Anyone have this?
 

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 :hug:

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

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

You may qualify for jobs that give first priority to disabled applicants--including potential government jobs that are answering calls from home. The best place to start would be with a Voc Rehab Agency. If they decide you are too disabled to perform any work, than you have documentation for SS. If you need additional testing or training, they will provide it for you. Either way, it should be helpful.

You should explain to your PCP that while you understand the need for introducing one medicine at a time, you are unable to work even part time at your current pain levels. Starting a journal with notations of how much time you're spending in and out of bed, or on the sofa with your leg elevated, would be very important. What activities (and how long are you doing them) are causing swelling and escalations of pain? This may be helpful to provide SS with info about your Activities of Daily Living as well, at some point. Your doc can then hopefully prescribe meds that will help, or at least refer you on to someone that will. If you are not taking any opiates, I would suggest starting with low dose naltroxone first. Perhaps bring a print out about it to your next appointment.

Neither you, your doc, nor SS, really can guess how you'll react to treatment and/or meds. You might not even have found the best doc for you yet. While it's unfortunate that the SSDI process can be long and complicated, it is just the reality.

It's a really good idea to encourage your healthy friends and family to research and invest in Long Term Disability Insurance, to help with exactly these types of problems. (Those that live in CA, HI, RI, NY and NJ at least have short term disability provided by the state available in many scenarios.)

Having a Functional Capacity Evaluation, which your doc can then use to fill out RFC forms with, or a questionnaire prepared by your attorney or non attorney rep, will likely cover much of what you need, so long as you're pursuing aggressive treatment and going to your doc/s at least once a month. It also, just takes time to generate the type of records SS expects.

If it turns out you will need a cane or walker long term, you might just qualify for SSDI with a Listed Impairment--which could mean a faster approval.

There are certainly Medicaid patients receiving pain management care. Another option that docs might be more willing to prescribe than opiates is methadone. There are lots and lots of different options! Most of us are still trying new meds and treatment options even if we've had RSD/CRPS for a decade or decades!

The odds of you being approved at the Reconsideration level are very slight. The point is to keep the claim active and not lose backpay while going about documenting your case. It could be 18 months before you have your ALJ hearing. If you have enough evidence prior to the hearing, you can request an On the Record decision at that time.

You really don't even need to hire legal representation at this point. Just follow through with filing the Reconsideration within 60 days. You can decide to drop it later if you find a job or want to start a new application.

The bottom of both of my feet almost always tingle. But a painful tingle...

I hear ya on the crutches.
I've got my wheelchair and Gabapentin but the pain becomes unbearable at times...

:hug::hug: