Survival Tips

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 Household Tips Memory and Orgaization Personal Care Support
Staying Warm Alternative Therapies Fighting Pain Assistive Devices Public Speaking

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)

  1. 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.
  2. I have practiced with a tape recorder and in front of a mirror. After enough practice I become confident to speak to others.
  3. I make sure that I get plenty of rest the week of the event especially the day before.
  4. 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.

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