Managing RSD/CRPS As A Chronic Illness from a CRPS Warrior

Emily blogs about chronic illness (RSD/CRPS) and tips on how to manage it.Written by Guest Blogger Emily S. Nunez

Emily has been living with CRPS/RSD and learning how to best manage it. Here, she includes her tips and tricks to control your CRPS/RSD as a chronic illness. She finds the following tips helpful for her own pain.

The reality of living with RSD/CRPS is that it is a lifelong chronic illness, which requires management and attention to avoid exacerbating symptoms.  I consider myself very fortunate to have most of my RSD symptoms under control at the moment.  But I do get flare ups of pain and swelling from time to time, and I’m always aware of how my affected foot is feeling in order to prevent symptoms from getting out of control.  My doctor has stressed that once RSD has surfaced in the body, that it could come back at any time in the event of another injury or major stressor.  That being said, there is a lot we as RSD patients need to do and be aware of in order to manage RSD as a chronic illness and to prevent flares from occurring.  When dealing with a disorder that can feel so unpredictable and out of control, let’s focus on the things that we can control to keep our symptoms at bay:

1.) Avoid Common Food Triggers

Everyone’s body reacts to various foods differently, and there is no particular “RSD Diet” to adhere to.  But it would be wise to start paying attention to how foods are impacting your pain levels.  Keeping a diary of your symptoms and what you’ve eaten can be extremely helpful in looking for patterns of food-related inflammation and pain.  Foods that tend to cause an increase in inflammation are: sugary foods, alcohol, refined grains, and processed meats.  Try to keep these foods to a minimum and incorporate more fresh fruits, vegetables, and proteins into your diet as much as possible.  Diet is an integral part of good health for everyone, but is especially so in those of us with chronic illness.

2.) Keep Stress to a Minimum

Stress is a part of life, and is impossible to avoid completely.  But be aware of your stress level in order to prevent it from getting too high and causing an increase in pain.  Stress is known to be one of the main triggers for RSD flares, so it’s important to use stress-reduction techniques when you feel your stress level creeping upward.  Meditating, talking with a friend, exercising, watching a funny movie, or writing in a journal are a few ways you can help mitigate stress.  It’s also important to surround yourself with positive and supportive people to help keep your stress level as low as possible.

3.) Exercise the Affected Limb/Body Part (If Possible)

Keeping the affected body part active can be a very tricky thing for many RSD patients.  If your case of RSD is very severe, you might not be able to tolerate moving or even touching your painful area very much.  When my RSD pain was at its worst, I could not stand even a bed sheet touching my foot.  When my doctor told me to start exercising my foot as much as possible, I first thought it would be impossible.  But my doctor explained that continuing to immobilize the limb would cause further disease progression and loss of bone density.  So, at first, I slowly started trying to move my toes.  Then I worked on rotating my ankle.  Then I worked up to walking down my driveway.  Every week for several months, I made slight increases to the movement of my foot.  While exercise initially caused a sharp increase in pain, I found that the more I stuck with it my pain started decreasing.  Now I go for a walk daily to keep my symptoms minimal.  If I go a couple days without exercising my foot, I get a big increase in pain.  So, if you’re able to tolerate some movement, incorporate exercise into your daily treatment plan.  Work at movement consistently, and increase exercise only in small increments.  Exercise gives us so many benefits, aside from pain reduction, including increased self-confidence, elevated mood, lower blood pressure, and increase in bone density.  Try your best to use and move your affected body part as normally as possible.

4.) Avoid Overuse of the Affected Limb/Body Part

While it’s important to exercise the affected limb as we discussed, it’s crucial not to overdo it!  Sometimes it takes pushing yourself too hard to learn what your limits are in terms of exercise/movement.  When I finally got my RSD pain under control, I mistakenly thought I was completely rid of the disease.  I went to a concert where I was on my feet for several hours, which ended up causing a severe flare and complete re-emergence of all my symptoms.  After several nerve blocks, I’m back to minimal pain.  But I definitely learned that standing for several hours is more than I can handle.  Now I know my physical limits and to not overdo it with walking or standing.  It can be difficult to pace yourself when your pain is low, but it’s important to be mindful of how far we are pushing our bodies.

5.) Wear Proper Clothing/Shoes for Maximum Comfort

If your feet are affected by RSD, finding the right shoes to minimize pain is critical.  If RSD affects you somewhere else on your body, you might be sensitive to certain fabrics or can’t wear clothing that is too tight.  Whatever is comfortable for you, wear it!  After I was diagnosed with RSD, I had to get rid of 90% of my shoes.  The only pair that felt comfortable and supportive enough to tolerate were my running sneakers, and they are still the main shoes I wear.  Flats and heels are just not worth the pain it causes me!  Do what you can to maximize your comfort by slowly accumulating a wardrobe of clothes and shoes that feel good on your body.  Let go of your fashion ideals, and just let your body be comfortable.

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