Welcome Paige,
So sorry you had to find your way here, but there is great support and understanding. You are not alone. No apology is needed. Everyone is here because of some complicated mishap. I would encourage you not to give up on a fixable cause. Many cases of CRPS are caused by nerve entrapment that can be ameliorated. I know they say no surgery but that depends who you ask. If your problem is identified injury at the peroneal, find a peripheral nerve specialist to make the call if anything is be done. Ortho told me I had no options, they don't always know nerves so well. There is an interesting article by Susan Mackinnon MD et. al "Nerve re-section, crush and relocation relieve CRPS Type II: a case report" that says there are options in some cases.

In another stage of my journey I had my posterior tibial scarred down from a "minor" ortho procedure that also partially transected my calcaneal branch leaving me with a painful neuroma. Whoops. Ortho insisted my procedure had been successful LOL. In desperation I saw two plastic surgeons who did a peripheral nerve fellowhip at Washington University - one practicing in Dallas, one in Houston - both said the same thing. I had identifiable entrapment and they could do something about it. One did a "scratch-collapse"test to find the lesion exactly. 3.5 hours of microsurgery later the shooting pains and agonizing hypedermics jabbing me were gone and still are. Is it like it used to be? No, but I can sleep at night and don't whimper on the couch like a wounded animal all the time. I later developed more CRPS-y symptoms following a separate procedure to take an aggressive fibroma out of my sole where there are loads of sympathetic fibers. Still recovering from that one.

I say hang in there, don't take no for an answer till you've satisfied yourself and keep up the fight!
Sending Healing Love:hug:
Littlepaw

Hi Paige,
Never stop trying to advance. There will be good days and bad days. It will take longer than you want it to and demand patience and grit. You have these things. Sometimes our strengths are hard to find when we are panicked and in pain but they are still in there. Don't let yourself get buried in sadness and despair. Everyone visits a dark place sometimes, what counts is making sure it is only a visit. You are not a burden. This is a proverbial bump in the road and you do not yet know what you will become. It is very hard in the beginning but you will find a way. Use your training to find the people who can help you. As you know different specialists will have something different to say. Stanton-Hicks says 80% of people have improvement. I like those odds....
I am sending more healing love, :hug: Littlepaw

Don't forget medicine is a small world in many ways as far as physicians. I worked in healthcare many years. There is always a guy who knows a guy...it seems like so many of the specialists have people they trained with who have now spread around the country. Perhaps your contacts in TN can still help. If people back there find out you were in trouble and didn't reach out you know they'd scold you. PM is for sure a small bunch. I always find half the orthopedists know each other from somewhere. Don't forget plastics peripheral nerve - the orphan specialty if you can find one. Pick your current contacts brains, call in favors. Also if you are in/near a large city there may be a CRPS support group with knowledge of who is familiar with treating. Call your insurance - self-referral is often allowable and if not early CRPS is considered urgent. See if they will do anything else. In the meantime, move as much as you can, try to keep normal ROM if possible, but avoid flare. You want your brain to receive non-painful sensations if possible. To this end I spent many, many months at a pool, desensitizing my foot and loving on it before being able to walk again. Try different meds if you can, neurontin was bad for me, nortriptyline much better. It can take a few tries as you know. Most of all never give up...

Hi everyone. Thank you all for sharing and caring, I look forward to getting to know you all. I was just diagnosed on saturday after having a very light sprain last november that didn't seem to be healing right. I had gone within a day or two after the incident for x-rays, nothing broken, bad sprain. I got a shot for the swelling and some strong advil. Fast forward to Saturday I scheduled a visit to a podiatrist because of the ongoing issues. He immediately noticed the temperature difference in the feet, the swelling, and skin discoloration, as well as my distorted gate. He did some more x-rays just in case, nothing there either. He checked out my tendons ligaments, but in the end he was confident that it was RSD, and I've been on 30mg/day prednisone since then. I have another visit and possible referral for lumbar injection if the prednisone doesn't do the trick, and am thinking about possible looking for a ketamine treatment as well. I'm trying to stay optimistic but this is all really scary and hard to handle.

Welcome KeepMoving,

Sorry you have to be here! it is a great place for support. It is good you are treating symptoms early with the prednisone. I hope that helps you. FYI, coldness, color change and numbness do sometimes occur with ankle sprain - just Google "ankle sprain cold foot". This can be caused by nerve or vascular compression that has occurred because of swelling and or the injury. Swelling from injury can take a long time to resolve and nerves are persnickety little buggers that don't always handle pressure well. If you have not had a nerve conduction study or any vascular work up it could be worth pursuing. Don't wanna miss anything treatable that might be contributing! Welcome to the forum, you will make it through this.

Sending Healing Love,:hug:
Littlepaw

Needing support for 16 yr old with RSD Please!!
 

Hello friends. Please guide me...I am the Mom of a 16 year old girl just diagnosed with RSD, 3 weeks ago. I am beyond frustrated and so scared! I live in the Midwest, and so far I have mixed messages and nobody seems to know for sure what I should be doing. I have read many things (conflicting) I have called the research center in Florida, I am talking to a Neurologist that diagnosed her, but admits she knows little about the disease. My daughter injured her right hand 2 years ago playing softball, we went to 9 doctors over a 2 year period before getting to where we are now. The pain has moved from her right hand, to her elbow, to her shoulder, and now she complains of headaches, and eye pain only in her right eye, with some blurring. Her hand turns a bluish color occasionally and swells some. I just got off the phone with the Neurologists PA, the Dr. tells me that the eye pain and pain in her head are not associated with the RSD. How can this be?? It's only on the right side of her head..as all other pain is on the right side. I have read that early diagnosis and treatment is beneficial..what treatment? What should I be doing?? Please help me.. I feel so alone and scared. I want to help my child, but I don't know what to do, or who to turn to. She is currently only using a pain medication rub that seems to help the pain some. We are talking about putting her on an antidepressant for the nerve pain. What can I do to slow progression?

Hi all, new to the group. A little background severely broken right fibula and ankle back in 2000 have had 2 surgeries to repair the damage, ended up with a screw inside my right ankle to hold it in place and a plate and screws down the fibula to re-aline it. Due to a 6 month span between surgeries (stupid idiot doctor) i suffered quite a bit of nerve, tendon,and muscle damage to the outer portion of my lower right leg. Now 15 yrs later I am suffering with tremendous amounts of pain on a daily basis. After months (since November ) of going from doctor to doctor trying to get answers I'm finally told I most likely have CRPS. Yea I did the double take and the you've got to be kidding me, this is just some made up crap right?............. well needless to say I went home and did my research and whoa! Now I'm scared. So everything fits the swelling and tenderness and redish purple spots. So while on my journey to this diagnosis I also discover through a bone scan that i have a fracture in the heel of my left foot. Yes I'm devistated, I have a 19 month old lil girl that I stay home with and here I am can barely walk. I already suffer from major depression and anxiety and this really doesn't help, added to that everyone thinks I'm making all this up. All I can do is say really? Do you see my leg, ankle, and foot? Do you see how swollen they are? Do you see the red and purple patches? Do you see the tears running down my face as I try to walk? But still no one helps, they still remind me how much I need to be outside running around with my daughter, or taking her to the park. Ugh I just break down at that point. I start going to the pain clinic next week but it's my understanding that once the skin has tightened there isn't much chance of going back. Plus the doctors around here treat me like the plague due to me being obese (on a bariatric surgery waiting list) and on state assistance. Yep I've had 2 count em 2 orthopedic doctors send me walking out of their offices refusing to treat the fractured foot. Sorry if I'm sounding really sarcastic or just rude, I'm honestly not trying to be either. I can only take my meds at night so when you combine pain meds with anxiety, depression, anti-inflammatory, and migraine meds I get numb. Minus the pain that is still there. So anyone here living with CRPS and young kids. How do you cope?

I think the first thing you need to do is find a doctor who knows more about treating RSD. Generally neurologists, pain management, anesthesiologists are who people see for RSD treatment and management.

I'm guessing the antidepressant the doctor is talking about is Cymbalta. I'm not sure if it is recommended for someone her age. I do take it and have for years. It does help with the burning nerve pain for me. There are no RSD specific drugs. But many different drug combinations that people use. It is a trial and error finding what works for each person.