[jennyk38]

hey all,

i went to my second appoitment with my THIRD rsd "specialist". since the first time i have seen her(two weeks ago) I have developed a red rash on arms and have begun having electric "currents" to bottom of both feet and also having random red areas with stinging to feet, arms, neck, face. i also have muscle twitching from head to toe. my b/p was 127/110! pulse 90. this "specialist" also says that smp CANNOT and WILL NOT become sip under any circumstances. she also says that i am atypical and that it is not normal for rsd VICTIMS to have rash, electical type pain/sensations or random muscle twictching! is this true, am i really the only one? she didn't do anything about my b/p, refuses to give me anything for anxiety except a referral to a shrink that i cannot afford and wouldn't even refill my catapress patch that last "specialist" had ordered despite my elevated b/p! i have NEVER been so frustrated in my life. p.o.'d jenny

Hi Jenny,

Just a very quick reply, I have to go out, but your doc *is* uninformed.

I'll have a look later to see what I have about sympathetically/independently maintained pain, but from memory the two can coexist. Also, and separately, there is or was controversy about whether pain can "jump" systems (it was thought impossible, as your doctor thinks) but this has been theorized as explaining why blocks eventually stop working.

I think you need to do some research and print or email relevant info to your doc. Choose respected sites, don't include forum or newsletter stuff, preferably take either published research papers/articles/guidelines by doctors...oh! and only recent things, there's been a lot more research in the last 3 years.

You will find a lot of info about this, I'll post anything I find later,
all the best

[GalenaFaolan]

That is such bull!!! Pretty much everyone I've ever talked to in the last 4 years has said they have the "electric type shocks" through their body. I believe in a survey that I made up and had people answer that it was a 100% on that particular symptom. I also think pretty much everyone also has the muscle spasms and uncontrollable jerking of the limb or limbs that have RSD in them.

I have all of it and have since the start! I get these blood blister looking things on my legs mostly that turn into sores but I've not had any type of rash though I have heard a lot of people do have that but not sores and sometimes they have both.

As for SMP and SIP, from what I've read in papers over the years, RSD usually begins as SMP then at some point it becomes SIP. I also believe I read that it can coexist as well.

Here is what I found. This one is from RSDS.org. They definitely know what they're about on that site. The plus is that it's easy to understand as well.

http://www.rsds.org/2/library/CRPS_pathophysiology.pdf

This one written by Dr. Hooshmand and has a bit on SMP and SIP a little way down the page.

http://www.medforum.com/jobline-srch...1/article.html

A professional article specifically discussing RSD, SMP and SIP. More of a technical type paper written by doctors.

http://www.anesthesia-analgesia.org/...full/99/5/1478

http://www.physsportsmed.com/issues/...04/mekhail.htm

http://www.forgrace.org/documents/ca...nphysician.pdf


Hope these will help you. Your doctor sounds as if she doesn't know what the heck she's doing or talking about.

[sue k]

jenny,

you need to find a new doc. my legs and arms have been jumping around for years. sometimes my leg lifts right off the bed. i've been through too many docs to count, finally found one. keep looking.

SUE K.

[DiMarie]

I agree you need another doctor. One that is not so closed minded, will play detective and support with medications.
Just thinking out loud.

a thought or two...
1. I do not know what test you have had to rule out other disorders as RSD can mimic, or be in conjunction with many syndromes.

2. Did they happen to test for Lymes disease.

3. Did you have any kind of truma? A fall, car or work accident?

4. I had leg jerking from Effexor, did you rule that out, an anti seizure med?

It seems you have a lot going on, in with RSD.

Hope you find a sympathetic doctor, one like this can mess a medical history up real fast.
Dianne

[JOAN_M]

Pure and simple, you doctor is a loser. i've had the rash, the currents of electrical pain and the jerky movements and the high blood pressure ... most important of all, my doctor does not doubt what i say.
get a new doctor and believe in yourself. you are your best, and some times only, advocate. joan

[Linmarie]

I've had electrical feeling pains and jerks also. Actually, quite a few today. I don't really get rashes but do get itchy spots. I agree, find a new doctor.
Linmarie

[Sandel]

Your post sounds almost exactly like me..
I have been fighting with doctors WCB for two years now over the same roving symptoms, it started out with me and my "Gremlins" lil mobile freaks that continualy rove around me poking a sharp very thin needle in me very deep (or like a deep deep rooted nerve/hair pulled very quickly) where ever they felt like it the pains soon changed to roving patches of surface burning pain.

Putting a charictor to my pain helped me to deal with it with humor usualy sometimes anger an I know it is very scary, So now the lil peckers split up so one can poke/electricute me while the other runs around me with a shark steamer cleaner burning me at random, there's meds that can help this kind of pain baclofen helps some of the Jabs and cramps and lyrica is helping tone down my little monsters some.

They have buddies you know lil'er under skin bugs that run up'n down the body usualy in small areas on my back or an arm, I can watch these lil bugs but they hide when you try show others sometimes, thers the runners theyre faster and they tend to like running up and down my back, then theres the jumpers they are repititous lil bubble bugs and usualy the ones I visualy get to watch, they move around to a few favorite places on my body.. and theres the ones that ramble aimlessly like they are looking for somewhere to reak their particular havoc.. and callin in all it's other buds to come play at my expence, s'alway interesting.

Theres more too but these guys seem to be all related.. is a hmm thang
Sory to ramble I got a gremlin that trickles invisible water down my right calf on a regular basis.

nite

Please have a spoon

[unrouley1]

hey girl. i have been experiencing most of the same symptoms (except the rash) and my pain doc has treated me like crap. he said "you have RSD but THAT is not RSD." so i go in on tuesday for a brain MRI (he said I might have MS) and when he said something about my spine... can anyone tell me is that a SPINAL TAP or is there such thing as a spine MRI???

[JOAN_M]

a spine mri is a tube you get placed in and they take 360 degree pictures of your spine. i've had it done. it is painless but if you have claustrophobia, take something to calm you before you go. it is much more specific than an x-ray. good luck. joan