Living With CRPS
These tips, tricks and helpful resources have all been recommended for CRPS Warriors BY CRPS Warriors.
Although we are all different, patients have reported minor relief and added abilities from using these techniques and tips when necessary. Have a tip to share? email us to add it to the list! crpsdreamteam@gmail.com
Upper extremity (hand/arm) CRPS:
Putty and Slow Rising Squishies may be designed for children, but they are both perfect tools for patients with CRPS in their hands. These help patients maximize minor hand movements with soft and soothing materials.
Paraffin Wax Bath machines are a favorite tool for many CRPS patients and can be used for hands or feet. The wax is warm and is incredibly soothing.
Gel wrist rest for your desk if you're using a keyboard or mouse for work or for extended periods of time.
Ergonomic Writing Aids can help patients grip pens and pencils with comfort again. If you're a writer or an artist who is unable or struggles with their creations since CRPS diagnosis, these can make a big difference for your comfort.
Support Pillows. Not only when you're sleeping, but whenever your arm needs support or comfort. Sitting down? Grab a pillow for your arm. Working? Grab a pillow for your arm. Going for a car ride? Grab a pillow for your arm and maybe a folded dry cloth for the seat belt if it hurts your shoulder.
Warm water hand baths with washcloths- safe and somewhat comfortable desensitization technique.
Lower extremity (foot/leg) CRPS:
Some patients are unable to have anything on their CRPS limb, while others require a certain material and compression for comfort. We are all different. Here are some options:
Foot rests are incredibly helpful for those who spend long hours at a desk or in a chair.
Oofos Recovery footwear have been recommended by patients
Fuzzy socks are a must have for many CRPS warriors, although many also find them unbearably painful.
Spandex socks are preferred by some patients since the materials do not move around on the CRPS foot to cause irritation.
Copper Compression Socks are ideal, and doctor recommended, for anyone who wear compression socks.
Knit socks made with soft yarn.
Warm foot baths are incredibly soothing in the cooler months. Ensure your fuzzy socks and towels are nearby!
Flip your socks inside out if you wear them. This eliminates the seam from rubbing against your toes.
Other tips:
Find a Support person or group. You are not alone. Contact us to join our support services or to find services in your area.
Avoid cold temperatures when possible.
Therapeutic Heating Pads are different than traditional heating pads because they use moisture in addition to heat. Although they are a little expensive, many patients confirm that it's worth the investment if possible.
Epsom Salt Baths will help with more than pain. Although the pain relief is not miraculous, it is quite relaxing.
Arnica Cream is a homeopathic cream that many patients use daily. Many children with CRPS keep Arnica in their toolbox.
Tens Units can offer incredible relief for patients at home or on the go. They are often used and recommended by Physiotherapists and many patients .
Acetaminophen and Ibuprofen (Tylenol and Advil) are both used by a lot of patients.
Hot Tub or Hot Bath sessions are used by patients to soothe muscles and calm mild tremors (while being monitored).
If you use body lotion, warm your lotion before applying to reduce that moment of chill.
Prepare for your medical appointments (More information coming soon)
For a quick limb warm up, use a hairdryer to warm a pillow case to slip over your limb. (Thanks, Tammy!)
Sensitivity to lights or sound?:
Carry Earplugs with you for moments they are needed. Some of us have found this quite helpful when going into public areas with extra, or unexpected, noises.
Baseball caps with a large brim are often used by patients in office environments or outdoors to reduce harsh overhead light or sun.
Sound Desensitization practices in the morning. Please be careful when practicing this and do not listen to loud music.
Some retailers and grocery stores (like Sobeys) have 'silent Sunday' shopping for sound sensitive customers, like us! Ask your cashier about this next time for more information.
Helpful tools for mobility around the house:
Floor-to-Ceiling grab poles can help while you transition from sit to standing position. They can be used almost anywhere in the home & are commonly installed in the bathroom between toilet and bathtub to assist patients with both.
Pivot Bed Rail are able to help patients who have difficulties getting out of bed without discomfort or strain.
Reachers/Grabbers help patients grab and reach things when they're unable to.
Helpful tools for the kitchen:
Electric Can Openers help patients by holding and opening cans to eliminate the struggle while cooking.
Adaptive Utensils have larger handles so they are easier or patients to hold. They're designed for hand tremors and arthritis.
Anti Fatigue Mats are designed to be supportive and add comfort while you're standing in the kitchen.
Helpful tools for cleaning:
Dusters
Swiffer wet jet
Organize your living spaces to increase functionality. Put your commonly used items in easier to reach areas to prevent unnecessary bending/ straining when completing every day tasks. More information coming soon!
We have learned that the best way to truly Conquer CRPS is to use a Full Body Approach. Although CRPS is considered a chronic pain condition, it does affect every nervous system in our bodies. Taking care of our mental health will benefit our physical health as it is all connected through our nervous systems.
Self Help Techniques and tools:
Mindful Based Stress Reduction (MBSR) is an incredibly powerful tool for some patients. Some health care professionals believe that MBSR can be a life changing tool- Kristen Sparkle agrees. The North York General Hospital in Ontario offers a 9 week group program that is led by a physician, but there are also many options for self paced programs online.
Nature Therapy Science has proven that by simply looking at pictures of nature, the quality of life can be increased for a patient who is living with chronic conditions. Take time to be outside when possible and admire the small things you see.
Color Therapy or Chromotherapy includes Green and Red Light Therapy, along with every other color in the rainbow. Each color has a different effect on the body and mind. Patients have noticed pain relief from having a colored LED bulb in their room. Sauna Chromotherapy is another option that includes the healing benefits of warm water.
Sound Therapy is continuously proving to be beneficial for patients. Every frequency of sound has a different effect on the body and mind. 174 HZ frequency music can be described as a 'Natural Anesthetic". This can be beneficial to use during the day or night. To learn more about the benefits of 174 HZ: https://meditativemind.org/how-174-hz-solfeggio-frequency-music-can-help-relieve-pain/
Sleep Time:
Bed Tent/Blanket Lifter will hold your blankets and sheets above your CRPS affected limb in bed if it's too sensitive for materials.
Have we mentioned support pillows?
432 HZ frequency music can be used to help soothe your brain while you sleep. Some patients notice a dramatic difference in their sleep patterns while using this. To learn more: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6924256/
Favorites: https://www.youtube.com/watch?v=o-9T184mpY4
https://www.youtube.com/watch?v=198zyhAKA90&t=1648s
Helpful Apps for Smart Devices:
Nanolume is a Pain Tracking App that allows you to track your pain with a visual. We have found this to be an incredibly helpful tool for patients and their medical teams.
Recognise App Are a series of apps that use Graded Motor Imagery to create games. These apps have use the latest science during their development and will keep track of results for you & your doctor. Recognise hand and Recognise foot have both been used by some of us.
Supplements/Natural options:
-We are NOT doctors- Patients who use these supplements find them beneficial because it works for them. Every patient is different. Please contact your medical provider before trying anything.
Magnesium Glycinate (glycinate has been recommended by doctors as it is the 'easiest form of magnesium for the stomach')
Vitamin C has been proven to help decrease CRPS symptoms, including pain. Many doctors recommend their patients take it daily.
Cinnamon has anti inflammatory properties, among many other medical benefits. Many patients add this to their coffee in the morning and add it to their recipes.
Chaga Mushroom is high in antioxidants which can help reduce inflammation. Studies show it can also fight harmful bacteria, among other benefits.
Honey
Dr Hooshmand's Four F's Diet
Turmeric
CBD/ THC (visit www.hmed.ca for more information)
Within the first year of diagnosis, please make sure that you are being seen by a Physiotherapist and follow their advice. After your first year, please continue your exercises.
More to be added soon 12/7/23
****DISCLAIMER: We are NOT Doctors. We are CRPS Patients who have spent years researching and connecting with others to learn about their experiences to help others. We want to help in any way that we can, but we are NOT doctors. Please discuss anything major with your medical providers. Some say that patients become the best educators for CRPS, often due to a lack of support from the medical community, but we want to change that. 'CRPS has the highest rated pain, we want the world to know it's name' and we are Stronger Together. So let's work together to raise awareness, be supportive and get the answers to questions we all want to know. MEDICAL REVIEW PENDING**