Ankle injury- RSD/CRPS diagnosis

L

Lyndsi lou

PEB Forum Regular Member
Registered Member
So I am not finding my diagnosis ANYWHERE... except out of my doctors mouth.. lol.. I had ankle reconstruction surgery beginning of last year, due to an injury I got while deployed.
After my surgery I got worse, and ultimately got a diagnosis of CRPS (Complex Regional Pain Syndrom) or known as RSD (Reflex Sympatheic Dystrophy). All those words mean is I am constantly in burning pain, cant walk correctly, have swelling, discoloration, and a big decrease in ROM. This diagnosis is listed along with another separate diagnosis, as not meeting retention standards.

Anyone ever seen this condition on an MEB, or know where I can look for information? My packet is getting sent up to Lewis this week, and I am really just trying to get an idea of what to expect.
 
I am in the process of being diagnosed with this same issue and currently has moved all the way up to my knee. Let me know what information you find please.
 
Mel2007 said:
I am in the process of being diagnosed with this same issue and currently has moved all the way up to my knee. Let me know what information you find please.
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I was found unfit for duty because of this condition. Mine also goes up to my knee, and i am already having mirroring problems in my other ankle. What caused your RSD? from what I told, that makes a difference.
I should hear more back from my MEB in the coming weeks- and will come back here and post again so that others have something to go off of... Cause I am still having issues finding it anywhere online!
 
I ruptured my Achilles tendon back in December. I had my surgery and the pain seemed to worsen. And it was just my ankle and foot that was burning and had the numbing pain but now it's up to my knee. I'm still seeking treatment so they haven't processed me for an MEB yet that I'm aware of.
 
Mine was a surgery too, and I was told that helps the case for an MEB.
If an MEB is what you are wanting, I have been told that you can request it as soon as you have the diagnosis, since it is not curable, only treatable.

What treatments have you had so far? Anything work?
I had done physical therapy for 16 months, needling, 3 nerve blocks, a spinal stimulator implant, pain creams, meds- none has seemed to work for me.
 
I've done all of those except for the nerve blocks and spinal stimulator. They are sending me to a base a few hours away for my next alternative and I'm guessing that's what it's going to be. Did it help any with the pain?
 
the nerve blocks did me no good...It would reach down my thigh, but never hit my ankle with relief. Maybe it will work better on you?
As for the stimulator- Im not a good one to ask about that one...lol... my experience with it was HORRIBLE... it slipped out of my vertebrae, and was causing extreme pain... so they ended up removing mine.

Like i said tho- hopefully you have some better luck! Cause i know your pain!!
 
That sounds horrible!!! I am due to go back on the 29th so I will let you know what I hear on here.
 
Hi just had my appointment with neurology and they perscribed me neurontin. Not sure how I feel while taking them. Did you have the same issue? They referred me to pain management here for some other options but it feels like I'm running around in circles.
 
Mel2007 said:
Hi just had my appointment with neurology and they perscribed me neurontin. Not sure how I feel while taking them. Did you have the same issue? They referred me to pain management here for some other options but it feels like I'm running around in circles.
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Keep in mind there is another alternative to pain management.....it's called Physiatry. I would look into finding a "real" and good one. Pain management and Physiatry are both limited by our medical advances. However, the benefit to Physiatry is they typically incorporate physical therapy, occupational therapy, chiropractic care, pain psychology, and traditional pain management. It's more of an integrative approach.
 
Mel2007 said:
Hi just had my appointment with neurology and they perscribed me neurontin. Not sure how I feel while taking them. Did you have the same issue? They referred me to pain management here for some other options but it feels like I'm running around in circles.
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I am on neurotin, and its really the only thing that I have found that helps... it might not seem like it now, but they may just have to tweak the dose for you. Stick with the neurotin awhile, let them play with the dose and everything, before you give up on it. What dose are you on? I dont have any side effects from this medication, and i know a few other people on it, and they dont either.
Pain management was the last option for me... I tried everything else first. Physical therapy and 'needling' are what helped me the most. Pain management was where they put in the spinal cord simulators, and i had alot of issues with them. I would just use caution with the pain management doctor.. not saying not to go, just saying to research everything they want to do, BEFORE they do it. I found a ton of information, after my surgeries, that made me wish I never did them.
Pain management was the doctor who signed off on my MEB, and decided that it HAD to happen. He was a good doctor, and had alot of knowledge on RSD/CRPS....so I would totally recommend that you see them, and keep an open mind, but DO YOUR OWN RESEARCH TOO!!!
 
Ok thanks so much. And I'm just on 300mg three times a day and the neurologist has me adding higher dosages on a schedule. I guess I just need to get use to the medicine and hopefully it will relieve some of the pain I'm having. My PCM is updating my permanent profile so it is documented besides just my achilles surgery/pain. The neurologist is the one that referred me to pain management but I will see what kind of options they can offer me. I just got back in physical therapy because I am losing a lot of mobility in my foot and leg. Ill be sure to do some research! Thanks again!
 
Mel2007 said:
Ok thanks so much. And I'm just on 300mg three times a day and the neurologist has me adding higher dosages on a schedule. I guess I just need to get use to the medicine and hopefully it will relieve some of the pain I'm having. My PCM is updating my permanent profile so it is documented besides just my achilles surgery/pain. The neurologist is the one that referred me to pain management but I will see what kind of options they can offer me. I just got back in physical therapy because I am losing a lot of mobility in my foot and leg. Ill be sure to do some research! Thanks again!
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Thats the dose I started at, and now im at 900mg 3 times a day- but that has been gradually increased over the last year. Good to hear they put you on it tho, cause it does help! Just give it some time.. It wont get rid of all the pain, especially the sharp or sudden pains, but alot of my burning is gone. Lemme know what pain management says for you. Wondering if they will offer anything different. Im thinking of going back and seeing if they have more options for me. Physical therapy didnt help with my pain, but it definitely helped me keep ROM, and get a little back too! I would be going still, but had alot of other medical issues come up. Good luck!
 
When you got your permanent profile did they put CRPS/RSD for your condition? I am meeting with my PCM on Wednesday to get mine updated. All that is on my profile now is just for my right achilles...so I'm wondering if both conditions will be listed so if they choose to Medboard me it will have both issues on the profile.
 
Yeah you want them both listed on the profile. The first one they gave me that got the MEB started said 'CRPS post op R ankle w/arthritis and plantar fasciitis'
 
Ok because my neurologist told me to go to my PCM to update my profile since I had to drive 4 hours to see him. Even my PCM is 2 1/2 hours away since I'm in a remote area so everything is just very difficult so I'm just trying to find out everything that I need to do Wednesday and be one step ahead when the MEB starts. Thanks for the info! Its hard to find people that have the same condition. Noone really understands the pain especially my unit.
 
Yeah I would get everything to do with that ankle on the one profile. And talk to your PCM about the MEB. I was told by the OIC of the clinic, and the hospital commander here, that RSD means you automatically can request a MEB, without a certain wait time or anything, because it is only treatable, and not curable.

And i understand- believe me, its hard to find anyone, even doctors that get and understand RSD, let alone people in units. I am in a medical unit, and they are still clueless. good luck!
 
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