|
INTRODUCTION
These tips were compiled from a survey of RSD/CRPS
patients on the Internet. We hope they will help you in your efforts
to cope with RSD/CPRS. While we recognize that they are not for
treating a patient medically, we find that these tips help us cope
with the daily challenges of living with RSD. If just a few of these
tips help, we can rest assured that this survey was worth it.
Take a page from the game; use these
tools to outwit RSD.
GENERAL ADVICE FROM RSD
PATIENTS
Don't allow yourself to live up to others' expectations, live
up to your own, they are more reasonable.
Don't be ashamed to say "I can't do it now." People
that don't see you struggle each day don't know better; you have
to tell them.
Accept who you are today. We can't look back, only forward.
Learn to forgive.
Don't forget how to be compassionate. I sometimes lose patience
with others' small physical complaints
You should talk to your doctor about what treatments
might be helpful to you such as meds, biofeedback, SCS, etc. But
regardless, you have to realize that you are not physically the
same as you used to be. You have to learn to accept and be happy
with what you can do and not unhappy with what you can't do. That
is how I try to cope with the pain, but it is not always that
easy.
HOUSEHOLD
| TIP |
PURPOSE |
COMMENTS |
| chenille wash rags |
desensitize the hand or wash skin |
I can hold the rag or gently rub the hand with it when I can
stand it. They can be found at most bath or body shops for about
$10. |
| rubbermaid stool for planting flowers |
to help with gardening to avoid squatting or bending in the
garden |
Helps with planting and when you are tired, you can just rest
on the chair |
| plastic, collapsible wagon |
for gardening, getting groceries to and from the car, laundry
to and from the washer |
A great labor saving device. Try the local hardware stor |
| electric potato-vegetable peeler |
for peeling vegetables |
It saves your hands.Try the hardware store. |
| tall three wheel bar stool |
to sit on while cooking |
saves on standing |
| a cutting board with prongs |
to hold the food when slicing |
object stays put while you are working on it. |
| electric knife |
for slicing foods |
is easy to use and saves your hands. |
| claw type pick up sticks |
to avoid bending and picking things up from the floor |
saves a lot of work and also helps you reach those things
you could not reach in tall cupboards |
| small Hoover or dust buster |
easier to use than the vacuum and can clean up small spills |
It is smaller and has attachments, so it is easier to use
and then another person can vacuum with the big vacuum cleaner
later |
| Place objects in one spot |
to pick up before leaving the room |
If you have multi-levels in your home, place objects by the
stairs so that the next person going up or down can take them.
Don't make a special trip. Have everyone in the house help to
save time and energy |
MEMORY
AND ORGANIZATION
| TIP |
PURPOSE |
COMMENTS |
| post it notes, pocket calendars, white memo boards and datebooks |
to log medical appointments, birthdays, anniversaries, special
events, things to do lists, your schedule, etc. |
Many RSD people have memory problems and writing everything
down helps transfer it to long term memory. |
| printing or writing cheques |
to avoid cheque writing for those with RSD in the hands |
Many dept. stores such as Walmart has the ability to print
your cheques .Check with your local store. If your store doesn't
do this, have the cashier write our your cheque and just sign
it.
Another option: before you leave home, get a family member to
write the cheque, have the cashier fill in the amount and just
sign it at the checkout. |
| medication dispenser with MTWTF and time boxes |
to remember what pills you have taken and what is left. |
You can purchase these and most drug or department stores.
|
| pencil pillows, Dr. Grip |
to reduce the strain of holding on to the pencil or pen which
makes writing easier. |
These can be very handy and purchased at a local stationery
store. There is also a pen called Dr. Grip with a fat grip area
for grasping the pen. |
PERSONAL
CARE
| TIP |
PURPOSE |
COMMENTS |
| foam pillow |
provides a raised lip to support the neck |
Before one purchases a special foam pillow, I suggest that
a person try to find one that has a special type of foam that
provides contoured support with a trough-like shape that provides
a raised lip to support the neck. The foam-like material is
firm yet malleable and will never completely compact from the
weight of your head. For one of higher quality, I paid about
a hundred dollars four years ago. It was made in Denmark. At
the time, a store called 'Relax the Back' sold them. It is a
relatively new, small franchise. I know that there is one in
Los Angeles, Austin, TX. and Phoenix. |
| long silk underwear |
for hypersensitive skin |
I suggest wearing long silk underwear under one's clothing
I have yet to find anything to bypass the heat factor that the
silk promotes during hot weather, however, I prefer the heat
over constant stimulation..I also recommend soft cotton fabrics
for clothing as well as bed linens for the same purpose. |
| jobst type glove |
to help with swelling |
The ones that stretch work well as they move with your skin
and not against it. I also wear jobst sleeves on both arms for
the same reason. |
| manicure, pedicure, massage, etc. |
Do something to make you feel good about you - for women get
a manicure (if the RSD is in your legs) or visa versa. For men
- hmmm... ask a guy cause I don't know what helps a man's self
esteem and my husband is taking a nap. |
No, you don't have to leave the house , in most areas there
are people willing to come to you! |
| skin lotion |
to combat dry skin on hands and feet |
if possible, remove dead skin first with soft brush or file,
then put on lotion and rub gently. Avon Moisture Therapy Hand
Cream is good. It is soothing and makes skin feel soft. |
| for the partner of an RSD patient |
to help your partner focus on something other than the pain |
Learn massage techniques, reflexology or put pain salve on
his feet (not on RSD sites). |
| Take a bath, or deeply soak the RSD site with Epsom Salts.
Use two cups in a warm bath. |
While soaking try and stretch and move the area to maintain
mobility in the area |
My docs recommend 2x per day for 30 min - for the soaking.
Try and make this a relaxing time - light candles, read a good
book - the pain for me is less in the tub. |
SUPPORT
| TIP |
PURPOSE |
COMMENTS |
| Friends |
Support, encouragement, love |
Friends can be found most anywhere, although very good friends
can be hard to locate. They should come at no cost... with no
strings attached. They can lift you up when you are down, give
advice when you don't know what to do, let you gripe incessantly
for hours and still come back for more, hold your hand when
it really hurts, do your bidding when you are unable, defend
you no matter the cause, and give you one more reason to go
on. |
STAYING
WARM
| TIP |
PURPOSE |
COMMENTS |
| Dual control heated mattress pad. |
for when you just can't have covers near the RSD site, but
your significant other is already warm! |
Available from many laces, but the best price dual control
model I found was through a company "The Company Store"
made by Sunbeam. |
| fleece,Velux blanket or flannel sheets |
to lay on and for warmth when other materials don't work.
something soft against the skin. |
Try your local department store. |
| wearing mittens (regular and polar fleece) |
to keep hands warm. |
1.Mittens are warmer than gloves because if you start out
warm, the warmth in the fingers is shared.
2.Wool is best but thinsulate, polar fleece and special materials
that have been developed should be used.
3. You can get glove and mitten liners that keep you warmer.
They are a thin fabric and the best have little pieces of
what looks like aluminum foil woven into the cloth. You put
these gloves near the heat and then the metallic pieces help
keep the warmth in. If these liners are cold, do not use them
because the metal also holds the cold.
4. Make sure that the hand coverings go into the jacket sleeve
so that no cold will get to your skin.
5. If you have to go out and you have no gloves, two layers
of socks will help you stay warm. |
| a down (feather cover) |
keeping in body heat, staying warm. |
very light weight and tends to conform to the shape of whatever
it is covering. |
| sock/pantyhose/old towel with rice |
to relieve neck pain and spasms |
You can make one out of panty hose or a sock filled with rice.
I even have one that I cut to fit just the right way out of
an old towel and then you pop it in the microwave for about
2-3 min .It stays hot for about 45 min. It's cheap and made
to fit. |
| Warm, moist towel or microwaveable moist heat. |
to relieve neck pain,spasms or shoulder spasms. |
The one I use is approx. 5" by 36"; and has velcro
fastenings at the ends, so I can just place it on my neck or
shoulders and fasten it so it will stay there. It is also very
good to use for pain in your mid to lower back. If you think
this might help, you should be able to find one at your local
pharmacy. |
| arm warmers |
to stay warm |
I have made arm warmers from socks with the toes cut out.
I did this originally to keep the arm more comfortable under
a hard plastic thumb spica splint. I also made sleeves of polar
fleece which slide on and off under my coat or even to wear
to bed when things are really bad. I also found that buying
an oversize coat helps. (down is great) It allows room for layering
without extra pressure and even with mittens I can pull the
end of the sleeve around my hand and pinch it shut in my fist
to keep all of the heat in. |
| microwaveable sleeve |
to keep warm |
It's called a "Bed Buddy" and I found it at a store
called Lamont's. They are a chain, but I don't know where they
are located other than in Alaska and the NW U.S. |
gloves
a) light weight cotton gloves
b) heavy elastic quilters gloves |
a) to keep hands warm while typing on the computer
b) for your hands when wearing crutches |
Most pharmacies have light weight cotton gloves. They are
normally used by people who need to sleep with cream medication
on their hands, but they have lots of other uses. They are pretty
cheap too - $1 -$2 per pair. The quilters gloves are heavy elastic
and can be found at any sewing store. They are more for wearing
when your hands and wrists hurt from using crutches. |
ALTERNATIVE THERAPIES
| TIP |
PURPOSE |
COMMENTS |
| Using non-medical, alternative therapies like creative visualization
or guided imagery, as well as Reiki. |
Creative Visualization and Guided Imagery allows the person
using it to create a new "blueprint" for themselves
- to see themselves pain free and to work toward that goal (or
any other goals they may have), and gives them the power of
controlling their own body and feelings. |
This has been a G-dsend to our daughter, Ayala, and alternative
therapies have allowed her to reduce and to finally come off
all the meds she had been taking to supposedly help reduce her
pain levels. She uses them to lower the pain of migraines and
flare ups of burning or cold pain, too. |
| Skin Desensitization |
To desensitize the skin using various household items can
reduce the sensitivity to touch in CRPS. |
To begin the process I use the following items in sequential
order. I put my foot in a box of sand. When I can tolerate this
I try the next thing: rice, then red beans. Then I use a soft
towel, rougher towel, sponge and finally brushes.Remember this
process takes time and effort. |
| Hand Exercises |
To keep the fingers and hand flexible, reduce stiffness and
muscle atrophy. |
I use play dough and roll it in the affected hand to make
a ball, a fat and a thin sausage. With a sprayer from can or
an empty spray can, I put each finger on the sprayer and press
the pump several times. |
| Arm exercises |
To maintain muscle mass, strength and flexibility in the arms.
|
To begin, I use a small can like a soup can and do side arm
raises, front raises, tricep and bicep curls. I start with one
set and work slowly up to 15 reps. When I can do three sets
of 15 reps with this can, I graduate to the next level, a heavier
object such as a large soup can. I use the same procedure and
gradually use heavier objects each time. This can be done while
I am watching my favourite TV show. |
| The Feldenkrais Method. I have used some of this along with
a technique called Myofascial Unwinding |
Unwinding is a myofascial release exercise and Feldenkrais
is about movement of the body. |
Contact Mark Reese or Donna Ray-Reese at The Reese Movement
Institute, 160 Chesterfield Drive, Suite 8, Cardiff by the Sea,
CA 92007 (619) 436-9087 |
| your favourite music |
To take my mind as far away from the pain as possible. Usually
I visualize that me or someone else is ice skating to the music.
I make up wonderful choreographies to the music that are all
possible because anyone can do anything in my mind. |
A decent pair of headphones, I find with the open air music
(no headphones)I cannot concentrate enough. Some good music
and a cuddly mate is a bonus. |
FIGHTING
PAIN
| TIP |
PURPOSE |
COMMENTS |
| relearning tasks differently |
to help against pain |
Accept that you may have to relearn how to do some things
differently so as not to create more pain. Keep your mind busy
on something other than pain, store the pain in the back of
your mind. It is still there, but don't focus on it all of the
time. Accept that it may take you longer to accomplish something,
if it now takes hours of doing a task and stopping to rest then
doing some more of the task. Don't feel like your failing, be
glad that eventually you are able to complete the tasks. |
| keeping a daily chart three times a day |
pacing yourself with the pain |
I keep a daily chart three times a day and rate my pain and
my depression/emotional state so that I can pace myself better
and (since I also make notations on the chart) monitor anything
that makes my pain elevate.Red, yellow and green circles warn
family members as to the mood or pain level of the RSD member,
by placing circles on fridge RED-hurts very much, YELLOW need
love and hugs, not feeling well, GREEN-means Momma is in the
house and on the ball so look out. It does help mostly at the
beginning when the family is still trying to figure out your
moods. Signs that tell but don't state are great. |
| Sputty Ball from FAO Schwartz or Shopper's Drug Mart |
something to squeeze when you are in pain |
It is about the size of a large tomato, red with a green stopper
in the top, is thin rubber and is filled with baking powder.
It is great, works wonders for those times when I need it..
Costs about $5, worth every penny. |
| Get educated about RSD. |
Make the right choices for you, participate in your own treatment
and wellness |
Read everything that you can about all the treatments you
are considering and all the meds you are on. Don't take one
doctor's or patient's opinion on anything - check it out through
a number of different sources. The Internet , PARC site and
links page list the best web sites. |
| Get a Medic-Alert bracelet |
If you should be in an accident the ER docs need to know that
you have RSD, and who to call(because in my experience many
ER docs don't know what RSD is) If you need surgery they can
do things to minimize post surgery RSD flare-ups and spreading! |
Medic Alert record should contain phrase "no surgery
without preoperative blocks". A drugstore e.g.. Shopper's
Drug Mart will have a form to fill out or a number to call.
|
ASSISTIVE DEVICES
| TIP |
PURPOSE |
COMMENTS |
| A chair that has a special head rest and neck support. |
for head, neck and arm support |
The chair has special rotating arms that support my arms and
shoulders so that I do not have to hold my arms up to type.
This really helps reduce the stress on the shoulders.The chair
also has special pump up lumbar support and the seat pan is
contoured to hold the buttocks. One usually will not find them
in retail shops. Better office furniture sales companies may
have them. I did find a retail shop that sold 'Body Built' chairs,
but their price was about double the price of the office furniture
sales company...however, many office furniture sales companies
are not open to non-corporate clients. |
| wheelchair |
for long walking stints |
If you do not usually use a wheelchair, it's easier and also
saves your energy.When flying, ask for wheelchair service. Not
only will you save time but you will have energy when you arrive
at your destination. |
| wheechair |
for the simple things |
I have had RSD for over 13 years and during this time I have
spoken to hundreds maybe even thousands of people with RSD.
I often run across a perception that is very limiting; the belief
that to use any assistive devices would be giving up. But why?
If using a wheelchair when you go to the mall will allow you
to enjoy the trip more, why not use it? Yes, it's very important
to use your limbs as much as possible but it is also very important
to be able to enjoy some of the simple things inlife. Eleven
years later, I know that using assistive devices not only help
us remain independent but allow us to save some energy for the
things in life that are fun. |
| |
|
|
| |
|
|
PUBLIC
SPEAKING TIPS
(for those who speak out about RSD)
- When I first started speaking I would write everything down
sometimes in speech form. Now I write down the main points or
key points in outline form.This jogs my memory on what I want
to say and helps to keep me on track in case I forget what I'm
talking about.
- I have practiced with a tape recorder and in front of a mirror.
After enough practice I become confident to speak to others.
- I make sure that I get plenty of rest the week of the event
especially the day before.
- Someone else from the group goes with me for support. We
talk about the event beforehand and after. I like to get an
evaluation of how I did. He keeps up with how long I talk, how
many times did I forget and if I got my message across. We talk
about this after the event or meeting and I use this feedback
to try to improve my speaking skills.
If you have any tips that you would like
to share, please go to our feedback
form and send it to us.
|
