Lotsa of pain but no swelling, etc.?
 

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??? :)

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

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.

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

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

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!

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

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

Hi hope4thebest,
How about asking the WC for a small portable spa? It's not impossible. I've heard of it being granted. An attorney could definetly give them a nudge. I wasn't injured on WC, injured by a jerk of a Dr. I didn't sue. Didn't have the emotional energy. I have paid out of pocket tons of money for massage therapy and about to start HBOT-probably $10K
I've been paying $250 an hr. to the best Dr. who has helped me beyond works. Keep me out of a wheel chair. My toes started curling up and didn't touch the floor. He had me in our heated pool every day doing exercises. In about 4 months my toes were touching the ground again. I have decreased different meds and feel my pain from anxiety and stress have decreased by other methods of relaxation.
Hope WC gets you a small spa. They come in 110 electric and do wonders. My girlfriend has one.
Take care, loretta

Hi Loretta,
thanks for the information..I have followed your posts and you are amazing at all the activity you do...I know you do a lot of relaxation methods..i try to do that as well....I meditate and I'm in a series of classes that teaches relaxation techniques...I also have a few C/D's (pain management) that I listen to at night while trying to fall asleep that really help. I like candles and have enjoyed them for years as i find them so soothing.

Can you tell me the name of the portable spa that your friend has...I'll look it up on the internet and see what it's like !!

it's great that you'll be able to undergo hbot treatment! I truly hope you get some relief from them...you have been through such an ordeal for so long, it is time for you to get some relief long-lasting !!

I have a silly hbot question!!! would it ever be possible to give just a limb hbot treatment ? rather than the whole body....I envision some kind of mini container that you could place just an arm or a leg into, and get the oxygen treatment directly to the limb!!!

Great idea, isn't it?? I've often wondered if that would be feasible or effective!
You are very fortunate to have such a caring and conscientious doctor!
Have a restful week-end!!!
Hope4thebest xox

hope4thebest,

the theory of HBOT, ªwhich some others here could explain better than I, is like this:

You're breathing under pressure.
This permeates Oxygen into your muscles "Under pressure".

I took my children to the FLA keys, and my son and I got certified for open water diving.
Now, I'm off course,
but,
at the end of that first (Physical day) as opposed to classrom stuff,
I thought, having simple rsd and tos, (as opposed to my tbi and discs now),
I'd NEVER be able to get out of bed the following day.
WRONG!
I woke up first, got my kids fed, and we were off on the first boat!
Again!
All day, four dives! (tanks).
Now, the Keys aren't deep. But, i got down to about 40-50 feet, and more. (33 feet is considered an "atmosphere", so at 33', you're @ two atmospheres of pressure, understand?)
So,
the air you breath in, is permeated doubly into your muscles and nerves.
I'm not sure if Oxygen is considered a narcotic, but I have it connected to my CPap machine, and I need a prescription.

So, then again, the third day, I was able to get up at dawn, and put on all the equipment , go out and pass the course.
My son took a bit longer, and my daughter was too young.

Anyway, it was quite an adventure, as I rose from the "bottom", I looked up, and my daughter was snorkeling. (supervised of course), and I was the only one who could see a Barracuda, as big as her! swimming parallel with her, an arms length away. (Dam!) that's panic!
The 'cuda looked her over, and swam off.

If you ever get a chance to get certified for diving, do so. (I'm pretty sure the "Y's" all have programs for this!
You can just get a tank of air, visit the closest deepest place or pool you can get into, and just sit on the bottom, and breathe you tank. Even the pool at the "Y".
Swim a little if you can. (This REALLY has an advantage over HBOT, it works your muscles, and the oxygen gets in deeper).

But, It's pretty nearly the same as having HBOT treatment.
After a days diving, I was invigorated, and ready to do Anything!

Diana, I hope will add to this for me, I think she's more qualified than I.

Thanks, and enjoy, (if you can)!

Pete

well, i don't feel so crazy now! thks to all.........:)

Hi Pete,
So would it be at least helpful to oxygenate by breathing in some oxygen from a mask or the little nostril apparatus, or does it have to be under pressure...I'm trying to figure out another way to get more oxygen in the system...
(Of course when I'm driving on the freeway I try and hold my breath now and then so I don't breath in the fumes through my A/C vents...!!!!!!)
That's great how the dives gave you more energy and made you feel so invigorated!! Are you still able to do that?
(Scary story about the barracuda....they have narly teeth!!)
Hope4thebest

I have had both..swelling with pain..less swelling and more pain. It is not a " To Swell or not to swell", mindset that causes pain.

I agree with Mike, as I am in a WC case with my CRPS I. It's like pulling teeth to get anything done through the WC system. Look up WC in dictionary: search DELAY:eek:

:grouphug: