Monday 10 May 2010


Yesterday I suffered with the worst pain I have had for a very long time. I just didn't know what to do with myself. Thankfully its under control now, but yesterday felt like it was never going to end.

Occasionally I have flare ups of back pain. Yesterday it was low back pain and pain on both iliac crests. (Iliac crests are the bones of the pelvis that stick out when you lay down. Or if you are exceptionally skinny they are prominent all the time.) Both crests were tender (massive understatement) to the touch. Pain was running down both legs and my left leg was burning with my left foot feeling like it was being dunked in an ice cold bucket of water. All I could do was lay in bed as still as possible as the slightest movement had me shouting out in pain. I'm not ashamed to admit I wanted my mum!

I ended up calling the out of hours dr as I was running out of painkillers. I got codiene, which was great as I knew it would make me sleep, which would be an escape. The only thing was it lowered my blood pressure. Its was bouncing around below 85/45 and at one point went to 70/40. Not fun as when trying to get to the bathroom I thought I was going to pass out.

The pain is under control today, but Im certainly not pain free. So I shall see how it goes and then maybe speak to my GP again.

Saturday 8 May 2010

Haven't been too good recently as my blood pressure has been all over the place. Having to spend many days in bed hence the lack of posts.

I had a spinal xray recently and that has come back all clear which is good news. Im still in a bit of pain with my back , hips and pelvis but its under control.

The dr has organised a load of blood tests for lymes, thyroid, addisons etc. So I will be having those shortly.

Ive been dropped by Dr X, as theres nothing wrong with me! So its just me and Dr Y now.

Hoping to get a an appointment with a Prof in London who deals with Dysautonomia, as this covers a wide range of my weird and wonderful symptoms. I have done a few basic tests at home with my blood pressure monitor (poormans tilt table test) and my heart rate increases on standing up, over 30 beats per minute and continues to stay elevated whilst standing. My blood pressure also increases. I also have blood pooling in my legs on standing - they go purple. So something is going on!

All I can do at present is wait for the results from the blood tests and go from there.

Sorry there isn't better news.