Complex Regional Pain Syndrome, CRPS, is a chronic
progressive disease characterized by constant severe pain, swelling, color and
temperature changes in the skin as well as pathological changes in the bone.
CRPS usually occurs when the sympathetic nervous system malfunctions after
a traumatic event, usually an injury to a limb such as sprain, fracture, surgery or major
nerve injury. CRPS is classified as a rare disease by the United States Food and Drug
Administration.
The malfunction to the sympathetic nervous system causes the nerves to misfire and
send constant pain signals to the brain. The level of pain is measured as the most
severe on the McGill pain scale. Listed even above natural child birth and amputation of
a digit. The main concept for family and friends to comprehend is that child birth and
amputation end and heal, whereas, CRPS is constant.
CRPS is NOT caused by psychological factors. However, constant severe pain and
reduced quality of life has been known to cause psychological problems such as
depression and anxiety
What is CRPS?
Newly Diagnosed?
Start Here
Website Navigation
Treatments
Living w/CRPS
Products to make
life easier
Quick Links
To promote awareness through connecting patients with resources, to learn of available
treatments, find quality care and stay connected while empowering sufferers with the
knowledge necessary to “become their own advocate”. We will connect you with all the
tools necessary to live with CRPS from finding quality care in your area to connecting
with others as well as providing products to simplify daily living.
Mission Statement
© CRPS C.A.R.E. 2015
Complex Regional Pain Syndrome, CRPS, is a chronic progressive disease
characterized by constant severe pain, swelling, color and temperature changes
in the skin as well as pathological changes in the bone. CRPS usually occurs when
the sympathetic nervous system malfunctions after a traumatic event, usually an
injury to a limb such as sprain, fracture, surgery or major nerve injury. CRPS is
classified as a rare disease by the United States Food and Drug Administration.
The malfunction to the sympathetic nervous system causes the nerves to misfire
and send constant pain signals to the brain. The level of pain is measured as the
most severe on the McGill pain scale. Listed even above natural child birth and
amputation of a digit. The main concept for family and friends to comprehend is that
child birth and amputation end and heal, whereas, CRPS is constant.
CRPS is NOT caused by psychological factors. However, constant severe pain and
reduced quality of life has been known to cause psychological problems such as
depression and anxiety
What is CRPS?
Newly Diagnosed?
Start Here
Website Navigation
Treatments
Living w/CRPS
Products to make
life easier
Quick Links
To promote awareness through connecting patients with resources, to learn of available
treatments, find quality care and stay connected while empowering sufferers with the
knowledge necessary to “become their own advocate”. We will connect you with all the
tools necessary to live with CRPS from finding quality care in your area to connecting
with others as well as providing products to simplify daily living.
Mission Statement
© CRPS C.A.R.E. 2015
•
CRPS Info
o
Types
o
Symptoms
o
Clinical Guidelines
o
Diagnostic Tools
o
Treatments
▪
Medical
▪
Physical/Occupational Therapy
•
ICE and CRPS
▪
Medication
▪
Complimentary/Alternative
▪
Dietary
▪
New & Emerging Treatments
o
Previous Names
▪
Relationship to Fibromyalgia
o
Easy Non-Medical Explanations
o
History
o
Definitions
CRPS Info
To promote awareness through connecting patients with resources, to learn of available
treatments, find quality care and stay connected while empowering sufferers with the
knowledge necessary to “become their own advocate”. We will connect you with all the
tools necessary to live with CRPS from finding quality care in your area to connecting
with others as well as providing products to simplify daily living.
Mission Statement
© CRPS C.A.R.E. 2015
We are here to help
This website was designed for ease of
use. Each main category in the navigation
bar will give you a drop down menu or
bring you to a page with all of the sub
menus listed out like this one. Either way,
you will get to the exact same page.
Complex Regional Pain Syndrome, CRPS, is a chronic progressive disease
characterized by constant severe pain, swelling, color and temperature changes
in the skin as well as pathological changes in the bone. CRPS usually occurs when
the sympathetic nervous system malfunctions after a traumatic event, usually an
injury to a limb such as sprain, fracture, surgery or major nerve injury. CRPS is
classified as a rare disease by the United States Food and Drug Administration.
The malfunction to the sympathetic nervous system causes the nerves to misfire
and send constant pain signals to the brain. The level of pain is measured as the
most severe on the McGill pain scale. Listed even above natural child birth and
amputation of a digit. The main concept for family and friends to comprehend is that
child birth and amputation end and heal, whereas, CRPS is constant.
CRPS is NOT caused by psychological factors. However, constant severe pain and
reduced quality of life has been known to cause psychological problems such as
depression and anxiety
CRPS Info
Newly Diagnosed?
Start Here
Website Navigation
Treatments
Living w/CRPS
Products to make
life easier
Quick Links
To promote awareness through connecting patients with learning resources, available
treatment options, find quality care and stay connected while empowering sufferers with
the knowledge necessary to “become their own advocate”. We will connect you with all
the tools necessary to live with CRPS from finding quality care in your area to connecting
with others as well as providing products to simplify daily living.?
Mission Statement
© CRPS C.A.R.E. 2015
To understand the symptoms of CRPS, you’ll need to understand the difference between
symptoms and signs. Although, some can overlap. Symptoms are subjective evidence. Meaning,
something only the patient can feel/sense. Signs are objective evidence. Meaning others can see/feel or
sense. For example: pain from a sore throat is a symptom, only the patient can actually feel it. A sign of
a sore throat is redness or swollen glands, something someone else can see or feel.
Symptoms include:
o
Extreme pain (may include: burning, crushing, squeezing, tingling,
o
Swelling
o
Allodynia: Extreme sensitivity to something normally not painful. (soft touch,
wind, sound or vibration)
o
Hyperalgesia: Increased sensitivity to something normally painful. (crying
from a pin prick)
o
Color changes in skin due to vasoconstriction (may be red, purple, blue or mottled)
o
Temperature changes in the skin (>1.1°C)
o
Decreased range of motion
o
Weakness/atrophy in affected limb
o
Changes in hair and/or nails - they may become brittle, grooved, grow faster or slower
o
Sweating changes/asymmetry
o
Tremors
o
Dystonia (Cramping of hands/feet)
The main symptom of CRPS is continuing pain out of proportion to the original injury. Many describe
this as burning, crushing and tingling pain. Burning seems to be the main constant, however all
symptoms can vary from person to person and even change over time.
Additional Related Issues - Keep your Doctor Informed:
o
Tinnitus (Ringing in your ears)
o
Sensitivity to sound
o
Stomach issues: Loss/Gain of appetite, Upset stomach, IBS (Irritable Bowel
Syndrome)
o
Cognitive Issues: Memory problems, Keys ending up in the refrigerator?
Can’t remember common words? You are not alone, many CRPS
sufferers have the same issue.
o
Trouble concentrating
o
Irritability
o
Extreme fatigue
o
Emotional disturbances - Depression, Anxiety, Agitation
o
Insomnia: The pain often prevents comfortable sleeping which in turn prevents the body from
entering into the REM cycle, rapid eye movement. REM is responsible for the healing properties
of sleep, without it, the pain becomes worse and this awful cycle continues.
o
Extreme sensitivity to cold or heat. Most patients have the cold sensitivity, however some have
sensitivity to heat.
o
Migraines
o
Hoarse voice
o
Dry eyes
o
Dizziness/vertigo
o
Immune dysfunction: more susceptible to colds/infections
o
Tendency to drop things
o
Sensitivity to smells, bright lights, loud sounds, and various foods. For example, some people
find they are more sensitive to light, so they need to wear sunglasses. People sensitive to
sound may describe sounds as piercing or painfully loud. This is also part of allodynia.
Symptoms and Signs
© CRPS C.A.R.E. 2015
“Imagine all of the
blood being
drained from your
veins, replaced
with lighter fluid
then lit on fire and
no one can see
it.” Unkown
An International consensus meeting was held in Budapest, Hungary in 2003 to review
issues related to CRPS diagnosis and revise accordingly. Below is that revision by these participants.
Symptoms must occur in at least 3 of 4 categories. Signs must occur in at least 2 of the following 4
categories. Recap: symptoms are felt/observed by the patient, whereas, signs are observed by someone else
(the observing Dr.) for clinical diagnosis. A diagnosis “cheat sheet” can be found here.
Sensory: hyperalgesia, allodynia
Vasomotor: temperature asymmetry, skin color changes, skin color asymmetry
Sudomotor/Edema: edema, sweating changes, sweating asymmetry
Motor/Trophic: decreased range of motion, motor dysfunction (weakness, tremor, dystonia), trophic
changes (changes in hair, nails, skin)
Clinical Guidelines - The Budapest Criteria
© CRPS C.A.R.E. 2015
Easy Guidelines Flow Chart:
Quick reminder: Symptoms the patient can feel, signs another person (Dr) can observe or see.
**THIS IS JUST A REFERENCE. Please do not use this to self diagnose. The information contained herein should NOT be used as a substitute for the advice of an
appropriately qualified and licensed physician or other health care provider. The information provided here is for educational and informational purposes only. In no way
should it be considered as offering medical advice. Please check with a physician if you suspect you are ill.
You may, however, fill out the SYMPTOMS and take this with you to your Dr’s appointment.
Is there any other
diagnosis that explains the
signs and symptoms?
Do you/the patient have
continuing pain which is
disproportionate to the
inciting event?
NOT CRPS
Sensory:
Hyperalgesia/Allodynia
Are non-painful stimulus
painful? Or
Are painful stimulus more
painful than expected?
Motor/Trophic:
Decreased ROM, or
weakness, or Motor
dysfunction (weakness,
tremor, or dystonia), or
changes in hair, nails or
skin
Vasomotor:
Temperature asymmetry,
or skin color changes, or
skin color asymmetry
NOT CRPS
Sensory:
Hyperalgesia/Allodynia
Are non-painful stimulus
painful? Or
Are painful stimulus more
painful than expected?
Vasomotor:
Temperature asymmetry,
or skin color changes, or
skin color asymmetry
Sudomotor:
Edema, or sweating
changes, or
sweating asymmetry
Motor/Trophic:
Decreased ROM, or
weakness, or Motor
dysfunction (weakness,
tremor, or dystonia), or
changes in hair, nails or
skin
NOT CRPS
CRPS
Sudomotor:
Swelling, or sweating
changes, or sweating
asymmetry
In closing, The flow chart and diagnosis “cheat sheet” above along with the diagnostic tools make this seem easy to diagnose.
We assure you it is not! Most patients see between 7-10 doctors and spend an average of 2-4 years (yes, years) before they
receive an accurate diagnosis.
We have not seen it better said than: “Complex Regional Pain Syndrome (CRPS) is one of the most misunderstood, over-
diagnosed, under-diagnosed, and undiagnosed diseases in medicine. The basic medical school training of the autonomic nervous
system, its physiology and its pathology, are too cursory and insufficient. The physicians approach to the diagnosis of CRPS, is
the same principal of the blind trying to define an elephant.” rsdrx.com
(19)
1) Biowizardry.info for CRPS Publications Http://creativecommons.org/licenses/by-sa/4.0/
2) Getson P. The Use of Thermography in the Diagnosis of CRPS: A Physician’s Opinion. Pain Pract. 2006;1:72-73.
3) American Society of Anesthesiologists Article, Aug 2005 Volume 69, Number 8 Complex Regional Pain Syndrome Update,
Timothey R Lubenow, MD Commitee on Pain Medicine
4) http://medical-dictionary.thefreedictionary.com
5) www.dictionary.com
6) www.ebmedicine.com
7) www.wikipedia.com
8) Science Daily Source John Hopkins March 31, 2013 “New Clues about how amyotrophic lateral sclerosis (ALS) develops”
9) http://www.canadianrsd.com/rsd-diagnosis/
10) medscape.com
11) webmd.com
12) National Institute of Neurological Disorders and Stroke; "Complex Regional Pain Syndrome Fact Sheet," NINDS.
Publication date June 2013.
NIH Publication No. 13-4173
13) Rsdhope.org
14) J Neural Transm 2011 Sep;118(9)1301-9. doi:10.1007/s00702-011-0601-1. Epub 2011 Feb 18
15) Practical Pain Management, Edited By: C. David Tollison, John R. Satterthwaite. Chapter 33 written by: Allen H Hord and
Linda H. Wang, page 500
17) http://www.wheelessonline.com/
18) Dr H. Hooshmand RSD PUZZLE #102
19) rsdrx.com
20) Lee GW, Weeks PM: The role of bone scintigraphy in diagnosing reflex sympathetic dystrophy. J Hand Surg [Am]
1995;20:458-63.
21) Chelimsky T, Low PA, Naessens JM, et al: Value of autonomic testing in reflex sympathetic dystrophy. Mayo
Clinic Proceedings 1995; 70:1029-40
22) European Association of Nuclear Medicine. Bone Scintigraphy. 2003. Link. Accessed November 14, 2007
23) Rommel O, Häbler HJ, Schürmann M. Laboratory Tests for Complex Regional Pain Syndrome. In: Wilson P, Stanton-Hicks
M, Harden RN, eds. CRPS: Current Diagnosis and Therapy. Progress in Pain Research and Management, Vol. 32. Seattle,
WA: IASP Press; 2005:139-159.
24) Mailis-Gagnon A. How are bone scans used in the diagnosis and treatment of CRPS? RSDSA. 2005. Accessed November
14, 2007.
25) Dr H. Hooshmand RSD PUZZLE #42
26) Dr Moseley, PhD Interview Jan 2007: howtocopewithpain.org
27) PARC (Promoting Awareness for RSD/CRPS)
28) Suinn, R.M. (1984). Imagery and sports. In W.F. Straub and J,M, Williams (eds,). Cognitive Sport Psychology. Lansing, NY:
Sport Science Associates
30) NCBI NIH.gov
31) Quantitative sudomotor axon reflex test in normal and neuropathic subjects. Low PA, Caskey PE, Tuck RR, Fealey RD,
Dyck PJ Ann Neurol. 1983 Nov; 14(5):573-80.
References
© CRPS C.A.R.E. 2015
Pain: A distressing sensation in a particular part of the body.
Allodynia: Pain from stimulus that does not usually provoke pain. Allodynia may also include increased sensitivity to smells, bright
lights, loud sounds, changes in weather, heat, cold, and various foods. For example, some people find they are more sensitive to
light, so they need to wear sunglasses. People sensitive to sound may describe sounds as piercing or painfully loud.
Dystonia: involuntary movements and extended muscle contractions
Hyperalgesia: Increased pain from stimulus that normally provokes pain.
Sensory: Sensation or physical senses
Vasomotor: Causing or relating to the constriction or dilation of the blood vessels.
Sudomotor: Describes anything that stimulates the sweat glands.
Edema: Swelling
Motor: Reviewing this site as well as other CRPS sites, Motor is defining a function; the movement of muscles.
Trophic: Trophic changes resulting from the interruption of the nerve supply. OR nutrition specifically the nutritive process.
Asymmetry: Not identical on both sides; uneven - Or in the case of the body not similar at all
Symmetry: Identical on both sides; even - Or in the case of the body very similar
Sign: An objective evidence - Something that can be physically seen or sensed by another. Example: Swelling and discoloration
are both signs as the doctor can physically SEE them.
Symptom: Subjective evidence - Something only the person experiencing it can sense. Example: Pain is a symptom as only the
patient can actually FEEL it.
Oedema: Fluid retention in the body causing swelling.
Atrophy: Wasting away or decrease in size of an organ or tissues in the body. Muscles often atrophy from lack of use in CRPS.
Paresthesias: Spontaneous pins and needle sensation
Dysesthesias: Unpleasant perception of sensory stimuli to skin
Trauma: Injury
Autonomic Nervous System: The portion of the nervous system over which there are no voluntary, conscious control, including
heart beat, breathing, intestinal movements, seating, etc. Subdivided into the sympathetic and parasympathetic nervous system.
(NEED TO FIND ANOTHER DEFENTITION THIS ONE WAS COPIED)
Definitions
© CRPS C.A.R.E. 2015
CRPS has been known by many names over the years. It wasn’t until 1993 when the IASP (International Association for
the Study of Pain) convened a multi-specialty physician consensus workshop to redefine and reclassify RSD (Reflex Sympathetic
Dystrophy) that the new nomenclature “CRPS” was born.
Until that time, CRPS was know as:
o
RSD - Reflex Sympathetic Dystrophy
o
Hand-Shoulder Syndrome
o
Causalgia
o
Sudeck’s Atrophy
o
Algodystrophy
o
post-traumatic Pain Syndrome
o
Painful Post Traumatic Osteoporosis
o
Transient Migratory Osteoporosis
o
Algoneurodystrophy
o
RSDS (Reflex Sympathetic Dystrophy Syndrome
o
Reflex Neurovascular Dystrophy
o
Traumatic Vasospasm
o
Acute Atrophy of Bone
o
Acute Peripheral Trophoneurosis
o
Clenched Fist Syndrome
o
Chronic Traumstic Edema
o
Mimi-Causalgia
o
Minor-Causalgia
o
Neurodystrophy
o
Pain-dysfunction Syndrome
o
Sympathalgia
o
Sympathetically Maintained Pain
o
Sympathetic Overdrive Syndrome
o
Thermalgia
o
Traumatic Angiospasm
Previous Names For CRPS
© CRPS C.A.R.E. 2015
This website was designed for easy navigation. You can get to any page multiple ways. Clicking on the main category in
the navigation bar will open to a page with all of the links listed in order and some general information on it. You, of coarse, can
also get to the specific topic by using the sub categories straight from the drop down menu. Some pages will also have additional
links to other pages for more information extending past that particular page’s category.
Newly Diagnosed Navigation
Navigating through the “newly diagnosed” section is the easiest of all. It’s hard enough when you are first diagnosed. So
overwhelming. The last thing you need is to try to figure out what information you need to learn about this monster. SO, we’ve
basically designed a section of this website just for you. It has all of the exact same links everyone else sees, but in order with
“next” and “previous” buttons at the bottom so you don’t get lost or have to figure out what’s next or where you’ve already been.
All of the information is EXACTLY the same, the pages are duplicates, but it’s your own little website. One less thing to think
about at this time in your “new” life. Once you have read through and have more of a grasp on the diagnosis, you can come back
and use the drop down menu above to get to the same information.
Definitions
Many terms in this website can be foreign at first. Therefore, we have included a definition page with easy to understand
definitions. Medical definitions can sometimes be confusing, we tried to explain them in as plain English as possible.
Specialists
Our Specialist section is divided into Doctors, Therapists and Lawyers. We are not not affiliated with, endorsed or sponsored by
any of them. Nor do we endorse them. They are merely a listing of doctors, lawyers and therapists who have either contacted us,
stated on their site, been recommended by others or are in the general industry of CRPS to help get you started on finding your
way. Please let us know if you know of a specialist you feel should be listed. Thank you!
We have highlighted the CRPS leaders in the US at the top of the Doctor page, prior to the search. These Doctors are the
leaders recognized by the CRPS community. We have confidence referring them, however, you are still recommended to do your
own research, not every doctor, even those considered highly regarded in the community, are the right fit for everyone.
Shop our Products
Our shop was designed with you in mind. Having CRPS can make us feel dependent on others for most activities through our
day. The shop has many daily living aids designed to gain back some independence. It contains the simplest dressing aids to
more complex eating aids and even aids you’d never think of. Take a browse through.
We are set up as a for-profit site, but let me explain. We are aiming toward what is called in some sates, but is not yet recognized
in the state of New Jersey as a L3C company. It’s called a Low-profit limited liability company. What this means is: yes, we are a
for-profit company, so any donations are NOT tax deductible. However, a majority of our profit goes toward helping the CRPS
community. Because we are in a state that does not recognize L3C companies, we are a LLC, for now. 100% of the proceeds on
CRPS awareness items, marked with this symbol go toward raising awareness. Sale on all other items are for-profit with
some of the proceeds helping to raise awareness.
As of now, we send pamphlets, at no cost, to doctors offices explaining CRPS for them to hand out to newly diagnosed patients.
We found through surveys many CRPS patients were “abandoned” when first diagnosed. You may have experienced this
yourself. The doctor said “you have CRPS” and then left you to “google it” once you left the office. This can be terrifying. We felt
our first coarse of action was to cut down on this happening. The pamphlet covers the basics of CRPS so the newly diagnosed is
not leaving the office confused and scared. They have some idea of the diagnosis and somewhere to turn. We also felt this would
enable more doctors the ability to understand the basic diagnosis of CRPS, so many could be diagnosed sooner. We started out
sending the pamphlet to Pain management (PM) doctors as well as neurologists throughout the Unites States with easy re-order
instructions (at no charge). Once we are able to reach every one, we will begin sending to Primary Care doctors. It is our goal to
reach every primary care doctor in the US. If they just glance at the signs and symptoms, which are included in this easy format,
our hope is diagnosis will be much faster and treatments will begin sooner.
If you would like us to send a few pamphlets to your doctor, either primary care or PM/Neurologist, or are a Doctor, please
contact us. We will be happy to.
Navigation
© CRPS C.A.R.E. 2015
This website was created by a CRPS sufferer. I remember when I was diagnosed. The Dr told me: “You have hand-
shoulder disease. Go home, make an appointment with this (pain management) Dr and Google it.” Then walked out of the room. I
was devastated. I had no idea what “hand-shoulder disease” even was. He offered no explanation. I didn’t even know if it was
terminal or what kind of Dr he was referring me to.
When I got home, I searched Google. There was so much information. Some of it was even conflicting. It was a maze! Didn’t
help much that he gave me an outdated term. Well, for the next 2 years all I did was research. Short of getting a medical degree, I
sorted out the accurate information from the trash. Read through research papers, found the leading doctors, and non-profits, asked
questions from a patient and medical stand point, then researched more. I became consumed with CRPS and the truth. I was (am)
obsessed.
I NEVER WANTED ANYONE TO FEEL THE WAY I DID LEAVING THAT DR’S OFFICE... EVER!
I had done all the research. Sure, there are some very good websites out there that provide excellent information. They helped
me the most when I was first diagnosed and they do wonderful work. But, in my opinion, they are still missing something. I’m hoping
this website fills those gaps. I hope this takes some pressure off the need to spend so much time researching to find the answers so
you can spend more time resting, connecting and remembering to find joy in your life.
The other main ingredient of this website is the shop of products to make life easier. It took me six months of my husband
holding the hair dryer for me to realize there is actually a product that holds a hair dryer. And about a year to find a one handed can
opener. When I say a can opener changed my life, my husband thought I had truly lost my mind, but I’m sure there is someone out
there reading this right now thinking “I need one!”. Yup, I’d say the best thing ever, BUT then I found a one touch jar opener. Let me
repeat that slowly... a ... one... touch... jar... opener! I bought three. Who doesn’t need one of those? CRPS or no CRPS. Now two
very special elderly women in my life have one as well. SO, to go along with my idea to have everything in one place, to make life
easier for CRPS sufferers, the shop had to be included. I don’t want anyone wasting 6 months or a year frustrated depending on
someone else when there is a product that can help. If it’s out there, you’ll find it here. The proceeds go to keeping this site running,
pamphlets sent to Dr’s offices for newly diagnosed patients and other miscellaneous awareness and educational opportunities.
We are set up as a for-profit site, but let me explain. We are aiming toward what is called in some sates, but is not yet
recognized in the state of New Jersey as a L3C company. It’s called a Low-profit limited liability company. What this means is: yes,
we are a for-profit company, so any donations are NOT tax deductible. However, a majority of our profit goes toward helping the
CRPS community. Because we are in a state that does not recognize L3C companies, we are a LLC, for now. 100% of the proceeds
on CRPS awareness items, marked with this symbol go toward raising awareness. Sale on all other items are for-profit with
some of the proceeds helping to raise awareness.
As of now, we send pamphlets, at no cost, to doctors offices explaining CRPS for them to hand out to newly diagnosed patients. We
found through surveys many CRPS patients were “abandoned” when first diagnosed. You may have experienced this yourself. The
doctor said “you have CRPS” and then left you to “google it” once you left the office. This can be terrifying. We felt our first coarse of
action was to cut down on this happening. The pamphlet covers the basics of CRPS so the newly diagnosed is not leaving the office
confused and scared. They have some idea of the diagnosis and somewhere to turn. We also felt this would enable more doctors
the ability to understand the basic diagnosis of CRPS, so many could be diagnosed sooner. We started out sending the pamphlet to
Pain management (PM) doctors as well as neurologists throughout the Unites States with easy re-order instructions (at no charge).
Once we are able to reach every one, we will begin sending to Primary Care doctors. It is our goal to reach every primary care
doctor in the US. If they just glance at the signs and symptoms, which are included in this easy format, our hope is diagnosis will be
much faster and treatments will begin sooner.
If you would like us to send a few pamphlets to your doctor, either primary care or PM/Neurologist, or are a Doctor, please contact
us. We will be happy to.
About Us
© CRPS C.A.R.E. 2015
You may have landed on this page wondering what it’s all about or why it’s necessary. It’s here for many reasons.
First, CRPS is a very intricate syndrome and difficult to understand and even harder to explain. Hence the reason this page was
formed. Some doctors care and have their own analogy to explain it and others, well, just don’t. This page has compiled many
explanations from doctors and patients around the world to help you understand and explain this monster. Most are short and
sweet, but all are pretty easy to understand. This way, it’ll be easier to explain to friends and family as well as to strangers when you
are out and about without explaining all the ins and outs of this disease while getting a blank stare.
Just remember, these are analogies, not exact explanations of CRPS, just meant to assist in a quick overall explanation.
Think of the sympathetic nervous system as the thermostat in your body and it controls each “room” (limb) separately. Your
HVAC system works perfectly, but your thermostat is broken. So, your HVAC system doesn’t know whether to send heat, cold, pain,
sweat, swelling, nail & hair growth, bone density and blood flow. Actually, it doesn’t know what to do and keeps sending everything.
Your fight or flight response is confused and in constant reaction. Basically, if you put your hand on a hot stove, your fight or
flight response kicks in and pain signals tell you the stove is hot and to remove your hand from the stove. Which you do. Except in
CRPS, your system misfires and doesn’t recognize that you actually removed your hand, so it keeps sending stronger and stronger
pain signals to get you to respond to protect your hand from getting burned and get you to remove it from the stove. The problem is
that your body doesn’t recognize your hand is no longer on the stove and you are no longer in danger, yet the pain signals never
stop.
Your brain receives messages from your nerves. Think about playing the telephone game when you were a kid... remember
how the last person and the first person never had the same message? Welcome to how your nerves and brain are now
communicating. For some reason, the pathway back to your brain are damaged.
Easy Non-Medical Explanations
© CRPS C.A.R.E. 2015
Below is a great video to share with family and friends
Please share it on Facebook or any other social media. Ken McKim, besides being an all around great
guy, is very good explaining many other chronic illnesses. We thank him for this video! You can check
out his other videos at his website:
www.dontpunishpain.com
There is no single diagnostic tool for CRPS/RSD. Physicians must rule out any other condition that would
otherwise account for the degree of pain and dysfunction before considering CRPS/RSD. The Budapest Criteria is the
only true Diagnostic Guideline, the following are to assist in documenting the clinical evaluation. Physicians diagnose
it based on patient history, clinical examination, prior tests and laboratory results. Early diagnosis and appropriate treatment
offer the highest probability of effective treatment and possible remission of CRPS/RSD.
Diagnostic Tools
© CRPS C.A.R.E. 2015
Thermography is the single best diagnosis tool for CRPS to be used in conjunction with the
patient’s medical history and the Budapest symptom checklist after ruling out all other possible
conditions. The thermogram should be performed at a reputable medical facility. The quality of
the test may vary among providers.
According to Philip Getson, DO, such “changes are controlled by the sympathetic nervous system
and alterations in the sympathetics cause alterations in thermal (infrared) imaging which do not conform to (skin
temperature & blood flow) patterns.”
In regard to CRPS, Dr. Getson claims that the lack of symmetry in skin temperature patterns confirms an initial clinical
diagnosis. This temperature difference is often dramatic and using the thermal imaging camera is hundreds of times
more sensitive than palpation alone. The mechanism of thermal imaging allows for perception of altered skin
temperature to one-tenth of one degree centigrade.
Dr H. Hooshmand states that diagnosing CRPS without thermography is like diagnosing a heart attack without an EKG.
Thermography testing is completely painless. The patient will disrobe down to thong for women and athletic supporter
or bikini briefs for men. You will then sit in a 68-70°F climate controlled room to acclimate for 15-20 minutes. After
acclimation, the technician takes a set of pictures from what looks like an old fashion camera. There is no physical
contact. You will be asked to move around so the technician may take pictures from different angles. (Never allow cold
stress thermographic imaging for CRPS! Find another place. This is, however, done for thermographic breast cancer
screening.)
**On a side note: As of now, there are not many doctors set up to do thermography testing. It is not necessary for diagnosis. The
Budapest criteria is the ONLY stand alone clinically approved diagnosis. However, thermography gives additional “proof” of diagnosis
when done properly. If you are going through a law suit or workman’s comp, it is a good idea to have it done. It is easy for anyone to
look at and see there is an actual problem. As you can see in the picture above, without training of any kind, there is something wrong
with the left arm/hand. Usually in these circumstances, they will do two sets of images.
Bone scanning is best for demonstrating bone-based disease and clarifying neurological lesions
found by x-rays. This is accomplished by measuring the blood flow through the skeleton.
The three-phase bone scan uses immediate and delayed images to study blood flow. These scans
show increased blood flow into the CRPS-affected area with an increase in diffuse activity during the
“blood pool phase” described below.
Only diagnostic in 25-55% of patients. Triple Phase Bone Scan has been used most often in the past three decades,
however, it’s role in diagnosing CRPS has been debated, is controversial and is slowly being phased out.
The patient lies on a table while a gamma camera circles his or her body, taking images as the scan progresses. A
radioactive tracer is injected into the patient that concentrates in the bones. A technician takes images of the body area in
question during the initial phase of “blood flow,” then again when the blood “pools” in the area. Two hours later, images
will show the tracer in the actual bones during the “delayed phase.”
These tests are usually done to help identify other possible causes/reasons for the pain; for example, carpal tunnel syndrome,
muscle tears. These issues can be stand alone or in addition to CRPS.
EMG, CAT scan, X-rays and MRI’s:
Thermography
Triple Phase Bone Scan
Other Diagnostic Tools
Sweat Test - Also called Resting Sweat Output (RSO) and Thermoregulatory Sweat Test (TST): The room temperature is
raised, which, in turn, raises the blood and skin temperature. An indicator dye allows the extent of sweat production to be
seen.
Quantitative Sudomotor Axon Reflex Test (QSART): Sweat glands are stimulated via iontophoresis of a cholinergic agent and the sweat production is measured as an increase of humidity through a hygrometer R. Norman Harden, MD, Director of the Center for Pain Studies at the Rehabilitation Institute of Chicago says, “Since there has been no validation research for QSART, it must be considered experimental and is not considered diagnostic in any context. Its ‘accuracy’ (ie, sensitivity and specificity) has not been properly assessed. QSART is generally unavailable except in a few academic centers, and therefore is not generally available nor of general utility.” Sympathetic Nerve Blocks: Historically nerve blocks were done prior to a positive diagnosis, however, as we are learning more, it has become necessary to abandon this belief. See: Ice & CRPS and treatments to learn more.
Ice should never be used for CRPS. Neither should hot/cold contrast baths.
Our friends at RSDhope.org say it best: “Ice will also cause the blood vessels to constrict more, reducing the blood flow to the
extremities, increasing the pain, causing color changes, etc. but the real damage is to the nerve's myelin sheath; basically, the
protective cover for the nerve. Huh?
What is a Myelin Sheath and why is it important? "The tissue surrounding the nerve fibers in the brain, spinal cord, and optic
nerves. This covering is made of a fatty substance called myelin. It insulates the nerves and helps them send electrical signals
that control movement, speech, and other functions. When myelin is destroyed, scar tissue forms, and nerve messages are
not transmitted properly."
courtesy of http://www.hopkinsmedicine.org/news/index.html
The same is true for the bath therapy, keep it warm.
We know, it feels good at the time you put it on. We know it seems to make sense on some level, burning pain, apply cold. But
in the end what you are doing is constricting the blood vessels, reducing the blood flow, and then when the ice is removed the
vessels do not rebound because the protective sheath around the nerve has been damaged. More and more with each
application, causing even more of the nerve damage you were trying to prevent in the first place.”
Thanks RSD Hope!!!
Application of ice freezes and coagulates the myelin (fatty tissue insulating large nerve fibers) exactly like ice freezes and solidifies melted butter. As the ice freezes the large nerve fibers, causing freeze damage to the myelinated nerves, the patient develops sensory loss and pain due to permanent damage to the large sensory nerve fibers. This aggravates the RSD by adding sensory nerve pain of non-sympathetic origin to the initial thermal sensory pain of sympathetic origin. As a result, Ice provides total anesthesia and relief of pain for several minute the same way as the hand becomes numb being exposed to snowballs in the winter. However, a few hours after the cessation of ice exposure, the pain recurs with vengeance due to reactive enlargement of blood vessels after the constriction of blood vessels due to exposure to ice. This phenomenon causes excellent relief of pain with ice treatment followed by not only aggravation of pain, but damage to the nerve fibers adding sympathetic independent pain (SIP) to the original sympathetic mediated pain (SMP). The end result is aggravation of the RSD and SIP resulting in failure of nerve blocks and then the patient is told, "You do not have RSD anymore because the nerve block did not help you and the Phentolamine test proved that you do not have SMP or RSD." 2 In most RSD patients ice makes the condition worse and can cause denial of diagnosis and treatment for the patient. One last comment: this study was on advanced cases of RSD. In early stages of RSD, without exposure to ice, there is far lower percentage of RSD patients who from the beginning suffer from permanent damage to large areas of sympathetic nerve fibers with intolerance of heat and secondary erythromelalgia. It becomes obvious that heat-cold challenge physical therapy is nonsensical because it end result is one temperature extreme neutralizing the other and ice challenge further damaging nerve fibers. Please stay away from any ice exposure, even if you can not tolerate heat. H. Hooshmand, M.D. More information about the Myelin Sheath: Demyelination is the loss of the Myelin sheath insulating the nerves and is the hallmark of many diseases/illnesses. These include: Multiple Sclerosis (MS), Acute Disseminated Encephalomyelitis, Guillain- Barre Syndrome, Inherited demyelinating diseases such as: leukodystrophy and Charcot-Marie-Tooth disease and in more serious cases, Canavan Disease. Recently, the myelin sheath has also been discovered to play a fundamental role in the onset of amyotrophic lateral sclerosis (ALS) in a study done at John Hopkins. So you can see, the myelin sheath is not something you want to cause ANY damage.Ice and CRPS
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Types of CRPS
© CRPS C.A.R.E. 2015
CRPS is divided into two types. Type I, previously known as RSD (Reflex Sympathetic Dystrophy) and Type II,
previously known as Causalgia. The designations were determined by the type of inciting event as both have
similar signs and symptoms.
Type I was previously known as RSD, Reflex Sympathetic Dystrophy. There is no discernible nerve damage in type I. The
majority, approximately 90%, of CRPS sufferers have type I. Easily put: type I is caused by any injury other than a distinct
major nerve injury.
Type II was previously known as Causalgia. There is distinct, clearly defined nerve injury in type II CRPS.
Prior to 1994, these two types were considered two separate syndromes even though they show the exact same
symptoms and signs. In 1993, the IASP (International Association for the Study of Pain) convened a multi-specialty
physician consensus workshop to redefine and reclassify RSD (Reflex Sympathetic Dystrophy) that the new nomenclature
“CRPS” was born.
Treatments
© CRPS C.A.R.E. 2015
At this time, there is no cure for CRPS. Treatments are aimed at controlling/relieving pain and increasing quality of life.
Treatment is most effective when started within the first 6 months, however it is still possible to respond well to
treatment after the first 6 months. Just try to get treatment as early as possible for the best outcome. As with any
disease/illness/syndrome there are many different types of treatments. We have broken these treatments down into the following
categories: Medical, Therapy, Medication, Alternative therapies, and Dietary. We will briefly describe each on this page and link to
the individual subtopic below, as well as the navigation bar above.
Treatment for CRPS is most effective when approached in a cohesive multidisciplinary approach. It is important to talk to your
doctor about coordinating the treatments which you and he/she best feels would suit your individual needs. Each CRPS patient is
individual and not any one or even all treatments will work for each individual. It is important to have a doctor who listens to you.
This is, after all, your body. You have the final say. We hope to assist in “doing your homework” and helping to find the right
questions to ask for you.
There are pro’s and con’s to each and every treatment listed here. Every single one has helped someone and every single one
has not. Some are more promising than others, and we hope to help guide you through that mine field. Bottom line, though, it is
your body. We can’t stress that enough. You and your doctor know it much better than anything we can write here. We hope
listing the good, bad and ugly about each treatment on the treatment pages will help guide you to ask the necessary questions to
your doctor..
Before we get started.
A little medical lesson: Originally, CRPS is Sympathetically Mediated Pain (SMP), meaning the pain signals originate at the
injured site. This is the acute stage. Certain treatments will only be beneficial during this stage where they can directly affect the
origination of the pain at the site of injury or any sympathetic treatment.
Somewhere between 12-18 months (for most patients), the origination of the pain moves from the injured site to the brain. This is
called Sympathetically Independent Pain (SIP); sometimes also called Independently Mediated Pain (IMP). This does not mean
the pain is “made up” or “all in your mind”. It means the pain signals are now generated in your brain rather than the site of the
injury.
Medical Treatments
These treatments are performed by a doctor. Most are invasive to a varying degree. These include:
•
Nerve Block (various)
•
Ketamine infusions
•
Lidocaine infuson
•
Spinal Cord Stimulator (SCS)
•
Pain Pump ****possible wrong term**
•
Surgical Sympathectomy
•
Bisphosphonate treatment
•
Intravenous Immunoglobulin (IVIG)
Therapy Treatment
These treatments are performed by a therapist. The most important thing is to
keep moving, gently. These include:
•
Physical Therapy
•
Occupational Therapy
•
Mental Health Therapy
o
Psychological
o
Psychiatrist
Medication
There no medications specifically designed, at this time, for CRPS. All medications used at this time treat one or more of the
symptoms/signs of CRPS or are used “off label”. These include:
•
Anti-inflammatory (non-steroidal)
•
Corticosteroids
•
Seizure medication
•
Anti-depressants
•
N-methyl-D-aspartate (NMDA) receptor antagonists (we’ll explain why these work)
•
botulinum toxin injections
•
Topical local anesthetic creams - often a mixture
•
Opiods
•
Nasal Calcitonin
•
•
non-steroidal anti-inflammatory drugs to treat moderate pain, including over-the-counter aspirin, ibuprofen,
and naproxin
•
that treat inflammation/swelling and edema, such as prednisolone and methylprednisolone (used mostly in
the early stages of CRPS)
•
drugs initially developed to treat seizures or depression but now shown to be effective for neuropathic pain,
such as gabapentin, pregabalin, amitriptyline, nortriptyline, and duloxetine
•
botulinum toxin injections
•
opioids such as oxycontin, morphine, hydrocodone, fentanyl, and vicodin
•
N-methyl-D-aspartate (NMDA) receptor antagonists such as dextromethorphan and ketamine
•
nasal calcitonin, especially for deep bone pain, and
•
topical local anesthetic creams and patches such as lidocaine.
Complimentary/Alternative Therapy
There are a multitude of alternate therapies ranging from extreme to mild, expensive to free. Please contact us if we have missed
any. These include:
•
Acupuncture
•
Acupressure
•
Relaxation Techniques
•
Meditation
•
Breathing Techniques
•
Chiropractic
•
Calmare
•
Hyperbaric Oxygen Therapy (HBOT)
•
Mindfulness
•
Biofeedback
•
Herbal Medicines
•
Antioxidants & Nutritional supplement (including vitamins)
•
Massage (lymphatic massage)
•
Moist Heat
•
Photonic Stimulator
•
Qi Gong
•
Yoga
•
The Pod
•
Tai Chi
•
Chi Kung
•
Medical Marijuana (Only legal in some states)
•
Neurologic Relief Centers Technique (NRCT) www.nrc.md
•
Boosting immune system
New and Emerging Treatments
Germany and Italy seem to be the forerunners on CRPS treatments. Most of the treatments listed here are not yet available in the
United States and many are still in the testing phases in foreign countries. Some are making their way to the US and have started or
will start testing, We will list which ones they are on their designated page. These include:
•
Stem cell therapy utilizing patients own stem cells (need to research ** self
note)Used to boost immune system in Germany
•
Neurel Therapy with Ozone
•
Blood Ozone therapy
Example A shows how
SMP (Sympathetically Mediated Pain) and
SIP (Sympathetically Independent Pain)
slowly shift control of the pain origination.
Example A:
Overwhelmed trying to wrap your mind around all the ins and outs of CRPS yet? Don’t worry, there isn’t a test. It’s not important to
know all these terms or remember everything going on. We know, there’s a lot to it. Remember, most doctors don’t even “get it”.
Hey, you are already a step ahead! So don’t worry, take a deep breath and keep reading. It’s okay. The main thing is to grasp the
“idea” of what’s going on behind the scenes or at least, that there is something going on behind the scenes. This basic concept will
make it easier to understand some of the treatment options and why they may or may not work in your situation. Take another deep
breath, it’ll be okay. You are not alone.
As with any disease/illness/syndrome there are many different types of treatments. We have broken these treatments
down into the following categories: Medical, Physical Therapy, Medication, Alternative therapies, and Dietary. We will
briefly
describe each on this page and link to the individual subtopic below, as well as the drop down menu above.
*****Something about the sooner treatment is started, the better chance of remission.****
Medical Treatments
© CRPS C.A.R.E. 2015
Medical Treatments
These treatments are performed by a doctor. Most are invasive to a varying degree. These include:
•
Nerve Block (various)
•
Ketamine infusions
•
Sympathectomy
•
•
Spinal Cord Stimulator (SCS)
•
Pain Pump ****possible wrong term**
•
Intravenous Immunoglobulin (IVIG)
Emerging treatments for CRPS include:
Intravenous immunoglobulin (IVIG). Researchers in Great Britain reported that low-dose IVIG reduced pain intensity in a
small trial of 13 patients with CRPS for 6 to 30 months who did not respond well to other treatments. Those who received
IVIG had a greater decrease in pain scores than those receiving saline during the following 14 days after infusion. A larger
study involving individuals with acute-phase CRPS is planned.
Ketamine. Investigators are using low doses of ketamine—a strong anesthetic—given intravenously for several days to
either reduce substantially or eliminate the chronic pain of CRPS. In certain clinical settings, ketamine has been shown to
be useful in treating pain that does not respond well to other treatments.
Hyperbaric oxygen. Several studies have investigated the use of hyperbaric oxygen therapy for chronic pain. Individuals lie
down in a tank containing pressurized air, which delivers more oxygen to the body’s organs and tissues. Although research
is still experimental, some researchers report hyperbaric oxygen can reduce swelling and pain, and improve range of motion
in individuals with CRPS.
IVIG: (emedicine.medscape.com)Multiple studies have been done and this shows promise.
Nerve Blocks
There are various nerve block techniques used for CRPS. They are also used for two reasons. Some doctors use nerve blocks to assist in diagnosing CRPS. This is no longer considered a viable option of diagnosis for three reasons. Nerve blocks only work while the CRPS is still sympathetically maintained. As the CRPS progresses, it becomes ????????????? and third, not every nerve block is administered in the correct area. Nerve blocks are typically the first course of treatment. Usually done in “series” of 3-4 to start. • Lumbar Sympathetic Block - CRPS in legs/feet, and/or back • Cervical Nerve Block - Performed in the front of the neck for CRPS in shoulder, arm/hand and or neck • Epidural Nerve Block - injection into the area which surrounds the spinal cord • Occipital Nerve Block - injection right at the back of the head, usually for migraine sufferers • Indwellling SNB - continuous sympathetic nerve block, also called an infusion or a lidocaine infusion • Stellate Ganglion Block - Injection into the sympathetic nerve tissue located on either side of the voice box • Facet Joint Injection Each of these injections only takes a few minutes. It depends on the treating doctor where it will be done, whether in their office or a surgical suite, and whether you will be asleep or awake for the procedure. It is best to ask them specifically. You may have some pain in the injection site for a few days after the procedure. A successful procedure will produce a warmer limb with less to no pain lasting a few hours on and varies patient to patient. The medication in the injection varies based on the type of block (see below). Stellate Ganglion Blocks usually consist of local anesthetic (like lidocaine or bupivacaine) and epinephrine (adrenaline). The local anesthetic will usually wear off within a few hours, the lasting benefits will vary patient to patient. Stellate Ganglion Blocks will almost always produce Horner’s Syndrome. Horner’s Syndrome will usually go away within a few hours. It is characterized by a constricted pupil, weak, droopy eye & eyelid. It almost looks like half of the face has “melted”. This is often considered a sign of a successful block as the stellate ganglion the injection needs to access is located directly behind the area which controls the nerves in your face. Lumbar Sympathetic Block usually consist of local anesthetic (like lidocaine or bupivacaine) and epinephrine (adrenaline) or clonidine. The local anesthetic will usually wear off within a few hours, the lasting benefits will vary patient to patient.
Ketamine Infusions
Ketamine has been around for many, many years. It has been used in anesthesia for surgical procedures. It is used for CRPS in one of four ways: Ketamine coma, low dose infusions, high dose infusions, in-patient infusions and Ketamine troches (sub lingual) or nasal spray (covered in our medication section). First we’ll cover why it’s thought Ketamine works for CRPS patients. It’s not yet proven exactly why it works, but the key is that it research has shown that it does. Pain signals are routed through N-Methyl-D-aspartate (NMDA) channels throughout the body. Ketamine, an NMDA receptor antagonist blocks this capability, and pain signals aren't transmitted. Essentially it interferes with the neurotransmitters in the NMDA receptors to interrupt the pain signals sent from the central nervous system to the body. Ketamine Coma: The ketamine coma is not performed in the US. It was originally done only in Germany and is now only done in Mexico. The patient would be placed in a medically induced coma for a period of 5-7 days while given an extremely high dosage of Ketamine, typically between 500-700 mg per hour. The theory behind this type of treatment was to allow the body to be completely pain free and to allow the brain to reboot, like a computer. The costs for this treatment vary greatly, plus the cost of travel, ranging from $10,00 to $50,000. Ketamine In-patient: These infusions are performed in a hospital usually over a period of 5 days. The patient is awake, meaning not in a medically induced coma, although many do sleep through most of the infusion on their own. Usually, the dosage is between 25-35 mg per hour depending on many factors. Out-patient boosters are required for a period of time determined individually by the treating doctor to sustain the relief. The costs for this treatment also vary widely depending on the doctor/hospital ranging from $$10,00 to $50,000, although the average is around $25,000. This form of infusions has the highest success rate as many go to zero pain relief and have sustained that level for many months. It is important to remember it is not a cure, but does have a higher success of remission. Ketamine Out patient: This is the same for low dose and high dose, with the only difference being the actual dosage. The infusions are done in an out patient setting, usually in a doctor’s office or clinic, for approximately 4-5 hours per day where the patient would return home after the infusion. Each doctor’s protocol varies, however the treatments usually look something like this: infusions everyday for 2 weeks, then 2 treatments a week for 4 weeks, then 1 treatments every other week for 4 weeks. Or some variation of “stepping down”. This is the least effective of the three, however does provide relief to many. The cost is per day and can range between $300-$2000, yes, per day, depending on the doctor/clinic. So be sure to ask prior to starting treatments. The difference in costs just in the first 2 weeks can be extreme: $3,000-$20,000 for the same treatment. Your doctor will determine the correct dosage for you. Some clinics/doctors only do up to certain dosages, so ensure you ask appropriate questions. Side effects: Most common side effects are nausea, headaches, sleepiness (which is usually very welcomed by CRPS patients), hallucinations, and irritability. Talk with your doctor/nurse if you experience any side effects. Most clinics/hospitals will provide medication to counteract any unwelcome side effects.
Sympathectomy
Surgical Sympathectomy is the same idea as a nerve block except instead of injecting anestetic into the nerves, the nerves are severed, cut or burned. There are many different terms but they all are the same basic idea. Doctors will usually recommend a sympathectomy if the patient has had successful nerve blocks but the pain relief was not lasting. Sympathectomies are controversial. “Some experts think it is unwarranted and makes CRPS worse; others report a favorable outcome.” NINDS.
Let’s start with the very basics here. What’s the difference between Physical Therapy and Occupational Therapy?
“Occupational Therapy (OT) aims to promote health be enabling individuals to perform meaningful and purposeful
activities across the lifespan. It’s focus is helping people live as independently as possible. Restoring function. Brushing teeth,
combing hair, personal care. OT also includes Hand therapy.
Physical Therapy (PT) is concerned with the remediation or “fixing” of impairments and disabilities and the promotion of
mobility, functional ability, quality of life and movement potential. It’s focus is helping people move better and get relief from
pain. Restoring movement and mobility. Standing up, walking, getting in and out of bed.” www.differn.com
So, which is better? Neither. They are both excellent therapies. They both have the same goal in helping you. Only you and
your doctor can decide which is best for your situation. Many doctors will prescribe OT/PT as they do overlap in many areas.
So don’t get too overwhelmed on this section. We will, however, give a little more insight.
Occupational Therapy:
OT is necessary if you have had CRPS a while and are not functioning independently with daily care. They can also help you
get back to work by focusing on specific tasks you perform at work and recreating them in therapy.
Hand Therapy (a division of OT) will help restore function and movement specifically to your, well, hand. Therapists will assist
in gaining dexterity in your fingers and, very importantly for CRPS, opening up your hand. Many of us tend to get a closed
“claw”. (Depending on the treatment center, they may consider occupational therapy only as hand therapy, so you may want
to clarify before making an appointment if you do not need/want hand therapy)
Physical Therapy:
PT will help in getting your muscles moving again to their fullest potential while addressing the pain. Most CRPS patients with
lower extremity CRPS will have PT. Upper extremity CRPS may prefer a PT if there is a movement issue in the shoulder.
It’s not as important which type of therapist you see as the therapist themselves when dealing with CRPS.
First, you want to ensure you find a therapist who wither has successfully worked with CRPS patients, or is willing to learn with
you and not have the attitude they know everything.
Never use Ice!!! If a therapist wants to use ice on your CRPS limb, let them know why you can’t use ice on CRPS, if they still
want to use ice: run (or wheel) as fast as you can. See more on ice & CRPS here. This is also true with contrast baths.
Physical & Occupational Therapies
© CRPS C.A.R.E. 2015
Motor Graded Imagery
Motor Graded Imagery (GMI) is the newest and most exciting (okay, we try hard not to include our own opinions here, However, THIS is exciting for CRPS. You will see why in a minute. Dr. Moseley.............................................................................. They are not yet sure why graded motor imagery works, but that it does. For many of us with CRPS, just the thought of moving our CRPS limb causes additional pain. It is a way of remapping the pain sensation so that it is no longer associated with movement. This treatment process is done very slowly through a precise systematic regimen. Okay, so what does it do? Dr Moseley explains it as this: “...the first stage seems important because it might unlock the connection in the brain, a completely unconscious connection, between limb movement and danger. The second stage seems to be important because it reinforces this without moving the sensitive body part. The third stage with the mirrors might use visual information, which says that everything is fine, to continue this. There is another theory that the process remaps the body part without activating the pain networks.” GMI is divided into 3 stages to be integrated based on the patient’s response. The 3 stages are: Stage 1: Laterality recognition Stage 2: Explicit Motor Imagery Stage 3: Mirror Therapy Stage 1, Laterality recognition: Not so easily said, right? So, what does it mean? Simply, the ability to determine left from right. The portion of the brain controlling either the left or right limb affected by CRPS can atrophy. We tend to not use our limb due to pain, so our brain can atrophy just like our muscles. Research has shown it takes longer for CRPS patients to correctly identify the affected side (right or left) when shown pictures. Okay, now that we know what is laterality recognition, you are probably wondering how it is actually applied. In laterality recognition we will retrain the brain to accurately recognize left and right. We do this by looking at pictures of hands or feet, whichever is affected. The key here is to pay attention to your body! You do not want to cause additional pain to the affected area. This stage is done a few times a day for a period of three weeks OR until a consistent score of 80% correct in less than 2 seconds per image is accomplished... WITH NO ADDITIONAL PAIN! Don’t get bored, discouraged, cheat, or skip ahead. There are many ways in which this stage may be done. You can clip pictures of hands (or feet) from magazines, mark the back with an “L” or “R”. You’ll want to start with at least 20 images, but work on 20 at a time. With 20 pictures in front of you, sort them into two piles as quickly as you can, a right pile and left pile. Then go back through them to see how many you actually got correct. Keep a log to see if you are getting better and time yourself. It’s even better if someone else clips and marks the pictures for you (no cheating). Another way to do this is a wonderful tool, which we are not associated with, but extremely well done. The NOI group has made a laterality recognition tool. Yes, that’s right... a tool. You can go to their website and look through their pictures, they keep “score” and “time”, so you don’t have to. They also have a quite handy little app called Recognise (yes, with an “s”). At the time of writing this it is $8.99, but so worth it in our opinion. If using Recognise, you’ll first start out with Vanilla hands (or feet) and work your way to Context hands (or feet). Remember... No additional pain! If you get symptoms or additional pain in your CRPS limb, back down a little. Don’t do it as many times a day, or as many images. Stage 2, Explicit Motor Imagery: Simply, explicit motor imagery is thinking about moving without actually moving. As we said above, for someone with CRPS, just thinking about moving the affected limb can be extremely painful. Think about this for a minute: Have you ever watched “America’s funniest home videos”? Doesn’t everyone in the room cringe when someone gets hurt? How about watching a man’s reaction when he sees someone hit below the belt? See someone hit their funny bone? What’s your reaction then? These images cause a sense of pain even thought there is no injury to the person watching. The same basic principle applies, although there is real pain for the CRPS patient. So what actually is done during the explicit motor imagery stage? We think. Yup, sounds easy, doesn’t it? Well, it’s not quite that easy. Remember, we are dealing with someone who just thinking about moving the affected limb causes pain. So let’s break it down a little further. We imagine moving the limb, we imagine doing things that would cause pain, but we imagine them without pain. Sounds slightly more challenging, right. Don’t worry, it’s not that rough. The idea is to start training the brain that these movements are not threatening or painful. All great Olympians imagine their coarse or routine prior to the event. They go through it in their mind, every turn, curve, jump. Research has shown motor imagery improves performance. Consider this: It’s practice, you imagine a particular task (keep it to one or two at a time) over and over again in your mind. Think of every step, the smells, the way the air feels, any and everything to make it as real as possible in your mind - without pain. This step is also done for a period of three weeks before moving on. Stage 3, Mirror Therapy: The idea behind mirror box therapy is to trick your brain. Basically, you hide one limb behind a mirror while you focus on the reflection in the mirror of your other limb. Your brain thinks it is the CRPS limb moving without pain. You’ll start out with little or no movement, just looking at your hand (or other limb or feet), examining it without discoloration, swelling, shiny skin, etc. Slowly work up o small movements and then, over time, larger movements.
Complimentary/Alternative Treatments
© CRPS C.A.R.E. 2015
You are probably wondering why we are calling this page “complimentary/alternative treatments”. We know it’s a
mouthful. Alternative refers to using a non-mainstream approach in place of conventional medicine. Complimentary
generally refers to using a non-mainstream approach together with conventional medicine. We suggest discussing these
with your doctor so he/she can put together a comprehensive program for you. Your doctor is/should be your partner throughout
your journey. We cannot stress this enough. If he/she is not, you do not have the right doctor for you. Many doctors are very
happy to include these in your program. The important thing is that they know everything concerning your care.
*****Something about the sooner treatment is started, the better chance of remission.****
Complimentary/Alternative Treatments
These treatments are performed by a doctor. Most are invasive to a varying degree. These include:
•
Nerve Block (various)
•
Ketamine infusions
•
Spinal Cord Stimulator (SCS)
•
Pain Pump ****possible wrong term**
•
Intravenous Immunoglobulin (IVIG)
Emerging treatments for CRPS include:
Photonic Stimulator: a infrared light device stimulates acupuncture points in the body. Please see our Photon and Dr Pollett
files
TAKEN FROM PARC- NEED TO REWORD The photonic stimulator (used in PHOTON THERAPY, PHOTODYNAMIC
THERAPY) is a hand held device which emits infrared light and is held over specific points located on the body. The infrared
light penetrates the skin to help increase blood flow and circulation. It is a non-invasive, safe, painless beam of light which
activates or produces particular physiological results based on applied neuropsychological principles.
For those with RSD/CRPS, the sympathetic nervous system is dysfunctional in that it does not properly control the
cutaneous blood flow to the areas of the skin. These altered blood flow patterns look like hyperthermia (increased heat) or
hypothermia (decreased blood flow). There is a temperature asymmetry in the body. The photonic stimulator can regulate
blood flow and normalize temperature patterns. (Please see our FAQ's)
Photon therapy has been used to treat many conditions, injuries from sports, auto accidents work injuries, or painful
diseases e.g. back/neck/hip/knee and CRPS (complex regional pain syndrome). The TIP (Thermal Imaging Processor) is a
digital infrared imaging system that measures heat emanating from the body and is used to measure progress before and
after treatment is completed, offering a unique form of visual feedback. For more information please click on our PHOTON
FAQ's.
PHOTON TREATMENT: FREQUENTLY ASKED QUESTIONS(FAQ's)
1. Will I feel anything?
Most people feel no sensations other than the movement of air from the small fan used to cool the emitter and the vibrations
from the motor. The doctor orders the intensity of the lamp and sometimes there is a warmth sensation.
NOTE: There are NO electric shocks or burning sensations.
2. Are there any contraindications?
As with any therapy (ultrasound, EMS therapy, etc.) it is not applied over cancer, infection, pregnant uterus, eyes or tumor
People with these problems CAN be treated with photon therapy at other sites in their body.
3. What does photon therapy do to me?
Photon therapy works in four general ways: a) localized muscles relaxers, b) localized anti-inflammatory, c) localized pain
reliever and d) to help injured nerves heal. Because there are no drugs used, the doctor is able to target specific areas that
are to be treated and there are no "all over the body" side effects. Sometimes the patient does feel more relaxed all over
because their symptoms have changed. This is related to the restoration of the parasympathetic nervous system. They are,
however, able to operate a car in a safe manner.
4. What conditions are treated with photon therapy (photodynamic therapy)?
Most disorders of the nervous system have responded well. These conditions include but are not limited to: Diabetic
neuritis, peripheral neuropathy, CRPS/RSD, pain disorders, etc. Many disorders of the muscles have also been successfully
treated: whiplash, trigger points, muscles spasm, myositis, and fibromyalgia. Other success have been met with Failed Back
syndrome, TMJ dysfunctions, joint pains and injuries from sports, auto accidents and work injuries.
5. Can photon be used on children and senior citizens?
Yes because there is no painful experience.
6. How can you tell that I am getting any benefit from treatment?
The doctor performs an examination prior to treatment and again when photon therapy is finished. There must be a
measure of improvement. High resolution thermal imaging examination must be performed in complex neurological
conditions and establish the specific dosage and requirements for the patient.
7. How many treatments do I need?
Each patient and each diagnosis requires a different quantity of care. A usual trial of treatment is four sessions to document
sustained improvement. If this cannot be accomplished, treatment should be terminated.
8. Can anyone give photon treatments?
No. Only trained licensed health care professionals are permitted to apply photon therapy. It is required that proper chart
notes, treatment plan and protocol are followed.
FAQ
© CRPS C.A.R.E. 2015
Many of the Faq’s contained here can be found throughout the website. However, we know sometimes you just need a
quick answer without searching and reading. With that in mind, we have created this page. The Faq’s are shown below
and
will also link to the particular page in which that information can be found in case you do want to read the answer in
more depth without searching for it. Please contact us if you have any questions that have not been answered here. We would
like to keep this (and all out pages) complete with all information anyone researching CRPS will ever need. We will do the
research for you so you don’t have to. After all, there are so many other things you need to be focusing on right now.
[
Open All | Close All ]
1) What is CRPS?
Complex Regional Pain Syndrome, CRPS for short, is a chronic progressive disease characterized by constant severe pain, swelling, color and temperature changes in the skin as well as pathological changes in the bone.
2] Should Ice be used for CRPS?
NO! "We know, it may feel good at the time you put it on. We know it seems to make sense on some level, burning pain, apply cold. But in the end what you are doing is constricting blood vessels, reducing blood flow and the when the ice is removedthe vessels do not rebound because the protective sheath around the nerve has been damaged. More and more with each application, causing even more damage of the nerve you were trying to prevent in the first place." rsdhope.org
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This script does not work with older browsers like NSv4.x but degrades very well.
3] How is CRPS diagnosed?
CRPS is diagnosed through on signs and symptoms based on the "Budapest Criteria". There are diagnostic tools to assist in confirming diagnosis, however, only positive diagnosis based on the Budapest criteria is necessary.
4]What types of treatments are avalaible?:
There are many treatments available. Medical, medication, therapy, as well as complimentary and alternative treatments.
5] My family and friends just don't understand CRPS. Is there another, easier way to explain it?
YES! There are many other ways to explain it. We have this page set up with a few anaologies which make CRPS much easier to explain and understand.
6] Does CRPS spread?
YES! CRPS spreads in up to 70% of patients. See more.
7] Compatibility:
This script works with all the newer versions of browsers like
IE5+, NS6, Opera and Firefox.
This script does not work with older browsers like NSv4.x but degrades very well.
This script does not work with older browsers like NSv4.x but degrades very well.
8] Notes:
This script works with all the newer versions of browsers like
IE5+, NS6, Opera and Firefox.
This script does not work with older browsers like NSv4.x but degrades very well.
This script does not work with older browsers like NSv4.x but degrades very well.
9] Compatibility:
This script works with all the newer versions of browsers like
IE5+, NS6, Opera and Firefox.
This script does not work with older browsers like NSv4.x but degrades very well.
This script does not work with older browsers like NSv4.x but degrades very well.
10] Notes:
This is one of the most compact scripts of this nature that
you can find in any JavaScript archives.
11] Example & Explanation:
This is the hidden text that was revealed when the header was
clicked. Such hidden text is generally
related to the main header which opens them. You can add any
number of collapsible headers. Clicking on
the header when the text is seen hides the text. Additionally
if a header is clicked it will automatically
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This script works with all the newer versions of browsers like
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This script does not work with older browsers like NSv4.x but degrades very well.
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13] Notes:
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14] Compatibility:
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There are many similarities between CRPS and fibromyalgia. People can have both CRPS and fibromyalgia or full body
CRPS. It is possible for the two to be confused, which is why proper diagnosis by a competent physician familiar with
both is
so important.
We will further explore the similarities and differences below. The most distinct differences are:
•
Fibromyalgia in definition is “chronic, widespread pain”; whereas CRPS is localized (at least to begin with) to a limb or body
part
•
Diagnosis criteria are very different: Fibromyalgia criteria is determined by tenderness or pain in at least 11 of 18 tender
points. Diagnosis for CRPS is based on the Budapest criteria.
•
While Fibromyalgia is can be extremely painful, no other chronic pain condition mirrors, or even comes close to, the
intensity of CRPS. See the McGill Pain Scale for a comparison.
Often times, CRPS patients will develop fibromyalgia.
There is a very interesting answer from Dr Phillip Getson, taken from an interview for the Dr Oz show:
“Q. When I read about RSD/CRPS, it almost sounds like fibromyalgia. How do they compare?
A. This is a really interesting point. In my opinion, fibromyalgia is really a form of CRPS. Fibromyalgia and RSD/CRPS have many
similarities: Both involve serious pain and mostly afflict women. However, CRPS is far more involved with more intense pain
levels and internal organ manifestations.”
CRPS’ Relationship to Fibromyalgia
© CRPS C.A.R.E. 2015
Medical Protocols
© CRPS C.A.R.E. 2015
If you’ve read through the rest of the site, had CRPS a while or been reading up on it, you have learned by now this
beast does not like to follow rules. That is, if there are such thing in the medical world. It seems, however, that CRPS
patients require special treatment. The reason for the special treatments on the following pages are mainly to prevent
spreading. Remember, any injury (or anything your body perceives as an injury) can cause a spread. We dedicate this part
of the website to helping you recognize certain situations you may not consider that could cause a spread, the information
needed for the situations you know may and the proper protocols to share with your doctor/hospital in those situations.
****NEED TO REWORD THAT SENTENCE*****
All pages will give you the information to read through as well as link to a downloadable word document to easily print out to
share with your healthcare provider.
•
Hospital - covering E.R. visits to operations
•
Dental - covering cleanings to dental procedures, including which ones to stay away from
•
Blood Draw -
Going to the Dentist with CRPS
© CRPS C.A.R.E. 2015
The following was written by Dr. Pradeep Chopra
Going To The Dentist With CRPS - A printable version can be found here.
Dental health is very important for those of us with CRPS as many of the medications that we take cause dry mouth.
With reduced saliva, we are more at risk for decay. Biotine is very helpful for dry mouth. It comes in toothpaste, mouth wash
and mouth spray. Personally I prefer the mouth spray. It can be found in the isle with toothbrushes.
Cleanings:
I try to schedule my teeth cleaning for just before a ketamine infusions.
I ask my dentist to numb my gums with topical gel
Be sure that your dentist knows that you have CRPS
If you have ketamine troches or nasal spray use them before and after the appointment.
Dental Work:
Dental emergencies can not be predicted. Here are some things that you can do to minimize a flare/spread.
Start Vit C 500 mg and continue for 2 weeks
Ask your dentist to prescribe Minocycline to prevent infection and it has a pain fighting component
As your dentist to numb your gums topically first
Marcaine without epinephrine is the preferred numbing medication. If your physician doesn’t have Marcaine be sure
that the lidocaine that they have does not have epinephrine in it.
They should give you more marcaine than they would another patient.
If you already have face/mouth CRPS; ask for nitrous oxide (laughing gas)
If you have ketamine troches or nasal spray use it before the visit and after as needed.
Dental Surgery (tooth extraction)
Many dentists have ketamine. Meet with the oral surgeon first. Ask them if they have ketamine and if they can use that
to sedate you. It may be preferable for you to have the extraction done in an outpatient surgery center with an
anesthesiologist.
The anesthesia technique will vary with the surgery. These are general guidelines and the patients doctor should make
their own decisions. Here are some guidelines:
Avoid surgery unless you have to.
Pre – operative
1. Start gabapentin or Lyrica a 2 weeks before
2. Minocycline 1 day before and continue for 2 weeks after
3. Vitamin C 500 mg one daily. Start day befure surgery and continue for 45 days after
surgery
Intra-operative
1. MUST use iv ketamine as part of anesthesia
2. Apply Synera patch or some numbing medicine patch over IV site before insertion of
3. IV must be inserted with minimum trauma (first shot)
Post operative
1. Continue low dose IV ketamine in the recovery room for a few hours – very important
2. Continue, minocycline, gabapentin/Lyrica
Copyrighted material. DO NOT COPY WITHOUT GIVING RECOGNITION TO THE AUTHOR DR PRADEEP CHOPRA
This is a point we must understand taken from Dr Hooshmand: (Dentists) “do the root canal exploration, they find unusual
things such as a dead and scared up nerve or necrotized (dead and liquid black tissue) bone structure. These are nothing but the
side effects of RSD causing inflammation, lack of circulation, and death of the nerve and bone tissues. It is best not to keep digging
into the area surgically because it only aggravates the condition.”
Why is that important to understand? More importantly, why is it important for your dentist to understand? If your dentist does
not have prior experience with CRPS, or not fully understand it, he/she may feel these signs are dental in nature and may suggest
additional dental procedures to clean out and heal the area. We need to understand CRPS is causing the “death of the nerve and
bone tissue as well as the inflammation”. Make sense?
Root Canals-
Going to the Hospital with CRPS
© CRPS C.A.R.E. 2015
The following was written by RSDSA
Going To The Hospital With CRPS - A printable version can be found here.
Patient Tips
1. Bring a written copy of your medication regime. It is important to verify whether your medication regime can be taken
care of solely through use of the hospital’s pharmacy. Some medications may not be part of the hospital’s formulary.
2. Avoid having ice applied to the RSD affected limb.
3. Instruct all hospital staff to always ask before touching you!
4. Request that the surgery protocols be adjusted so that the pre-op have be done after anesthesia (catheter is in
place for epidural or whatever). It feels like a lawnmower has been run over your legs when they shave without
anesthesia.
Procedures
1. Whenever possible patient should be in a quiet part of the hospital
2. In a semi-private room, patient should be in the second bed to avoid inadvertent bumping
3. A Zone Air bed should be used (adjust mattress pressure to patient preference)
4. Heat and air conditioning should be well regulated
5. Standing orders should be issued for patients to have warm blankets
6. Foot Cradle to hold bed linens off body area (will diminish tactile stimuli)
7. Frequent linen changes may be necessary due to hyperhidrosis (increased sweating)
8. Allow family members to bring in clean sheet and pillowcases for patient. Hospital sheets are not soft and can irritate
the skin.
9. Place a sign above bed designating affected limb
Procedures
1. Perform a phlebotomy on unaffected limb only.
2. Avoid needle stick injuries as far as possible – combine a blood test from different physicians into one procedure.
3. Ask that the thinnest needle possible be used.
4. Use a topical numbing cream (EMLA® or Synera® patch).
5. Let them know that the veins are ‘difficult’. CRPs patients have thin and friable veins.
6. Ask for the most experienced person to insert IV or blood draw.
7. Warm Alcohol or Betadine wipes with warm running water on outside of package before opening package (these
wipes can be very cold to the patient).
8. If PICC site is available, see if blood can be obtained from PICC instead of using vena puncture technique.
Blood Pressure and Pulse Rate
1. Use cuff on unaffected limb only
2. Use thigh cuff if both upper extremities are affected Transport
1. Ask what kind of help the patient needs when transferring to a stretcher or wheelchair (simply touching arms or legs
may cause hyperalgesia)
2. Use extreme care over bumps, such as elevator doorways
Feeding
1. Be careful not to touch patient extremities with bedside
Patient Identification
1. Place red bracelet on unaffected limb
2. Pace red dot sticker on patient chart.
DO NOT COPY WITHOUT GIVING RECOGNITION TO RSDS.org
Getting Blood drawn with CRPS
© CRPS C.A.R.E. 2015
The following was written by RSDSA
Getting Blood drawn With CRPS - A printable version can be found here.
Blood Draw Protocol:
1. Perform a phlebotomy on unaffected limb only.
2. Avoid needle stick injuries as far as possible – combine a blood test from different physicians into one procedure.
3. Ask that the thinnest needle possible be used.
4. Use a topical numbing cream (EMLA® or Synera® patch).
5. Let them know that the veins are ‘difficult’. CRPs patients have thin and friable veins.
6. Ask for the most experienced person to insert IV or blood draw.
7. Warm Alcohol or Betadine wipes with warm running water on outside of package before opening package (these
wipes can be very cold to the patient).
8. If PICC site is available, see if blood can be obtained from PICC instead of using vena puncture technique.
DO NOT COPY WITHOUT GIVING RECOGNITION TO RSDS.org
Prognosis
© CRPS C.A.R.E. 2015
There is no cure for CRPS. Everyone is different. Some achieve remission, others control pain through
various treatments and live with a good quality of life, others have unremitting pain for the rest of their lives. The
main thing to remember is there are no absolutes. Everyone is different. Keep trying.
The sooner treatment is started, the better chances of remission. Children and teenagers tend to have a higher rate of
remission. As we discuss in the treatment section, not every treatment works for everyone, so it is important to keep trying.
Since there is not yet a cure for CRPS, the best hope is for remission. What is it? How is it achieved? Once achieved
will it come back?
First, let’s clear one thing up. CRPS does not “burn itself out”. This was a myth believed many, many years ago which
had no medical backing.
What is remission?
The defenition of remission is: “disappearance of the clinical and subjective characteristics of a chronic or malignant
disease”. Okay, now that we know what it means, let’s apply it to CRPS. Certain signs and symptoms (the Budapest
criteria) are the only way for diagnosis. Therefor, remission would be the absence of these signs and symptoms.
Remission is not achieved the same way by everyone who does achieve it. The likelihood of remission increases when multi-
disciplinary treatment is started early. Very rarely, it can go into spontaneous remission, where the signs and symptoms just
vanish. This doesn’t happen very often, but it can happen. Once remission is achieved, any injury can bring it back.
Very few actually achieve remission, but many are able to lead productive, good quality lives. The many treatments available
enable CRPS patients to “try” many different avenues to succeed at pain relief.
Does CRPS Spread?
© CRPS C.A.R.E. 2015
Anything can cause a spread for a CRPS patient. We need to be very careful for each and every time we undergo any
procedure. See our protocols to assist in preventing spreads for the following:
•
Dental Procedures
•
Operations
•
Blood draws
Unfortunately, the hazard of spread increases with each limb affected. Even surgery to implant a SCS (spinal cord stimulator)
can cause a spread.
Spreads are not only limited to limbs. CRPS can affect ANY part of the body. This can include:
•
All internal organs
•
Face
•
Mouth
•
Back (especially when undergoing surgery for the spinal cord stimulator)
•
Eyes
•
Neck
•
Genitals
•
Breasts
•
Abdomen
•
A simple way of looking at is: If you have a nerve there, CRPS can spread there.
Can it spread to the entire body? YES! In a small number of cases, approximately 8% or less, it has spread to the entire body.
It is extremely common for CRPS to spread to encompass an entire limb, called contiguous spread. What do we mean? Say the
original injury happened in a finger, it is extremely common, and happens most often, for the CRPS to encompass the entire
arm.
The spoon theory??? Simply, yes. We’ll explain in a minute. You will see the “spoon theory” used for every chronic
pain, cancer, disease, disability, major illness and every other severely life changing medical condition we’ve missed. It was devised
by Christine Miserandino. You can read more about her and her personal story here. There is no better way to explain it than to
watch the video of her explaining it herself, below. It is a very easy to understand explanation of how extremely exhausting it is to be
chronic ill.
No one explains it quite like she does, so we really recommend the video. However, if you just don’t have the time, or resources to
watch it at the moment, we’ll try to explain. Basically, you start out each day with a certain number of spoons which represent our
energy for the day. Yes, something tangible that the not chronically ill person can actually hold, because it’s impossible to hold
someone else’s energy. Let’s say you start the day with 10 spoons. Each task you complete “costs” you a certain number of spoons.
Of which you will take from the person you are explaining it to, either literally or figuratively.
So, you wake up. Get out of bed - 1 spoon. Make breakfast - another spoon. Shower, we all know showering is terribly exhausting
(no, it’s NOT just you) - 2 spoons. Get dressed - 1 spoon. Do you do your hair? Make up? Ahh, this is where chronic illness gets
tricky. Is doing your hair and make up (if your a woman) worth 2 spoons? Let’s see. We started with 10 spoons. It’s not even lunch
time and we’ve already used 5 spoons!!! Let’s say you have the day off. You run some errands (maybe an hour or two) - 4 more
spoons. Rest. Cooking an easy dinner - 1 spoon. Clean up - 1 spoon. WAIT!! You’ve used 11 spoons, but you only had 10 to start
with??? That means you will have to do less tomorrow and rest longer. For CRPS patients, over using spoons usually means more
pain the following day or more pain that evening.
You will often see the term “Spoonies”. This refers to people who have bonded together through the spoon theory. Once you watch
the video it will make more sense.
Spoon Theory
© CRPS C.A.R.E. 2015
Below is a great video to share with family and friends
Please share it on Facebook or any other social media. Christine Miserendino, has helped so many people
explain to others what we go through daily with her “Spoon Theory”. We thank her for this and this video!
You can check out her story, “Spoonie” merchandise & resources at her website:
www.youdontlooksick.com
Now think back to the example above for a moment. We used over our spoons (or energy) for the day , but we didn’t really do
anything out of the ordinary. For the chronically ill, this is life. Every day is a challenge. Every moment of every day is a choice.
Remember back to whether or not to do our hair/make up? What if we chose to do them? We may not have had the energy, or
spoons, left to make dinner. What if we had our nephew’s birthday party to attend that day? Socializing is enjoyable, but also
consumes a large amount of spoons. Chronic pain patients try their hardest to not appear sick. That’s right. We try to appear well in
social settings. Who wants to look sick? It’s not very easy and requires a large amount of spoons. It could easily take 3-4 days of
rest and/or excessive pain to recover from a social outing.
The spoon theory has also been called “pacing”. Basically, we need to “pace” ourselves in our tasks to not cause excessive pain or
exhaustion. We need to save energy for the things we need to do and the things we want to do. If that means not cooking or not
cleaning to be able to attend a party, then so be it. If it means staying in bed for a day prior to attending a wedding and again the
day after, then that’s what must be done. If you must clean for 15 minutes then rest for an hour and then clean for another 15
minutes and then rest another hour and repeat until the house is clean. Well, that is pacing. Even if it takes a week to clean the
house.
Starting to get the idea? Yup, CRPS is exhausting. Everything about it is exhausting. Pain takes energy. Your body is constantly
fighting the pain, it’s working even when you aren’t. You are not lazy. Repeat after me: “I AM NOT LAZY, MY BODY IS WORKING
DILIGENTLY AGAINST THIS PAIN. CRPS IS EXHAUSTING. PAIN IS EXHAUSTING. I AM NOT LAZY.”
Remember the last time you had the flu? Weren’t you tired? Chronic pain is like having the flu 24 hours a day, 365 days a year, year
after year without a break. Explain that to the next person who doesn’t understand why you are tired.
Daily living Aids
In the Kitchen
In the Kitchen
In the Car
In the Kitchen
In the Car
In the Kitchen
In the Kitchen
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ea. Duis labore aute
commodo. Nulla adipisicing
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esse ad laboris tempor.
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magna lorem, dolore do nulla
proident, ut officia culpa lorem
ea.
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sit tempor sint sed ipsum ut
esse ad laboris tempor.
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commodo. Nulla adipisicing
non fugiat nulla aliqua. Officia
sit tempor sint sed ipsum ut
esse ad laboris tempor.
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magna lorem.
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esse ad laboris tempor.
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magna lorem.
Daily living Aids
