Lorena's Medical Condition

This page was intended primarily to inform friends and family what's going on with my medical situation, but I'm not really updating it anymore. I've included some links to info I've found useful at the bottom of the page, in case you found this site while looking for general information on Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy. To avoid this page showing up high on searches on this condition, I'll refer to it by name as seldom as possible :-).

After eight doctors and at least seven tests, the diagnosis came back down to the same thing I was told in January: RSD. The medical-go-round it took to get here:

Nov. 27, '01: Urgent Care [Dr.#1]: muscle spasm. This was before the foot problem started.
Dec.: Primary Care Physician (PCP) [Dr.#2]: sciatic nerve for the initial pain, but not sure about the foot (which is why the parade of specialists). Tests done: Sonogram (to rule out blood clots), blood test for gout, and x-rays of hip and leg, I think to rule out arthritis.
Jan. 28, '02: First Orthopedist [Dr.#3]: RSD, when asked didn't know of anything else it could be.
March 6: First Pain Management Specialist (PMS) [Dr.#4]: Says it's absolutely not RSD, probably Nerve Root Irritation, suggested I get EMG (electromyogram i.e. nerve conduction) and MRI, and depending on the results of those a nerve block to help confirm or deny RSD.
NOTE: By this time, the symptoms had abated somewhat, but the swelling was still there and the foot was still sensitive to pressure and temperature. It's been fairly stable at this level since about mid-Feb, with occasional worsening when I push it too much.
April 9: Physical Therapist (PT) [Dr.#5]: no diagnosis, gave me some general exercises for my lower back until we have a better idea what the problem is.
April 11: Neurologist [Dr.#6]: Ran EMG, says I have Peripheral Neuropathy (in both legs), but also said that the PN has no relationship to either the sciatic pain or to the swelling that keeps me from wearing regular shoes. That, he said, was just tissue that should be surgically removed. I don't think my PCP was impressed with that part, either.
April 23: Second Orthopedist [Dr.#7]: Says I don't need MRI because it's not my back, sent me for more x-rays (feet this time) and a bone scan.
June 11: Back to the 2nd ortho, but they forgot to tell me to bring the xrays in myself so I had to reschedule (with the 1st ortho, since the 2nd wasn't going to be in the office and the 1st is their foot specialist anyway). The bone scan did have a "hot spot," which could mean infection, fracture, tumor (all more or less ruled out due to other factors), arthritis, or, guess what, RSD! *sigh* At least they're not going to charge us for the rescheduled appointment.
June 17: Back to the 1st ortho, who says (unsurprisingly) that it's a mild case of CRPS (he seems to have a strong preference for the newer designation). There may also be some arthritis in that foot, but nothing I'd likely even feel at this point.
July 25: The pain management doctor at Loma Linda [Dr.#8] doesn't think it's RSD, but he wants me to have an MRI (finally, though IIRC the first PMS wanted it on my back and this one wants it on my foot), as well as finally getting some kind of treatment. He thinks that it's more likely either a fracture that isn't showing up on the x-rays or a bone infection. After it took over three weeks for the paperwork to get from Loma Linda to my PCP in Redlands (the two cities are adjacent, for those unfamiliar with the Inland Empire), he scheduled me for an MRI on 9/13.
October 14: The MRI on my foot came back normal, which rules out a fracture or bone infection, leaving only RSD. So, my PCP wanted me to see the PT for TENS (transcutaneous electrical nerve stimulation) treatment. If that doesn't help, then we can move on to other possible treatments.
September 4, 2003: Nothing really new. The PT tried the TENS, and warm footbaths. Neither helped that I could tell. The whole thing discouraged me enough that I haven't been back since, especially since it's been stable since then. Stable = it only hurts if I'm on it too much or wear something snug.
As of 2012, nothing much has changed. More may be posted if there are any significant changes.

My understanding of RSD from the reading I've done is that it's "a chronic pain disorder involving the sympathetic nervous system. It usually is the result of an injury or trauma.... The trauma sets off the body's mechanism for pain recognition, but then the 'normal system of pain perception' begins to misfire in it neural response, and an abnormal cycle of intractable pain begins." [About CRPS]

In my case, the probable trigger seems to have been the combination of pain from a pinched sciatic nerve (which started a few days after Thanksgiving and has long since cleared up) and overly-hot water from trying to treat the muscle spasm we assumed was causing the sciatic pain. The pain perceptors turned on, and now they don't want to turn off. That's a very oversimplified description, but it gets the basic idea across.

I've got the slight burning sensation on my left foot, swelling that's slight but enough to make me hobble when I walk, and I can't stand or walk on it for very long (time- or distance-wise). I can get around the house OK, but when we go out to the store or wherever I need a wheelchair. Pressure from snug socks/shoes/heavy covers aggravates it, so I wear loose slippers a lot when it's not warm up enough to go barefoot. It's a good thing I have a pair of warm, water-resistant boots that are sized to wear with really thick socks; if I use a thin sock I can wear them for an hour or so before the pressure starts getting to me. This is also important since letting the foot get too cold can make it hurt, too (cuts down circulation). I've put a frame under the bed sheets to take some of the pressure off my foot, but that's not as much of an issue when it's too warm for anything but a sheet. I'm still using the wheelchair to sit at the computer, since it's far more comfortable than the old office chair I was using.

For more information, I refer you to the following sites. It's not meant to be an exhaustive list, and some of them have links pages if you want more :-). For the record, CRPS seems to be the newer/preferred designator for this, but many sites still refer to it as RSD. Same condition, same symptoms, newer name apparently to better reflect the condition.

The Reflex Sympathetic Dystrophy Association of California (was rsdsa-ca.org -- site had lots of good basic info, but is now gone)
Reflex Sympathetic Dystrophy Syndrome Association Of America - yet another good general site
RSD Synonyms - some other names this condition is sometimes referred to as (may have to scroll down a screen or two)