Hi everyone, thought it was about time I shared my story
My journey began Easter 2024. It all started when I couldn’t open my mouth wide enough to get the spoon in while eating breakfast, I had to slurp, other meals had to be cut into small pieces. I wasn’t in any pain. The pain began usually around 3/4 am. I had shooting pains around my gums, like mild toothache, it eased after rising in the morning. I then took, what felt like an eye infection,grit in my eye. Rang my GP surgery and ordered an antibiotic for a gum and eye infection. I bathed my eye with salt and hot water and it seemed to clear up, so didn’t use eye antibiotic.
I then developed really sever pain in my hips and thighs, felt like I had run a marathon, could hardly get out of bed in the morning,eased during the day but came back in the evening. I also had neck pain and night sweats. Raised veins in my head
My antibiotic finished on the Tuesday and a dentist appointment on the Wednesday confirmed there were no dental issues. Had an appointment same day with GP who told me to get bloods done but to leave it for a week???
On the Friday evening, Good Friday, I was feeling so bad my husband took me to A&E. I had my bloods taken. Waited for six hours only to be told the blood machine had broken down and would probably be there all night. I left……..
Saturday wasn’t too bad. Woke on Easter Sunday in agony and feeling really ill. Rang the Dalriada, out of hours doctor, N Ireland doesn’t have 111. He had my blood results and told me I needed to go back to A&E as my CRP was 150. I refused. That turned out to probably be the best decision I made. He give me an appointment at the local hospital with the out of hours doctor. After a short consultation she told me she thought she knew what was wrong with me. She believed I had a condition called GCA.
She explained the condition, scary……..Told me I needed to be on steroids right away, but needed a ESR blood test. As it was Easter Sunday the lab was closed so i needed to go over to A&E, same hospital.
After another 7Hour wait I finally saw a Doctor who told me I didn’t have GCA. I told him that was great news but would he do the blood test anyhow, said he would , but didn’t. After another 3 hour wait, blood results came back. Infection markers were high but didn’t have ESR result. However told me he had spoken with someone and they had a plan. Sent me for a chest X-ray,took a urine sample.and another blood test,ESR I believed. I was sent home with a course of antibiotics and a letter to return to A&E the following week. Easter Tuesday morning feeling really bad. Rang out of hours, again. Was told by doctor that my ESR results were dangerously high and I needed to go to A&E . I told him I had an appointment with my GP the following morning, but he said I needed to start treatment today as something could happen in the next half hour. Sorry I’m nearly at the end……..
After another 6 hour wait in A&E I finally saw a doctor who started me on 60 mg of prednisolone.
Things moved pretty fast. I saw a Rheumatologist within a week, had a CT and DXA scan
All the usual med. I also take thyroxine,underactive thyroid. I must say once I started medication I felt great within 24hours. The insomnia and fatigue have been hardest to bear, but not too bad. I am now down to nine, reducing by one every four weeks. Have been on a med cruise and, thank God every thing went well, had a great time.
This site has been great. I really didn’t know how I was supposed to feel or what to expect. I think DL is an inspiration, as are all the contributors. Thank you all so much. And sorry again for the length of post.
What would you have done?
Asking for ESR & CRP numbers
Recurring UTI’s
Return of Giant Cell Arteritis 
why dont they believe us?
