Advice Needed, Just Diagnosed with CRPS
 

Hello, I have read through some of the threads after finding this forum. I am guessing this will be moved eventually to the introduction thread, but I have some important questions and hope the community here can help me. Here is my story:

On September 14th of this year I was shot in the leg at close range with a 9mm handgun. I sustained a broken femur in which I had surgery and a rod was inserted in to my leg to repair the fracture. Previous to the surgery I had ZERO movement in my lower leg, after the surgery I still had no movement in my lower leg and had foot drop. They said I had Peroneal Nerve Dysfunction and with PT and time I would most likely regain movement and feeling etc. I spent about 1 week in the hospital and was released still with no movement in my lower leg. A few days after my release I was able to move my toes and now (today) I am able to raise and lower my foot, move my toes up and down with some individual digit function and slightly spread them. This is still limited compared to my other foot but great so far. I have been going to Physical Therapy 3-4 times a week and accupuncture 3-4 times a week. I visited the Pain management clinic and the perscribed me the standard Gabapentin, Naproxen & Amitryptyline (They began to wean me off of the Oxycodone I was originally prescribed)

So here comes the issues, about 3 weeks ago it seemed like the pain in my lower leg had started to increase, and was getting alot of active shooting pain and some color changes. I was having super sensitivity and I was not sleeping. I was told that this was normal due to the nerve damage and I should expect this as the nerves are mis firing & "re-connecting". So 2 days ago (Oct. 21st) I re-visited the pain management clinic and informed them of how much pain I was in and that it had increased substantially, I couldn't sleep more than an hour at a time and it was ruining my life. I removed my foot from my shoe and showed them, as soon as it was taken out of my foot drop brace it turned bright red and my toenails appeared odd. The Dr. was pretty quick to the announcement of CRPS (which I had no idea what that was) and wanted to schedule a Sympathetic Plexus Nerve Block (which I am scheduled for this coming Tuesday). After getting home and looking up what this actually is I am terrified!

I want give a little information about myself I am a 31 year old male in great physical condition (former professional athlete). I have sustained many injuries throughout my life and have always recovered properly. So I guess the advice I need is to the following questions.

-Is the Nerve Block a good step to take right off the bat?
-Since this seems like it has been diagnosed early can I expect to have better results in management or remission?
-How can I prevent this from spreading anywhere else in my body?
-What are some of the life changes I should expect?
-Since the pain in in my foot and ankle what is the best home relief remedy that has worked for you?

Thanks!

It is nice to meet you. I am truly sorry for your diagnosis. Crps is different in everyone. Early diagnosis key and so is aggressive treatment. As with everything the more you know the better decisions you will make. As far as your life being affected it is a given. Do your best to stay as active and normal as you can. I know it is easier said than done. You will learn what you can and can not do and then you will adjust. It takes time it does not happen over night. Unfortunately CRPS does spread, with me it seems like it spread quickly. In some people it spreads quickly and some I read that it takes a while. There are a lot of wonderful people here that know more than me. I am still relatively young in this. I fell back Dec. and was diagnosed in March. Ask questions here and someone will be along to help offer some suggestions. I wish you the best in your decision to do the nerve block or not. Again the more you know the better decisions you will make.

Hello Dan,

I am so sorry to hear about your injuries!!

I remember that same terrifying feeling when I was first diagnosed and started reading about it, and there isn't much I can say to ease this but, please try to think of it more as an obstacle "that you will not let it beat you, you will beat it or overcome any challenges it presents in your life going forward".

If they are doing the blocks so that you are able to do more physical therapy then yes, do this. However if they are just doing the blocks to help you with pain then that really isn't going to do you much good. With CRPS the benefit of any blocks comes if physical therapy is done at the same time. Not just formal PT once or twice a week but continuous physical therapy & desensitization on/off throughout the day. .. it was said to me early on that PT should be done much like the heart beats (it beats for a half a second and then rests for a half a second), the worst thing you can do for CRPS is being immobile or sedentary and the best thing you can do is keep that limb moving, desensitize to help alleviate at least some of the sensitivity and reduce guarding.

You are on great medications to start with but keep the communication open with your doctors about the dosages because often they start us out on a small dose (that isn't expected to work) and increase it slowly - however, with patient loads don't rely on your doctors to remember they needed to increase the dosage to a therapeutic range... they will likely forget. Side effects are also generally expected and unless they are life threaten often resolve over time - it is easy to give up during the adjustment cycle so keep that in mind and discuss these things with your doctor(s).

Yes, having early and aggressive treatment early should help. You mentioned being an athlete prior to this accident - having the mentality of an athlete will also help. Stay focused on how you will conquer whatever is in front of you and try hard not to focus on the 'what if's' or 'spread'.. focus instead on how to keep that leg moving and regaining strength. If you are near a pool.. start aquatic therapy as soon as you are cleared to do so. This will help the CRPS and also help your femur heal. Water walking is excellent for therapy!!

There really is no way to prevent spreading it may or may not spread. I would personally not worry about that today. Instead think about all the things you can think of to help you distract yourself from pain and rehab all of your injuries. Make a list of the things that helped you stay focused as an athlete. These should be things that you will later utilize on days when pain is so severe that nothing works.. then you can grab that list and it will help you cope and conquer. Movies, books and stories of all kinds of athletes that have done amazing things are some of the things on my list :) Sometimes I just conscientiously breathe slowly and imagine myself snow skiing on a deep powder day, reaching the summit of a mountain or crossing the finish line, surfing or whatever makes me happy. Though I can't do those things today due to CRPS, I will never give up...

I don't want to comment on 'life changes you can/should expect' as we are all individual in our pain perception and how it affects our lives so one could not predict that for you.. RUN your own RACE against this and don't let what you read or learn about CRPS dictate your outcome or define you. I would set firmly in your mind right now that you will not become a statistic and that your case or circumstance will be unique and one that doctors will write case reports on to help others because YOU are strong!!

What helps with the pain the most for me? Well it is not one single thing and not the same thing everyday but, here are a few of the things I rely on daily to get me through. Epsom salt soaks, lidoderm patches, recumbent bike, massage (on areas that are not affected by CRPS), mirror therapy, MMJ tincture, my dogs, pool therapy, moist heat, biofeedback, and a good care team.

I've rambled on a lot.. sorry. I hope this helps!!

Wishing you the best,
Tessa

focus on the positive
 

I also cannot sleep because of burning searing pain in my hip and down both legs from crps. I take temazepam every night and couldnt get any rest without it. Not sleeping makes me hurt everywhere. One thing that helped me deal with this when it first started was to reflect on my day and find something positive about it. Sometimes the best part of my day was something little like gee I'm glad the sun was out, or how great it felt to take a shower. Over time the positive moments get bigger n bigger, like wow i sat thru a movie and dont feel horrible. You are making some serious progress in phy therapy. Kudos for that.

Dan,

My background is similar to yours - except for the handgun element:eek: Damn. Also former athlete in "perfect health" prior to being diagnosed. My RSD was triggered from surgery for cartilage damage in my ankle. Symptoms and timeframe were similar to yours at your current juncture. I am fully recovered now.

-Is the Nerve Block a good step to take right off the bat?
See Zookester's answer on this. By the time doctors were pushing me for a lumbar sympathetic nerve block, I was already making progress healing on my own through an aggressive regimen. Any further invasive trauma had additional risks I was not willing to take relative to the progress I was already making. It benefits some people and causes spread in others.
-Since this seems like it has been diagnosed early can I expect to have better results in management or remission?
YES.
-How can I prevent this from spreading anywhere else in my body?
Boost antioxidant intake. I took 600mg of NAC 3x daily for 60-90 days. http://www.rsds.org/pdfsall/treatmen...ee-radical.pdf
-What are some of the life changes I should expect?
It will greatly vary on an individual basis. Use the same systematic focus you have honed as an athlete and apply it to the healing process. You will do well.
-Since the pain in in my foot and ankle what is the best home relief remedy that has worked for you?
Mirror therapy, visualization techniques, desensitization and massage, water therapy, and DMSO. Constant gentle motion. Narcotics gave me a 4 hour window to rock out on my regimen early on so I used that window as efficiently as possible for healing. Here's a link to everything I ever did that had a positive impact on the healing process: http://neurotalk.psychcentral.com/thread205597.html Some of it gets weird and I would've discounted at least half of it right off the bat if I was in your position 2 years ago. Open mind required.:)

Oh yeah - especially as a former athlete - visualize the sport-related things you did as vividly as possible and experience them fully in your mind - focusing especially on your leg being fully functional and @$$-kicking. This simultaneously helps relieve the pain by putting your mental focus elsewhere. That's literally all I did during countless insomniac nights.

And NO ICE.

Go make yourself some good luck my friend.

Welcome DanPain. :Wave-Hello:

Hi Dan,

CRPS isn't well understood. As such, if you want to know more i would recommend sticking to sources of information with high levels of trust such as journals, studies and renowned doctors. That being said here is my understanding:



Their are many kinds of "nerve blocks". They do seem to be the first step in treatment and many seem a reduction in symptoms from them.

Most sources indicate that the close to the onset you can get treatment (though i have yet to pin down which treatment) the better your prognosis. By how much and in what way, I don't know.

• I haven't seen any resources of indicating a way to completely prevent spread.
  How much and How often CRPS isn't well understood. With some studies indicating it happens rarely*1 and some suggesting its inevitable.*2
  Avoid Injuries, as they are correlated with spread to a new area.*4
  Avoid Ice, surgery and cast applications where possible*5
  

Very hard to say as I believe CRPs is a blanket diagnosis used to cover several subtypes*3, which display slightly different characteristics. This argument refutes the staging of CRPS.

I believe most people see a relief in the first year of symptoms probable due to treatments and then a slightly increase in symptoms on and off for the rest of their life. Then again, some studies suggest a lot of people are either healed or go into remission.



CRPS hasn't been well studied. Which and how much treatments work seem to be something of a mystery. People have seen improvements in anything from counseling to nerveblocks. *6
-------------------


Don't assume because i linked to these studies that i interpenetrated them correctly. Here is a great resource that was just published this year by the American Pain Society was: The Outcome of Complex Regional Pain Syndrome Type 1:A Systematic Review

*1 Complex regional pain syndrome type I: incidence and prevalence in
Olmsted county, a population-based study
Paola Sandroni*, Lisa M. Benrud-Larson, Robyn L. McClelland, Phillip A. Low

*2 Spreading of complex regional pain syndrome: not a random process
Monique A. van Rijn, Johan Marinus, Hein Putter, Sarah R. J. Bosselaar, G. Lorimer Moseley, Jacobus J. van Hilten

*3 Complex regional pain syndrome: are there distinct subtypes and
sequential stages of the syndrome?
Stephen Bruehl a, *, R. Norman Harden b , Bradley S. Galer c , Samu

*4 Spreading of complex regional pain syndrome: not a random
process
Monique A. van Rijn • Johan Marinus •
Hein Putter • Sarah R. J. Bosselaar •
G. Lorimer Moseley • Jacobus J. van Hilten

*5 SPREAD OF COMPLEX REGIONAL PAIN SYNDROME(CRPS)
H. Hooshmand, M.D. and Eric M. Phillips
Neurological Associates Pain Management Center
Vero Beach, Florida

*6 A Web-Based Cross-Sectional Epidemiological Survey of
Complex Regional Pain Syndrome
Amit Sharma, MD,* Shefali Agarwal, MPH,Þ James Broatch, MSW,þ and Srinivasa N. Raja, MDÞ

The studies to look at that best fit your scenario are for CRPS II or Causalgia since you clearly have nerve damage. CRPS I is less understood and more often misdiagnosed but, CRPS II requires objective (verifiable) nerve damage and as such, is better understood.

In my opinion the best information for treatment and info come from these doctors.

Dr. Silas Weir Mitchell
Dr. Hooshmand
Dr. Schwartzman

In addition to this there are two great YouTube videos done by Dr. Ian Carroll and Dr. Sean Mackey from Stanford University that you can find doing a simple google search - they are long but well worth the time!

Hm...

Not saying this is BAD advice HD - in fact I think all information is equally valuable and I definitely get a lot out of reading current medical literature. I just feel some personal dissonance with the phrase "high levels of trust" as applicable to current journals, studies, and renowned doctors. Caveat emptor.

So I had the lumbar nerve block today. I did feel a difference in pain and sensitivity but not all the way to my toes. After about 1 hour it was gone, thats all I got. They scheduled me next week Tuesday for an additional block.

I will continue to do my physical therapy, I was just approved by my ortho doctor I can start putting weight on my leg (25% this week). I had already been putting some weight on it but now I will go a little bit further. I will hit the pool every day. I am hoping I will the block next week will work better and for longer.

Visioniosiv regarding below
***Applied DMSO 50/50 mixed with vegetable glycerin to affected area 3-5x daily for 90 days***

I got some DMSO cream but it says it is for solvent purposes only?

There are lots of different types of DMSO creams/compounds you can buy online. I don't have personal experience with a premade cream so I can't comment on their effectiveness either way.

I bought pure grade, 99.99% DMSO online, and then diluted it to 50% using vegetable glycerin which I purchased at a health store. The gylcerin gives the resulting solution more cohesiveness and is easier to apply to the skin. You could apply it with a paintbrush but I just used my fingers.

The main advice I would give is 1) Wash your hands before and after usage, as DMSO IS very solvent and will carry any chemicals/etc on your hands directly to the bloodstream, and 2) the topical cream or solution applied should not exceed 50% DMSO. You could go 60-40 or 70-30, but that risks irritating the skin. I didn't have any issues with skin sensitivity, but like anything else, individual results can vary.

Besides being a free radical scavenger with anti-inflammatory effects, DMSO's solvency is what allows it to penetrate the skin and directly impact the affected area.

Oh - and the smell ain't particularly pleasant:) Kind of garlicky. It is absorbed by the body so fast I could taste it within seconds.

I understand the sentiment, my goal was to communicate to Dan that this is a confusing topic and he shouldn't be surprised or feel he is to blame when he gets conflicting reports, treatment options and advice.

Hi everyone, please excuse me for any mistakes I make while trying to post replies. I'm not all that familiar with posting on message boards (I know that sounds odd since we live in the age of technology).

Since this threat was already started and I didn't see the point in starting a new one based on the same context, I just wanted to say that I too have been recently diagnosed with CRSD and now the doctor wants to start doing injections. We are pretty sure the CRSD was triggered by a recent surgery of a bone in my foot, however after reading some of your posts and comments, I am beginning to think I have had CRSD for many years and didn't know it?

Anyway, these injections sound pretty scary. I wish you the best DanPain and hope you feel better soon. I would like to know if after your first injection, did you have any side effects? Like, extra swelling, tenderness, nausea, etc. It seem my body is "allergic" to just about anything made under the sun, including the sun, so I was just wondering exactly how uncomfortable are these procedures?

thanks,
sillychic


sillychic