On Sunday I began taking Neurontin 3x a day! I am hoping to notice an improvement soon, as the burning is getting worse. I tried nerve cream- Neuragen Gel. That was a HUGE mistake. It left me with intense burning/stinging on top of my already burning leg!
I also got a new bed-Sleep to Live (200 series-tan). They use a diagnostic scan to determine my pressure points and it establishes the ideal alignment for my body. The scan determined that my ideal bed would be in the "tan" series. "Tan" is considered to be the softest, and the scan was right! It was heavenly. Unfortunately due to my excessive research, I read several reviews that told me to go up one level in firmness (to green). At the last minute I switched from "tan" to "green." The bed was delivered on Saturday and after 2 days I determined that I really wanted the bed to be softer. I got my 2nd new bed today and so far it's amazing! (click here for more information)
I was discharged from therapy last week. Technically I am not ready to be discharged, however because Cam cannot touch my leg due to my CRPS, there is no point in continuing with "formal" PT (insurance reasons). I still go 3x a week for "supervised exercise." I do the exact same therapy exercises as I did before, the only difference is that I don't need to schedule appointments..I can just show up! Unfortunately we found out today that I haven't been approved for the last 2.5 months of PT (another issue I have to work out). They covered me for 8 weeks and then apparently cut me off! 6-8 weeks is the "standard" therapy protocol for a MPFL reconstruction..but with EDS there is no such thing as "standard." I still didn't have quad function (at all) at 8 weeks post-op..and I am still seriously lacking in that area! Hopefully we are able to sort this out soon.
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ReplyDeleteJill:
ReplyDeleteThank you for sharing your story. Based on your blog you are in and experiencing a challenging and difficult battle. We are so glad that our bed has been able to provide you with comfort and relief. We are sending positive thoughts and energy your way. We are available should you need to contact us please at 1-800-800-1353.
Sleep To Live Support Services
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