Undiagnosed

I’m undiagnosed, but have elevated liver enzymes. I’ve been dealing with a lot of pain in my upper abdomen that feels like my organs are just so distended, it’s an unbearable sensation that I’ve never felt anything like. It often radiates to my shoulder or back. I also have unexplained weight loss, nausea, loss of appetite and fatigue. I’ve already been through lots of tests for things like viral hepatitis, CMV, mono and nothing has come up. I feel like I can’t do this any longer, all I want is to just feel better.
#ChronicPain #Undiagnosed #AutoimmuneHepatitis

Hi, my name is fridgewraith. I'm undiagnosed, mostly, and still looking for answers, and I found this app tonight.

#MightyTogether #Depression #OCD #Gastroparesis #Undiagnosed #Anxiety

2020... I had an IUD taken out thinking my severe sharp cramps were because of the IUD. Doctor put me on estrogen birth control and my menstrual cycle took a turn for the worst. I had a plague of symptoms that all were so severe. From severe lower back pain(I could not sleep on my back, had to sleep on my side, I couldn't just roll over, it hurt to even sit on the toilet. When I drove I had to sit on a circle pillows to keep my tailbome off the seat) I also had heavy peirods(clots, severe cramps then went into my inner thighs and would hurt my already painful back, light spotting carried on after peirods and in between periods, it was as if I only had a week off of bleeding a month) I had the worse bum cramps, peeing hurt all the time(burning, having to urinate often) Sometimes if I didn't pee I'd get sharp pains. Id have either constipation, diarrhea sometimes, depressive episodes. I couldn't wear a tampon(I ALWAYS wore them with no problem) but suddenly they didn't sit up there anymore, they'd get lodged sideways and fall out. I was forced to wear large pads. I couldn't physically go anywhere. It was a big deal to leave the house. Anyways fast forward. 2021-2022 I found a lady doctor who put me on Visanne, said if it worked it is likely Endometriosis. It worked. 98% symptoms gone. But I began getting severe left sided pain(and lower abdomen pain) She told me I needed the diagnostic surgery. Met the gyno. Specialist (who doubted it was Endo, thinks its IBS which I'm not against but that doesn't answer my menstrual issues) she put me on Myfembree. Which worked like gold! Fast forward again(after arguing with a gynecologist, I thought, "I just want to make sure it is endo and if we can get ahead of it") I had my surgery last week, they didn't find anything. She said it was just painful periods. (Btw, she BARELY read any of my history the lady doctor wrote down for me over the years, this specialist didn't read barely anything.) She isn't looking into my issues anymore. She said we will do a six week follow up on your surgery incisions and that's it. It sits so wrong with me. The medication is working, but I discussed with her before the surgery that the last med stopped working and I'm concerned about that happening again and she agreed. But now it's not a concern? I'll probably go visit the woman doctor again but I feel like I'm being ridiculous now. I feel like I'm overboard or I shouldn't be worried. Is there not other conditions this could be? Because I looked up the confusing word(painful periods) and that does not tick off my symptoms. Anyways, that's my very shortened story. Sorry about that.

I feel really bad, especially today. I’ve been eating all the daytime, sugar, lot of candys and chocolates, I just can’t stop. I drank soda like it was water. Even if I didn’t want to eat anything, I kept picking more and more sweet things. It makes me feel better for a while, but then I just go back to feeling badly and exhausted. I’m like that these days, waiting for sugar to make me feel better. I mean, I like candys and those stuff, but I just eat one a day, I almost ate a box of chocolate, of like 50, all alone.

#MitochondrialDisease #Undiagnosed #RareDisease

Hello everyone. I have been seeking for answers my whole life and just learned about mito and sounds very possible. Here are my symptoms:

-significant fatigue that often has my body feeling extremely heavy. Sometimes to the point of not being able to move/will have trouble breathing. Rest helps a bit.

-muscle pain, spasms, twitching, and tightness.

-muscle fatigue/weakness(?)

-poor growth (due mainly to growth hormone defeciency) and a lot of trouble eating & gaining weight. Dx of gastroparesis and IBS as well.

-had an EMG done as a teen that was abnormal but inconclusive as the tech couldn't interpret the signals.

-Visual blindspots

-Orthostatic intolerance

-Probably more to add but cant think of them. I recently had to invest in forearm crutches and while I try to avoid them, do use them on worse days.

Hi, my name is spoonie_cowboy. I'm undiagnosed and am suffering with debilitating fatigue as well as other symptoms such as widespread chronic pain (probably centralized), nausea, high heart rate, congestion, and severe period pain. I have been fighting for a diagnosis for the fatigue for over a year and for other issues for 2+ years. Looking for ways to manage mental health when I am so physically tired all the time + ideas on how to manage my time to get a diagnosis faster. Although I have many resources in place, such as therapy, caregiving, patient advocacy, etc, I am just too tired to get all the testing I need and I have to wait months for appointments sometimes. Looking for support, ideas, community, etc! Hope to give and receive support from the chronically ill community!

#MightyTogether #Depression #Undiagnosed #Anxiety

I've often had joints feel wrong, or out of place, but I can't tell if it's 'normal' pains or if the joint actually has come out of place.

I've been in pain so long, paired with poor memory, that I can't really tell how severe my pain is anymore. i think of it in terms of texture (sharp, aching etc) and how distracting it is, rather than intensity.

how do you know if you've actually dislocated/subluxed a joint?

#Undiagnosed #EhlersDanlosSyndrome #ChronicPain

Has anyone had a Radiofrequency Ablation procedure for back pain? I have had two medial branch blocks done and I was unsure if those helped.