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Mysterious illness. Can't drink, eat, or walk without pain. Please help me
Age: 22 Sex F Height: 5'2 Weight: 110lbs Race: White/ Native American Duration of complaint: Since August 2016 Current medications: Linessa, Paxil
I'm really desperate for help. I am unable to work and I'm in pain 24/7 but nobody will take me seriously and I need to know what I should be asking for at this point. So sorry for how long this is.
Extreme abdominal pain. The pain feels like I'm a pumpkin and somebody is scraping out my intestines. When I'm very bloated it's difficult to get urine out. I spent a week in the ER with severe dehydration to the point where I couldn't breathe. It hurts to touch my stomach. I've also been getting...rashes? on my hands and arms. If I get a cut or anything nothing will heal, it takes weeks/ months. A significant amount of hair has fallen out. I'm tired all the time and sleep for 12 hours a day. Can't eat or drink without pain. Can't walk without pain and haven't left my apartment for a month. Sometimes gas continues for hours upon hours. Pain worsens around 4:30 and continues until around 1pm the next day. My bags under my eyes are very dark, my skin has become very pale (and I'm not a pale person). I can't eat many foods.
In April 2016 I began to lose weight, and lost 100 pounds by the next year through walking/ calorie restriction. I had binge eating disorder before this. In July 2016 I had my first attack, for a week straight I had severe intestinal pain that left me unable to walk. I'm not sure if it's relevant but at the same time I was living in a really bad apartment, everything was breaking and I had toilet water leaking into my bathroom from the upstairs neighbours 24/7. The pain eventually subsided on it's own but it kept coming back for 4-5 days at a time and then a period of being pain free. I tried gluten free, dairy free, FODMAPS etc etc with no changes. I was diagnosed with ibs at this point by a walk in clinic, the doctor wouldn't let me say anything other than "stomach pain" then shoved me out, I wasn't given anything. Another doctor diagnosed me as bulimic.....lol...not puking.....
Throughout the rest of the year the pain continued to get worse, it was mostly hitting me after 4pm and I would have nonstop gas for HOURS at a time. By Summer 2017 I was at my first job and it would leave me unable to work most days.
It got intensely worse in October and has completely spiralled from there. I've eaten the same thing every single day for over 6 months because although I'm in pain every single day of my life other things tend to make it worse. Basically some carbs are safe, no vegetables, no protein, no fats. I eat oatmeal all day if it gets really bad, but I will still be in pain if I do so. Drinking water makes the pain worse. I haven't left my apartment in over a month because I have stabbing pain from walking. My BMs are very very dark and I usually go 2-3 days with nothing and then have diarrhea. Two days ago I had to go to the ER because of the pain...but was told I should take a walk and have tylenol lol?
Here's my pain diary: https://i.imgur.com/9TSsusz.jpg Rash: https://i.imgur.com/OjzQJr1.jpg (they come and go, the itchy part is just where my IV was, the other bumps aren't itchy)
My doctors say my blood/ urine tests are normal, but my white blood cell count is 7.40 and my leucocyte esterase is 250 (I can post my full blood/urine tests if needed- I had two done). They also said my ultrasound is normal with a small amount of free fluid in the pelvis and mild postvoid residual volume. I'm having a HIDA scan on Monday. I was meant to have a colonoscopy and the doctor who was going to do it said the pain is "normal for women" so I walked out. My Xray said I have scoliosis. No blood in stool. Those are all the tests I've had. I take digestive enzymes and probiotics. I'm currently waiting to see a GI and am first in line if someone cancels an appointment.
I'm really desperate for help. I am unable to work and I'm in pain 24/7 but nobody will take me seriously and I need to know what I should be asking for at this point. So sorry for how long this is.
Extreme abdominal pain. The pain feels like I'm a pumpkin and somebody is scraping out my intestines. When I'm very bloated it's difficult to get urine out. I spent a week in the ER with severe dehydration to the point where I couldn't breathe. It hurts to touch my stomach. I've also been getting...rashes? on my hands and arms. If I get a cut or anything nothing will heal, it takes weeks/ months. A significant amount of hair has fallen out. I'm tired all the time and sleep for 12 hours a day. Can't eat or drink without pain. Can't walk without pain and haven't left my apartment for a month. Sometimes gas continues for hours upon hours. Pain worsens around 4:30 and continues until around 1pm the next day. My bags under my eyes are very dark, my skin has become very pale (and I'm not a pale person). I can't eat many foods.
In April 2016 I began to lose weight, and lost 100 pounds by the next year through walking/ calorie restriction. I had binge eating disorder before this. In July 2016 I had my first attack, for a week straight I had severe intestinal pain that left me unable to walk. I'm not sure if it's relevant but at the same time I was living in a really bad apartment, everything was breaking and I had toilet water leaking into my bathroom from the upstairs neighbours 24/7. The pain eventually subsided on it's own but it kept coming back for 4-5 days at a time and then a period of being pain free. I tried gluten free, dairy free, FODMAPS etc etc with no changes. I was diagnosed with ibs at this point by a walk in clinic, the doctor wouldn't let me say anything other than "stomach pain" then shoved me out, I wasn't given anything. Another doctor diagnosed me as bulimic.....lol...not puking.....
Throughout the rest of the year the pain continued to get worse, it was mostly hitting me after 4pm and I would have nonstop gas for HOURS at a time. By Summer 2017 I was at my first job and it would leave me unable to work most days.
It got intensely worse in October and has completely spiralled from there. I've eaten the same thing every single day for over 6 months because although I'm in pain every single day of my life other things tend to make it worse. Basically some carbs are safe, no vegetables, no protein, no fats. I eat oatmeal all day if it gets really bad, but I will still be in pain if I do so. Drinking water makes the pain worse. I haven't left my apartment in over a month because I have stabbing pain from walking. My BMs are very very dark and I usually go 2-3 days with nothing and then have diarrhea. Two days ago I had to go to the ER because of the pain...but was told I should take a walk and have tylenol lol?
Here's my pain diary: https://i.imgur.com/9TSsusz.jpg Rash: https://i.imgur.com/OjzQJr1.jpg (they come and go, the itchy part is just where my IV was, the other bumps aren't itchy)
My doctors say my blood/ urine tests are normal, but my white blood cell count is 7.40 and my leucocyte esterase is 250 (I can post my full blood/urine tests if needed- I had two done). They also said my ultrasound is normal with a small amount of free fluid in the pelvis and mild postvoid residual volume. I'm having a HIDA scan on Monday. I was meant to have a colonoscopy and the doctor who was going to do it said the pain is "normal for women" so I walked out. My Xray said I have scoliosis. No blood in stool. Those are all the tests I've had. I take digestive enzymes and probiotics. I'm currently waiting to see a GI and am first in line if someone cancels an appointment.
Hello~I am sorry you are having all these issues.
I would first see an endocrinologist, maybe a gastroenterologist and then a gynecologist. So many of your symptoms point to issues with your ovary and also possibly your pancreas. Have they tested your blood sugar or done a A1c?
I think you need tests done on your upper and lower GI, an MRI to check your ovaries and other female organs, a blood sugar test to rule out diabetes.
If your regular GP won't do these, then see a naturopath, they can do the same things a GP can, plus, they also go deeper into the patient's history. They can order the needed tests and go over them with you as well. Believe me, they will take you seriously.
I hope you feel better soon.
I would first see an endocrinologist, maybe a gastroenterologist and then a gynecologist. So many of your symptoms point to issues with your ovary and also possibly your pancreas. Have they tested your blood sugar or done a A1c?
I think you need tests done on your upper and lower GI, an MRI to check your ovaries and other female organs, a blood sugar test to rule out diabetes.
If your regular GP won't do these, then see a naturopath, they can do the same things a GP can, plus, they also go deeper into the patient's history. They can order the needed tests and go over them with you as well. Believe me, they will take you seriously.
I hope you feel better soon.
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