Hello-

I have been diagnosed with pn-probably hereditary-but neg for CMT by the DNA testing. Have been on the pn site for about a year now. After having ankle surgery 7 weeks ago, I developed severe nerve pain in my foot. Podiatrist said that my nerve was damaged below my left ankle bone during surgery and "would be fine in a couple of days"-that was 6 weeks ago. After several appt with him, he told me "that I better get over this or I will end up with CRPS." Thanks Dr. Now I have an appt this week with my neurologist (the one who did all the testing for CMT and nerve conduction study). What type of Dr would be the best to diagnose CRPS and TREAT it if that's what I have. I belong to a large HMO and have a feeling this is all going to get brushed aside if I don't go in with some knowledge and ask the right questions-

Thanks,

Judie

Neurologists and pain management doctors are the two primary ones to diagnose and treat RSD or CRPS. The "better get over this or I will end up with CRPS" comment is clearly made by someone who knows nothing about CRPS because that's not how it works. However...early diagnosis and treatment can be crucial to getting the condition under control and in remission. Definitely follow up with the neurologist and see a pain management doctor with experience treating CRPS. Learn what you can about the condition so you can accurately gauge whether the docs you talk to know what they are talking about or if they are as uninformed as your previous doctor.

I will pray that you do not have it but if you do then that one off hand, idiotic remark, may well have put you on the right path for treatment at a time when early treatments may do wonders for you. Good luck.

Thank you Catra- my health insurance in Kaiser Mid-Atlantic. I did ask the last time I saw my primary care Dr if a pain management Dr was available and she said no. Thought that was kind of odd for such a large HMO, but I will ask the neuro at my appt tomorrow. When I realized that it was nerve pain that was so bad-and not the actual pain from surgery, this neuro over the phone prescribed lyrica in addition to the gabapentin that I already had for my pn. I had not been taking the gabapentin because of the "drugged" feeling it gave me but started taking that during the day and added Lyrica at night to get some relief and try to sleep. It has helped, but oh boy, I am half dazed when I get up in the morning.

J.

Last week's appointment with my neurologist confirmed CRPS. At first he did not understand what I was saying but then when I took my shoe and sock off the other foot he clearly saw what was going on. He immediately made an appt with an anesthesiologist at another Kaiser facility. Turns out this Dr is the "pain management specialist" at Kaiser in the DC area. Hmm. Doesn't surprise me one bit that my "personal care" (that is certainly a joke) physician did not even know one existed.

This Dr. immediately wants to do a block. Now of course there is a 3 week wait at Kaiser for that. However, it is giving me time to read as much as I can about CRPS. From what I have read on this board, it does not sound like very many people have had long term positive results from this type of treatment. Not sure what exactly to do next.

One question I did ask my neuro was if it was common for people with PN to also get CRPS. He said no-and that to him it was more UNLIKELY for that to happen. I can't be one of the "onlys" out there. Anyone else here on this board have PN first and then get CRPS?

As always, thanks to all those who contribute here. What I have learned is so valuable-

Judie

Glad you got the appointment with the pain specialist. Maybe with insurance it's one of those things where they need the confirmed diagnosis before they can approve an appointment with the specialist? Who knows...I've met so many incompetent doctors and had so many quirky issues with insurance over the years that I don't think anything would surprise me anymore.

I am almost positive I have read posts from others who have PN and CRPS...so that does happen. My understanding in general is that it's like an autoimmune disorder in the sense that if you have one you are more likely to have or develop another. But RSD/CRPS is still not very well understood so it's hard to make generalizations about what it really is or what it is like...especially since it can affect each of us so differently (and yet be so similar too...it's such an odd condition).

Don't get your hopes down about the block. MANY people respond well to them. It's just that after a certain amount of time passes then the odds go down on the percentage it helps. But there are many who have been treating with blocks for years and have gotten good relief so you never know.

There are lots of different treatments out there besides blocks and often treatment includes a combination of several like meds, physical therapy, tDCS, SCS, ketamine treatments, etc. You can read about all of these things on here. There have been success stories with all as well as disappointments. Unfortunately there's just no cure all treatment that has been found...YET.

Take care and keep asking questions. we're here for you and we all understand what you are going through right now.

Hi. Welcome. Its a shame you have to be here but its good you are here.

I also had some pn from a burn injury. My deepest burn was over the metacarples of my left hand and it very quickly turned to CRPS. my burns were 7 months ago.
I can honestly say knowledge is power. Do lots of reading but dont get caught up in the horror stories. Because your at the early stages you have a chance of remission so educate yourself on how to best aim for that. Dont just look at medical treatments. there are lots of other things you can do. Epsom salt baths are great and Physical therapy is recomended. This forum is full of information so read back over the posts and also look at the recomended sites in the sticky notes.
On other thing that was a must for me is a "use it or loose it" attitude. At first i was advised to have complete rest but by doing that i lost movement in hy hand. Big mistake. I started to use my hand just a ittle and then rest it and start over. in time i have regained movement and my hand has improved in this area. your PH will help you with this.