- CASE FILE
Daily abdominal pain so bad I can only wear a loose gown, neck/back pain, pain/burning on tongue, roof of mouth, teeth, chronic migraines.
ABOUT THIS CASE FILE
I have several different issues that have literally disabled me. I believe they are related, if only a smart detective-like doctor could put the puzzle together! I’m so tired of specialists who will only look at one symptom. My quality of life has suffered to the point of my rarely leaving the house. I desperately want to live a meaningful life again.
I have pain/burning on my tongue, roof of mouth and teeth that was diagnosed a few years ago as Burning
Mouth Syndrome. However, now I get small sore/ulcers/hives on back of throat and hard palate, which is not consistent with a BMS diagnosis. Tramadol and/or Clonazepam do very little. The pain begins shortly after waking, intensity starts to increase to the point of being unbearable at around 4pm. I’ve tried taking Valtrex daily for several months, in the hopes it would address any pain caused by herpes virus. (As suggested by study done by Dr. Maria Nagle, Burning Mouth expert at University of Colorado)
I can no longer attend evening social events because the pain is so extreme. I spend my evenings drinking ice water and sucking on frozen fruit to soothe the burning.
I suffer with daily abdominal pain that makes it impossible for me to wear a bra or anything around my waist. Some days the only clothing I can tolerate are these loose “moo moo” gowns. I have to cancel appointments/plans on these days. On better days I can wear a ruffled top (to hide the fact that I’m not wearing a bra) with a loose, stretchy bottom.
I had a partial colectomy four years ago, removing 2/3 of my colon, due to chronic Diverticulitis. The surgery found evidence of long term inflammation. I had a long, painful recovery and feel that I’m worse off now. I was treated for SIBO a year after surgery which reduced my diarrhea from 20x a day to about 5x. (Which was actually breakthrough diarrhea due to partial blockage/constipation according to one CT Scan)
Currently I am usually battling constipation or unexpected diarrhea or sludge. I always have significant pain and discomfort after bowel movement, sometimes so bad I have to lay down for a few minutes.
Along with daily discomfort, I have lower left abdominal pain that waxes and wanes.( seems cyclical)
I’ve had upper GI’s, gastric mobility test,CT scans and MRI’s & Genetic testing for celiac. I’ve tried gluten free diets, dairy free, paleo, Fodmap and currently vegetarian. Nothing seems to make a difference. I’ve tried numerous supplements and natural remedies, to no avail.
I have had chronic migraines for almost 20 years, sometimes with vertigo. I have had inpatient treatment at Diamond Headache Clinic, have had MRI’s, Neuro-physical therapy, tried all the usual prophylactic treatments and Botox. I can’t tolerate Statins. Nothing really helps. I’m currently testing medical cannabis/CBD.
I have neck and back pain with pain sometimes radiating to my arms/hands/legs. I’ve had these problems for years, getting progressively worse.
I’ve had MRI’s, CT scans and X-rays. I’ve got typical degenerative changes, several mild bulging discs, I’ve suffered some loss of height in my neck and just this month discovered a new mild levocurvature of my lumbar spine. I get lower back “episodes” several times a year that can be crippling to the point of being barely able to move/walk. I’ve been prescribed Prednisone type drugs for these “episodes”, which used to work like a miracle, but are becoming much less effective. I’ve had dozens of rounds of physical therapy, with aqua therapy being the most effective. My last “episode was a couple weeks ago. It lasted a month this time! The recent intensity and recurrence of these lumbar “episodes” which include sciatica-like pain in my drivers leg, has made it impossible for me to drive (ten miles) to the facility for PT treatment.
I never wake up feeling refreshed. I usually experience an intense feeling of cold that lasts a couple of hours. My hands, feet and sometimes abdomen feel icy cold to the touch.
I have debilitating fatigue. I have a very limited amount of energy in the morning, but I’m exhausted by noon.
My hair has thinned to half of it’s former thickness.
I have sinus issues... my nasal passages are always dry and sore. When lying in bed I sometimes feel intense pressure/pain. I’ve seen ENT specialists, had MRI’s, tried nasal sprays and neti pot. Aside from a slight deviated septum, everything appears normal. I do wonder if the teeth tingling and pain are related to the sinus issues.
I have Anosmia and a diminishing sense of taste.
My eyes are dry. I’ve been unable to wear my contacts for years. I apply hot packs daily, I use rewetting drops daily. I’ve tried Restasis and nothing helps. Also, my lids are frequently dry and flaky.
I get a variety of weird rashes. One recurring problem is Angular Chellitis. I also get eczema-like patches on my feet and scalp. I had a particularly scary rash on my back that prompted my Dermatologist to do autoimmune testing. I was found to have a positive ANA. I also take Levothyroxine for Hypothyroidism.
I’ve also been experiencing brain fog that really scares me.
I’ve had extensive blood tests and besides low Vit D, the only significant finding has been the positive ANA and elevated RNP.
I feel like my life has been stolen from me. When I pray, I beg to feel better...to have energy...to have a LIFE.
Thank you so much for considering my case, I truly appreciate it.