Our Stories & Introductions

Always_Believe · 01-30-2015, 08:30 PM

Quote:

Originally Posted by Littlepaw

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

Littlepaw

Thank you so much for your kind words! I am feeling so alone right now. Unsure if the CPRS direction is really the right way. My nursing background and all symptomatic indications are yes. However, I am really battling with losing the life I once held so dear and am to this day trying to advance. I'm also struggling with the burden I have become. I only hope on this journey I can afford my family some peace and myself some measure of comfort.
Thank you for such a sweet welcome!

Littlepaw · 01-30-2015, 09:21 PM

Quote:

Originally Posted by Always_Believe

Thank you so much for your kind words! I am feeling so alone right now. Unsure if the CPRS direction is really the right way. My nursing background and all symptomatic indications are yes. However, I am really battling with losing the life I once held so dear and am to this day trying to advance. I'm also struggling with the burden I have become. I only hope on this journey I can afford my family some peace and myself some measure of comfort.
Thank you for such a sweet welcome!

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,

Littlepaw

Always_Believe · 01-30-2015, 09:38 PM

Quote:

Originally Posted by 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,

Littlepaw

Oh, I wish I could utilize my training & connect with different specialists. Unfortunately, I relocated from TN to IL a few months ago and have zero connections where I am. While I'm trying to move forward with my knee/nerve injury, I've been hitting roadblocks where insurance is concerned and have to jump through hoops to be seen by a PCP, let alone get proper referrals to ortho, neuro, pain management & PT. Not even sure my insurance will cover those specialists who have enough knowledge of CRPS to even obtain proper treatment. One hobble at a time, right???

Littlepaw · 01-30-2015, 10:42 PM

Quote:

Originally Posted by Always_Believe

Oh, I wish I could utilize my training & connect with different specialists. Unfortunately, I relocated from TN to IL a few months ago and have zero connections where I am. While I'm trying to move forward with my knee/nerve injury, I've been hitting roadblocks where insurance is concerned and have to jump through hoops to be seen by a PCP, let alone get proper referrals to ortho, neuro, pain management & PT. Not even sure my insurance will cover those specialists who have enough knowledge of CRPS to even obtain proper treatment. One hobble at a time, right???

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...

keepmoving · 02-02-2015, 05:58 PM

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.

Littlepaw · 02-02-2015, 06:55 PM

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,

Littlepaw

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