[nancyinLA]

Hi everyone....i'm the one that broke my left wrist & am 15 mos. out. The RSD has gone 2 my left foot. I have much pain but the swelling, discoloration, etc. has subsided. I'm still taking meds & seeing drs..... have any of u experienced just the pain???

[Dubious]

Originally Posted by nancyinLA

Hi everyone....i'm the one that broke my left wrist & am 15 mos. out. The RSD has gone 2 my left foot. I have much pain but the swelling, discoloration, etc. has subsided. I'm still taking meds & seeing drs..... have any of u experienced just the pain???

Hi Nancy, I can't say that my swelling and discoloration are gone; they are not. But I can say they are better immediately after stellate blocks. I get one about every 2-3 months when my symptoms degrade. It is then that I will start to get a more pronounced return of the visable swelling and discoloration. The worst was before the blocks, though. It's sort of a blend. Less swelling and discoloration shortly after blocks, worse everything increasingly over the ensuing 2-3 months.

BTW, I think I saw that you are in Santa Monica. I am also in the South Bay!

Take care

[nancyinLA]

Originally Posted by Dubious

Hi Nancy, I can't say that my swelling and discoloration are gone; they are not. But I can say they are better immediately after stellate blocks. I get one about every 2-3 months when my symptoms degrade. It is then that I will start to get a more pronounced return of the visable swelling and discoloration. The worst was before the blocks, though. It's sort of a blend. Less swelling and discoloration shortly after blocks, worse everything increasingly over the ensuing 2-3 months.

BTW, I think I saw that you are in Santa Monica. I am also in the South Bay!

Take care

thks 4 reply..... i'm in louisiana!

[Dubious]

Originally Posted by nancyinLA

thks 4 reply..... i'm in louisiana!

Oops. Well, that's just down the street from Santa Monica, isn't it? RSD must be distorting my memory and sense of geography!

[daniella]

I saw a couple doctors in LA when I was there though none I thought that highly of. I have some swelling but many times none and nothing others would comment on unless I point it out. You don't have to have all the rsd symptoms to have rsd. My pain is very high often times and my foot/calf/ankle looks normal. I still have rsd and pn.

[AintSoBad]

I went many years, over 20, before I got any real swelling, and even now, it's not so major, or occasionally in my feet in the summer...

It's not like you hafto have swelling to have pain, they're not interlocked.
They're both symptoms, and can be independent of each other.
When I did have swelling, it didn't increase the pain (necessarily).
Just my story.

pete

[fmichael]

Dear Nancy -

You've touched on what is probably the single biggest "mistake" in the treatment of RSD/CRPS in the North America today. In some countries in Europe (Germany for one) they wouldn't think of requiring a patient in tremendous pain consistent with CRPS to display "objejective indicators," because by the time they do, the odds are that the window has long closed on the most effective therapies: an agressive series of blocks of "low dose" ketamine infusions, both of which have been shown to be more effective in the acute stage of the disease, or what I am advised is the practice in Germany, pumping local anesthetic directly into the center of the pain for a period of hours or days.

And I use the word "mistake" advisedly. The insuance companies (WC and otherwise) are being penny wise and pound foolish. As one of the mods (sorry, I can't remember who) commented the other day, the reason why we don't hear about folks who got agressive treatment up front is that they aren't sick and consequently aren't on the boards. And it's a mistake rather than a conspiracy for one simple reason: the "present value" of paying for agressive treatment now is far greater than a lifetime of care, medical and otherwise.

IMHO, the most important thing that leading CRPS docs could do would be to publish an article to that effect in a leadinging medical journal of general circulation (JAMA or NEJM) so that word could get out to non-pain specialists to immediately refer patients with severe and unexplained pain to a pain specialist.

What I do know is that in my case, after being diagnosed with sympathetically maintained pain, following a positive response to bilateral lumbar sympathetic blocks, I managaged through a family connection to get an appt. with one of the Mayo Clinic's leading peripheral neurologists specializing in CRPS, who ran an exhaustive series of tests, sweat responses, etc., before pronouncing that I didn't have RSD because I had none of the objective markers: many if not most of which came within a period of 2 -5 years later. Little did I know that at the same time she was seeing me, she was the lead author of study in which there had to be an agreed set of symptoms by which any two doctors, reviewing the same chart, would make the same diagnosis, and by which they utilmately found an incidence rate of 5.45 per 100,000. For a study specifically criticizing this methodology and finding a far higher incidence of CRPS when correspondance with actual treating physicians was brought into th equation as well (26.2 per 100,000), see, "The incidence of complex regional pain syndrome: A population-based study," de Mos M, de Brijn AGJ, Huygen FJPM, Dieleman JP, Stricker BHC, Sturkenboom MCJM, Pain 129 (2007) 12-30, a free full text copy of which is available through the RSDSA Medical Article Acheive webpage at http://www.rsds.org/2/library/articl..._pain_2006.pdf. In discussing the earlier Mayo Clinic study, de Mos et al say as follows:

The study of Sandroni and colleagues used the IASP criteria, which were applied retrospectively to information from electronic medical records. We also used a retrospective approach and used both electronic medical records as well as information from GP questionnaires and specialist letters for the diagnosis. In contrast to Sandroni we did not require that all cases should fulfill diagnostic criteria; we retained all cases on the basis of a reconfirmed diagnosis of CRPS by the GP or specialist.

Criteria sets were also applied on a subset for which detailed diagnostic data were available, but were used merely to see differences in criteria sets. However, an incidence rate based on the strictly applied IASP criteria (IR: 16.8 per 100,000 person years), as done in the Sandroni study, was calculated and was still almost three times higher in our study as the incidence rate found in Olmsted County (SMR = 2.7). Remarkable is, that in our subset of specialist-diagnosed cases 86% fulfilled the IASP criteria, compared to 19% of the cases in the Sandroni study. The supposedly high rate of incorrectness of the CRPS diagnosis (81%) in the Sandroni study has been questioned by others before (Bennett and Harden, 2003), and suggests that the retrospective application of the IASP criteria to information on electronic charts might have been overly strict. The IASP criteria are considered highly sensitive and incidence rates based on this should be comparable with incidence rates based on specialist’s diagnoses.

Bottom line: the principal relevance of a lack of "objective indicators" early in the course of the disease is, sadly, the barriers that may be (temporarily) imposed in getting effective care or compensation.

been there,
Mike

[amb97]

Originally Posted by nancyinLA

Hi everyone....i'm the one that broke my left wrist & am 15 mos. out. The RSD has gone 2 my left foot. I have much pain but the swelling, discoloration, etc. has subsided. I'm still taking meds & seeing drs..... have any of u experienced just the pain???

The swelling in my main RSD site (rt ankle) is almost non-existent now, but it's still very painful. I still have a purple/mottled appearance over the whole foot, but no swelling or discoloration in the knee where it spread after my ankle. The secondary spot (my lower spine) still has some swelling, but no discoloration or temp change- lots of pain. I think the issue is that like any disease, people experience some of the symptoms at one time and other symptoms or all of them at others. Stick with oyur treatments and keep your doctor informed so he/she can help you out. Good luck!

[SandyRI]

My RSD started in my upper right extremity. I have symptoms through my right arm. My injury was in Nov of 2006. It has also spread through my cervical spine into my head (last fall), and I am fairly certain, to my right leg (last couple of months).

My only swelling to date has been in my right leg.

Everybody's RSD is different.

Wishing you the very best, Sandy

[hope4thebest]

I have swelling in my left ankle/foot/lower limb...it really swells up during the day at work at the desk...I can't elevate above my heart as recommended because of the nature of my job...

The swelling recedes in the evening while a watch a couple of Seinfeld re-runs with my feet up. It swells when I walk (can't do that much walking, very little walking) and sometimes when I wake up it's a little swollen...My last MRI said there is atrophy ...so it's weird...sometimes my foot looks so thin and at other times it looks like a balloon. More recently though the swelling has increased because my aqua therapy sessions ran out(warm water pool) and the therapist thinks the (W.C) insurance won't re-authorized.

Warm water aqua therapy is (was) great!
(S)well !!! Enough for now!
Hope4thebest xo