CRPS or not? Can't get a diagnosis. Thoughts?
 

Hello All,

I have been following for a while and participating some as I am "this close" to a CRPS diagnosis. I am like so many of you, baffling my doctors. I am very grateful for light shed on my symptoms. I know CRPS varies greatly.

The jist of my complicated story is nerve injury during minor ortho procedure to left ankle, horrible pain and shooting nerve symptoms with some dysautonomia, then 9 months later 3.5 hour revision surgery by plastic surgeon removed neuroma and scarring- much relief and improvement of pain, temp and color better, then sadly needed another procedure 6 months ago for aggressive mass in sole of foot. Since then my foot doesn't know what to do with itself. Nerves feel somewhat scarred down again.

My entire foot tends to discolor, mottle and have a hard time maintaining it's temperature if ambient air is over 75 or under 45. I live in Texas and when I walked this past Fall (still 85 here) my foot would sting and turn red all over, feel hot to the touch. Foot is colder than the other at most other times. Symptoms completely resolve with elevation and my foot looks beautifully normal in the morning after being flat all night. If I walk short periods or ride the bike it also looks normal so long as it's not too hot or cold out. Blood flow is obviously impacted. Dependent position seems to really bring things on. The areas around my incisions begin to sting when my foot is down for even short periods of time, though standing is worse than sitting. I have had itchy, burning scars in the past but not in a limb I have to bear weight on and leave down. I still have some symptoms of traction neuritis and general nerve irritation and foot pain. Sometimes tingling goes further up the nerve tract but redness, etc. does not spread beyond the foot.

The dysautonomia seems to be the worst. I manage it and pain by limiting my foot's "down" time. I am tired of having a foot that looks and feels weird. My activities are limited. I do still ride my bike, do elliptical and swim, just for brief periods. I can touch my foot at all times and make a point to to massage, touch and try to treat it normally. Sheets never bother me. I have never had swelling or sweating difference. My pain would be much worse if I left my foot down all the time and walked a lot - the two things I most want to do.

I am taking nortryptiline 25 mg QHS, neurotin in the past killed my mood. I see my acupuncturist, a neurologist and take great care of myself. Neurology thinks CRPS but won't call it that. Two PM doctors didn't think it was CRPS since symptoms resolve with elevation. I have had some improvement since surgery but the autonomic symptoms just won't go away. If this is mild CRPS I'd like to get on with some kind of treatment. PM both offered to do a sympathetic block but I am leary of that since symptoms aren't florid. I know dysautomia can take time to resolve in lower extremity surgeries but usually does so after several weeks. Thoughts anyone? I want my life back and my husband and son do too!

Thanks and Healing Love to everyone,
Littlepaw

According to the Budapest Criteria you need 3 of the 4 main symptoms and you will have some of the others.

*edit* full copy/paste w/ no link & copyright © 2014 American RSDHope

Thanks,

I do have the color and temperature change and the mottling which starts almost immediately when I put my foot down. The burning/stinging is NOT constant by any stretch and can usually be controlled by position. My foot feels decidedly weird most the time but is not horribly over sensitive. There is some atrophy but movement is okay. I have some parasthesia and numbness, some in the expected tibial nerve track and some in the saphenous which was not operated on but has communicating branches. Hard to know what is bad post-op freaking from all that's been done to it or what might be RSD. the dragging on and on aspect without clear answers is tough.
I seem to be on the borderlands which has made this difficult as far as a treatment plan. Neurology says I will get better with time, but I fear the possibility of a mild case not being diagnosed in time and then treatment options are limited. I am definitely grateful it's not worse at this time and appreciate input.
Littlepaw

Hi Littlepaw,
I'm so sorry for your reasons for being here but glad you found us.
Don't believe the crap about elevation improves the situation so it can't be CRPS.
I have full body CRPS and my feet respond to elevation too. This is the first time I ever heard of that. The burning stings seem to lighten when I elevate and my neurologist tells me that it's normal in my case.
Although I'm in a wheelchair most of the time I still go through the stinging and discoloration with cold burning.
I just had to chime in because I get worked up when I hear of a misdiagnose or something that I know is not right.
Forgive me for being so upfront. Maybe I should just be quiet...

Russell,

Thanks for being up front and please don't be quiet! This is just the kind of thing I need to hear about. The stinging burning is miserable when it happens, like I have brushed my foot through a field of nettles. I am thankful it's alleviated by elevation but having a foot you can't put down much is certainly a hindrance to most activities. I went to the second PM doctor after the first kind of threw up his hands. The second was supposed to be a specialist in CRPS but it seems like more of an interest and less of a long experience record for him. Neuro listened to me, said it acts like CRPS but gave me a diagnosis of "neuritis" and didn't say "Go Girl - do something while there's time!" Granted, I do my exercises and desensitize and every other thing I can come up with already but sitting back wondering if you should do blocks or other interventions (I am now 6 months out) will drive you nuts. I don't want to walk past an open window only to find closed doors down the way....

Be well and thanks for your comments. It is my hope that we all have healing and restoration.
Littlepaw

[quoted portion removed due to edit re copyright © 2014 American RSDHope]

Thank you so much for the additional info! I do appreciate it and the time you took. There are some nuances in here not usually listed. I don't have the hot poker feeling but a feeling of pressure and bull nettles that gets me off my foot in about 30 seconds flat. Definitely a challenge to daily life. My Vascular work up was negative. I think I might be with you guys a while...

Has the doc(s) changed their mind and feel that you do have CRPS? Or are they just trying to help you because of your pain?

CRPS or Not
 

I see neurology again on Feb. 6th. He seemed to think CRPS but was quick to say CRPS is a spectrum and many people can improve over time. This doc spent a lot of time at Mayo so I'm sure has seen a bunch of everything. I think in light of the ambiguity he went with "neuritis" which I guess is a fair description for nerves that can't figure out what the heck to do. Pain mgmt seemed stumpted and wanted to do a lumbar sympathetic block to see if my pain was sympathetically maintained before making a diagnosis. As if that's a sure fire way. So much controversy. My pain is better on nortriptyline and I'd like to avoid anything remotely invasive. I guess I'll have to wait and see...so not my strong point.:winky:

Littlepaw

Your symptoms mirror mine BEFORE i got my first local nerve block. That is, before the block, i could control the pain through elevation and walking caused discomfort. Have you had one done, they seem to be a common treatment for a host of neurological problems.

That's trippy! I wish I COULD get a local nerve block. you seem to have done well with it. Because I have known nerve injury and had a repair my surgeon and the anesthesiologists at my last procedures insisted on using a general. There is increased risk. I don't know if that applies to a single injection or only to longer term infiltration. It sounded like a forever thing. I am considering oral sympathetic blockade as an alternative...will post about that soon.

Thanks, Littlepaw

Well, I have joined the ranks. Saw neuro today and he has no doubt that I have CRPS. Came right out without my even asking. I believe he's accurate. I think I have been in hopeful denial but I guess once you add painful burning stings + color and temperature change over months and months post-op what's that spell? He reiterated that this is a spectrum and that a lot of people get better with time. Was against any remotely invasive/aggressive treatment, says often people do that and they get worse. I think for me not getting a lumbar block was possibly best since I have had a degree of improvement from the beginning. I have probably read too many people write that they had spread afterwards. I might consider an oral sympathetic blocker like Phenoxybenzamine. For the time being I am told I am doing all the right things, exercising and increasing activity as able. Now if I could just keep my foot down...

Poop, at least I'm among family..:grouphug:
Littlepaw

I suggest you read the "The Outcome of Complex Regional Pain Syndrome Type 1: A Systematic Review". Of everything I have read, it was far and away the most informative piece on the subject.

It is comprehensive but excludes patients with nerve injuries, so I'm not sure how applicable that info will be for Littlepaw.

Hi! I, too, am looking for a diagnosis and your description here is exactly what I am going through right now. I'm four months post-op (left foot) and scared to death that I'm not doing enough to work on healing. I would love to chat with you! I live about 40 minutes from Austin and really want to go see your doctor. I've seen about five doctors that throw their hands up! I'm new to this site, so I don't know if there is private messaging, or how to give you my contact info. Let me know! THANK YOU!

Howdy and Welcome fellow Texan!

I am so sorry to hear about your foot. Getting a diagnosis can be very frustrating. Make sure they have done all the appropriate rule out and re-check for your surgery. 4 months out is not very long depending on your procedure and the normal swelling from foot surgery can go on for quite a long time. Bunion surgeries are commonly reported to take a year. My own experience is that pretty much any swelling in my foot aggravates the nerves. That aspect may improve as you get further out from surgery. Since you are early into this, I think there is a lot of room for healing and improvement. As you are here in sunny Texas and pools are easy to access get in the water to do PT and walk if you can. Using your limb gently and without causing flare is key to getting better and avoiding loss of function. The water will help with swelling as well.

I have seen great doctors in Houston but my PM is fortunately in Austin at Capitol Pain.

I'm not sure how soon you can send a PM since you are new. The FAQ may say. Feel free to send me a message anytime.

You've have landed in a soft place at least and will find this a great place for sharing and support. I hope you find relief and healing soon.

:hug:

Just keep Posting on the Forums and the functions that allow you to PM and utilise the site fully will become unlocked. The restrictions are there to protect us all from spammers and the like.

Dave.

Cool to see your "origination" resurrected here on Neurotalk LP. :) Wow ... Not only are we lucky (blessed) to have you here, but you've come a long way recovery-wise!

My husband has CRPS from a bicep tendon repair surgery it has spread from right arm to left arm to both feet and legs up to the knees over the past 2.5 years. We did not have the option of the injections in a timely manner. I believe that it is important to get aggressive with the treatment right away the longer you wait the more you chances lessen for some type of relief. I have studied this disease for years if there is the slightest chance you might have it get after the ganglion injections. It is a miserable disease and has totally disabled him. His was a work comp injury so any type of treatment took for ever to have approved. we have been through injections, many many medications and a spinal chord stimulator. I wish you the most of luck. I believe aggressive action if you can even find a physician that understands the disease

LittlePaw, it seems like CRPS to me. My leg responds to elevation too, but as soon as I get up and bear weight, the pain/swelling and burning start immediately. I was diagnosed almost six years ago. You definitely have key symptoms of CRPS. The blocks did wonders for me in the beginning with my right arm and hand, but now I don't respond to them. Only my leg responds (CRPS spread in 2014 due to knee surgery), and I'm hoping the ketamine helps too.

Wow, it is really interesting to see this again!

Wallc1 - I was afraid of blocks but took gabapentin and 2 rounds of steroids initially. Then nortriptyline, lots of rehab work, a pain therapist and many local injections to reduce scarring in my surgical field. Ketamine has helped a lot too. Wow, that actually is quite bit of treatment....

Red - I'm kind of shocked looking back at why it was hard to get diagnosed. My foot turned bright red when down and stung like Hell. I think elevation helps a lot of people and have read that CRPS is worse in dependent position. I was actually asking doctors straight out if they thought I had it...


Visioniv - thanks so much for the warm fuzzies! I enjoy being a part of the forum and I HAVE made a lot of progress. Sooo grateful to everyone here for the camaraderie and support. :)

Looking back I think I really tried to minimize how much pain I was having. Sometimes I think I didn't realize till it lessened. I could barely put my foot down, make dinner or stand the car. I was terribly depressed when I joined and had just started therapy with EMDR and hypnosis. That woman was a life saver for me. I had just finished my second round of radiation to my foot which was really the only option with that growth. My docs were afraid it would infiltrate tendon and bone. Thankfully, it shrunk way down or I wouldn't be walking. Between the fear and the pain no wonder I was depressed!

I really am soooo much better. Still discoloring and still with some pain but doing everything that needs to be done day to day, traveling a bit, staying in shape and most importantly having some fun and loving life again! :D