Question

[Guest guest]

RSD is Reflex Sympathetic Dytrophy. Here is desciption.

     Reflex Sympathetic Dystrophy Syndrome

Table of Contents

* What is reflex sympathetic dystrophy syndrome?

* What are the symptoms of RSDS?

* What causes RSDS?

* Who gets it?

* How is RSDS diagnosed?

* What is the prognosis?

* What is the treatment?

* Are there any other disorders like RSDS?

* What research is being done?

* Is help available?

What is reflex sympathetic dystrophy syndrome?

Reflex sympathetic dystrophy syndrome (RSDS) — also known as complex regional

pain syndrome — is a chronic condition characterized by severe burning pain,

pathological changes in bone and skin, excessive sweating, tissue swelling,

and extreme sensitivity to touch. The syndrome, which is a variant of a

condition known as causalgia, is a nerve disorder that occurs at the site of

an injury (most often to the arms or legs). It occurs especially after

injuries from high-velocity impacts such as those from bullets or shrapnel.

However, it may occur without apparent injury.

Causalgia was first documented in the 19th century by physicians concerned

about pain Civil War veterans continued to experience after their wounds had

healed. Doctors often called it " hot pain, " after its primary symptom. Over

the years, the syndrome was classified as one of the peripheral neuropathies,

and later, as a chronic pain syndrome. RSDS is currently classified as a

variant of causalgia, not necessarily caused by trauma.

What are the symptoms of RSDS?

The symptoms of RSDS usually occur near the site of an injury, either major

or minor, and include: burning pain, muscle spasms, local swelling, increased

sweating, softening of bones, joint tenderness or stiffness, restricted or

painful movement, and changes in the nails and skin. One visible sign of RSDS

near the site of injury is warm, shiny red skin that later becomes cool and

bluish. The pain that patients report is out of proportion to the severity of

the injury and gets worse, rather than better, over time. It is frequently

characterized as a burning, aching, searing pain, which may initially be

localized to the site of injury or the area covered by an injured nerve but

spreads over time, often involving an entire limb. It can sometimes even

involve the opposite extremity. Pain is continuous and may be heightened by

emotional stress. Moving or touching the limb is often intolerable.

Eventually the joints become stiff from disuse, and the skin, muscles, and

bone atrophy.

The symptoms of RSDS vary in severity and duration. However, there are

usually three stages associated with RSDS, and each stage is marked by

progressive changes in the skin, nails, muscles, joints, ligaments, and bones.

Stage one lasts from 1 to 3 months and is characterized by severe, burning

pain at the site of the injury. Muscle spasm, joint stiffness, restricted

mobility, rapid hair and nail growth, and vasospasm (a constriction of the

blood vessels) that affects color and temperature of the skin can also occur.

In stage two, which lasts from 3 to 6 months, the pain intensifies. Swelling

spreads, hair growth diminishes, nails become cracked, brittle, grooved, and

spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles

atrophy.

As the patient reaches stage three, changes in the skin and bones become

irreversible, and pain becomes unyielding and may now involve the entire

limb. There is marked muscle atrophy, severely limited mobility of the

affected area, and flexor tendon contractions (contractions of the muscles an

d tendons that flex the joints). Occasionally the limb is displaced from its

normal position, and marked bone softening is more dispersed.

What causes RSDS?

The cause of RSDS is unknown. The syndrome is thought to be the result of

damaged nerves of the sympathetic nervous system — the part of the nervous

system responsible for controlling the diameter of blood vessels. These

damaged nerves send inappropriate signals to the brain, interfering with

normal information about sensations, temperature, and blood flow.

Since RSDS is most often caused by trauma to the extremities, other

conditions that can bring about RSDS include sprains, fractures, surgery,

damage to blood vessels or nerves, and cerebral lesions. The disorder is

unique in that it simultaneously affects the nerves, skin, muscles, blood

vessels, and bones.

Who gets it?

RSDS can strike at any age, but is more common between the ages of 40 and 60.

It affects both men and women, but is most frequently seen in women. Although

it can occur at any age, the number of RSDS cases among adolescents and young

adults is increasing. Investigators estimate that two to five percent of

those with peripheral nerve injury and 12 to 21 percent of those with

hemiplegia (paralysis of one side of the body) will suffer from RSDS.

How is RSDS diagnosed?

RSDS is often misdiagnosed because it remains poorly understood. Diagnosis is

complicated by the fact that some patients improve without treatment. A delay

in diagnosis and/or treatment for this syndrome can result in severe physical

and psychological problems. Early recognition and prompt treatment provide

the greatest opportunity for recovery.

RSDS is diagnosed primarily through observation of the symptoms. However,

some physicians use thermography — a diagnostic technique for measuring blood

flow by determining the variations in heat emitted from the body — to detect

changes in body temperature that are common in RSDS. A color-coded

" thermogram " of a person in pain often shows an altered blood supply to the

painful area, appearing as a different shade (abnormally pale or violet) than

the surrounding areas of the corresponding part on the other side of the

body. An abnormal thermogram in a patient who complains of pain may lead to a

diagnosis of RSDS. X-rays may also show changes in the bone.

What is the prognosis?

Good progress can be made in treating RSDS if treatment is begun early,

ideally within 3 months of the first symptoms. Early treatment often results

in remission. If treatment is delayed, however, the disorder can quickly

spread to the entire limb and changes in bone and muscle may become

irreversible. In 50 percent of RSDS cases, pain persists longer than 6 months

and sometimes for years.

What is the treatment?

Physicians use a variety of drugs to treat RSDS, including corticosteroids,

vasodilators, and alpha- or beta-adrenergic-blocking compounds. Elevation of

the extremity and physical therapy are also used to treat RSDS. Injection of

a local anesthetic, such as lidocaine, is usually the first step in

treatment. Injections are repeated as needed. TENS (transcutaneous electrical

stimulation), a procedure in which brief pulses of electricity are applied to

nerve endings under the skin, has helped some patients in relieving chronic

pain.

In some cases, surgical or chemical sympathectomy — interruption of the

affected portion of the sympathetic nervous system — is necessary to relieve

pain. Surgical sympathectomy involves cutting the nerve or nerves, destroying

the pain almost instantly. But surgery may also destroy other sensations as

well.

Are there any other disorders like RSDS?

RSDS has many of the same features as causalgia, such as severe burning pain

that is aggravated by physical or emotional stimuli. However, causalgia

usually affects the lower limbs, the palm of the hand or the sole of the

foot; RSDS may strike any part of the body.

RSDS also has characteristics similar to those of other disorders, such as

shoulder-hand syndrome, which sometimes occurs after a heart attack and is

marked by pain and stiffness in the arm and shoulder; Sudeck's syndrome,

which is prevalent in older people and in women and is characterized by bone

changes and muscular atrophy, but is not always associated with trauma; and

Steinbrocker's syndrome, which affects both sexes but is slightly more

prevalent in females, and includes such symptoms as gradual stiffness,

discomfort, and weakness in the shoulder and hand.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS), a part

of the National Institutes of Health (NIH), supports and conducts research on

the brain and central nervous system, including research relevant to RSDS,

through grants to major medical institutions across the country.

NINDS-supported scientists are working to develop effective treatments for

neurological conditions and, ultimately, to find ways of preventing them.

Investigators are studying new approaches to treat RSDS and intervene more

aggressively after traumatic injury to lower the patient's chances of

developing the disorder. In addition, NINDS-supported scientists are studying

how signals of the sympathetic nervous system cause pain in RSDS patients.

Using a technique called microneurography, these investigators are able to

record and measure neural activity in single nerve fibers of affected

patients. By testing various hypotheses, these researchers hope to discover

the unique mechanism that causes the spontaneous pain of RSDS and that

discovery may lead to new ways of blocking pain.

Other studies to overcome chronic pain syndromes are discussed in the

pamphlet " Chronic Pain: Hope Through Research, " published by the NINDS.

Is help available?

The unrelenting pain from RSDS has caused many patients much physical and

emotional misery. Family, friends, coworkers, and, regrettably, physicians

themselves, may regard the patient as a complainer, thereby increasing the

patient's distress. To meet the needs of individuals with RSDS and other

conditions causing chronic pain, the following voluntary health agencies

promote research, provide information, and may offer advice on coping. For

information, write or call:

RSDS Association

116 Haddon Avenue

Suite D

Haddonfield, New Jersey 08033

www.rsds.org

American Chronic Pain Association

P.O. Box 850

Rocklin, California 95677

www.theacpa.org

National Chronic Pain Outreach Association, Inc.

P.O. Box 274

Millboro, Virginia 24460

For information on other neurological disorders or research programs funded

by the National Institute of Neurological Disorders and Stroke, contact the

Institute's Brain Resources and Information Network (BRAIN) at:

BRAIN

P.O. Box 13050

Silver Spring, land 20911

Reviewed June 5, 2000

---

Kathy Goldenkranz

Aptos, CA 95003

[Guest guest]

Hi ,

Absolutely! Chronic pain will definitely wear you down. Do you have an

arrangement with your school so you can keep up with the work you miss?

Hower

http://home.dejazzd.com/hower

[Guest guest]

yes and hey sweetie chronic pain really drains people im not used to

being so tired yet either

>

>Reply-To: chronic_pain

>To: chronic_pain

>Subject: Question

>Date: Wed, 12 Dec 2001 15:07:36 -0600

>

>hi there im just wondering i suffer from RSD.I got to school i notice im

>always tired

>so i can only go half days.could this be related to my pain?

>

>

>

>_____________________________________________

>Free email with personality! Over 200 domains!

>http://www.MyOwnEmail.com

>

LiL Missy

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

In a message dated 12/12/2001 2:15:22 PM Pacific Standard Time,

missy_burch@... writes:

> chronic pain really drains people im not used to

> being so tired yet either

>

Also, with a lot of people, they don't get a good rest at night. I do, and

that saves my life. I sleep like a baby. The doctor raised my Neurontin from

1800mg to 2400 mg., but the higher amount doesn't see, to help. I'm also

taking Darvocet. Suggestions for something else? The dr. is talking to a

neurologist and the pain clinic dr., for more ideas.

Carol

[Guest guest]

ask yuour doctor about the duragesic fental patch its

got differnt strengh25-50-75-100 they are not the

chechest but i have found they do the trick i was on

nerorotin 1800mg i didnt find much relief they were

extrodanarly exspensive. the patches run about about

30dollars a piece they do not sell them separtely they

come in a boxof 5.depending on your pain you are

haveing 25$50 didnt seem to help me much 100/mg was to

much 75 did the trick every once in a while id have

todo acouple motrin. the patches stick to a part of

your body that doesnt move often they are suppose to

work for 3 days one down fall first when you put them

on it takes abouy 4 to 6 hour to start working then

when the old patch is ready to come offapply the new

one on leave the one until you feel the new one

workingthe patch contains either demoal or morfine the

rreason i went on them i cant do aceaminophen because

of my liver and thios medicine does not go through

your liver like the rest of them do i hop i eas of

some help happy hoildays

--- CairnMom@... wrote:

> In a message dated 12/12/2001 2:15:22 PM Pacific

> Standard Time,

> missy_burch@... writes:

>

>

> > chronic pain really drains people im not used to

> > being so tired yet either

> >

>

> Also, with a lot of people, they don't get a good

> rest at night. I do, and

> that saves my life. I sleep like a baby. The doctor

> raised my Neurontin from

> 1800mg to 2400 mg., but the higher amount doesn't

> see, to help. I'm also

> taking Darvocet. Suggestions for something else? The

> dr. is talking to a

> neurologist and the pain clinic dr., for more ideas.

> Carol

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

Thanks. Will check with my doctor on the patches.

Carol

[Guest guest]

Does anyone know abut Depakote? I have a friend who has a friend

(psychiatrist) who prescrbes for her back pain, and she said she'd heard

things about the Depakote. Anything?

Carol

[Guest guest]

Dear Carol,

I haven't heard about Depakote being used for anything but bipolar. Which

doesn't mean anything because now they're using all sorts of meds for purposes

other than the original intent.

The only thing I can tell you is that I took it, and it messed with my brain

and my body, so I had to quit. It seems to be one of those meds which people

either rave about, or hate. It does " flatline " your emotions and moods. But

maybe your friend will be taking it in a smaller dose.

I have severe back pain, just like most of you reading this! My Dr. has me

on 10 mg Prednisone every other day, flexeril 2x/day, valium 1-2x/day, Vicodin

3x/day, neurontin 3x/day, ultram 3x/day. It's quite a cocktail - but I've tried

to leave just 1 thing out - and it just doesn't work as well. The mix allows me

to keep from taking too much of any one thing so side effects aren't a problem.

I want off the ultram, and maybe on the lowest dose oxy possible. Oxy scares

me.(MS Contin).

Sorry I can't be of more help.

Jo

Re: Question

Does anyone know abut Depakote? I have a friend who has a friend

(psychiatrist) who prescrbes for her back pain, and she said she'd heard

things about the Depakote. Anything?

Carol

[Guest guest]

I know it is a drug that is used for manic depression; supposed to not be as bad

on the liver as Lithium salts. I know it was prescribed for me, and the lowest

possible dosage made a

'recliner rooster' out of me...(possibly because of my chemical sensitivities or

because I was misdiagnosed)...and I also know it made me gain MORE weight. This

was after another doc had

given me Pamelor for my FM, which he titrated up to a pretty high dose...STILL

carrying around the 50 lbs. that put on me. That's all I know for sure. I now

use mostly herbal products

from the Symmetry corporation and they help me more than any of the drugs the

docs had me on. They are doctor developed. I signed as distributor in order to

get discount.

I use Neurocalm and Tranquility for the head; Advanced Omega for the arthritis

pain and inflammation; I have used their Botanacleanse 3x now and getting ready

to do it again, as it cleans

ALL the toxins out of my body which makes a lot of the pain and sore spots go

away. I will scrub toilets in order to get these because they work, are

patented, doctor developed and

guaranteed to do what they are supposed to do or I get my money back. I take

the Nutrapak every day, as it is just good food.

I haven't been writing to the list as often, because I am not in so much pain

nor trying to deal w/ all the nasty side effects and reactions from chemicals

since I have been using these

products...well over a year now. I was dx'd w/ IBS and could not tolerate any

dairy or green products. That was BS too...since I did the cleansing and got on

the dailys, I can eat ice

cream if I want or drink milk, and lettuce does not do the 'rapid transit' and

bloom out the other end w/in half hour so I can enjoy salads now. Got off topic

didn't I?

lol...Wellllllllll...when you search for years and finally find something good,

you do get excited about it. Just my testimony...not trying to sell any of you

anything, but if you want to

feel better, look better and live longer...

you can find the corporate web site at http://www.symmcorp.com and read about

this stuff and see for yourself. Be glad to answer any questions and if anyone

wants to try anything or sign

up, feel free to contact me personally and I will be glad to help you. When I

showed these products to my nurse/massage therapist friend who had been working

w/ me for four years, she

jumped up and down and ordered a bunch of things...and says it has turned her

health around too. GOOD STUFF FOLKS!

Warm fuzzy hugzzzzzzz to all,

Diane

CairnMom@... wrote:

> Does anyone know abut Depakote? I have a friend who has a friend

> (psychiatrist) who prescrbes for her back pain, and she said she'd heard

> things about the Depakote. Anything?

> Carol

>

>

[Guest guest]

In a message dated 02/28/03 7:36:23 AM Central Standard Time,

rjenkins@... writes:

> All dementias have stages.

Russ,

My dad has not and is not able to do any of the things on the list. He knows

who we are. I can tell by the smiles I get when I see him every day. He talks

but no one can understand him. On an occasion you can hear a 4 letter word

quite clearly.

Debbie C.

[Guest guest]

Russ,

Thank you for the information. I was able to print it off. I will go through

it and compare it as to where I think he is.

I don't think you know how much is appreciated from all of us here. You are a

godsend.

Thank You,

Debbie Curtis

Iowa

[Guest guest]

Russ,

What kind of insight can you give us from your experiences as to what to look

for from here on out.

Any information is helpful.

thank You Again,

Debbie C.

[Guest guest]

All dementias have stages. Clinicians use something called a CDR

(Clinician's Dementia Rating) Scale to determine the stage of dementia.

Scores (0,0.5,1,2, or 3) are given in 6 different domains: Memory,

Orientation, Judgment & Problem Solving, Community Affairs, Home & Hobbies,

and Personal Care. The sum of these numbers is referred to as, " The Sum of

the Box Scores, " as each score is a " box score, " kind of like in a grid.

Then, a composite score is determined by plugging these numbers into an

algorithm. The composite score is not necessarily the average of these

numbers, as some domains are weighted more heavily (I.e., memory and

orientation) than others (I.e., community affairs). Here's a computerized

version of the algorithm:

http://www.biostat.wustl.edu/~adrc/cdrpgm/index.html

The composite score is recognized widely as a good indicator of the stage of

a person's dementia. The CDR Scale is highly correlated with scores on the

MMSE (Folstein Mini-Mental State Exam).

Ratings:

0 = healthy

..5 = questionable dementia

1 = mild dementia

2 = moderate dementia

3 = severe dementia

(There are two other levels some researchers use at the severe end, in some

research projects:)

4 = Profound

5 = Terminal

-Russ

QUESTION

DOES LBD HAVE STAGES OR IS IT LIKE ALL DEMENTIA STAGES. THANKS . LINDA D

MISSOURI ( CAREGIVER FOR FIL)

[Guest guest]

Can you see this attachment? It describes all the CDR stages in greater

detail.

Debbie, he's likely beyond the severe stage.

-Russ

[Guest guest]

Russ,

I don't think we are able to post attachments here. Maybe just post

the web address.

Regards

Emma

> Can you see this attachment? It describes all the CDR stages in

greater

> detail.

>

> Debbie, he's likely beyond the severe stage.

>

> -Russ

>

>

>

[Guest guest]

I don't have web space. If you want it, give me you're e-mail address.

Re: QUESTION

Russ,

I don't think we are able to post attachments here. Maybe just post

the web address.

Regards

Emma

> Can you see this attachment? It describes all the CDR stages in

greater

> detail.

>

> Debbie, he's likely beyond the severe stage.

>

> -Russ

>

>

>

[Guest guest]

Russ,

I thought you were trying to post an attachment to Debie and thought

i would let you know we can't post attachments. Maybe I

misunderstood. Nevermind.

PS. I'm glad I don't have to live with your Baltimore weather

conditions. You guys know what cold is that's for sure.

Warming Regards

Emma

> > Can you see this attachment? It describes all the CDR stages

in

> greater

> > detail.

> >

> > Debbie, he's likely beyond the severe stage.

> >

> > -Russ

> >

> >

> >

[Guest guest]

Just disregard my last message. Thanks

My Melbourne weather has made my brain numb LOL :-)

Emma

> > > Can you see this attachment? It describes all the CDR

stages

> in

> > greater

> > > detail.

> > >

> > > Debbie, he's likely beyond the severe stage.

> > >

> > > -Russ

> > >

> > >

> > >

[Guest guest]

for some reason i didn't get the attachment .could someone please send it to me

at lindadkc@... thank you so very much.. linda d ( springfield MO.. )

RE: QUESTION

Can you see this attachment? It describes all the CDR stages in greater

detail.

Debbie, he's likely beyond the severe stage.

-Russ

[Guest guest]

Too broad of a question. So many things can happen as the disease

progresses, and one patient with LBD can be very different from the next (in

terms of duration, illness course, and symptomatology). Sorry I can't be

more helpful. The best thing you can do it get hooked-up with a dementia

specialist that can guide treatment and address individualized concerns as

they surface. -Russ

Re: QUESTION

Russ,

What kind of insight can you give us from your experiences as to what to

look

for from here on out.

Any information is helpful.

thank You Again,

Debbie C.

[Guest guest]

In a message dated 03/01/03 7:15:26 AM Central Standard Time,

mido101@... writes:

> , I found myself counting

> how many days are in 4 years. And it is a lot of days!

>

> Donna

>

>

>

I know Donna. I am just soooo tired. We are in our 7th year and living at the

nursing home 5 days a week for feedings and caregiving day after day after

day is very draining. On some days there is a few seconds of joy for my dad

if that. I see Shirley is wondering as to what to pray for, living or not for

her Mom. As for me I put it into Gods hands and ask for Freedom for my dad as

well as for my Mom and I. Then feel guilty. Who am I anyway to ask for

freedom.

I like everyone here have my ups and downs. Burnout is here for both my Mom

and I. She told me the other day that see fells trapped in a box and cannot

get out. I knew what she was saying without saying it. Donna, Thank you for

your support and caring.

Debbie C.

[Guest guest]

In a message dated 03/01/03 7:15:26 AM Central Standard Time,

mido101@... writes:

> Debbie,

>

> You have asked this question several times and I think you haven't

> gotten an answer.

You are right. I have not gotten all the possibilities of what could ley

ahead. Dad has been at the same stage for a very, very long time. I have yet

to hear or read of LBD progressing to the point of terminal in the sense of

the disease progressing in the brain to terminal stage. Most of the LBD

sufferers who have passed away have been from other contributors, such as

medications, to choice, to flu, infections and other things other then the

(LBD disease progression to terminal). I guess that is what I am looking for

in information. ALL The possibilities of just LBD progression.

Again Donna,

Thanks Debbie C.

[Guest guest]

I have the same question that Donna has, when does all the things happen that

I have been reading from different post happen? My sister has been the same

except short term memory for a long time. It is ok with me if she never gets

all that other stuff I am reading about, but if the disease is consistent I

guess the other things will come. Right?

Jayn

[Guest guest]

Debbie,

You have asked this question several times and I think you haven't

gotten an answer. That is because this is a " day at a time " disease.

Unfortunately most of us have dealt with it, a day at a time. It is the

most we have with no answers for tomorrow. And that is because we never

know what to " look " for tomorrow. You as I, will have to wait for

tomorrow to know what to look for.

That is part of the awfulness of this disease. I did that for 4 years

and as I left the hospital for the last time, I found myself counting

how many days are in 4 years. And it is a lot of days!

Donna

[Guest guest]

Debbie

My opinion is LBD progression is just what you explained, yet it affects

everyone differently. I would guess that possibly a blood clot from the

leg travelled to my dad's heart and took his life, or his heart gave out

from lack of his nitro patch and heart meds...but ultimately it was

because of the disease itself. Whether it is the flu, pneumonia, or

choice, the end result is the same. I accredite your dad's long LBD

life with the wonderful care you and your mom has given. Sticking with

the antibiotics and all. I am sure I could have agreed to give my dad

I.V. fluids, prolonging his life a bit, and a feeding tube for

nutrition, but instead decided it was time for me to let him go.

Doesn't mean that either of us are right or wrong, just different

situations and different people. As for what to look for, again, this

is all out of our timing and hands.

I think of you often, and have the beautiful memory tucked away of your

dad's smile.

Still cherish these times you have with him.

I hope to visit again soon, when I completely get over this upper

respiratory/flu bug.

My prayers are with you often!

Sandie