Hello everyone,

I found this board while researching stories of full recovery. I found Ness's story and it closely paralleled another story I found (Roger Carlson's recovery story posted in the "stories of hope" section of the *edit*) which I have been using to map my own road to recovery. Ness was right: there are virtually no stories of full recovery out there. I have to wonder if it isn’t just that people who do recover do not wish to relive the experience by posting it. I have decided to jump in because I know how much Roger and Ness’s stories have meant to me through this journey.

In September of last year I was a fully-funded grad student running 7 miles/day and power walking another 6 on campus. I developed Achilles Tendonitis that month and spent four weeks recovering. I was almost back to running when, on Halloween, I was walking across campus and felt a bizarre fluttering in my left calf. Three days later I could not walk on my left leg. Four days after that it went ice cold and turned a funny reddish-purple. It felt like it had been doused in gas and set on fire. The local clinic (I was in a rural college town. Medical care was virtually non-existent.) told me it was just the tendonitis flaring up again. Told me to stay on crutches for four weeks and use RICE therapy. I KNEW this wasn't tendonitis, but they wouldn't listen. Four weeks came and went with no improvement and by then it was winter break. In January I went back to the clinic and they insisted it was still tendonitis (!) and said they would not refer me to anyone until I tried physical therapy. By then my left lower leg was atrophied to the bone--I had lost all the muscle and still could not walk on it. The PT turned out to be a disaster which caused a full body spread and dramatic systemic symptoms (difficulty breathing, extreme fatigue, one-sided weakness, vision problems, etc.). I was convinced I was dying and had to take a medical withdrawal from grad school. I flew to family in the Midwest and my health continued to fail while I pursued diagnosis. By April it was determined I had CRPS. I was referred to a Physical Medicine and Rehab doctor who has put me through a series of lumbar nerve blocks.

In the meantime I decided to try to keep meds to a minimum and follow Roger’s protocols. I am on LDN and Dibenzyline (a vasodilator that also blocks nerve pain) at a VERY low dose, and several supplements I feel are helpful after extensive research. Four months ago I could not walk, cook for myself, drive a car or really take care of myself at all. I have developed my own PT protocols and now am walking two miles/day, have nearly a normal daily life, and am back to looking for work. In fact, three days ago I made an overnight road trip on my own through two states for a job interview without any CRPS ramifications.

I don’t know if the blocks have anything to do with my progress…they have certainly not been a silver bullet. If anyone is interested in hearing the details of my therapy routine I’d be happy to share. In the meantime I continue to journal my progress and listen to my body. I believe that you CAN FULLY RECOVER and I intend to. I have read blogs from naysayers that claim the best you can hope for is remission for a few years. I chose not to buy into that.

Ness and Roger are my heroes and my inspiration. I hope my story and progress can help someone else in the future. I’m glad to have found this forum and hope to become an active (and useful) participant!

Hummerfriend,


Thank you for your post. So many of us have similar stories, we know there is something very wrong, but no one listens to us until we are at the chronic stage.

Could you share the supplements you use?

I am going to research the difference between garabentin and dibenzyline. I am taking the former and LDN, a combination I hope will help me, but if dibenzyline has better properties to help I am interested.

My leg is atrophied to the bone, too. I can't bear to look at my legs, they are slightly swollen at the ankles and my calf definition is gone. I have a big egg sized lump on the CRPS ankle. The PT says it is swelling, but I think it is something else. I have had stomach problems since this started.

Could you share your exercise protocol? I have been on crutches since March. I started PT and started taking LDN two weeks ago. It is too early to tell if it is helping me, but my husband thinks it is, because I just started being able to walk up the stairs almost normally, holding on to both railings. I had been sitting dragging myself up and down. Also my RSD foot is a few degrees warmer than my non-RSD foot.

Hi there,
**
The main supplements I take are Vit C, N-Acetyl Cysteine, Alpha Lipoic Acid, and Acetyl L-Carnitine.

My exercise protocols have morphed over the last few months. I transitioned from crutches to a cane in March and then weaned off the cane as soon as I could. I began by literally walking laps around my mom's yard because I couldn't get too far away from the house lest my legs go out. I also could not tolerate walking on pavement...so I started with 3 yard laps 4x/day. I added laps and eventually transitioned to walking on the street. I now am up to 4 laps that are 6/10 mile each on the street and just tonight bumped the last lap up to 7/10. Each time I add distance it is first only to my last lap of the day. Then the second to the last lap and so on until all four laps are at the new distance.

In addition to walking I taught myself to juggle. Yup--juggle. I read several studies where learning to juggle increases not only grey matter, but white matter (neuroconnections). If it isn't helping rewire my brain, it certainly helped me get my legs and ankles stronger. When I began (beginning of April) I could not stand in one place for more than a few moments. Now I do four rounds of 15 minutes each every day. That's a full hour of standing and shifting my weight from leg to leg.

I also use hypnosis downloads every day. There is an awesome website out there that has a session just for CRPS patients. I use the CRPS session, another one for Renauds Syndrome (which I now have in both feet) and another one for facial tics (CRPS has given me a mean right eye tic) and additional ones for pain management and muscle spasms. These have helped tremendously.

In addition I soak every night for 20 in epsom salts. I have cold CRPS and found this has been a tremendous help not only in stabilizing the temp in my left leg, but also fighting off muscle soreness from all the walking.

Informally, I found that yardwork (of all things) seems to produce the most improvement. It's an organic task that utilizes the whole body, stabilizer muscles, balance, etc. When I began in April I could only hobble to a raised bed and sit on a stool and try to pull one weed at a time with one hand while supporting myself with the other. I was so sick and weak I could only do this for a few minutes. Now I'm weedeating the whole yard weekly, and pruning, watering, planting, trimming, etc, every day. It may sound silly...but I think the yardwork has been the biggest help of all.

I have experimented with lots of other things, like tossing a ball up in the air to myself in the yard and trying to catch it. Some things have worked, others not so much. I have also found that my body tells me when I need to change something up even if it's been working for a while. That is the key for me: listen to my body.

I hope this helps...let me know if you have any other specific questions. I'm usually pretty private, but I know how hard it is to find information on successful ideas to try!

Welcome Hummerfriend,

It sounds like you have certainly found things that are moving your recovery forward! Congrats on that, it takes a lot of trial and error. I agree that a positive attitude and slow, deliberate, incremental exercise make a huge contribution to improving ones life with this disease.

You were fortunate to have an injury that did not require surgery or hardware. That certainly adds a layer of complexity and things are never quite the same even after the most beautifully executed procedure. I think it is easier for the body to get back on track without those challenges. Even with them it is still possible to make tremendous progress.

Your medication regime is extremely progressive and I am curious how this came about. Many of us have had difficulty finding someone to prescribe LDN and you are the first poster I have seen write anything about Dibenzyline (phenoxybezamine). I was very surprised by this. It is recommended by Dr. Stanton-hicks of Cleveland Clinic but is almost impossible to get. There is no generic currently in the states and I found brand priced at upwards of $3000.00! This non-competitive alpha blocker helps calm injured nerves because once nerves are injured they sprout extra adreno receptors which makes them more hypersensitive and reactive to temperature etc. Studies on it are quite good. I ended up ordering some from overseas but have not taken it. It is in my back pocket so to speak.

How on earth did you find a PM who prescribed these meds? Are you in the US or elsewhere? Wow is all I can say, you lucked out!

Keep up the good work on your recovery! With your youth, ongoing work and surprisingly different medical care you are sure to beat this thing.

i'm so glad you are doing better with your rsd. i've read several posts about people recovering from rsd today and am so happy that there are people with rsd who are feeling better. i've learned alot about rsd throughout the five years i've had it between living through its pain and learning about it from people on this forum and drs websites. from what i've learned is rsd is not cureable yet, but it can go into remission. that doesn't mean they are cured because rsd can come back again. hopefully someday a cure will be found.
i also believe that a positive outlook is also important, but rsd is not an illness of the subconscious. it is a physical illness and though being positive is important the need for medication sometimes from a dr is also necessary for some people in helping to manage the constant horrific pain that rsd causes them. i do hope that all of you who feel you are cured stay that way. and i hope that all of you who think that the subconcious can help cure rsd have it really happen.
i just wanted to express my opinion on the difference between being in remission and being cured,and the difference between subconscious (mental) illness and physical illnesses. i value and respect all of your input and think we all learn something from each others experiences.
i don't mean to be a downer but after living with illness for five years and going through alot of horrific surgeries and pain, i felt i need to express the realities of my version of rsd. that's not to say thats how everyone else will experience it, it's just my experience with it.
i hope you keep feeling better every day. i hope we all do. and i hope most of all a cure will be found for this incredibly constantly painful and still so misunderstood physical disorder of the sympathetic nervous system.
soft hugs and warm thoughts to all.
__________________

http://www.hindawi.com/journals/arp/2013/978615/

Info about dibenzyline


http://www.prasco.com/index.php/pras...f-dibenzyline/

This link indicates that there is a generic here

Thanks BB,

I looked into this early this year and just re-checked the Prasco website. There is licensure for dibenzyline generic but no production yet, so far as I can tell. Multiple phone calls failed to locate it back around Feb-March and the Prasco site does not have it listed today as a product under any category or name. Only the "announcement".

I was interested in the oral sympathetic block because I am just personally leery of doing LSB. It would be nice if this drug was available to us at a reasonable price. It is an old drug and no reason to be sky high except that it is used infrequently, mostly in hospital settings for total, irreversible alpha block before procedures for a super rare condition.

I wonder what halted production.

I also use hypnosis downloads every day. There is an awesome website out there that has a session just for CRPS patients. I use the CRPS session, another one for Renauds Syndrome (which I now have in both feet) and another one for facial tics (CRPS has given me a mean right eye tic) and additional ones for pain management and muscle spasms. These have helped tremendously.

Glad to hear that yardwork helps - heaven knows there's enough weeds out there to keep me busy for about a decade. What I really want to know about is the hypnosis downloads - can you give us a hint about who/where to look for those?
Thanks again for all your positive and helpful suggestions!!