Hello, I am a 20 y/o female with cystic fibrosis. I have a history of CF related liver disease which is being treated with medication and has been stable for years. I'm also pancreatic insufficient and have been taking pancreatic enzymes supplements - the same dosage for years, weight hasn't fluctuated enough to necessitate a change. For the past year or so I have started noticing pain in the upper stomach/lower chest area (specifically right side, underneath the rib cage and left side, in the back). Since I have CF most doctors assume it's lung pain, take X-Rays, say everything looks fine, and send me on my way. It wasn't until a few months ago when I began having stomach issues again that I considered the possibility it's a gastrointestinal issue, rather than a respiratory one. It does cause me to feel short of breath when it flares up, but my asthma inhaler does not relieve this.
The "flares" started happening probably around once a month, then gradually turned into about every other week as the symptoms worsened. I am now having definite stomach pain when I eat (or drink, when it's at it's worst), nausea, and bloating. It usually starts high up by my rib cage and comes in waves, sort of like cramps, but radiates anywhere - sometimes it's just a dull ache around and below my naval. The pains also radiate to my back, sharp pains up high that radiate down to my lower back. I feel like my entire torso almost constantly aches now, eating just a little bit makes me feel too full, I'm easily fatigued and out of breath even though my lung function is fantastic. Ultrasounds showed no gallstones, but slightly enlarged spleen that no one seems considered about due to my liver disease. I know CF can cause pancreatitis, but apparently I can't have that because I am pancreatic insufficient.
I don't know if it's relevant, but I feel like I should also mention that ever since this started happening, I've been getting petechiae on the tops of my thighs. At first they showed up every time I came off an antibiotic - which happens frequently, due to the CF - but now they seem to be coming back randomly. They don't itch or hurt so, yet again, no one is concerned.
It reached its peak about a week ago when I had cramps so intense I couldn't move for about seven hours. I went to a walk-in clinic right after, they did some blood work, and said nothing looked abnormal. Apparently I'm not being persistent or convincing enough, because no one seems to think I'm in too much pain for it to be concerning. Does any one have any ideas or advice? I don't know how else to get anyone to take me seriously.
Thank you in advance