Hey Gang,

So, I recently had another appointment with my pain management doctor and ultimately realized I ended up a bit confused (sometimes it's so hard, as they're in and out before you have time to ask the questions you need to). Anyway, I'm hoping some of you here can clarify things for me a bit.

The doc thinks that they've identified a nerve that is injured in my foot, which may have triggered the original CRPS and might be the cause for continued symptoms. Basically, he thinks I have a "traction" injury to my superficial peroneal nerve. As a result, the nerve is firing non-stop pain signals, which in turn has caused the slow evolution of CRPS (coldness, sweating, pain elsewhere in the foot unrelated to the nerve, pain in the other foot, etc).

He's going to do some diagnostic blocks on the peroneal nerve to see if it eliminates the pain. What I'm unsure of is what happens if that's successful. Does identifying the broken nerve mean they can operate on it, or burn it away, or silence it somehow and thus eliminate the CRPS? I'll totally take a little numbness or loss of sensation over the pain!

Anyway, here's hoping it's a good thing and that this might be a solution!

Also -- on another note -- I had the *best* day yesterday I've had in a long time. Feet felt really good all day. Then, of course, I get home to make dinner and after cooking a great meal for myself and sitting down to eat the pain comes on with a vengeance! Is it always this random, where you can gave good times and then bam, out of no where you're struggling to endure?

Hi,

Your situation all depends on the accuracy of the CRPS diagnosis. What I mean is if you were accurately diagnosed them surgery or any other attempt that would disrupt the nerve could cause much worse pain and symptoms. Once CRPS is in motion the general consensus among experts is not to do anything that could further cause trauma to that same nerve(s). I can personally attest to that horrible scenario because in my case CRPS caused by nerve damage during surgery was originally thought to be a nicked/trapped nerve. The recommendation prior to a thorough and proper evaluation by a neurosurgeon was to re-operate and sever the nerve completely unless it could easily be freed up from the scar tissue. I went ahead with surgery not knowing anything about CRPS and woke up to even more pain and in a much larger area than I had prior to surgery. Since then, it has gotten much worse very rapidly. On the other hand if you do truly have a 'traction injury' to the nerve then steroid injections with anesthetic could very well alleviate pain while the nerve regenerates. This process of regeneration could take quite some time but most studies do indicate that nerve traction injuries do heal. Have you been thoroughly and properly diagnosed by at least 2 well neurosurgeons who are well versed in CRPS II /Causalgia? Did they show you the nerve by ultrasound or MRN? Or did they diagnose the traction injury through diagnostic injections?

When did your symptoms start and for how long have you been suffering? This is all helpful information for the others who might chime in.

Glad you had a good day, those are rare with CRPS!

My advice... tread cautiously with regard to repeat surgery unless you are willing to take the risk knowing that if CRPS is present, that things could get much worse. If I could turn the clock back I would have pushed harder for a neurological consult and MRN prior to the surgery performed after the initial nerve damage occurred. All of my current doctors agree that the rapid/severe progression is a direct result of the second surgery. Please don't take one doctors opinion - My doctor was/is an expert in the field of hip trauma and I respect him for that 100% but he is not a nerve specialist and that was a detriment to me.

Wishing you the best,
Tessa

I recall several years ago a member on this site showed many signs of RSD. I do not remember all the details, but I think she suffered from pain for 1-2 years. She had surgery on her foot to release a trapped nerve. Her symptoms went away. So there is hope but take great heed to what zookester states.

Such great advice. Thanks Zookster.

I've been suffering for 15 months. My pain started after an assault wherein an individual broke into my house and I was forced to defend myself and fight him out of the house in nothing but my underwear. The fight progressed outside onto the street in front of our house, where my feet sustained a lot of damage as I grappled with / restrained the individual until the cops arrived.

The pain started about a month after in my right foot, but has now progressed to my left (it did so after about a month of pain in the right foot).

I've been diagnosed with sympathetically mediated pain by a pain specialist who sees a number of patients with CRPS. I also had the diagnosis confirmed by a podiatrist. I've had three sympathetic blocks in my lower lumbar on the right side, all of which eliminated the pain completely in my right foot for about 24 hours.

It was the podiatrist, however, that suggested the peroneal nerve injury, given the EMGs I had had previously didn't test that nerve + the MRIs I had were only of the foot, not the ankle. Furthermore, my symptoms started with pain on the top of my foot -- but progressed to involve the bottom as time went on. Also, my symptoms are much worse on my right foot, where I'm positive for "tinels" sign (parathesia when tapping the nerve).

Next up is diagnostic injections to see if we can knock the pain out by blocking that nerve specifically. If it works, I believe they'll then be looking into imaging / other diagnostic methods to determine where exactly the nerve is injured. Hopefully then they can find some sort of entrapment / scar tissue / something to fix up -- gosh that'd just be amazing.

Let me know if there's any other info you need. I have my first peroneal nerve block in two weeks (doc is going on vacation so I have to wait -- ugh!) -- here's hoping it helps.

In the meantime I'm stopping all exercise that involves ankle plantar flexion and just focusing on mellower stuff (walking,c cycling etc). I'm an athelete and have forced myself to keep exercising through all of this. It helps me control the symptoms, but they're now worried that I could be continuouslly aggravating a stretched nerve (I love to run and do crossfit -- yes, a CRPSer who does xfit -- I know, I'm crazy).

Oh also, side note -- I just started Gabapentin. I'm taking 300mg a night for the first 3 days, then ramping up to eventually 800mg 3x a day. I'm *really* hopeful this just gets the pain under control.

I'm young (28), single and in good health otherwise -- but this is really interfering with my life (I've stopped dating, and struggle to make it through every day).

I just need something to make it manageable. I want to make it through this!

Gosh, I am so sorry that this was caused by an intruder - that must have been extremely scary! You are brave to have fought him/her off.

So just to clarify regarding MRI's - MRI's don't really show nerves well enough to the untrained eye. MRNeurography use a different machine and the physician viewing the study are trained specifically for lesions involving even the smallest of peripheral nerves. Most doctors won't order an MRN but, it is worth getting if you are contemplating surgery.

It is said in numerous studies that there is 'spread' and then there is referred pain which can be confusing to both the patient and the physician in CRPS. I wonder if perhaps your left foot is experiencing referred pain rather than true spread? If that is the case then perhaps you may benefit from surgical decompression but only you can make that decision. It is such a difficult call to make.. Once you get the nerve block specifically to that nerve I am sure you and your doctor have more information to base that decision on.

Personally, I wouldn't stop your exercise routine as long as it isn't causing you a large increase in pain, that won't settle after resting. Figuring out your baseline will be helpful in determining how much you can push yourself. Movement is good for mobility, mind, spirit and pain coping. So much of fighting CRPS is mental so if you are able to continue to do what you already love then why stop? You will aggravate the symptoms but you won't cause further injury to the nerve by doing so. The reason people caution being aggressive with PT is that the PT itself will not 'cure' the problem and if it is miserable or agonizing for the patient then why torture them with continuous therapy that isn't going to cure it? However, in your situation if it is making you feel better while doing it and you can get a handle on your pain afterwards then by all means don't stop - in the long run it surely will help you mentally and physically. The added bonus is that this will help you sleep better, which is greatly needed for healing and recovery and something that is almost always affected with chronic pain.

Since you love crossfit/athletics and seem to be a determined type of person - determine yourself not to become a CRPS statistic, but instead be one of the small percentage of people who can continue as much of their normal life as possible for as long as possible. Having that king of attitude will carry you through many challenging days.

A great book to get your hands on is "Holistic Pain Relief' by Heather Tick, MD.

Take good care and let us know how your block goes,
Tessa

Toe:

Tough call dude.

Either way, studies say it takes 18-24 months for nerves to regenerate.

LOL I used to do crossfit/TRX training through ankle pain without being aware that I had a hole in the cartilage. If I would've woken up in general and then gone more low impact at that point, I would not have pushed myself to have chosen the surgery that caused RSD in the first place.

My thoughts: If you're having more and more good days, figure out the specific reason(s) why that is, and keep doing what you're doing. Raise the bar when you know you're ready. It's an exercise in really focusing, really paying attention.

If you find you are regressing, change one or two things MAX and monitor their effect. Otherwise you're urinating in the wind my friend

Above all go with your gut.