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.

2 thoughts on “Pain

  1. Hi Rachel
    I read your story ,and Im so impressed becouse in your blog
    I can see a story of my daughter I think that you and my daughter have the same disease.She was diagnosed with MG and now drs say its not Mg but functional problem…but Im sure its not a truth at all.Her ptosis is fluctuacting ,she has double vision she has respiratory problems,generalized weakness.she has autonomic system problem like you,she has nystagmus and involuntary eyes movements(her eyes are crazy sometimes).Can I ask you what kind of ophtalmologic exams have you done ,is your double vision confirmed by hess screen test?and another problem,do you have blepharospasm ,I mean twiching eyelids and generalized muscle spasms?it's nice to meet another person with this strange disease ..MG not Mg ,maybe one day we will know the truth..
    take care ,I will read your blog with pleasure
    take care


  2. Hi Dany,
    Thank you for your kind comments about my blog. Unfortunately your daughter and I are not alone. So many people who so obviously have MG or a different variety of it are being left to suffer as we dont fit into their little tick box text book.It makes me very angry.

    Im so sorry that you haven't heard from me before as I have explained in my blog I wasn't to good.

    My ptosis is fluctuating, it got a lot better over the summer when I didn't use the computer but now it is back. I use tinted lenses to counteract the glare from the screen and that seems to help.

    Its weird she has autonomic problems like me. Have you tried the DINET forum, its great and helps you feel like you aren't alone with it all.

    The nystagmus has left me alone for a little while now, thank goodness as it used to drive me nuts. I have kept a lot of my symptoms away by just not doing anything. Before I used to fight it all the way. But paying for the consequences of that was no fun.

    I do get the blepharospasm, but not on a regular basis but it does drive me to distraction. Have you tried the neurotalk myasthenia forum. Im sure they have threads on that there. All I can do when I get it is just close my eyes for a while and rest them.

    The opthalmic exams I have had have been pretty basic – just following a pen torch. My double vision can be seen as it causes my eyes to jerk, which I can feel as well. My double vision tends to be upper right and left. Although if I am bad it will be whatever I look at. They have confirmed my double vision through that test alone.

    I used to get really weird body twitches that you couldn't see, only feel mainly in my legs. It felt like there was smething under my skin moving all the muscles. I could never work out why you couldn't see it. Its very frustrating.

    Thank you so much for commenting on my blog. Would it be ok if I asked you to leave another comment so I know that you have picked this up?

    If you have any more questions please feel free to ask.

    We battle on.


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