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I'm so frustrated and in so much pain I don't know what to do anymore. Started with CRPS in my left arm after a fall. Shortly after I ran into a sliding glass door. I was out of work with uncontrolled headaches that lasted for almost 2 months. The pain was so basically and I had no answers, I actually thought of the S word. 2 months later I had my first case of viral meningitis. This all started in 2011. Since then, my CRPS is still in my left arm, now my left leg, my skull, left side of my face, eyes and nose. I just left the hospital with my third case of viral meningitis so I'm now off the list for the electric stem and they just told me Friday I can't have anymore needles, so that means no more blocks. My vision seems to be getting worse, yet I can't wear contact lens because they feel like boulders in my eyes and I actually become dioriented. I've searched for the lightest frames but they feel like steel crushing my broken nose. Uuuuggghh, anyone else out there with similar issues? If so, I'd love to hear any options that might help me back to a normal life. God Bless.

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  • Posted

    Hi, you sound like you have really had a very tough time, very sorry to hear it.  All credit to you for coping as you have.  I have crps and also suffered vision loss, they think my body had enough to cope with and 'gave up' with my vision!  It has improved but i do have times when i just cant see properly, today being one of those days.  My fantastic mum bought me a pair of 'Silhouette' glasses (i too could not stand any other glasses, honestly they felt exactly as you heavy!) but this brand are very good, light weight, rimless, i am currently typing with them on and have been wearing them for a few hours now, still comfy!  Might be worth a try, not cheap but ...

    Good luck and i wish you all the best xx

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    • Posted

      Thanks Sara, I just wanted to hear I wasn't alone with that part of my CRPS.  The face , head, yes and nose really are pretty tough to deal with.  I'm excited about my appointment to Stanford coming up in March so perhaps he will have something insightful to,say..  I'm very excited to,see what can be done since I'm no longer a candidate for the electric stem or ganglion blocks.  Fingers crossed the doc will have some good options.
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    • Posted

      I wish you all the best for your appointment.  Sometimes i think we just live life pinning all our hopes from one appointment to the next!  I honestly hope they can offer you support and help. 

      You take care of you x

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  • Posted

    Hi Debbie,

    I have had similar issues with this. It would hit the left side of my face and after being bounced around and having it confirmed as a CRPS spread, a nuerologist believed it to be Trigeminal Neuralgia. Whatever it hurts! We tried every med under the sun and nothing helped. I found soft food, nothing hot of cold (because it seems to trigger it) and the med Keppra finally helped. I hope you fnd something that works for you. Take care ((Gentle Hugs))

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