My RSD/CRPS is in my leg (from knee down) from complications after fracturing my kneecap. The tingling started (and is the worst) in my foot. I have diagnosed peroneal nerve palsy that starts at my knee. I have the most trouble 'controlling' and feeling my foot when my knee i slightly bent (I say 'slightly because I cannot bend it all the way). I have noticed more lately that it feels like my foot isn't even there whether my knee is bent or not. Anyone else have this type of (non)feeling?

Hi Always,

I have read about CRPS patients having hyposthesia in at least one of the academic articles. My own problem like many of us is having too much sensation or just weird sensations. I am wondering when you say you can't feel your foot do you mean the WHOLE foot or just the dorsal foot? I can see where the top would have numbness with the peroneal nerve involvement. I find it concerning if you have lost sensation to the bottom and sides of the foot as well. I am assuming they checked the tibial and plantar nerves when you had conduction studies yes? Do you feel things are worsening or that you are having reinnervation symptoms? That could be a good thing....

Littlepaw

Like my foot isn't even there. Mostly only noticed this when I bend my knee but lately it's happening even with my leg straight. What are symptoms of reinnervation? Is that even possible after 14 months?

The possibility of reinnervation depends on the type of injury. If a transected nerve is growing towards a target it can take well over a year. But with reinnervation people will complain about odd sensations, pins and needles etc. Not no sensation at all, unless of course the nerve hasn't hit a distal target yet. Again, totally depends on the injury. Is it a feeling of the foot not being there from "within" the foot so to speak? Is your plantar sensation intact? For example, if you walk on surfaces with different textures barefoot do you pick up sensations of carpet or of grit on the hard floor, etc? Can you feel temperature differences if something warm or cool is applied to the foot? If the answer is no and this is a new symptom I would definitely look into it. Take any prior studies for comparison. I guess the big question is if signal is getting through.

My foot will often not feel like a foot. I know it is there, it is talking to me a lot about various things but it feels sometimes like a weird nervy thing I just happen to walk on. It does what I ask of it but only rarely feels normal. I am never unaware of it however. Sometimes I wish I were!
I hope you find some answers soon, Littlepaw

Hey Always,

I know you have a complicated medical picture with the patella fracture and all. It jogged my memory for something Mayo Clinic had done with an allograft cadaver patella for a woman whose patella had been destroyed. It may still be on their website. I guess my point is to aim high in your care. Mayo is not too far from you, they see all kinds of crazy things and do cutting edge treatments. I don't think they take Medicaid. However, their charity program says it gives a whopping 100% write off of treatment for folks under the 200% poverty limit and that the patient's care is their priority. I'm sure their foundation is loaded and they love the press of providing life changing treatment and interventions. Sometimes we have to travel to get the best care. Yes it's a pain setting things up and making the trip but often the level needed is not locally available. I am still driving three hours every 2-3 months to see my doctors and it's worth every minute of the road. If I were that close to Mayo I'd make every effort to see every specialty they have. just a thought...
Littlepaw

Sometimes it feels as if they aren't my legs

Thankfully my patella fracture was a closed, nondisplaced fracture so that healed well..the treatment caused the peropneal nerve palsy, which then contributed to the RSD.

Speaking of...I am so lost. I've messaged with Lit Love about my home situation (which has gotten worse) and I am battling with SSDI...that is a huge thing for me. I really really REALLY want to get back to work. While no doctor has given me the "okay" to work, the records don't reflect anything severe enough for me to get SSDI. Let's top that off with the fact that I am in too much pain to be functional and no doctor will provide adequate pain relief in order to be functional, let alone any therapy. Ready to give up...

Exactly! Like it's somehow not connected..

Hey AB,

I am sorry to hear things have gotten worse. UGH! SSDI is difficult in that it seems like if you have one working limb they think that's adequate under the guidelines. I understand wanting to get back to work and keep looking at PRN type things myself, but I am not physically ready yet. However, I have noticed in looking that there are some telecommute ops for Health Coaching, probably part of the new healthcare regs. Also we used to always have a need for PRN chart review, QA, utilization review, etc. Any possibility of doing some part-time admin stuff that would keep you off your foot?

Littlepaw

I guess if it was as simple as being off my foot, I would find something. I still have pain in my knee, all the way down my leg and my foot. A sitting job would be great - if I could sit longer than 2 hours at a time without my leg swelling and pain getting worse. I really could use some type of healthcare job thing I could do at home. The only thing I found, I have to have an old school land line and pays $0.25/minute. Knowing my luck, I will carve out 8 hours and get one 10 minute phone call. Probably more options when I get my RN, but my doctor won't sign the physical form I need to take my final clinical exam to get my degree to be able to take state boards.

I'm just really feeling like I am totally on my own in all aspects here. I can't function enough to unpack my clothes, how can I function well enough to work? It took me 4 days to do 6 loads of laundry and that was sitting down in between each load!

I'm thinking I will call my PCP office on Monday but I know no one is going to order any therapy until I get that MRI...good luck getting medicaid to approve that quickly...