[Cricket183]

Well I really did a number on myself. Last Sunday morning at about 3:30am we arrived home from vacation in Colorado. As I was stepping out of the van, I didn't realize that my father-in-law had parked so close to ditch in our front yard, and I fell twisting my ankle and then landing on it. In the process I managed an avulsion fracture of the malleolous (ankle) and ruptured 3 and possibly a fourth ligament in the joint. Right now they have me in a walking boot and in 4 weeks they will check to see how well it is healing and go from there. I asked the orthopedist what the likelihood was that the RSD/CRPS would spread to that area, and unfortunately he said very high. I am on high dose Vitamin C hoping that maybe it will keep the RSD from spreading. It's the only study I have seen that has any promise at all of working. My legs are the only area my RSD has not spread as of right now. . If anyone knows of any other ways to prevent spreading please let me know. I would greatly appreciate it.

Cricket

[AintSoBad]

Cricket,
I'm so sorry for you....

Please, don't blame your FILaw...

You must be ultra careful, and, if it's going to spread, chances are it will..

I've had rsd since 83. It has gone everywhere it possibly can.

We grow to accept. Ask not who to blame. OK?
There is no one!

Accept, and fight!

I wish I could tell you more, but, others here will!

I've been in a 'down' mood for a few months now. Personal things in my life.

But, I wish YOU the Very Best!

I'm sorry, so sorry, I couldn't help more than this....

But, you are cared about!

Pete
asb

[fmichael]

Dear Cricket –

If the orthopedist is saying the change if spread is “very high” that should be your first clue to have a good pain management doctor involved now!

If you don’t have a good pain specialist, I would suggest going to the search engine maintained by the American Board of Pain Management, the group which accredits all pain management fellowships in the U.S., and in contrast to another certification program only certifies doctors who have completed a fellowship in pain management (along with some grandfathering in of unquestioned experts in the field who came up before pain management fellowships were in place) and sat for and passed an 8-hour written exam. http://www.association-office.com/ab...dir/search.cfm The search engine allows you to search by “specialty of origin,” e.g., the area in which the doctors completes their residency. For CRPS/RSD I would stay away from physiatrists, with my first choice being neurology and anesthesiology a close second. Psychiatry is okay too. But the physiatrists (who may be great for lower back pain, etc.) did not in my admittedly small sample have a handle on CRPS.

You say that you are in a “walking boot” for four weeks. Is this a cast or an actual boot you can take off when you bathe or even sleep? The reason I ask is that my CRPS set in both ankles when they were cast to allowing my peroneus brevis tendons to “rest” after they were chewed up pretty badly through the repeated use of a machine at the gym. (On which I had been placed and supervised by a personal trainer.) And we all know that immobilization and CRPS are not a good combination. See, The Natural History of Complex Regional Pain Syndrome, Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain.2009;25: 273-280, at 274, FULL TEXT @ http://www.rsds.org/2/library/articl...lexanderGM.pdf (in a sample of 656 adult patients with CRPS of at least 1-year duration 77.6% listed an injury as the precipitating cause of their CTPS, and of those 50% had their extremity immobilized after the injury); [and] Epidemiology of complex regional pain syndrome: a retrospective chart review of 134 patients, Allen G, Galer BS, Schwartz L, Pain 1999 Apr; 80(3):539-44 at p. 541, FULL TEXT @ http://www.rsds.org/2/library/articl...r_schwartz.pdf (47% of patient charts mentioned a history of physician imposed immobilization by cast or splint, having a mean duration of immobilization of 3 weeks and a range of 1 -24 weeks).

Accordingly, if you are immobilized 24/7, I would “run not walk” back to the orthopedist to consider what would be literally more flexible alternatives.

That said, there is good news in the picture. Which is that, quite simply, RSC/CRPS cannot spread to a cite of a new injury without neuro-inflammation at that point, on account of which a recent study while seeking individuals with “long-standing, refractory CRPS” was nevertheless restricted to persons who had either had stable RSD for a period of 6 – 30 months or seen spread to a non-contiguous area within the preceding 30 months. Intravenous Immunoglobulin Treatment of the Complex Regional Pain Syndrome: A Randomized Trial, Goebel A, Baranowski A, Maurer K, Ghial A, McCabe C, Ambler G, Ann Intern Med. 2010;152:152-158 at 156, FULL TEXT @ http://www.rsds.org/2/library/articl...rnMed_2010.pdf

Our results suggest that immune mechanisms play an important role in sustaining long-standing CRPS, but the precise nature of the immune contribution or how it might relate to the putative central drive is unknown. Experimental models suggest that both peripheral and central glia-mediated neuroimmune activation temporarily sustain posttraumatic pain and an analogous augmented immune activation may play a role in CRPS. Intravenous immunoglobulin treatment may reduce this immune activation. [Citations omitted.]

So if the problem at hand is immediate immune suppression in your foot or ankle, at the very least, you should be speaking to a pain specialist about getting an IMMEDIATE, frequent and heavy duty series of lumbar sympathetic blocks, each packed with a good dose of cortisone – or its equivalent - along with the local anesthetic. Because even if blocks stopped working for you in the past there is - you may be certain - a brand new site of neuro-inflammation in your foot and ankle, on account of which an immediate course of steroid laden blocks may be of considerable value.

Of course it would be better if you could arrange for continuous regional anesthesia, where the brew would be pumped continuously into your foot and ankle, presumably on an in-patient basis. But outside of Walter Reed, I'm not aware of that currently being offered in North America, as much as I hope to be proven wrong. See, A Unique Presentation of Complex Regional Pain Syndrome Type I Treated with a Continuous Sciatic Peripheral Nerve Block and Parenteral Ketamine Infusion: A Case Report, Everett A, Mclean B, Plunkett A, Buckenmaier C, Pain Medicine 2009 Sep;10(6):1136-9. Epub 2009 Sep 9, FULL TEXT @ http://www.rsds.org/2/library/articl...n_Plunkett.pdf

Walter Reed Army Medical Center-Army Regional Anesthesia & Pain Medicine, Washington, DC 20307, USA.

Abstract
OBJECTIVE: To successfully treat a patient with complex regional pain syndrome, refractory to standard therapy, to enable a rapid and full return to professional duties. SETTING: This case report describes the rapid resolution of an unusual presentation of complex regional pain syndrome type I after four days of treatment with a continuous sciatic peripheral nerve block and a concomitant parenteral ketamine infusion. The patient was initially diagnosed with complex regional pain syndrome (CRPS) I of the right lower extremity following an ankle inversion injury. Oral medication with naproxen and gabapentin, as well as desensitization therapy, failed to provide any relief of her symptoms. She was referred to the interventional pain management clinic. A lumbar sympathetic block failed to provide any relief. The patient was diagnosed with CRPS I and was admitted for treatment with a continuous peripheral nerve block and parenteral ketamine. CONCLUSION: This case suggests therapeutic benefit from aggressive treatment of both the peripheral and central components of CRPS.

PMID: 19744217 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19744217

AND

Glucocorticoid inhibition of neuropathic limb edema and cutaneous neurogenic extravasation, Kingery WS, Guo T, Agashe GS, Davies MF, Clark JD, Maze M, Brain Res. 2001 Sep 21;913(2):140-8:

Department of Functional Restoration, Stanford University School of Medicine, Stanford, CA, USA. wkingery@stanford.edu

Abstract
Sciatic nerve section in rats evokes chronic limb edema, pain behavior, and hindpaw hyperalgesia, a syndrome resembling the complex regional pain syndrome type II (CRPS II or causalgia) in man. Glucocorticoids such as methylprednisolone (MP) have been used as analgesic and anti-edematous agents in patients suffering from CRPS, and interestingly these therapeutic effects appear to persist in some patients after stopping the medication. Similar to the CRPS clinical response to glucocorticoids, we now demonstrate that chronic hindpaw edema in the sciatic transection CRPS model is reversed by a continuous infusion of MP (3 mg/kg/day over 21 days), and this anti-edematous effect persists for at least 1 week after discontinuing MP. Furthermore, there is a chronic increase in spontaneous protein extravasation in the hindpaw skin of rats after sciatic transection, similar to the increased protein extravasation observed in the edematous hands of CRPS patients. A 2-week infusion of MP (3 mg/kg/day) reduced spontaneous protein extravasation in the hindpaw skin by 80%. We postulated that increased spontaneous neurogenic extravasation resulted in development of limb edema in both the animal model and the CRPS patient, and that the anti-edematous effects of MP are due to an inhibition of spontaneous extravasation. Additional experiments examined the inhibitory effects of MP infusion on electrically-evoked neurogenic extravasation in the hindpaw skin of normal rats. MP inhibition was dose- and time-dependent, with an ED(50) of 1.2 mg/kg/day for a 14-day continuous infusion of MP, and a maximum inhibitory effect requiring 17 days of MP infusion (3 mg/kg/day). MP (3 mg/kg/day for 14 days) also blocked both capsaicin- and SP-evoked neurogenic extravasation, indicating a post-junctional inhibitory effect. Our interpretation is that increased spontaneous neurogenic extravasation in this CRPS model contributed to the development and maintenance of hindpaw edema, and that chronic MP administration dose- and time-dependently blocked neurogenic extravasation at a post-junctional level, thus reversing spontaneous extravasation and limb edema in this model.

PMID: 11549377 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/11549377

[To be continued . . . .]

[kathy d]

Cricket,
All I can say is pray, pray, pray! It is such a shame you fell but with our problems it is easy to do. One wrong move (as you well know) can be real bad for us. I guess I am lucky (if you want to call it that) because I have full-body RSD and if I bump into anything it won't spread! haha. Humor always helps me get through the day. I will keep you (as well as all my RSD friends here) in my prayers tonight. One thought I just had was to take Glucosamine. I was told by a few different doctors that it helps the cells heal faster. Keep us up to date on your progress.
Take care,
kathy d

[Cricket183]

Thank you all for your replies. I greatly appreciate it.
AintSoBad--I definitely do NOT in any way blame my father-in-law and I apoligize if I made it seem that way at all. I think the world of my father-in-law and he would never do anything to hurt anyone. I am sorry you are in a "down mood" right now. We have all been there. You are in my thoughts and prayers.

fmichael--I am in the type of walking boot that you can actually take off. That seems promising at least. I do have a very good pain management specialist who is also an anesthesiologist. It honestly had not occurred to me to contact him but I will in the morning and discuss the lumbar sympathetic blocks. Because as far as "long-standing, refractory CRPS"....I seem to fit their definition. I have been diagnosed for 4 years (symptoms for 5 years). It started in my right shoulder and arm. It did not spread for 1 1/2 years after I was diagnosed. Then it slowly spread over a period of 1 1/2 years to include everywhere (including internal organs) except my head/face and legs. I haven't had any spread for about a year now.

kathyd--I am praying and I thank you for your prayers (and humor!) too. As far as Glucosamine, I have been warned not to take it because of an allergy to shellfish.

Again, thank you all for your replies. I really appreciate you all.

Cricket

[Dubious]

Originally Posted by Cricket183

Thank you all for your replies. I greatly appreciate it.
AintSoBad--I definitely do NOT in any way blame my father-in-law and I apoligize if I made it seem that way at all. I think the world of my father-in-law and he would never do anything to hurt anyone. I am sorry you are in a "down mood" right now. We have all been there. You are in my thoughts and prayers.

fmichael--I am in the type of walking boot that you can actually take off. That seems promising at least. I do have a very good pain management specialist who is also an anesthesiologist. It honestly had not occurred to me to contact him but I will in the morning and discuss the lumbar sympathetic blocks. Because as far as "long-standing, refractory CRPS"....I seem to fit their definition. I have been diagnosed for 4 years (symptoms for 5 years). It started in my right shoulder and arm. It did not spread for 1 1/2 years after I was diagnosed. Then it slowly spread over a period of 1 1/2 years to include everywhere (including internal organs) except my head/face and legs. I haven't had any spread for about a year now.

kathyd--I am praying and I thank you for your prayers (and humor!) too. As far as Glucosamine, I have been warned not to take it because of an allergy to shellfish.

Again, thank you all for your replies. I really appreciate you all.

Cricket

The fact that you are not casted suggest that it is not an terrible break. Most fractures require immobilization otherwise you induce motion across the callous that will then heal with fibrous tissue instead of bone matrix. So you will get either a non-union or fibrous-union, neither of which serves you.

I would speak with you PM doc like, yesterday about possible sympathetic blocks in an effort to ward off spread. And in a hurry!!!

I am not sure glucosamine will expedite anything, wouldn't hurt, but you should check into glucosamine with any other binder than "sulfate." I seem to remember glucosamine HCL (??) as being a product not originating from shell fish.

[firegirl]

I'm so sorry to hear that you broke your ankle. I'm thinking of you & hoping that this does not cause any long-term RSD problems for you!!! Hope you start feeling better!!!

[lefty]

I am so sorry to hear that. I agree with AINTSOBAD, it can spread. I can't give

advice on how to stop it, because mine seem to have spread to an old three year old Hysterectomy wound. It started out in my left hand and arm.

God, I wish I could tell you something different. Only thing I can say is that prayer helps . And talking to all these good people here .

God Bless.
Lefty