So, It's been over a year now since my surgery & the beginning of
the CRPS/RSD. In the beginning my P.T. (she actually knows a little about RSD) pretty much told me that frequent visits were important because most progress would be in the first 3-6 months. That has pretty much proved true.
Anymore it's all I can do to just keep what little I have gained.

I'm still left with limited motion of my hand & wrist. I've been wondering if it could be a separate issue from the CRPS pain.
Very long story short......The Social Security Dr. I had to see said, "Oh, they really did a number on you Huh". He said he thought a new surgery would fix it,
and I now had only a "touch" of CRPS/RSD, because the swelling is down.

My original ortho. hand surgeon does not think so and will not touch it again. My P.M. does not think so, but leaves that to ortho. Dr.

I've tried to get 2nd opinion & have gotten referrals but can't get another
ortho. Dr. to see me when they find out I've already had surgery by another Dr. in the state of AZ.

I can feel the CRPS spreading to my foot now, but so far there is no dysfunction. I can still walk thru the pain, also very little swelling, just red & blotchy.

Any thoughts on this?

Wow.. what a moron "touch of CRPS/RSD" seriously!! grrrrr that is more than maddening.

First I would ask the SS Dr. (who I am sure is biased and not nearly qualified to make such statements) exactly what type of surgery or correction he/she is suggesting to fix your it. Especially based on one visit (assuming you only had one).

Referrals - are you on a PPO plan? If you are on a PPO plan you don't need a referral to seek out the opinion of another specialist.

Do your doctors think you have nerve damage as a result of your surgery? That would be a reason why another doctor would be hesitant to treat you. Most knowledgeable doctors would not suggest re-operating on the original CRPS site especially if you have CRPS II where there is identifiable nerve damage as this will only worsen your symptoms and cause spread. Unless of course the surgery is to stabilize your bone structure (but even then surgery may cause CRPS to worsen) or repair supportive soft tissue ie., tendons, cartilage.

My experience with spread (and I know it is different with everyone) is that only some of the symptoms were present and as time has gone on more and more appeared but slightly less painful than the original CRPS site. Different in that with the original site all the symptoms started at once and have not gone away or reduced in intensity since onset and instead have gotten worse. The spread areas seem to progress (for me) at a much slower pace.

I truly hope you can get another ortho to look at you - have you considered going out of state?

Tessa

AZ-Di, I couldn't agree more with Tessa. IMO she is totally on point and (at least for me) the way in which she is describing spread; mine has been identical. I have type II with identified nerve damage in my spine. I have what they call "Cold" RSD/CRPS. I only have swelling from time to time. The swelling since surgery WAY back in 2004 has developed in my limbs in the last year or so.

So sorry that you are struggling with all this, and wish I had something useful to add. I hope you can get some help soon!

I agree with what the others said. There are criteria for diagnosis , and someone more well versed than I will chime in and explain it. But, a small amount of swelling is not " a touch of CRPS. " What a ridiculous thing to say. My surgeon had the gall to tell me "you really are not that bad. I've seen worse". OH and that's helpful,,,,,,, not. Its frightening how people try to cover up their ignorance by diminishing the patient.

Hi Lottie, My NP said the same thing a few days ago. I was so offended. It is an ignorant thing to say "That though I'm bad, they have seen worse". That doesn't make me feel any better. I still hurt constantly from rsd and fibro and it stinks. I'm sorry you had the same thing happen to you. It's just not right.

Hi AzDi,

Yep, I agree with what everyone is saying. It's not you, it's them. Saying you have a touch of CRPS is like saying you have a touch of the plague... Such people have to be ignored in terms of what they think they know about what you're dealing with. Their knowledge of CRPS is about the same as my knowledge of the maching tolerances of the pistons in a Harrier Jump Jet engine.

My own experience is that the CRPS symptoms at the original site were very different to those at the sites of spread. I had all the colour madness, lots of swelling, huge temperature differences, crazy pains, shiny skin, weird hair, sensitivity, the lot. My next side of spread (foot) was similar, but hardly any swelling. When it spread up my leg, the main symptom was pain and sensitivity, and that odd sensation thing of either icy bones or hot skin. When it started in my arm, I again had little swelling or colour changes, mainly pain, aching, stabby pains, hot sensitivity, cold ice bones, weakness...

It's different in each site, and has changed in each site with time. What is left behind as the mainstay all the time is the pain (we all know about those), and the skin sensitivity, which ranges from hardly there to OMG-don't-come-near-me. The temperatures swing all the time from cold to hot and back again, often different in different areas, and never really predictable.

I've read a lot of research papers, and these things are known and the evidence and discussion is out there. Problem is that most medics haven't the time (or inclination) to read about it in any depth. Some are also still using sources that are hugely outdated. All you can do is the good old print run thing, and hand over some up-to-date info and ask if they could read it. And of course stick to your guns if they try to shout you down or give you inappropriate (or downright dangerous) treatment...it's so hard. I'm sure it wasn't meant to be this hard .

Your Social Security 'expert'....well....words fail me....almost . He clearly knows absolutely nothing about CRPS or he wouldn't suggest doing another surgery on the original CRPS site. Yeah, cause that's going to make it all better... I know some surgery is occasionally necessary, but the whole scenario in that appointment taken as a whole would be laughable if it wasn't about you AzDi, and wasn't about a distressing, painful and intolerable condition that these muppets get to make a judgement on. I mean wtf.

Sorry. Deep breath. I hope you are having a better day today, and I hope things get sorted for you soon. You deserve better than this, and you'll get there, but it takes time, like everything we have to fight for. Never give up, because we're right behind you

Take care of yourself, and don't let them make you doubt yourself AzDi.

Bram.

Hi AZ-Di, I'm sorry you were told that you only have a touch of crps. I was just at my pm dr for a med check a few days ago and he was out so I saw a NP. I told her how much more pain I've been in and that I feel like I have spread and showed her the excessive hair growth on my arms. (my rsd started in my right wrist and hand, but has since spread to all of my limbs and stomach.) She said it's possible it's spread but that I'm doing better than other rsd patients they've seen. I was speechless. I couldn't believe she said that. I know there are worse out there, but that doesn't make my constant excruciating and spreading pain feel any better. Just like if you have a touch of rsd that doesn't make your pain feels any better. I think that what was said was incorrect. I will never see a NP again. Only my PM dr. I really like him. He's new in the practice and is more sensitive to what I'm going through.
As for they asking of your drs could do surgery on your rsd wrist to fix it, I wouldn't do it. My ortho dr and my pm dr and my neurologist all said to not let anyone touch my rsd site. Even accupuncture caused it to spread. I was told that doing surgery on the rsd site (even with IV NB) could cause it to spread and make it much much worse. My drs won't even consider it. If I were you I would try to get more opinions if you can. I got three and they all said NO. I have CRPS I and they still said NO. I don't know about CRPS II though. And maybe your drs could all tell your SS person how dangerous this can be. I believe that there is also alot of literature on "RSD Hope" about this. I hope whatever you decide to do, you will be okay. As for me, I will never have someone touch my original rsd site. Not even for blood pressure.
And my spread is progressing at a slower pace then in my original rsd site. My feet and other wrist and hand burn and are sore to the touch. I have mottling and swelling in my hands and excessive hair growth on both my arms. My toes are a little swollen and shiny and burn. The pain and symptoms in my other areas also aren't as severe as in my original rsd site, but they still hurt alot and sometimes I can't get out of bed until I take extra pain meds. (which my pm dr okay'd). I asked them about the new drug that the FDA will hopefully approve for rsd called Neurondrate (sp?). She threw the paper back at me and said she never heard of it and that I should see my rheum about it. I have osteopenia in my right hip and it treats that so I thought maybe they could give it to me to help me lessen the other meds I take and maybe even help my rsd to go into remissoin. But I felt completely dismissed and rushed out before I even got all of my prescriptions written. I also asked if I should try NB in my other areas that the spread is going to. The NP said to wait until spring because I'm in more pain in the winter and I should just keep taking my pain meds for now. Again, I felt dismissed. I won't see anyone but my PM DR from now on. (And even though my rsd wrist and hand look better, the pain is much worse and I have limited range of motion in my right wrist, hand and fingers still.) Anyway, I will pray that you will be able to find a dr who can help you to feel better. My thoughts are always with you. Take care my friend.