My Story: CRPS Is My Story that Needs to be Shared

My Story: CRPS Is My Story that Needs to be Shared

By Beth Stillitano.

Editor’s Note: Beth Stilitano, a former teacher has had CRPS for over 20 years as a result of an injury at work. S he lives in North Carolina with her two amazingly supportive children and a devoted husband.

I have had CRPS for 20+ years.

There are many aspects of my life that I could talk about how CRPS has affected me or how I have learned to live with CRPS.

Beth Stillitano

I fell, and, as a result, have had 4 knee surgeries.  While trying to recover, my surgeon knew something was wrong and sent me to a pain management specialist.  I was immediately diagnosed with CRPS.  I chose not to believe him.  I went to another doctor, and got the same diagnosis.

For the first 10 years, I was in Physical Therapy 3 days a week, using a cryo-cuff 24/7 as directed by my physical therapist and orthopedist.  My pain management doctor had me taking Oxycontin, Vicodin, Zanaflex, Klonopin, plus others.

One day, I missed only ONE dose of meds – I just became violently ill. That day I realized my body was completely dependent on these meds.  I began titrating off my medication on my own.  For the last week, I checked myself into the hospital, where I was treated like a common drug addict (that is a whole other story which I’ll share in a future story).

I began trigger point injections, nerve blocks, epidurals, ganglion blocks: they eased my pain, but did not erase it for 5 years.

Then, they did cranio-sacral therapy for 2 years, which kept pain at manageable levels.

Calmare therapy was next – I kept an entire blog about this experience (which I’ll also share in a future post).

Then it came time for the 8-day, inpatient Ketamine infusion in the ICU with follow-up Ketamine 4-hour booster infusions.

Now, I have been going to a reflexologist for about 9 months.  I do not quite understand how it works, but my pain has been reduced and I have regained some function in my knee.

CRPS began in my right knee. It has since spread to my right foot, right arm, shoulder, jaw, face, eye (affecting my peripheral vision).

It has also brought along some other health problems: like dystonia, clinical depression, non-presenting Cushing’s, keratoconjunctivitis sicca, Barre Lieou Disease, Adrenal Adenoma, Fibromyalgia, and others.  Having surgery to remove my adrenal gland and tumor was an interesting story – learning to work with the doctors/nurses/and hospital staff.

Traveling with CRPS was very difficult at first until I finally learned how to work with the disease instead of complaining that it just was not fair.  Plans needed to be altered.  (I wrote a whole story about traveling to Italy with a disability.) Adjustments to trips were made – and we resumed taking trips.

The proudest aspect about CRPS and my life is the Fight the Flame 5k.  My son (when he was 12 years old) started this race to raise awareness and funds for CRPS.  We just held our 5th annual 5k.  I do not yet have exact numbers but I can say I know we have raised/donated over $100,000.

From this race, we have also started the Fight the Flame/CRPS Awareness College Scholarship for Charlotte High School Seniors; and we have established the CRPS Support group of the Carolinas.

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Authored by: Beth Stillitano

There are 8 comments for this article
  1. sandy auriene sullivan at 9:46 am

    Thank you for sharing your story. Unfortunately, so many of these options are simply unavailable to the average patient! The forced reduction in meds wouldn’t be as bad on the pain community at large if we had *access* to more alternative treatments and other options. The vast majority of us are limited to meds/pt [if we can afford it on top] + RFD and/or steroid injections.

    Massage helps me greatly. Would need it 3 x a week for life to cope with further reductions. Medicare will never pay for it. 100$ avg for 60-90min session means once every 3 mos is a luxury for the vast majority of us who have limited resources.

  2. Zara at 3:41 pm

    Thank you for sharing your story! Your son sounds amazing. I hope you see more gains in the future!

  3. Barb williams at 9:33 am

    My son has crps and lives in NC. I am interested in reflexology treatment. How did you go about finding a provider? My son has tried calmare and ketamine with no success. Did you go to Italy for neirdronic infusions?

  4. Maureen Mollico at 9:24 am

    Beth, Ditto to the above comments! You are incredible! If only I had an ounce of your drive and sustenance! I too have CRPS, as well as FM/CFS, intractable spine related pain and adhesive arachnoiditis.
    I can only fathom how all of your other diagnoses were brought to light!
    I have no ‘in-person’ support system whatsoever. Since you do…I imagine that is why you are able to keep focus and accomplish all that you do.
    God bless you and your family of great support, for all that you do for the CRPS community!
    You are a hero!

  5. Terry at 7:53 am

    Yup CRPS is a real butt kicker. It affects every aspect of my life. Even with that in mind my pain management doctor keeps reducing my meds. I feel like I’m swimming upstream. Same old song and dance. We have to keep raising awareness for this little known disease. I’ve had 18 surgeries on my knees, 15 broken or dislocated bones, broke my back twice, been in a car accident plus multiple quad tendon ruptures and multiple sprains and twists. So it’s easy to see where the CRPS moved in. Keep on blogging and talking and maybe chronic pain patients will be recognized as legitimate not drug addicts.

  6. StevefromMA at 6:47 am

    I knew there were people a lot tougher than I am and you are one of them. It’s hard to express the depth of my admiration. Best wishes and good luck on your journey.

  7. Cindy Mosca at 5:48 am

    Would very much like to read your story on adjustments made while traveling with disabilities. Where might I find it? Thank you so much!

  8. Kathleen Burkinshaw at 5:30 am

    Beth, thank you so much for sharing this. You are an inspiration. I’m grateful for all you and your family have done and are doing to raise awareness of and funding for CRPS. I’m honored to call you a very good friend of mine as well.

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