I have been unwell since August 2012 and I'm still awaiting diagnosis. I am 24 and have never had any of the symptoms listed below previously, I have only ever been unwell with glandular fever. I would really appreciate your insight.
It started with nausea, dizziness, diarrhoea, bloating, and fatigue in August, and just generally not feeling very well or myself at all. These symptoms continued for a couple of weeks, before going on to develop heartburn, indigestion, reflux and a severe pain in the lower right of my abdomen - just above my hip. The nausea turned into actual vomiting, I was exhausted, and the pain in my right side would not go away with painkillers (paracetamol, ibuprofen, codeine). I was also getting fever, severe headaches, and the diarrhoea I was passing was an unpleasant orange colour with oily mucus. The pain constant and not relieved by going to the toilet.
By October I had had several trips to A+E with the pain and a stay in hospital. I had a CT scan during this stay in hospital and apparently it had not shown much at all, apart from constipation, weirdly. I was sent home with not much information at all.
In November the specialist I saw investigated Coeliac disease in with a blood test and a gastroscopy - these tests came back negative. Although, I have to say, I have seen improvement in my symptoms when not eating wheat/gluten. The specialist also said Crohns is a possibility, although this has not been followed up fully yet. I have had one calprotectin test and this came back positive, which I believe points to inflammation in the digestive tract.
My GP is treating my symptoms as IBS until I see the specialist again before February. I am also continuing with a wheat/gluten free diet. I have been given Mebeverine to take as well as peppermint oil. The nausea, indigestion and reflux has improved, but not disappeared completely. The pain is still as it was, headaches continue, eyes even ache and are swollen and bloodshot, and I am extremely tired, which is not really like me. I am always very busy with work usually and am now having to work reduced hours, with pretty much no life outside of work as I just do not have the energy.
The pain is bad and the area has always been tender to touch in the lower right of my abdomen since August. I can feel the pain from below my ribs on my right hand-side to the top of my thigh sometimes as well, almost likes it's radiating. When it gets very bad, I feel like I might pass out and get hot and shaky.
Alongside this, I now have three lumps which have gradually grown over the last couple of months (which I believe are swollen glands, which would suggest this is something to do with my immune system?). Two lumps are on my neck and another is at the very top of my inner thigh. They are not painful, but feel tender and are hard. I can feel the glands at the back of my knees and under my arms - my arms and legs ache and I feel so weak.
I'm not sure if this has any relevance either, but my periods since this all began have been every 7 weeks and I have had spotting, which I have never had before. The symptoms are worse during a period.
My mother has Rheumatoid Arthritis and Sjogrens Syndrome. I have a cousin with Crohns and a nephew with Lupus.