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Old 03-10-2017, 05:38 PM
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
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There are treatments out there worth trying...things that can help even 8 years into this...especially with newer areas of spread that may be more responsive to treatment. I was in a wheelchair for a while and it was awful...after many many months of physical therapy I was able to use a rollator (4 wheeled walker) and that was MUCH better for me. Yes...it hurt to walk...but RSD is known to get worse with immobilization...use it or lose it is very real. Using the walker allowed me to take a lot of weight off my leg...but continue to use it and keep moving. It was the difference between me being on my feet for 10-15 minutes at a time...and being on my feet for hours at a stretch. The rollator has the benefit of also having a seat with you at all time if you need it and a basket under the seat to make it easy to carry things. The 4 wheeled walker also allowed me to walk correctly...so I wasn't damaging other parts of my body like I was with crutches or a cane or hobbling around without anything.

Right now I am currently awaiting insurance approval for DRG stimulation. It is a newer procedure that is FDA approved specifically for CRPS and has (so far) been shown to be much more effective than other SCS treatments (which I honestly was dead set on never getting because of the lack of effectiveness in so many patients). I am very optimistic about this treatment...but because it is so new it has been a big pain with the insurance company. Hoping it's worth waiting on.

Medications have never been very effective for me unfortunately...but heat patches, TENS unit, Lidoderm patches, ultrasound treatments, and change in my diet have all helped some at various points.

I'm so sorry to hear all that you have been through. I'm going through a pretty rough stretch at the moment myself. I hope you are able to find something that helps you. If you feel a wheelchair will give you a better quality of life...then try it out. Mobility aids are just tools and while on the one hand we may be resistant to such an obvious representation of our disability...they can also represent freedom and better quality of life.
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