Hi everyone,I am new to the site.
I have had a couple of ops in the last year- one major on my spine and one minor.I have had 7 strong courses of antibiotics over the last year. A few days after minor op at end of September I developed toothache in my upper left jaw. I thought maybe they had knocked my bridge when intubating. It was quite painful but I was on holiday so I gargled with hydrogen peroxide and it seemed to fade. Came back again with a vengeance so, of course, I went to the dentist. Nothing she could find but she gave me antibiotics in case it was an abcess. Again I gargled and it seemed to fade away to a level I could bear. Came back again a week or so later and seemed to be along bottom jaw line, as well as top, I was feeling ill. I was exhausted. Having terrible sweats and couldn't control my body temperature. I kept waking at night with nausea. My face hurt and the skin hurt to touch, especially around my temples, cheekbones and I couldn't touch my head/hair without it hurting
Then I woke one morning and it felt as though the jaw pain had spread to my neck and shoulders. I was in agony. The root of my tongue hurt so badly. I couldn't swallow and I couldn't chew. My shoulders felt as though they were up to my ears and I couldn't relax them. My neck was extremely sore. It felt as though it was in a rigid spasm that I couldn't relax. It was totally exhausting. My face was so sore I couldn't put on makeup
I have troubles with my cervical spine so I put it down to that but after about 5 days when it got no better and I was actually crying with the pain, I went to the doctors and saw a nurse practitioner. She took blood tests as she thought it might be PMR. They must have come back ok as nobody contacted me. I rang and they said everything was OK. My pain got no better.
I made an appointment to see a doctor. He just shrugged and said my ESR was fine and gave me amitriptyline and naproxen. I already take Gabapentin in large doses and Zapain for my back but I was in such pain that I took these and it seemed to help. However, whatever this is, is back. I didn't want to go back to the doctors as I felt they thought it was either psychological or something to do with my neck problems.
Then I started developing blisters all over my face and my eye hurt Aha, I thought, shingles! That explains everything. I rang the nurse practioner again and went in. She called a doctor and I explained all that had happened lately. He said it was unlikely to be shingles as it didn't follow a nerve pattern. He thought it was herpes simplex because I was so run down. Well, I have never had a cold sore in my life! He also thought I could have PMRGCA. I said I had had blood tests done for that. He asked the nurse for last ESR and the recent test result had been 56. (Having looked that up it seems quite high considering it was 'OK')
He took more bloods and I get my results today. Considering this has been going on for quite some time, I am worried that I have PMRGCA and no one has done anything. I am concerned because (and I had never heard of this condition before now) I could go blind and I definitely have something happening in my left eye. Like, every now and then a translucent shade goes down or sometimes up. My shoulder and neck pain is really bad again and I can pinpoint where my temple is really sore.
Say my blood ESR is low again and they do nothing?
Does this sound like PMRGCA ? The office is closed for Christmas otherwise I would have asked them