Still sick, getting worse, and can’t deal
June 27, 2014 5:32 PM Subscribe
I’m dealing with a variety of debilitating health problems, and I'm having trouble coping and getting to the bottom of the cause. I’m toward the end of my rope and have had too many breakdowns to count.
I’ve asked for help before here. I’m still searching for answers so my question is three part:
1) What are some tools, language, mantras, etc that I can use to help advocate for myself when dealing with doctors?
2) How do I cope during the times when I can’t function normally or sometimes at all?
3) What questions, tests, or treatments should I be looking into besides what I already will list?
24 years old, have had stomach problems my whole life, put on formula as a baby for failure to thrive, had an ulcer at 4, barium swallow at 11ish, stomach scope in 2009.
My health has been going downhill since about 2009, when I developed reactionary hypoglycemia and low blood sugar problems, I began having stomach cramps, and began having severe stomach pain (again). I had a scope and was told I had GERD and to take Prilosec, and that I probably had mild IBS.
Over the past two years all my symptoms have gotten extremely worse to the point where I can’t function some days. I have debilitating stomach pain, loose stools, increased bowel movements, severe heart palpations, heart racing, and pre-ventricular contractions. I feel like I can’t breathe or catch my breath. I get headaches, had a severe migraine last month. I have severe nausea. I have trouble focusing. I get more anxiety and nervousness. I also get REALLY hot often. Which is unusual for me. That’s not even a full list.
Things I’ve done recently:
-Take Prilosec once a day and eat regularly to manage blood sugar. Drink lots of water. Avoid caffeine. No drugs or alcohol. Rarely take any pain meds, since they’re bad on your stomach.
-Had a holter monitor that diagnosed the ventricle contractions. My GP stated “Yeah, you’re having a lot of them and your heart rate even today was 107.”
-Met with a good GP – Low iron that’s been raised with OTC vitamins, all other standard blood testing (including thyroid) was normal. She was very surprised that it was normal.
-Tested negative for H Pylori.
-Was tested for celiac (genetic and blood test) and was negative.
-Cut out gluten, lactose, soy, and eggs with improvement with overall stomach problems. My doctor has approved of cutting out these items as I have maintained/slightly gained weight and seen some improvement.
(They were, well, really really really bad and disgusting. I was severely bloated.)
-Met with a GI who suggested a stomach scope and colonoscopy for possible Crohn’s. But didn't have many ideas beyond that.
-Getting a small breast lumpy area checked that’s flared up with pain over the last couple menstrual cycles, but I assume it’s unrelated.
I have my next follow up scheduled all the way out on the 11th. At this point we’ll probably be discussing getting on Beta Blockers, although I’m nervous about that since I don’t want to mask and symptoms. Plus I'm small and have strong reactions to meds, so I'm nervous about side effects. I feel like I want to push more testing for my thyroid since it seems like almost classic hyperthyroidism, all the way down to not being able to handle heat like I used to.
I’m also really nervous about the prep and recovery for a colonoscopy seeing as how I can’t even function regularly. I’ll probably be curled up on the bathroom floor feeling like I’m going to pass out. (Did I also mention that I have severe emetophobia so the idea the prep could make me puke is terrifying.) The GI doctor said he would take biopsies. I may want him to look into rare conditions as well like Whipple’s. (I mean, test away! Right?)
Anyway. I need help. I had to leave work early today because my stomach basically feels like I drank battery acid and tums, pepto, water, and food haven’t put a dent in the pain. I can’t deal like this every day and really need help, ideas, and words of encouragement.
I often have trouble explaining to a doctor just how bad everything is. I guess it’s a holdover from putting on a tough face at work. I just really want to be able to do normal activities. I'm honestly really scared that it's something incurable or with few treatments. If I'm already this sick on a regular basis, I'm not sure how to deal with knowing it will get worse. I want to live to my full potential and my body is holding me back.
anonmefi14 at gmail.com for followups.