This started around 1980 with tinnitus and a full feeling in my head and generally not feeling 100%. All symptoms became worse around 1994 and have been gradually worsening since then.
Very strong stinging pain in sinuses, nose, eyes, ears, mouth, lips.
Swelling in nose, difficulty breathing through my nose.
Tinnitus and pain in ears.
Pain and redness inside my mouth. Every visit to the dentist over many years, she comments on the redness in my mouth. No benefit from leaving dentures out or rinsing with saline or bicarbonate or from anti-fungal lozenges or anti-fungal drugs.
Sore throat. Post-nasal drip.
Very strong aching everywhere else, all joints, all muscles, tendons and ligaments, back, chest, arms, hands, legs, feet. Everything hurts.
Some abdominal pain.
All-over sick, unwell, aching, feeling. Generally feeling like really bad dose of the flu.
Difficulty sleeping, waking often, partly from pain. Four sleep studies in 2005 and 2009 showed no apnea events but some hypopnea. I’ve been using a cpap machine since 2005, but it has not helped at all, and I have difficulty using the cpap because of the nasal swelling and restricted breathing. (The nasal swelling may be causing the measured hypopnea.)
Very soft stools. I occasionally feel a little better after emptying my bowels.
Occasional red rash on face, chest, glans and foreskin, around anus, and on legs.
Difficulty concentrating.
Other information:
All of my symptoms are somewhat worse the day after a large carbohydrate meal and much worse the day after a large protein meal, but I can’t find any doctor who is interested in following this line except for a glucose tolerance test.
Very restrictive elimination diets for up to nine months at a time have not helped. Food challenges at the end of these diets have not identified any allergy or sensitivity.
Some doctors have commented that pathology tests indicate some sort of inflammation but not the cause. C-Reactive Protein is often elevated.
Blood glucose within normal levels. Glucose tolerance tests show mild reactive hypo-glycaemia. I do not have diabetes.
Diets, blood tests and biopsies ruled out celiac disease.
Three colonoscopies and gastroscopies and no-one has said IBS, Crohn’s, or anything similar.
Multiple allergy tests sometimes show slight reaction to common moulds, nothing else.
Panadol and most herbal remedies make me feel very unwell.
I am a carrier for Cystic Fibrosis (dF508) but do not have CF.
I am a carrier for Hemochromatosis (C282Y) but my iron levels are ok.
Prostate is enlarged, PSA elevated, biopsies showed no cancer. I suspect that this has the same cause as other symptoms, systemic inflammation.
Urine is slightly acidic, pH 5.5. Eyes stinging constantly, tears alkaline, pH 8.5 or higher.
Current Medications: Tramadol 50mg to 150mg /day for the chronic pain. Somac 40mg/day for esophagitis from a hiatal hernia.
This is not a one-off illness, infection, trauma, etc. This is a genetic disorder. My mother experienced very similar symptoms for many years and her father had been sick for many years without finding the cause. Our 20 year old daughter, who has Cystic Fibrosis, has occasionally been experiencing similar symptoms, stinging pain in the front of the head, sore joints, general aching and overall unwell feeling, waking often. Her CF specialist says that these symptoms are not CF related.
I have been told by half a dozen trained, qualified, experienced, psychiatrists and psychologists that this is a physical illness, not depression, anxiety, stress, emotional disorder, somatoform disorders, etc..