Any self treatment options?
 

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, :hug:

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.

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.

ROFLOL Imagine how silly I looked. My PT and I had worked on different projects through the church, so she and I were very good friends. When she told me that we were going to give Flash Card Recognition a try, I laughed my rear end off and made a joke of it saying, 'That's ridiculous. I'll get all 10 out of 10 correct on that test.' And then I failed miserably and had to buy her lunch. I do not like to lose! I can still feel the sting of my defeat. GRIN!! ROFLOL hahahahahahahaha

EDIT: What took me the longest to understand about CRPS is the FACT that this disease is first and foremost a Neurological Disease involving the Brain, Spinal Cord, and Every Nerve running through the body. It is first and foremost about these seats, it is secondarily about where pain is exhibited in the body in a certain sense. That is why those who know and understand this disease best seek to retrain the brain as a part of therapy. IMO that is one of the best approaches. And what makes it so difficult to deal with is, CRPS is aggressive. In many cases, if you take one step forward in progress, it strikes you back four steps and makes you pay the price for your attempt. It's like trying to chase someone out of the house that you really don't want there, and they just keep moving from room to room, wrecking more rooms as they move trying to avoid you! In the toughest cases, one treatment works for a while and the patient thinks, 'Great, I'm showing progress. It looks like I'm finally going to beat this 'Monster.'" Then the technique stops working and the person crashes and actually gets worse! That is hard to take. Been there! Done That!

;)

I just want to give a respectful reminder that CRPS is a spectrum and has highly variable presentations and outcomes. It sounds like Spike is talking about the worst cases. We must all remember that many people improve. The people who do best are probably not on a forum.

Some patients will do well with aggressive therapy, others will have to go very slowly and be very kind to their bodies, listening to every nuance in order to avoid flare.

I had to be gentle with my own rehab due to the nature of my surgeries. The important thing for me was to be relentlessly persistent in the gentlest fashion. Some things did make me worse and I had to judge whether to try them again less aggressively or just wait a while. There are some things I can't do with my foot (owing to the deficits from the injury)and I have to recognize that. But with ongoing work, many things have gradually improved over time and I am able to do things now that I couldn't earlier on.

Listen to your own wisdom, keep trying and undertake the work of getting better with patience and kindness. Gains do come.

Thank you to all for your thoughtful responses. :)

Thank you for explaining it this way, it kind of clicked. I DO keep thinking, if I can just fix my foot, it’ll all go away. But, sounds like it’s going to be a bit more involved than that…

Thank you, I breathed a sigh of relief when I read this.:D

I'll check this out!

Ugh, I so don’t want to go spend more money on doctors telling me they don’t know what’s wrong… Last month my small group insurance at work went up by about 40%, as we’d reached the deadline for getting an ACA compliant policy. So I’m paying about $90 more a month in premiums for lesser coverage, now every GP visit is $50 and specialist visit is $70. Plus my Cymbalta copay went up by $65 a month. And I’m already so overwhelmed with being a wife, mother to a 4 and 6 year old, working full-time. Anyway, I’ll quit my groaning, like ANYONE wants to deal with this...:rolleyes:

So I’ve started looking up PM doctors through my insurance, but looks like I’ll be starting with my PCP because I have an HMO. I’m hoping to make an appt this week. Again, thanks to you all. I’ll keep you posted.

You may want to ask your Primary Care Physician the very simple questions, "How much do you know about CRPS?" and "How many cases of the disease have you treated?" Getting proper, early care is vitally important.

Speed bump,

I am in a major city with excellent doctors, but have found that there is little knowledge about CRPS here and so far none of my doctors seems interested in learning.

The best help and support I got was online. It was exactly the same case as when I was my parents' caregiver-quite frankly the real world did not offer much, but the cyber world was there for me 24/7 with practical and affordable advice.

Do whatever it takes to get LDN, for the sake of your children. It has few side-effects, is cheap and effect. Watch the Pradeep Chopra videos recommended by Littlepaw.

I'm confused. Are you advising this person not to seek professional medical care from a Doctor and rely only on the internet for information and care? I am really confused. In my opinion, having an exceptional CRPS educated doctor is invaluable. Granted, the internet is great and a person can glean a lot of very helpful information from you and others as well as well documented sites, but there is no replacement for a caring, patient oriented Doctor, who knows their stuff. Is there? And if they are invaluable, they certainly are worth hunting for if they are to be found in one's area of the country. Don't you think? Or are you just saying that finding a qualified doctor is difficult to do, which is true, because of the lack of information in the community about CRPS? What am I missing?

There is definitely no substitute for skilled and knowledgeable doctors.

I personally didn't get the impression Bio was telling anyone not to seek medical care, but saying that it is difficult to find doctors who know CRPS. I have to agree that it is a challenge reiterated by many here and a reason many of us see several doctors before settling on one. I am deeply grateful to mine but it did take a while to find him.

There are so many good tips online from a patient's perspective for living with CRPS (and access to the latest research and treatment info) that I can see where the internet is helpful. It is certainly a great place for support like Bio said. But like everything, it's always good to consult the experts before embarking on something new.

Hi SpeedBump,

Great information from everyone else already.

Relevant to your thread topic, I chose self treatment when the recommendation of nerve blocks and a revolving cocktail of drugs, potentially followed by a spinal implant, didn't make sense to me as healing methods. As short term modalities - sure - (excluding the SCS) - but these were being presented as the only treatment methods available. In addition to seeing at least 5 specialists at local for-profit hospitals, I went to a well known teaching hospital and pain management center supposedly "specializing" in RSD (they called it CRPS.) No PT, no OT, no mental health counseling, no antioxidant/nutritional recommendations... All the things I thought were really important were not being offered or even mentioned as treatment. Again - not against short term fixes as long as the broader recovery goal is kept in context. Immediately post-diagnosis, narcotics really helped me with the pain early on and were invaluable.

Going wholly solo is definitely not for everyone, and to be absolutely clear, I would have LOVED to have a PCP or specialist with me as a knowledgeable partner in battling RSD. Unfortunately the medical field just isn't set up for that to be an option, unless you get very very lucky or are very very persistent (or both). I was really scared to go solo but personally felt like it was my only option.

I've been blessedly free of symptoms for three years now; here's a link to the stuff I got into: http://neurotalk.psychcentral.com/thread205597.html