Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 09-29-2014, 12:19 PM #4
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Nanc Nanc is offline
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Join Date: Jan 2011
Location: VA
Posts: 975
10 yr Member
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Hey Pix!

I had typed up a reply twice and my darn iPad keeps freezing up. That iOS update killed my iPad and wiped it clean, now it is running slow and crappy...UGH! Makes me so mad So, let me try again!

I tried Methadone but could not tolerate it, which is no surprise since I cannot tolerate anything. If it helps you, then who cares what anyone thinks?? It is hard enough to try to manage this pain we endure, no one can imagine it. I really think it is no one's business what you are taking, but if they continue to ask what the dr is doing and you don't want to share, then don't be specific. Just say dr is trying out different meds at the moment...leave it vague if that makes you feel better. I get it, I really do. I got those reactions from family..."I can't believe you are taking that, I hope you don't get addicted"...and so on. I would just say "if it helps my pain, even a little bit and I am not allergic to it, I am taking it!!" They have no clue how we suffer.

You are on such a low dose, I would lean more towards the increased dose of Gabapentin causing the "oatmeal" brain...but I am no dr, that is just a guess.

As far as the spinal cord stimulator goes, do your research on the unit they recommend and on the dr who would be performing the surgery. The great thing is that they always do a trial so you can test it out first. I had two of them implanted in June 2011, cervical to cover shoulders down to fingers and thoracic to cover from hips down. They were a life saver. I was to the point that I was losing the use of my hands and the SCS gave me that use back. Also helped get my range of motion back in my RSD arm (had bone spur removed from shoulder and it froze when RSD set in). They both helped cut down on the burning pain and the sensitivity. I had to have a revision on the thoracic one 5 months after implant because the leads migrated and the battery site was very irritated (so they relocated that too). They allowed me to work an additional 1 1/2 years...never would have been able to make it without them. Had some issues develop and had to have them both removed this past January. I hate that they stopped helping me because I could really use them right now!! There is a great forum on here for SCS & Pain Pumps, it was soooo helpful to me!!

Good luck to you, hope you can find some relief VERY soon!!
Nanc
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