Aside from the regular off- the -charts- pain in my foot/ankle/lower legs, what causes the terrible burning pain that engulfs both my feet and lower limbs, and sometimes my face, but especially the limbs.
What exactly are the physiologic, cellular causes? Chemicals released by tissue, neuro-vascular constriction....does anyone have info/insight into this wildfire so many of us experience.
Also what have you found to be most effective relief for it? Has anyone tried Neurogen, an over-the-counter topical oil?
Thanks for any info!!

Ready to move into an igloo ...or maybe dance with a snowman......
Hope4thebest xoxo

http://www.rsdsa.org/index2.html

I find a lot of information on CRPS here. I think it is on the information page on our site, as well.

Dew

It's the only thing that stopped the burning for me. Well, ok, it didn't totally stop it, but it made it bearable. I gave up on total pain relief some time ago.

I've had RSD since 2001. I have not had much burning with it, until recently. About a month ago, it spread down my arm into my hand, and now I am having the burning. It also tingles like it is in a big vat of 7-up.

I found that the "RSD cream" that my doc has compounded for me works pretty well for the burning. It has lidocaine, ketamine, gabapentin, baclofen, amytriptolin, and a couple more things. (pardon spelling on meds) I am sure I have posted the "recipe" on the forum before, but if you want it, I will look it up. Doesn't help much with the deep bone pain though.

Jules

Dear hopeforthebest -

I can't say that I understand it in all it's detail, but the small-fiber neuropathy theory championed by Anne Louise Oaklander, MD, PhD, appears to do a nice job with the burning pain question. And even though, as supposed theory on the verge of ending all theories, it doesn't attempt to explain how it is, given the sheer breath of the theory, that "secondary central nervous system changes" may still be required to "perpetuate pathology" - or if so it did it shot right by me - I commend the full text for your attention. I am happy send it to you and anyone else who PMs me with their email address, where it's not up on the RSDSA site and is too big to post here:

"Is reflex sympathetic dystrophy/complex regional pain syndrome type I a small-fiber neuropathy?" Oaklander AL, Fields HL, Annals of Neurology, Vol 65 No 6 June 2009 pp. 629-38.

Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA 02114, USA. aoaklander@partners.org

Neurologist S. Weir Mitchell first described "causalgia" following wartime nerve injury, with its persistent distal limb burning pain, swelling, and abnormal skin color, temperature, and sweating. Similar post-traumatic symptoms were later identified in patients without overt nerve injuries after trauma. This was labeled reflex sympathetic dystrophy (RSD; now complex regional pain syndrome type I [CRPS-I]). The pathophysiology of symptoms is unknown and treatment options are limited. We propose that persistent RSD/CRPS-I is a post-traumatic neuralgia associated with distal degeneration of small-diameter peripheral axons. Small-fiber lesions are easily missed on examination and are undetected by standard electrophysiological testing. Most CRPS features-spreading pain and skin hypersensitivity, vasomotor instability, osteopenia, edema, and abnormal sweating-are explicable by small-fiber dysfunction. Small fibers sense pain and temperature but also regulate tissue function through neuroeffector actions. Indeed, small-fiber-predominant polyneuropathies cause CRPS-like abnormalities, and pathological studies of nerves from chronic CRPS-I patients confirm small-fiber-predominant pathology. Small distal nerve injuries in rodents reproduce many CRPS features, further supporting this hypothesis. CRPS symptoms likely reflect combined effects of axonal degeneration and plasticity, inappropriate firing and neurosecretion by residual axons, and denervation supersensitivity. The resulting tissue edema, hypoxia, and secondary central nervous system changes can exacerbate symptoms and perpetuate pathology. Restoring the interest of neurologists in RSD/CRPS should improve patient care and broaden our knowledge of small-fiber functions.

PMID: 19557864 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

For a couple of earlier papers on the same topic, that are available in full text, but may be less nuanced than the most recent effort (in particular the assertion in Dr. Oaklander's editorial that all observed changes in the brains of CRPS patients are simply adaptions to pain, where Apkarian's lab at Northwestern has fairly convincingly shown that a number of different but disabling pain conditions have totally different profiles in the MRI tube) see:

1. The truly groundbreaking: "Evidence of focal small-fiber axonal degeneration in complex regional pain syndrome-I (reflex sympathetic dystrophy)," Oaklander AL, Rissmiller JG, Gelman LB, Zheng L, Chang Y, Gott R, Pain 2006; 120: 235-243, full text at http://www.rsds.org/2/library/articl..._pain_2006.pdf, and

2. "RSD/CRPS: the end of the beginning," [Editorial] Oaklander AL, Pain 2008 Oct 15; 139(2): 239-40, a copy of which is attached.

Mike

ps As intitially posted, I said that the most recent article, "Is reflex sympathetic dystrophy/complex regional pain syndrome type I a small-fiber neuropathy?" did not, as far as I could see, provide "an explicit tie-in with much of what's known from a neuro-immune angle." As they say in the world of statutory interpretation, the firsst rule is "read" and the second rule is "read on." Only in my case it should have been, read again. Here's what appears in the article, along with the matching footnotes:

Small-fiber axonopathies can produce other aspects of inflammation as well. Plasma extravasation produces intraluminal hemoconcentration that promotes adhesion and diapedesis of white blood cells. Neuropeptides released from small-fibers also directly recruit and activate immunocytes including lymphocytes, macrophages, and mast cells. Their cytokines amplify local inflammation and can sensitize nearby primary afferent nociceptors in a vicious neural-immune cycle. Tryptase, a mast-cell–specific product, is increased in CRPS-I–affected skin,33 and proinflammatory cytokines are increased in tissue fluid34 and serum35 from CRPS patients and patients with painful SFPN. [p. 633]

Footnotes:

33. Huygen FJPM, Ramdhani N, van Toorenenbergen A, et al.
Mast cells are involved in inflammatory reactions during Complex
Regional Pain Syndrome type 1. Immunol Lett 2004;91:
147-154.
34. Huygen FJ, De Bruijn AG, De Bruin MT, et al. Evidence for
local inflammation in complex regional pain syndrome type 1.
Mediators Inflamm 2002;11:47–51.
35. Uceyler N, Eberle T, Rolke R, et al. Differential expression patterns
of cytokines in complex regional pain syndrome. Pain
2007;132:195–205.
36. Uceyler N, Rogausch JP, Toyka KV, et al. Differential expression
of cytokines in painful and painless neuropathies. Neurology
2007;69:42– 49.

And while I have removed my caveat, I would be more comfortable had the article provided authority for one key sentence from the saving paragraph, which may for all I am aware be generally understood by those in the know:

Neuropeptides released from small-fibers also directly recruit and activate immunocytes including lymphocytes, macrophages, and mast cells.

And what's bizzare is that when I run a PubMed search on neuropeptide "small fiber" I get 13 or 14 hits (depending on whether neuropeptide is singular or plural and none without the internal quotation marks around small fiber or if the term is hyphenated) but if I then add ANY of the words immunocytes, lymphocytes, macrophages, OR mast cells (or the singular thereof) the search result drops away to zero, not even picking up the article from which the sentence is taken.

Nor does a Google search of "small fiber [or small-fiber or "small fibre"] neuropeptides immunocyte lymphocyte macrophage mast cells" produce any results where the words small fiber are linked together, even though they appear first in the search sequence. Any thoughts?

Attached Files

RSD-CRPS The end of the beginning [Oaklander editorial].pdf (58.3 KB, 593 views)

Hopeforthebest:I know just what you are talking about regarding the burning sensation. When I lay down at night it gets so bad that I can hardly put my left foot down to touch the sheets without my foot burning so bad that all I what to do is scream! I have tried just to let my foot just hang off the side of my bed however when I do that all the blood just russhes down there and makes it burn more! The ony thing that helps me out that I bought at Walgreens is called Aloe Vera cooling gel with Pain Relieving Menthol.The great thing is you can get two tubes of them for five dollars. I hope you will at least give it a try. All the best to you! Always Breezy55

I've got to give that a try.

How did the doc happen upon the idea for the mix? Sounds promising.

How long does your cream work? It is clear-colored? Does it stain your clothes? I would really appreciate a copy of your recipe so that I can ask my PM doc to write me a script.

I currently use Voltaren gel for the pain and burn that I get on my lower right leg and on the back of my head and neck (I rub it in on my hair,which is pretty short, and then try to comb it out gently so that you can't tell that it's there). It works for a little while, but I need to re-apply it often. I also put the Voltaren on my forehead and other parts of my face that are starting to hurt a lot. Anywhere that I can't put one of my Lidoderm patches.

Thanks and take care, Sandy

As prewritten by others above me,,there are creams of all sorts to use ,lidoderm patches were given to me,,ive not used them,,i find that after exercise is what inflames me the most and theres something about evening time[4-6pm] that is a trigger even without exercise,,others here have mentioned it too,,,The main medicine that helps me when i burn and am inflamed is xanax,,it works well for me, and staying in prayer with the lord,,,he is the great physcian,,,,,,,,,,,,,,,,,good luck and let us know on your updates,,,,,,,,,,,,,,,,bobber