On January 19th I had surgery for what was supposed to be nothing more than a small fatty mass in the bottom of my foot. When I came to from surgery the Dr. informed me that the fatty mass was actually protecting a tear in my plantar fascia. The tear was repaired, but a nerve was badly damaged in the process. For about two weeks following surgery it seemed as though I was recovering well, other than some small pain and numbness in my foot. Suddenly some very strange and horrible pains started setting into my foot. It feels like my foot is on fire, its being shocked by lightning, its being crushed, and the skin in certain areas have become so sensitive that even a small shift in the air of a room can make me cringe in pain - yet I cant cover the foot because that hurts as well. My foot is also slightly discolored - its got some areas of tiny red spots and some areas that look maybe bruised? I've honestly NEVER experienced pain like this in my life - I didnt even know it was possible to experience pain like this!! My Dr. tells me that I now have RSD. After trying lyrica with almost no success he has put me on neurontin and Amitriptyline and he has refered me to a pain managment Dr. The new meds help only a small amount, and I'm so scared that the pain Dr. isnt going to help. I just dont know what to do or where to go for help!? I've read that if RSD is treated early there is a better chance of it going into remission - but I dont know who to go to? Will the pain doctor help me? Or should I be seeing another type of doctor? Im so scared that I will never walk on my foot again, that I'll never sleep again, and that I'm being sentenced to a life of unbearable pain... Any advice is welcome! Thank you so much.

The pain doctor is a very good place to start. They will be able to get you on the right meds (it sounds like you are on the right path to start) and will be able to perform sympathetic nerve blocks which are a typical starting point for someone with RSD.

He should also perscribe physical therapy. I know the pain is intense and awful...but RSD is a move it or lose it kind of thing. Immobilization is BAD for you when you have RSD so you need to keep moving your foot as much as you can. In the beginning this may be things as small as heel/toe raises while sitting, scrunching up a towel with your toes, drawing the alphabet with your foot, etc...but movement is key. When I was first diagnosed, I did pool therapy which was good because I would do weight bearing exercises without as much pain in the water (though the water itself did provide some of its own challenges with regards to pain). Also...definitely want to discuss with the doctor and therapist desensitization techniques to try to normalize the sensations in your foot so that you can wear socks and shoes without so much pain...this will give you some protection against worse triggers like cold air and stuff.

And...as important as physical therapy sessions are...it is just as important that you make sure you work with the therapist to create a home routine of exercises that you can do every day (throughout the day at your own pace). This will allow you to progress faster than you would if you just went to therapy 3 times a week. Insurance might limit the number of visits you can have at physical therapy...so it is crucial to do the work on your own. Realize that physical therapy is a slow process...so after a couple of weeks I would recommend discussing how many visits you have left with insurance and then go down to once a week at therapy with the rest of the exercises being done on your own. You cannot make them do this of course...but if they see that you are doing the work on your own and making progress they may be open to this idea. It is a shame for some people that they do therapy, improve, and then run out of visits and end up spiralling back to where they were before therapy because they have no direction and don't know how to keep progressing further.

I am sorry to hear that you are dealing with this monster but you are very lucky to have a diagnosis so quickly. The odds are greatly in your favor for having successful treatments and remission is much more likely. I know it is very scary...but you WILL walk again...you WILL sleep again...you WILL be able to live you life. I am not saying that it will not be hard...but you can do it if you really set your mind to these things. A year ago my RSD spread and I ended up in a wheelchair unable to stand or walk at all for months and months...now I am up and moving and feeling more and more like my old self. You have a better chance of remission than most of us because of your early diagnosis but even if that doesn't happen (worst case scenario) that doesn't mean that you are sentenced to death of everything you knew and loved. A lot of it has to do with your mind set....don't give up. It is hard work...a daily fight to not let RSD rob you of your entire life...but it's worth fighting.

There are some things to be aware of at the beginning:

One...as I said...do not immobilize you foot...keep it moving even if all you can do is tiny little stetches. Trust me...all the pain you go through with this will be worth it when you start walking again.

Two...NO ICE!! Doctors had me icing my ankle for months before I had a diagnosis and I have no doubt that this made my RSD progress father, faster within the first 6 months.

Three...if you are not getting enough relief...talk to your doctor. I would stay away from narcotics...they generally do not help RSD pain and are not worth the trouble they can cause long term if they won't give you much relief anyway. Other meds that might be worth a try are adding Tramadol for the pain and an NSAID for an anti-inflammatory (meloxicam/mobic was the best one for me). This combination worked well. But make sure you only start one new med at a time so you can tell which ones are helping and which, if any, are causing side effects. I also am a fan of Lidoderm patches. They don't help me a LOT with the pain but do help take the edge off. Initial application can be a little painful because the patch feels cold when I first put it on but that subsides quickly and by the time it comes off my limb feels warm.

I have found significant pain relief with a TENS unit. This doens't help anyone but they usually offer some sort of stim at physical therapy so it may be worthwhile to discuss trying it out in therapy to see if it helps you. That...and ultrasound heat therapy. I found it beneficial to do the ultrasound for 5 minutes at the beginning of therapy and 15 minutes of stim and HEAT at the end. I would leave therapy with my pain level down to a 3/10 and when I arrived it would have been a 8 or 9/10. The pain level would go up within and hour after therapy but at least it was some noticeable relief even if for a short period of time. I now have my own TENS and ultrasound machines at home. If these seem to help you at therapy then definitely ask your doctor to write you a script for a portable TENS at home. I actually wear mine all day. It clips on my pants pocket and I run the wires down through my pants leg. I don't have it ON all day but I turn it on for 30-60 minutes and then it's off until I feel like the pain is creeping up and then I'll turn it back on. Like I said...it doesn't help everyone but I have found more relief from this little machine than I foung on many medications.

Four...HEAT can be very soothing for many people with RSD. There are exceptions of course...but it is worthwhile to experiement with different types of heat, heating pads, etc. I know you are probably too sensitive now to handle a heating pad on your foot until you get some more relief from the pain...but another option is a space heater. I find it very soothing and helpful when the pain is bad to elevate my foot and have a space heater blowing on it. Another good this is warm baths with epsom salts. I usually start my day with one of these and it is part of my daily routine to keep the pain levels manageable.

Five...please use this website as a resource for asking questions, venting, etc. It is wonderful for that and I have learned so many wonderful things on here which have helped me fight this thing and regain a sense of normalcy in my life. RSD is rarely the same in two people...so not everyone finds relief in the same things...but the combined experiences of members can really be a godsend. Even the little things like what types of clothing/shoes people can wear, different things they do at home to help with the pain, etc can make a huge difference. But most importantly just knowing that you are not alone and that there are others out there who really understand what you are going through. Even with supportive family and friends and doctors...sometimes you just need to talk to people who KNOW what it is like to live with this every second of every day.

Again...I am so very sorry to hear what you are going through but I am glad you have gotten the diagnosis early and can start treatment ASAP. Don't give up. You have a fight ahead of you but you CAN beat this thing. RSD does not have to ruin your life. Take care, keep us posted, and welcome.

Neko,

Welcome to the forum. Sorry to hear about your CRPS.

I have CRPS in my foot (diagnosed in 2008) and am on amitriptyline, neurontin, naproxen sodium and trazadone (for sleep).

I really don't have much to add to Catra's comprehensive and accurate post. I agree with everything in that post. Proper pain management, physical therapy, no ice, keep it moving as best you can.

Get plenty of opinions on your condition and how to treat it. Know this....CRPS is widely misunderstood, even among professionals! It is highly recommended that you assemble a "team" of professionals, as a multi-disciplinary approach is the best for this condition. My team consists of my podiatrist who is the team leader, my GP, pain management doctor, physical therapist, chiropractor and I use a massage therapist periodically.

Here are a few links that you should check out that may help you. Lots of good information. Even though Dr. Hooshmand is no longer practicing, his advice is still very pertinent. Good luck and keep us posted!

http://rsdrx.com/

http://www.rsdfoundation.org/index.html

http://www.rsds.org/index2.html

http://emedicine.medscape.com/article/1145318-overview

http://www.painfoundation.org/

Nekko,

Welcome to neurotalk. Here you will find the information you are looking for or at least be pointed in the right direction. There will be no judgement only opinions. I am sorry you are going through such a rough time. You are right the early the intervention the better success of remission. You are lucky in the fact that your dr. has diagnosised you early on. For some it is many years. As catra as mentioned you want to get a pain dr. preferably one that specializes in anesthology. So they can perform blocks. Try and keep a positive outlook it will help you in the long run and remember you are not alone, there are a lot of us here for you.

I developed RSD in my left hand after I had my cast removed due to a bad fall on icy sidewalk in the Winter of 2008. The pain was excruciating and the color of my left hand was red. I went to see a specialist in Interventive Pain Management. He quickly diagnosed that I had RSD after a test in his office/clinic. He gave me an injection that required my lying down quietly for 30 minutes. I felt a little bit weird at first. But he said that's okay. Just stay calm. Guess what? After just one injection, I felt such a great relief of the pain from my hand.
I like to share this experience with you, and hope that helps.
Good luck!

I had RSD in my left hand after they took off my cast after 8 weeks due to a bad fall on the icy sidewalk in Dec. 2008. I had excruciating pain, and the color of my left hand was always red.

Yes, you are right that you should go to see a specialist as soon as possible in your case of RSD. 8 weeks time frame is about what you have to get it treated, or even the best doctor will not be able to help you beyond that point.

You should go to see your family doctor first, so he could recommend a specialist like “Interventional Pain Management” doctor to take care of you. You should let every administrative staff booking the appointment for you know that you have RDS and need urgent attention from the “pain” doctor. If they make you wait, you should say that you have to speak to the doctor as you have a RSD.

Hope this help.

Florence Tsao

Thank you all so much for your advice and support! It's been a pretty bad couple of days, but I'm trying to hold onto hope!! Through some research I found that I have a couple of great RSD specialist in my area (NJ/PA) Sadly, one is booked through 2014!! And the other does not take insurance! So neither option would work for me - although I'd be willing to sell a kidney to get into either! I did, very fortunately, find a pain doctor that was familiar and knowledgeable with RSD/CRPS that was willing to see me right away. I had my appointment this afternoon and he did confirm the diagnosis of RSD/CRPS. I was devastated, but not surprised. He gave me a prescrip for PT and will be giving me a sympathetic nerve block March 5th. I am praying with everything in me that the block has a signifigant result! I'm nervous about finding a therapist and about PT in general, but I know I need it. In only a few short weeks my toes are already curling down and I'm hardly able to move them (not only because of the pain - I just simply cant)

On an emotional note - I find that I'm having hard time holding it together in regard to dealing with my family (even my husband) Some of them seem to get it - but some are so painfully clueless that I cant even stand to be in their company! I called my husband after leaving the doctor and through gut racking sobs explained everything... his response "Why are you so upset?" WHAT?! Why am I so upset??! WTH?! I couldnt even formulate a response!! He really is so blind and clueless about how horrible my pain is and how horrible RSD is that I wonder if he has even been present in the last month! My MIL was no better. She knew I was going to the doctor today, as she had to pick up my children because of it, and she didnt even bother to ask how the appointment went! Finally after being with her for almost an hour I asked her if she'd like to know. When I explained everything to her she waved her hand in a very 'Oh whats the big deal' manner and pretty much told me I was overreacting! I was flabbergasted and sick! Thankfully my own mother was much more understanding and was almost as upset over everything as me. Although I wouldnt wish this pain on my worse enemy, I wish I could plug people into it, if only for a moment. I'm certain they'd be shocked, and a lot more understanding!

Sorry, I'm just venting now!

Again, thank you all so much! I have read so many posts on here, and although so many of you are suffering so greatly, you share your story and support each other!

Neko,
Hi, I'm so sorry for your diagnosis, but am happy to hear you are getting your treatment plans together rather quickly. My CRPS began in my right wrist after the removal of a small ganglion cyst. It is now in both arms, hands and is beginning to spread to my shoulders and upper back. I can relate with some of your In-Law issues. Both my Mil and BIL think I'm lying. One of the hardest parts of our CRPS is that it is for the most part invisible. If I can offer one piece of advise, please don't try to hold it together. Fall apart, it's ok!!! Your diagnosis is life altering not only for yourself, but for your Husband and Children. I held it together and kept everything I was feeling and thinking inside, until I completely lost it and it wasn't pretty be honest with your Husband about how you feel not only physically it emotionally. He can be your number one advocate. Especially on the days you can't do it for yourself. Try not to worry what anybody else thinks, focus on yourself and your family. Your life will become a day by day adventure, and you are now Indiana Jones. A lot of things will be changing in your life, just take it slowly, try not to over stress ( I know it's almost impossible ) and when the pain becomes to much, don't hide it. Take a time out for yourself , maybe a dark room with soothing music, or some aromatherapy or even sometimes a pity party is necessary your life is now different it that doesn't mean that is has to fall apart. I truly wish you a few moment of peace everyday. Corey

It's good to hear that you are getting treatment and that you have found a doctor willing to try to help you. Don't be too nervous about the physical therapy...just be open and honest with them about what you are going through. If something is too much for you...tell them. It's important to push yourself but it's just as important to make sure you are doing what is good for your long term recovery and not pushing yourself too far too fast so that you end up down for even longer.

I'm very sorry to hear what you are going through with your husband and MIL...this happens a lot to those of us with RSD. All I can suggest is that you try not to let it get to you too much because the stress will only make your RSD that much worse. Simply come to terms with the fact that they don't understand. You can educate them whenever an opportunity presents itself...but you cannot FORCE them to "get it." Turn to those in your life that you can count on for support and understanding and don't try to seek it out from people who are not willing or able to give it. You can hope that they turn around...especially when they see how you have to deal with this every day and that it's not just a passing thing.

Focus yourself on doing what you need to now in terms of treatment and stay optimistic. Don't put all hopes in the block being a cure all...that's just not how it works. It is a treatment and while I pray that you get relief from it...it is not the ONLY treatment. So IF it doesn't work, don't feel completely destroyed and deflated. I say this because I made the mistake of thinking the block would be a cure all and that this pain would disappear. When I didn't get relief from it...I was a mess and it was hard to crawl out the hole emotionally and refocus on the physical therapy and other treatments. I managed it...but it was difficult. So go in with an open mind and the understanding that IF it doesn't work that there are other things out there.

Good luck and take care. Keep us posted.

I agree with everything she said; don't need to reiterate, just supporting what is said. =) God bless, suz66