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 05-12-2015, 12:26 PM #1
goblue1998 goblue1998 is offline
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Join Date: Apr 2015
Posts: 100
10 yr Member
goblue1998 goblue1998 is offline
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Join Date: Apr 2015
Posts: 100
10 yr Member
Default Frustrated can't get answers - Advice

I am getting extremely frustrated that I can't get confirmed diagnosis from doctors.

I had elective foot surgery in Dec 2013 to repair broken bone that healed wrong and received a staple and screw to stabilize joint.

My foot never felt right after surgery swelled tremendously first 2 months (was non-weightbearing 8 weeks) then reduced slowly over next 2 months. Color was pink/purple while it was swollen. Foot was colder to touch first few months, big toe nail stopped growing for a few months.

My surgeon finally diagnosed me with mild RDS however sent me to pain management doctor in Oct 2014 10 mos after surgery for nerve block. Pain doc spent less than 5 minutes with me and said I don't have RDS but I am not in extreme pain.

Since then I have had 3 mos physical therapy Oct-Dec which helped in flexibility greatly.

Since I have seen additional pain mgmt doc and PA and they also agreed not RDS, seen a neurologist that said inconclusive wouldn't give a diagnosis.

Saw a second podriast how also said not RDS and then gave me 2 corisone injections which made things a whole lot worse, was trying to see if nerve got relieve if scar tissue as injected. I know have a "flare up of something" big toe is sensitive with light touch also arch of foot. His recommendation was to have staple removed. I am scared to death to have surgery if it is indeed RDS as I can live with sensations and low pain, but of course wouldn't want it worse.

Now seen 3rd podiatrist that thinks it is nerve compression wants me to get EMG test which I am also scared to get in case it would increase symptoms.

What is so odd to me is that no one can explain to me why the cortisone shot made everything worse than pre-Oct 2014. And they still say not RDS because I am not in extreme pain.

Any advice would be appreciated. I feel like after seeing 6+ doctors I can't keep shopping around but I don't want to make things worse with further tests.

I am currently on 1800 Gabapentin per day, wheening off reducing 300 per week and then adding B Complex vitamin in its place advise of 3rd Podiatrist.

THinking of asking for prescription to PT again unsure of getting EMG test.

I am in Metro Phoenix Area - Thoughts on doctors experienced with RDS or other nerve conditions.
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