First post here. What a great resource! I have spent hours reading many of your stories. What an unusual, misunderstood, misdiagnosed and devastating disorder this is.

My situation is not as difficult as most of yours, but it has become a "lifechanger" for me, none the less.

I had two surgeries on my big toe. Healing nicely, then on September 11, 2008 I bumped that surgically repaired toe into a piece of furniture which started the process. Very light bump and to be honest, I didn't think much of it.....at first, until symptoms increased.

Podiatrist put me in a camwalker, which made things worse. One of those prior surgeries was a fusion of the front toe joint and there was still a screw in there, so he thought aggravation from the screw was a possible cause, so removed the screw but no change. X-rays and CT scan negative. Podiatrist eventually suspected CRPS as there wasn't much left it could be (diagnosis of exclusion). Met with a pain management doctor who specializes in RSD. He performed a sympathetic lumbar block. Had a successful block (warming of leg) but got no relief from it; it actually aggravated the condition for a day, then went back to baseline.

If anyone would have told me that a sore toe would create this much pain and angst, I wouldn't have believed them (until now)! A month of physical therapy got me ambulatory again. Another month of work on my own and I got much of the foot swelling down, range of motion back, and pain reduced.

Inflammation, shiny red skin, burning pain remain (had stabbing/hot cold, but that has since since gone away) Oddly, I have NO hypersensitivity! That is the one symptom that I've never seen. I believe that lack of hypersensitivity may have hindered a quicker diagnosis.

Am taking neurontin 300mg 3X a day which definitely helps, OTC naproxen sodium, warm baths, massage, foot and toe exercises, stationary biking and short walks to keep things loose, blood moving, and keep my sanity. These things are ALL helping. I can't spend much time on my feet though or I pay for it later in the day. "Use but not overuse" is my mantra. I think I learned that here!

I'm also nursing a bad knee (other leg) and will eventually need a knee replacement. Had surgery scheduled just before this all started but put a hold on it at this time because of the toe CRPS. And between the toe and the knee, that prevents me from working as a Technician. Money running out.....yikes!

A couple of the things I've been pondering which I'll toss out for comments...

1. Anybody ever heard of having CRPS in only part of a toe? And NOT having the hypersensitivity?

2. Risks of taking Neurontin (gabapentin) long term? I'm tolerating well so far

3. Risks of having this spread to the knee if/when I have it replaced?

4. Any risks involved with major dental procedures. I was told that cleanings would be okay, but we did not discuss extractions, root canals, etc. Podiatrist did say that risk of spreading from procedures is primarily when cutting of muscle, nerve, or bone....not tissue.

Thank you so much in advance for any comments!

Hi welcome and I am sorry about your dx. Like you before I was dx I was put in an airboot which made the condition worse. I also had a nerve block that increased my pain. I am also on neurontin and other meds. You are still at a low dose as sometimes 3200 or more is needed. I think overall this drug is ok and long term does not show any issues for most. My doc is very cautious about addiction and creating other problems since rsd is chronic. As for spreading some people do and some don't so try to stay in the day though this is very hard I know. We are all really different in terms of what happens and helps. I am glad your pain doc has knowledge of rsd. On terms of surgery that is a concern about your knee though that does not have rsd I would still consult your pain doc and make sure if you have to do it that your surgery doc is aware you have rsd.

Thanks for your reply Daniella. Am learning a lot about this condition here.

Just had another appt. yesterday My CRPS "team" consists of a podiatrist and 2 pain management doctors very familiar with CRPS. Physical Therapist on board too, but he trained me well and I can keep the affected area moving pretty well on my own, at least for now anyways.

Another review between all and there is no disagreement between the three doctors about the diagnosis, although it is not a "typical" presentation. From what I can see, typical doesn't mean a whole lot with this disorder!!

They bumped my neurontin up from 900 to 1500 mg. per day. A little fuzzy right now and a dry mouth, but not too bad.

Trying to get enough relief where I can spend more time on my feet and see if I can go back to work. Maybe????????? I'll be in big trouble if that doesn't happen. Lots to think about; some anxiety which is affecting my stomach and my sleep.

Stay the course I guess.......

Hi Birchlake, Welcome to NT, although I'm very sorry for the reason of you being here. You will find much comfort and support. I didn't have sensitivity like most people. I'm into this 15 years full body or generalized. Mine came right after a breast biopsy-swollen arm and frozen shoulder. Although I wasn't diagnosed for 4 years,, I had lots of p t treatment and massage therapy. I did the massage therapy out of pocket and probably helped deffuse the sensitivity.

1. I had very little sensitivity. Some can't even stand the wind blowing on them. Yes, you can have RSD on part of a limb or member. RSD is likely to spread.

2. I was on 3200 mg of Neurotin. It causes weight gain. I don't know about any other side effects. It completely stopped my electric shocks, jolts,jerks spasms. But after 6-7 years, I went off gradually under my Drs. care and for the most part, they stayed away.

3. Risk is extremely high for spread. Go to rsd.rx and then go to puzzles, which are questions 146 questions from rsd patients and Dr. Hooshmands answers. It covers surgery after rsd and dental issues.

4.My dentist gives me antibiocs the day of even a cleaning. I use the laughing gas mask. I had a root canal by another Dr. and had a reaction to ephenephren. It felt like a heart attack. Dr. had to stop procedure and counter the reaction.

Another website for good info is RSDSA the national organization for RSD.

Also rsdhope.org is excellent as well as mayoclinic.com under R for conditions and diseases.

Hope this helps, one of your new friends, loretta with big soft hugs

Hi when I first was dx with rsd it was a hard dx because I did not have the typical of how it happened and all the symptoms. You don't have to have all the symptoms to have rsd. The doctors are learning this more and more everyday. Through the 3 years I have had my condition my symptoms have changed too. Anyhow on the anxiety front I have this badly but it was worse and got to an out of control point. When I was dx I should of went to a psych asap but my thought was if I could get fixed my anxiety would be less. Well the fix did not happen since this is a managed condition and I finally did go to a psych. I still have anxiety and of course the pain is still there but I deal with it in a better fashion. I really encourage you to go and anyone else. My pain doc said something that really helped me with this he said one does not live in pain for this amount of time and it not impact you mentally. I liked this approach because it was not like saying the pain is in my mind or I can mentally make it go away. He was saying that you need support to deal with the physical pain. Feel better

Daniella and Loretta, thanks much for the replies.

I'm finding out a lot about this disorder. Sometimes I spend so much time researching and reading about it on the internet that I have to walk away. Paralysis by analysis I guess. I'm hitting it with all cylinders and trying to keep a good attitude. Some days are better than others though; you guys certainly know the drill there. Quite a journey.

But as the old saying goes...

"Life is what happens when you're busy making other plans!"

I have a pretty decent management routine, doctors that I trust, a friend who is a psychologist who is keeping track of my mental health, so I know I'm doing a lot of things right. Am looking forward to spring as winter in Minnesota is getting pretty long right about now and the warm weather makes me feel so much better.

I see quite a bit on the internet about Dr. Hooshmand (now retired) who has published quite a bit about RSD/CRPS. I found his "puzzles" article has been especially informative.

I see that he has a published book. I checked Amazon**** and it's available but wow...$107 used to $191 new. Spendy.

Money is awfully tight as I'm not working right now. Have any of you read this book and can you make any recommendations on it? Even with funds being tight, I'd find a way to buy a copy if people feel it is a valuable resource. Knowledge is power right?

Thanks much!

Dear Birchlake:

Have you checked your local libraries for Hooshmand's book?

So sorry about your job - I had to take a sick leave also, but I am worker's comp so they are paying me for now (at a reduced rate, of course - but it's something). I am hoping and praying right now that ketamine treatments this March or April will provide me with enough remission from my RSD that I will able to return to work this spring.

The RSDSA.org website has an awesome database of current research articles regarding treatments and medications. I highly recommend it. (Hooshmand is great, but dated).

The best of luck to you, Sandy

Hi Birchlake,

I Nearly fell of the chair when i read your story, you could almost say i wrote it.
Back in 2009 i had a winograd procedure on my left toe to stop ingrowing toenail growing deep inside the nail boarder.

6 weeks later returned to work everything was fine until 2 weeks into december 2010, when i came out of the office walking towards carpark when i ended up on my back side slipped on ice, thought nothing more of it until a week later my calf muscle starting twitching like it did before Having winograd procedure, then my left leg kept feeling cold, things got worst toe feeling cold then hot followed by a sharp burning pain all down the right hand side of nail boarder which would happen later on in the day, went to see consultant who told me my Ip joint had all but gone not that botherd me in 12 months and that's where all the pain was coming from, he said he would fuse the joint with a screw, that was in april 2011, now three months down the line still having the same pain i knew within 10mins after operation it had failed.

Pain managment doctor tell's me i don't have crps

but reading your blogg i still wonder as my anke and foot are lightly swallon. plus my leg and foot feels wet.

my consultant tells me things will settle down.

Taking pregabalin and Tramadol which doing nothing for me.

Diagnosis of CRPS can be very tricky. This is a condition that can be both overdiagnosed and underdiagnosed! Always best to get multiple opinions, which I would highly recommend if you haven't already done so. It is not responsible for us to try to help you diagnose on this forum; gotta jump through the hoops and see the doctors. I have had examinations now with 6 doctors. You would be looking for a "consensus" / agreement of diagnosis between them.

And be sure those opinions come from doctors that are FAMILIAR WITH CRPS. Many are not. I found one doctor that had seen 2 cases in 26 years, so I kept looking! Most pain mgmt. doctors though are familiar with it. You will usually have a better chance with specialists, and maybe a visit with a neurologist might be a good idea for you. You really need to have a lot of looks at your condition and the sooner the better!!

Are you getting physical therapy for your foot and ankle? For me, that was a very important part of getting things to "settle" down, if you will. Before I stopped seeing my physical therapist, he spent quite a bit of time training me so that I could perform my own therapy. There is a tremendous difference in physical therapists. Again, you need one that has had experience with this disorder, as too aggressive of therapy can set you back. You need to start very slow and easy with the therapy process. Some respond quickly, some respond very slowly, but most all will benefit in my opinion, but you must have the right therapist!!

My CRPS is alive and well mind you, but all of the steps that I take (Physical therapy, chiropractic, massage, neurontin and naproxen, etc) help to keep it somewhat manageable, at least for now. I was on percocet for the worst period with this disorder, but eventually was able to wean myself off of it. You want to try to manage without narcotics if possible. I take tramadol infrequently now; that is about as strong as I need for now anyways.

Every single case of CRPS though is unique. And it is hard to treat something that you don't have a solid diagnosis of. So keep seeing docs until you and they are comfortable with the diagnosis of what you have. IF you do get a solid diagnosis of RX, it is important that you develop a management plan unique to your situation that gives you relief, keeps you mobile, allows you a reasonable night sleep (VERY important) and addresses your mental health (don't forget about that part). Plenty of experimenting is necessary to find things that work for you. This journey is not a straight line.

Lots of good resources here and a good place to vent if you are having a bad day! Many compassionate folks here.

Good luck, keep plugging away on that diagnosis and keep in touch..............

Hey welcome to the boards. You may want to start your own post or even on the intro board. That way you will get more feedback. Does your pain doctor deal with RSD a lot?Have you tried any other meds? I agree that if you have not seen a neurologist you should cause it is important to rule out other conditions. Hope you get answers and relief