becoming my own crps expert – and taking my life back.

In my little corner of the world, several of my near & dear have been facing some really damn HARD – my lifelong friend with metastatic breast cancer in her spine has just learned that she may have to deal with ANOTHER effing spinal surgery, a precious Tt sister had a beast of a relapse and has just completed twenty days of intense inpatient treatment and is now starting six months of outpatient, and my precious friend, Brittany, who has fought and fought and fought ovarian cancer with surgeries and chemos and colon stents is starting yet ANOTHER bitch of a round of chemo that is so damn scary. . .

There is so much hard and so much to fight. . .

And I’ve had to get up (again) and start fighting myself. . .

In the past few months, I’ve had two terrible complex regional pain syndrome (CRPS) flares in my left foot -and noticed the monster trying to spread – and had to educate myself about it and its treatment options very quickly.

One unpleasant thing that I have learned is that many doctors aren’t familiar with it – or, because it is difficult to treat, they simply don’t want to deal with it at all, as was my experience at ortho.

The problem with this is that time is of the essence in dealing with CRPS. The first six months are critical in getting a handle on it. After that, any improvement that a patient sees is usually going to be from wherever they are when they begin that treatment – so, if they begin it at three years in, they will only see improvement from their baseline of three years of suffered losses. Umm, no, thank you.

I know I’ve shared this before but it bears repeating:

CRPS is considered the most painful chronic condition in the world. It is a 46/50 on the McGill Pain Index.

I still can’t find adequate terms for how excruciating the flares are. It’s like nothing I’ve ever experienced before. And when it occurs, it comes from nowhere, and I cannot walk at all on my left foot. And my foot just THROBS. And anything touching it – a shoe, a draft, a soft blanket, anything – burns like fire. It’s ungodly.

In learning about this awful disease, it has become apparent that the best hope for getting a handle on it is to do so quickly – as I mentioned earlier, within the first six months. So, because it is necessary to “retrain” the neuro pathways in the brain, physical therapy is essential – no matter how painful. So is finding a way to use to limb on a daily basis somehow so it doesn’t atrophy. This is according to the British College of Medicine Guidelines for the Treatment of CRPS.

Though it took two months to get my physical therapy referral, as I kept being dismissed due to my rheumatoid arthritis, stress fractures, and, now, CRPS as well, I finally got it yesterday. I am so relieved. I realize I can’t do as much as other patients – but I still need to go and participate as much as possible.

In terms of medication, I am already on the recommended nerve medication, gabapentin, and the recommended anti-seizure medication, Topamax.

As I have continued to research, looking for ALL options that might help both the CRPS and the RA – I am only 40 and I am not just going to lay down and get worse – I have pieced together the best home treatment plan for me from all of my reading.

First, I am transitioning to an entirely plant-based diet. After extensive reading, the anti-inflammatory benefits of going completely plant based will be a huge help to all of my chronic conditions: RA, CRPS, and Diabetes.

If you suffer from any inflammatory condition, even if you are not going to eliminate all animal products, consider reducing them and also eliminating or seriously reducing the amount of processed foods you consume. In addition, adding these foods can greatly benefit your health:

(One simple substitution is just to do most of your cooking with olive oil instead of butter.)

The next important step is to add more activity, which is a great challenge with my autoimmune condition and CRPS, as well as the stress fractures. I am fortunate that swimming is an option – when I am able to – and I will be setting a plan with the physical therapist when I meet with them next week. I am fully committed to doing what it necessary to stop this decline.

some additional suggestions – that I will be following – for an anti-inflammatory lifestyle.

There is mention, of course, of lowering stress levels on this list, which is an issue for everyone in modern society.

A couple of things that I am prioritizing:

  • Continuing therapy.
  • Daily quiet time. – I’ve just started Ann Voskamp’s devotional, One Thousand Gifts: Reflection on Finding Everyday Graces and I just love it. Like all of her writings, I totally recommend. ❤
  • I’ve decided to give an acupressure yoga mat a go. I’m told that, while the twenty minutes on it a day take some getting used to, the results are totally worth it.
trying all the things.
  • Joining a small group at church this semester, both for growth and community. It starts next week. ❤
  • Adding daily soaks for my joints – and to de-stress. I am the worst about planning – and then skipping them.

Finally, I have gotten my office all cleaned out from the Christmas whirlwind to begin having a more structured writing time again, which is so important to me.

Earlier today, my sweet friend, Brittany, who is battling ovarian cancer like all hell posted this:

beauty from ashes. ❤

And every single time she has gotten knocked down, even with a colon stent placement, she has gotten back up, and gotten back to her workouts, and started leading her fitness group again. She amazes me.

And she reminds me that we just have to keep fighting for it.

So I will.

Hard.

Oh, and we didn’t get our “big” snow – but we did get some beautiful nighttime flurries and an early morning dusting. . .

 

And I wandered into Publix and the best little early season $5 daffodils were waiting just for me.

yellow flowers ❤

God is so good. ❤

Be well, everybody.

Grace and Blessings.

#drinkwater

 

 

 

 

 

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