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.

CRPS is an inherently difficult diagnosis since it is clinical. I have also run the gamut of some doctors think yes, some think no and for the same reason as you. I have pain, it impacts my life but it is not "extreme". I am careful. Now if I just went on ahead and acted like a normal person doing all the things I used to do who knows? I am too afraid to find out.

It has been explained to me that CRPS is a spectrum and often doctors only think of the florid cases with ballooned up red and purple limbs that no one can touch. It is possible to have a more limited case. I have read that some cases, 7% according to TREND Consortium, have no pain only autonomic disturbance so I guess it really is possible to be on the mild end of the spectrum.

I would encourage you to get a Nerve Conduction Study. That is done with little electrodes and mild shocks that I did not find uncomfortable. They move to EMG only if NCS reading is really bad, ie: not getting anything. It is good information to have and may help determine treatment. On getting your staple out...if they really think that is the culprit it could help but yes of course it is a risk. May depend on how hard it is to get to. Start with NCS and go from there.

Sorry I didn't have more to offer. CRPS or not it still sucks when your foot hurts. I hope you find relief soon.

Sending Healing Love, Littlepaw :hug:

I had knee surgery as a child and experienced a cold foot, some discoloration and atrophy, and more knee pain than usual. Pt made things worse when the therapist forced my knee and tore some of my internal stitches, so it's hard to know how much that contributed. After undergoing a nerve conduction study, I was told I could take meds or have spinal surgery. I decided to live with the issues and gave up some athletic activities that were now impossible--mostly running. I swam 6 months out of the year and road horses. It tool 10 years for the pain to decrease substantially, to the point where I could hike. The other issues have never improved.

I developed RSD/CRPS in my late 20's in my dominant arm after three surgeries. While both injuries shared some issues, the severe burning pain was not something that could be ignored. Nor any of the other many random issues that have come and gone over the years like vertigo, or muscle spasms, or spread, etc.

Do whatever you can to get symptoms under control. Taking Vitamin C, swimming in warm water, using Epsom salt lotion, go to pt, all might help to various degrees, but I would avoid "invasive" procedures if at all possible. A needle into the effected area should probably be avoided. If it can't be, then have Lidocaine patches on hand and apply immediately.