Because we don't want to inconvencience anyone else with our pain. It's not like we can be crying, screaming and moaning 24/7.
The tears are reserved for the flares that are a 8/10.
So when you see our smile fade, just know we are doing even worse than you can imagine.

We are warriors.

Every single day we wake up and fight our bodies. While we also try to manage our relationships, career and social life - as if those things aren't complicated enough without chronic illness being involved.

Health is the biggest wealth. But only those who lose it can truly appreciate that fact.

Stay strong fellow spoonies. 🤍🤍
#AutonomicDysfunction #POTS #Migraine #Undiagnosed #ChronicFatigue #Spoonie #InvisibleIllness

20 reactions 4 comments

Not diagnosed with anything yet

I have chronic pain and numbness in my upper/ middle back, shoulders and hands. The back is tense without any control from me, no stress causing it ,though it causes stress, sometimes it will seize up bad enough I am arching off the bed or where I am sitting. Doctors keep throwing bandages at these things and no tests so I am frustrated, as is my partner who has to witness it. If there are any advice or thoughts, it would be helpful. I am fresh out of ideas as to what this could be. Just feels like my muscles tense to the extreme and the pain can get nauseating. #Undiagnosed #ChronicPain

6 reactions 10 comments