Month / March 2020

by Jana Rawling

Fighting Atrophy

My left foot is the original CRPS sight.

If you don’t use it, you’ll lose it.

My left foot hurts unless I’m asleep. That’s just the way it is with CRPS. So, to tackle the pain I make sure I’ve taken my medications on time, eat well, the occasional heating pad (yes, it works) and I move my feet every day. I rotate them, stretch them through cramping and walk as much as possible. I know it sounds strange to exercise and walk when I’m in pain, but it helps tremendously. And I don’t want to incur any more irreversible damage than I have to.

You see, CRPS comes with its complications, two of which are Dystonia, muscle tightening, contracture and Atrophy, muscle and tissue wasting. You can read a bit about Dystonia in a recent post, Fighting Dystonia. These states often create irreversible damage.

I want to use my feet as long as I can. I do use an electric wheelchair if I have to walk long distances, like going to the mall. But I do my best to walk as much as I can. I try not to limp and walk as straight as possible to exercise the right muscle groups, but it takes concentration and effort. Walking exhausts me and I do rest afterward with my feet up to relieve the inevitable swelling.

You can see in my pictures where my left foot is smaller and has less muscle mass than the right. I was diagnosed in 2014, so they are showing six-years of muscle and tissue wasting. In the first three years I babied my foot, used my wheelchair more and wouldn’t walk far. Now I have a Dorsal Root Ganglion Spinal Cord Stimulator and I am much more mobile. I take advantage of the reduced pain by moving more and resting when I’m fatigued.

I do fight other illnesses, so life is not back to normal by any means but it’s definitely better. My treatments and methods my not be for you, but if I can get one thing across it’s to say don’t give up and keep moving your CRPS limbs.

Maintaining mobility and much love,

Jana

P.S.: Don’t let CRPS steal any more of your life than it can.

by Jana Rawling

Chicken or Egg Podcast

Chicken or the Egg, Episode 15

Dealing with CRPS is hard enough without adding other illnesses and disorders. The complexity of CRPS becomes even more complex. It’s hard to separate the symptoms from one disease to another. And that causes anxiety and frustration.

by Jana Rawling

Fighting Dystonia

CRPS, Edema & Dystonia this morning.

My Foot is Curling Under

Dystonia is “a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.” According to the Oxford Dictionary online.

Mild forms of Dystonia are things like writer’s cramp or musician cramps from repetitive motion. It can affect the limbs, neck, and face.

I have personally fought Dystonia for years now because of the CRPS in my left foot. My foot wants to curl under every time it hangs off of something, like a barstool or chair that’s too high for me. It happens in bed at night too and I wake sometimes with pain. The muscles in my foot contract and spasm and I have to place it flat on the floor or wrap it to stay straight.

I message my foot and use a heating pad, yes, heat on the already CRPS-hot foot, daily. The more I’ve walked in a day the worse the Dystonia gets. The more I’ve been stressed or tired the worse it gets. I also use a muscle relaxer as well.

We acquire Dystonia from an injury, being genetically predisposed or there’s no clear cause. There’s no cure for Dystonia, but sometimes it can be partially reversed. And, some data states that it will get to a certain point and stop getting worse over time.

Like with a muscle relaxer, Botox is another method for relaxing the muscles.* We can also get some targeted physical therapy.

Dystonia can also cause depression and a sense of dislike for the limb or affected body part. This can cause neglect for the body part as well. For me, it feels like my foot is not behaving. I literally get angry at it sometimes. There was a time close to my CRPS diagnosis that I hated my foot and wanted it gone.

These feelings and the physical pain are very hard to deal with emotionally and spiritually.

Living with Dysfunction

Here are some thoughts on living with Dystonia or any illness, disease or disorder:

  • Find a good support system.
  • Listen to your body.
    • Get sleep, rest, good nutrition, and exercise.
  • Get help with stress, depression and anxiety.
  • Stay social and don’t isolate.
  • Do things you enjoy.
  • Find more information online by searching for Dystonia.

Be blessed,

Jana

P.S.: I pray you are unbent and unbroken.

* Dystonia: Essential Facts for Patients from the International Parkinson and Movement Disorder Society.