Complex Regional Pain Syndrome

[Parsad]

You guys are a resource for me on various subjects, not just investing, so I thought I would just seek some answers.  Does anyone on here suffer from, or know someone that suffers from, CRPS (complex regional pain syndrome)?  The daughter of one of my friends suffers from it, and I was just checking to see what you know, how people deal with it, and any new treatments that may have been tried.  Cheers!

[dcollon]

Sanjeev,

 

I'm familiar with the problem, because my daughter has been struggling with ankle pain over the last 3 years.  I'm certainly not an expert, but would be happy to share our experiences/what we've learned.

 

Feel free to get a hold of me offline if you want.  I'm around all day tomorrow.

 

 

 

[mloub]

I am not an expert on this condition, so please think of these comments as only general musings. While I was a Resident, however, I did spend some time working with a Surgeon who dealt with this condition quite a bit.

 

As you probably already know it involves the dysfunction of a nerve - usually after a minor trauma to the nerve - that results in a hyperalgesic (pain out of keeping with the stimulus) response to the affected area. There seem to be varying degrees of the condition and in the worst cases the affected area becomes discolored and cool, and can be so sensitive to the touch that folks can feel even light touches as excruciating pain.

 

There are some medications that are specifically intended to target pain from malfunctioning nerves (neuropathic pain), and these tend to be tried first, but they can be of little benefit to people with the worst forms of complex regional pain syndrome, which also goes by the name reflex sympathetic dystrophy just to complicate things needlessly.

 

The Surgeon I worked with performed a relatively new type of procedure where he would implant spinal stimulators to try and relieve the pain of those with the worst form of the condition. These stimulators would activate the sensory part of the spinal cord corresponding to the patient's site of pain and replace the pain with a sort of buzzing sensation, which in theory patients would find more tolerable. The whole thing was meant to work on the gate theory of pain - the idea that essentially we can only really feel any one thing at a time and when subjected to multiple sensory stimuli we tend to block some out.

 

As I recall, and this was about 5 years back, there weren't any large studies that validated this treatment. The condition itself is so rare, it would probably be very hard to study it in large groups.

 

Of the folks I saw who had the nerve stimulators implanted (4 or 5 patients), some had a great response, while others noticed no improvement. All of them were usually at their wits end by the time they saw this surgeon and were willing to try just about anything. And of course as with any procedure, I would recommend asking a Surgeon what their individual rates of success and complication rates were.

 

I hope these general comments are helpful. Feel free to send me a personal message if you had any specific follow-up questions.

 

M.

 

 

 

[Parsad]

Thanks for the information guys!  Much appreciated.  Mloub, they finally have one of the best specialists in Vancouver looking after her, so he is taking things one step at a time, progressing to different treatments when one fails to work sufficiently.  Surgery is an option, but one he suggests should be examined after all of the non-invasive treatments have been tested.  Will pass on the information regarding the spinal stimulators.  Currently they are trying localized pain medications and physical therapy.  Cheers!

[twacowfca]

What's the approximate locus of the pain?  That might be important.  Was there trauma in the affected area?  If so, please describe if possible.

[Parsad]

Hi Tim!  Left foot around the instep.  She fell on an icy sidewalk last winter, hurt her foot, and slowly the pain and sensitivity progressed over the next six months.  Cheers!

[twacowfca]

Hi Tim!  Left foot around the instep.  She fell on an icy sidewalk last winter, hurt her foot, and slowly the pain and sensitivity progressed over the next six months.  Cheers!

 

That area is the most exquisite biomechanical machine in the body.  The pain described may be related to trauma to the ligaments, tendons and fascia around the arch rather than neuropathy per se, but it's not wise to second guess her physicians.  A second opinion by another physician who specializes in treating musculoskeletal pain in a different way might be helpful.

 

There are two philosophies of treatment that could be considered.  One is to relieve the pain through treatments affecting the nerves in the area or through surgery.  This isn't always completely successful.  The other is to assist the body to restore  normal function.  There is a simple treatment called prolotherapy  that is often highly successful in similar situations.  A group at The University of British Columbia in Vancouver  has had an amazing track record using this therapy for Achilles Tendonitis.  Perhaps your friend might contact them and see if they think prolotherapy might help his daughter.  There is also a physician in Chicago, Ross Hauser, MD who specializes in prolotherapy.  He's the best there is. See caringmedical.com  :)

 

    Frank (Tim's out today)

[Parsad]

Hi Tim!  Left foot around the instep.  She fell on an icy sidewalk last winter, hurt her foot, and slowly the pain and sensitivity progressed over the next six months.  Cheers!

 

That area is the most exquisite biomechanical machine in the body.  The pain described may be related to trauma to the tendons and fascia in the arch rather than neuropathy per se, but it's not wise to second guess her physicians.  A second opinion by another physician who specializes in treating musculoskeletal pain in a different way might be helpful.

 

There are two philosophies of treatment that could be considered.  One is to relieve the pain through treatments affecting the nerves in the area or through surgery.  This isn't always completely successful.  The other is to assist the body to restore  normal function.  There is a simple treatment called prolotherapy  that is often highly successful in similar situations.  A group at The University of British Columbia in Vancouver  has had an amazing track record using this therapy for Achilles Tendonitis.  Perhaps your friend might contact them and see if they think prolotherapy might help his daughter.  There is also a physician in Chicago, Ross Hauser, MD who specializes in prolotherapy.  He's the best there is. See caringmedical.com  :)

 

    Frank (Tim's out today)

 

Hi Frank!  They originally saw a specialist at UBC, but now are with supposedly the top specialist in Vancouver at St. Paul's Hospital.  I will pass along the information, as I don't know exactly what treatment they tried at UBC.  Thanks very much!

 

[mloub]

Sanjeev,

 

I wish her the best of the luck. It sounds like she is in great hands. With these relatively rare conditions, it is almost certainly best to be treated by one the few dedicated specialists who have the most experience both with the diagnosis - which as twacfa alluded to can be very hard to make - and the many evolving treatments. It is nice to hear she has found someone like that.

 

M.

[Parsad]

I have to thank everyone for their responses!  I was perfectly correct in my assessment of this board's base of knowledge.  I'm quite surprised how quickly and expansive the responses were, both in reply posts to the thread, and private messages sent to me.  I will forward all the information to her family.  Cheers!

[hundredwaters]

Try high(er) dose vitamin C, transdermal magnesium, and a skilled practitioner of Frequency Specific Microcurrent.

[hundredwaters]

Also - i would anything like prolotherapy (re other post)... its possible Platlet Rich Plasma would be beneficial, but i would hazard its more likely to be harmful