So, I really try not to play Dr. Google, but this has been going on so long and has so many baffled that I just can’t help myself. I tried to make my story short as possible, but sorry it’s still long…
In April of last year, I was carrying a basket of laundry and stubbed the middle toe on my left foot, on my daughter’s tricycle. It was excruciating, I thought oh no, another broken toe… I fully expected swollen, black and blue, the nail falling off etc. The next day I was surprised to see only some light bruising, although the entire toe was quite tender. I went on about my life. The next month, on Memorial Day weekend, I was carrying another basket of laundry and rolled my ankle. (Dang laundry! LOL) I rolled it really far and I remember thinking to myself, wow, that should have been a lot worse. It felt a little sore as I continued on about my business, but I guess I just “walked it off”. That night I went to a baseball game and I did a TON of walking. The next day I go to put on my sandals and I’m like OMG, my left foot is TOTALLY swollen, through my toes and everything. I figured it was from rolling my ankle the day before, as it felt a little sore around my outer ankle bone. I thought it would probably resolve itself and wasn’t too concerned.

When I went back to work, I showed a coworker, as it wasn’t getting better. She noticed right away that the entire left foot, and up through my mid-calf, was much more red than the other. I thought well, it’s probably from the swelling. After a week, I finally went to my PCP as the swelling wasn’t better and the pain was slowly getting worse. He didn’t think the swelling was from twisting my ankle, because it was throughout my foot and not just my ankle. He sent me for testing to rule out DVT, the test came back fine so he concluded it was hormonal. Now, I really like my PCP, but I thought wow, he is WAY off about this one. He said give it time, and he’d give me a diuretic if it began to bother me.

I elevated, iced, stretched, massaged, etc. Over the next month or so the swelling improved slightly, but the pain was getting worse. I figured okay, I need to see a different doctor about this. I began researching online and thought I’d start with a podiatrist. He thought it was definitely injury related. He did X-rays to rule out any fractures and diagnosed me with tendonitis, a result of twisting my ankle that day. He thought the extent of my swelling and redness was not typical, but not alarming either. I also brought up the fact that my toe was still very tender from stubbing it a couple months back, but X-rays showed nothing there either. He wrapped me with an ace bandage and gave me an ankle brace, told me to come back in 2-3 weeks. I wore the brace as often as possible, but the brace itself seemed to be causing pain. There were times I’d have to take it off because it hurt so bad.

When I went for my recheck he seemed surprised I wasn’t much better. But there was at least some improvement, so he sent me to PT to help the healing process. PT initially gave a bit of relief, but then things started going backward. Despite all the fancy treatments I received, the swelling persisted, and the pain wasn’t improving, it was getting worse. Throughout this time, I have a sense that my injured toe is somehow tied into everything going on. When I have my toe bandaged, almost splint-like, the pain in my ankle decreases. I thought maybe I’m favoring the toe and it’s affecting my gait? Back at the podiatrist, he’s baffled by the persistent swelling and redness and thinks I may have lymphedema. He says tendonitis can take a while to heal, but orders an MRI to make sure there isn’t anything else being missed. When the MRI comes back it, he said all it showed was “some” inflammation… I’ve continued to get worse, the pain sometimes keeping me up at night. He told me to stop PT, then gave me a walking boot. It felt a little uncomfortable when they put it on, but he said to give it a few days. But OMG, by the end of the day, it was Un-Freaking-Bearable. Over the next week I wore it the best I could, but by then I realized this thing is NOT helping. I thought OMG, if a walking boot won’t help, what will??? The walking boot was supposed to really knock it out! I called the Dr and he wanted to do a cortisone injection next. I scheduled the appt, but chickened out at the last minute. I thought maybe I’ll try the ankle brace again. It was at that point I noticed my toe. I hadn’t bandaged it for a few weeks now. It’s still very sore, but now the top joint looks all bulgy, and when I try to move it with my fingers, it’s all stiffened up! I thought okay, I’m going to bandage my toe, try the ankle brace again. The next few days feel like a big improvement, although my foot and ankle are still red, the swelling is down, and the pain is much better. I thought I’d found the answer! Then once again, I’m set back, the bandaging on my toe begins to be painful. I try loosening, tightening, different bandages, but no luck. Now the ankle is hurting again too. But if I remove the bandage, the ankle pain just continues to increase, so I deal with the toe.

All my searching keeps leading me back to RSD/CRPS. I initially dismissed it, because I read some of the stories about the pain and thought, my goodness, I certainly don’t have pain that intense. I’d say the pain is mild on good days, moderate on bad. However, maybe it’s worth mentioning that I do take Cymbalta for fibromyalgia pain and it’s helped tremendously. I wouldn’t be able to function without it. Maybe the Cymbalta is masking some of the pain?

I’ve been racking my brain for months now trying to figure out what could possibly be going on. I’ve wondered could it be the fibro? I also have Reynaud’s and have wondered if it’s simply lack of blood flow slowing the healing process? I’ve wondered if it’s some kind of nerve pain from the arthritis and bulging discs in my back? Nothing really seems to fit.

So I guess my question is: If it is CRPS, and the Cymbalta is helping to manage the pain, is it really necessary to seek medical treatment? Are there any kind of self-treatment things I can do that might help? Anything I absolutely should or should not do? I gather from reading that immobilization, and ice are no good. Heat and Epson salt may help. Anything else?

In my opinion, and I hope that others chime in here as well, I would find a good pain management doctor to help you. The reason that I say this is because if this is indeed CRPS, the quicker and harder you hit that disease early on, the better chance you have of kicking it into remission. If it is CRPS and you just kind of recognize that you hurt but don't really aggressively go after it, the disease will just keep on keeping on and slowly debilitate you more and more as time goes on. The thing to remember about this disease is, the problem isn't seated in the "stubbed area." IF it is CRPS, it is a neurological disease of the brain, the spinal cord, and the nerves running through your body. Your foot, ankle, and leg are the symptom site (at least that is what I call them). Therefore in my opinion, get a good pain management doctor and hit it with everything you can. They will help you to determine if what you have is really the "Monster." I think , it probably is, in my very unprofessional opinion, from the sounds of it.

EDIT: Here are some self help items that have helped

1. Walking in a pool will take the weight off of your leg and may retrain your brain to use your leg and foot more normally
2. Mirror Therapy is where you use your healthy foot to do exercises that you watch in the mirror. This retrains the brain to think that your CRPS limb is actually doing the movement. This is very helpful for some CRPS patients.
3. CRPS flash cards. These show the hand and foot in different positions. CRPS patients have trouble identifying which is left and right. Your goal in using these is to identity left and right hand and foot in each picture. This is done to help retrain the CRPS patients brain.
4. Proper diet. Certain foods ramp up CRPS pain for many patients.
5. Keep your stress as low as possible. Stress elevates pain levels for many CRPS patients.
6. Cognitive Behavioral Therapy as directed by a Psychologist
7. Flare Up Kit consisting of proper medications, eye mask, music, limb elevation pillows, liquid refreshments, bedside snacks, etc. to be used when flare ups are at their worst to help weather the storm.
8. Educate those closest to you as to what your disease is and does. If you do this early, it will save a lot of problems later on, possibly and especially with your family, friends, and your "employer." If what you have is the "Monster" this last item will be very important for the sake of stability!!! I lost a lot of friends and people I love due to this disease, and others may have too. I wish I could go back and educate them from the start, but no one made me aware of how devastating this disease really is. I learned the hard way! (This disease effects not only the body, but also the proper functions of the brain i.e. planning, organizing, memory for example and emotions too). Educate, Educate, Educate!

I wish you well

Hello and Welcome SB,

I am sorry about your foot and ongoing trouble. Hopefully this is just a bump in the road. While what you describe does sound suspicious, even if it is CRPS there is much reason to hope. Dr. Michael Stanton-Hicks, a highly regarded CRPS specialist at Cleveland Clinic, says 80% of people improve over time. Yes, the disease can progress, but don't project the often doomsday information out there (or on here) onto your future.

Consulting pain management is worthwhile. There are non-invasive frontline treatments that may be helpful if you have CRPS and early treatment leads to better outcomes per literature. Your cymbalta is likely helping you and is a med my PM uses for this. However, there are a lot of options and since you are early in this process they may consider giving you something like clonidine or oral steroids . I took three rounds of prednisone early on and it made a difference for my case.

Second opinions can also be worthwhile. Podiatry training was not standardized so well in the past so there can be quite a bit of variation in education and fellowships. A Foot and Ankle orthopedist or podiatrist who is a member of the Association of Extremity Nerve Surgeons may know more about nerves and their issues. Getting someone else to peek at your MRI and your foot may shed new light.

I agree that CRPs is a nervous system disease, but treating a pain contributor can make all the difference in outcome. If something is still wrong with your foot and you can track it down and treat it, that will help you.

On your knobby toe, it sounds like it may have "hammered" which is caused by a muscle imbalance. Of course if you have something up with your nerves, either CRPS or from swelling putting pressure on them, then signals to muscles aren't as strong.

By all means, don't self treat. Take the best care of yourself that you can, stay active without pushing your foot too hard and find a doctor who can help figure out what is going on and get you the treatment you need. Come let us know what happens.

I hope you find relief and healing soon,

Hi SpeedBump,
I must say that I agree w/ Spike and Little Paw about finding a doctor qualified to diagnose CRPS. There are certainly things you can try on your own, but not without medical intervention as well. It can be very hard and frustrating to find a doc that is qualified. Many of us have gone through several, but keep trying. Pain management or an orthopedist are probably a good place to start. Best wishes on your recovery~mama mac

Yes I agree with mac and the others. Keep searching for a PM until you find one familiar with CRPS. I am searching for my 3rd at the moment so I know how frustrating the search can be. Just stay positive and hope you are among the 80% of those who go into remission if you do have CRPS. Who knows, the tests might find it is something else that is treatable that is causing the problems.

Look up the Bowen Technique. I successfully used this to eliminate serious swelling. Basically using a specific washing soda crystal wrapped in a cotton cloth and tied around the swollen area overnight I was able to wick off excess fluid. It shocked me that it worked. I believe that prolonged swelling interferes with the lymph system, so by removing the excess fluid the lymph system can get back to doing its job.

I watched a YouTube video demonstrating the technique and purchased the crystals from Amazon.

Ice exacerbated my CRPS symptoms. Anti-inflammatories damaged my stomach. This crystal technique. non-invasive with no down side. Acupuncture helped minimally.

What helped me the most was the combination of LDN and pool therapy.

I failed this miserably in my eval for the pain program. I sure would like to get my hands on a set so I could incorporate that into my home program. Any idea what they are called/where i could get some?

As a matter of fact, I do. If you have an iPhone or iPad go into apps and do a search for Orientate. The initial download is free. You do have to pay for the full version though. Also, when I was taking PT, before I crashed, I was also logging in to a website, once there I would take an online left right hand foot recognition test that both my Physical Therapist and I could log into. This program allowed me to take the test online or from my mobile device. The results were instantly recorded on the site. iOS and Android both had a program to be downloaded that I had for that. I will look and see if I can find the name for that program. It was the best Hand and Foot recognition program I ever used. But.. it was pricey! It may take me some time to find the name of that program/software again, so please bear with me.

One last thing. If you purchase from Amazon. Go to their website. Type in Recognise (YES with the S instead of Z). There are some hand recognition cards for sale there that you can purchase. Again, like anything associated with helping CRPS patients, they are pricey. In fact.. here is the link to the cards:

http://www.amazon.com/Recognise-Flas...ords=recognise


EDIT: And here is a link for the Feet:

http://www.optp.com/NOI-Recognise-Fo...s#.VqToPjZlmRs


-Spike-

Great info Spike.

I also used the Recognise app which I found through here
http://www.gradedmotorimagery.com/index.html

They have a lot of great info on their site and the recognise app has more than one level so it gets harder when you're ready.

I have never heard this one before. I have been looking at different images of both hands and feet thinking that it sounds silly. It is amazing how many times I am getting it wrong. I never would have realized this otherwise.