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Old 01-21-2016, 07:06 PM
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Originally Posted by SpeedBump View Post
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
__________________
~ No Pain is Gain ~
-Spike-

Last edited by -Spike-; 01-21-2016 at 11:03 PM.
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