Join the Conversation on
25 people
0 stories
3 posts
Explore Our Newsletters
What's New in

Have Fibro but feel there’s more?

#sjogrens is a very difficult AI to get diagnosed. Some medical professionals have stated it is the second most common behind #ra. If you have symptoms of #Fibromyalgia #IBS #AutoimmuneThyroidDisease #DryMouth #dryeyes and/or #Neuropathy , seek a doctor who will do a lip biopsy (oral pathology). All of my blood work said negative, but the lip biopsy was 100% positive. Only 60% of patients have positive blood work diagnosis. #AskMeAnything
Light and love.

See full photo

1.5 years post op #bariatricsleeve

#bariatricsleeve 12/24/19. #rawarrior . Started with a BMI of 50, now? 28.9.

Best. Thing. Ever. Doctors take me seriously and since surgery I’ve been medicated for two long-standing issues that were formerly “Lose weight and it’ll go away.” They didn’t. 😒


1 comment
See full photo

Hey. Here’s a little about me! #firstpost #aboutme

Well... Hi! I thought I’d introduce myself.

I’m Pan, and as my profile says, I’m 25, I’m female and I’m gay. I’ve suffered with complex medical issues throughout my whole life but back in 2016 I was pretty much bombarded with a lot of stuff. For a while I didn’t think I was going to make it.

Ever since I was 8 years old, I’ve had problems peeing. Sometimes I just couldn’t go at all and I pushed so hard I hurt myself so bad and bled so much we all thought I’d started my period. No such luck. No, what I had is a condition called Interstitial Cystitis. It is very painful and quite debilitating. I wasn’t even diagnosed with this condition until 2016. I had 12 years of that hell with no explanations. I would get up at least 8 times a night to pee... Even now I still have to get up at least eight times. And some other times I just can’t pee at all. My bladder muscles “for no apparent reason” sometimes choose to not work. this is what a urologist told me.

I will admit, I’ve learned a few tricks that can help me quite well when it comes to controlling how much I pee, and I’ve learned to self catheterise so I no longer need to rush to hospital with a full bladder. I take instant release morphine for the pain, though. Even when I avoid ALL triggers I still need very heavy pain relief.

Anyway, moving on to my next condition. Postural Orthostatic Tachycardia Syndrome. It’s a dysfunction of the Autonomic Nervous System. Basically, my brain and heart don’t communicate properly. When a healthy person stands up their blood pressure rises to go against gravity and push blood up to the brain. My brain doesn’t bother sending that signal to my heart and blood vessels so when I stand up gravity drags all my blood down into my calves (which is quite painful), this starves my brain of oxygen and I fall to the floor unconscious. Whilst I’m unconscious my heart starts pumping extremely fast (sometimes as fast as 190 beats per minute) to try and manually push the blood back to my brain. Each loss of consciousness usually lasts about a minute or two.

In late 2019 we discovered that I have Advanced Liver Fibrosis. But we have no idea why. All we DO know is that my liver is so very enlarged it pressed against my stomach HARD, making it difficult for me to eat more than a few bites of food before I become horribly and uncomfortably full. This can sometimes really hurt because my liver is literally squishing and moving my organs around inside.

I have several other health conditions but they’re all a bit boring and don’t impact my life as much as these ones do. I should mention, I’m unable to work because of my health. It’s made my life incredibly boring.

I hope everyone is as well as they can be. if you have any questions feel free to ask them.

#InterstitialCystitis #Diabetes #BorderlinePersonalityDisorder #LiverDisease #AdvancedLiverFibrosis #Depression #AskMeAnything