My Story: A CRPS Story of Pain and Perseverance

My Story: A CRPS Story of Pain and Perseverance

By Beth Stillitano.

I try to participate in daily meditation and relaxation exercises to help soothe the rocky parts of my daily life.  When your everyday plans revolve around how much pain you will be in that day, depression, sadness, and many times hopelessness can set in easily.

Being stuck in a rut of self-pity can be a slippery slope and is a horrible and sometimes cynical feeling.

Beth Stillitano

I used to ask “why” all the time and cried my past allotment of “it is not fair.”  I was a “good” girl my whole upbringing.  Didn’t drink, or do drugs, didn’t party and was a good student.  I worked and saved my own money starting from when I was 12 years old, and was active in choir, the theatre, and my youth group.  I went to college and immediately continued on to earn my master’s degree.  I was following my dream; I was a teacher.

Life is extremely situational – one moment, I was so happy; I had everything – I was newly married to the most incredible guy, we had just bought our first home, I was doing what I loved, family was close by, and I had friends that we could socialize with on the weekends. Then one accident completely changed my life.  Losing the ability to be a teacher was probably the hardest blow for me, besides the physical pain.  For a long time, I couldn’t or just didn’t know how to “reinvent” myself.  Finding positive things in my life were almost impossible to see.  I was disabled and felt worthless.

I then discovered that my disability could become almost an asset. I have since become an advocate for the disease I now have, Complex Regional Pain Syndrome.  I have been educating and counseling people who have just learned of their diagnosis or are still trying to handle “reinventing” their lives.  Deciding to help and use my pain and knowledge of what I have already gone/ or am going through for me was enlightening.  I now had a purpose; I became a different type of teacher. My life, although maybe not the one I chose, does not have to be all negative.

My son loves the Beatles.  He listens to their music a lot. It occurred to me recently that the Beatles were foreshadowing my life when they wrote Blackbird.  Blackbird is now my favorite song because no matter what happens, I will fly.

Beth Stillitano, a former teacher lives with her husband, two children and cats in Charlotte, NC. Her family organizes the Fight the Flame 5k races, established a CRPS Awareness College Scholarship, and a local Support Group.

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Authored by: Beth Stillitano

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Mary – I would be happy to share what treatments I have gone through and how I reacted to them – however, please realize what worked for me does not mean will work for you and what did nothing for me, maybe the solution for you.
Please do not listen to others when they tell you they have tried something that didn’t work so you so should not try it. The same goes for medications.
In the last 20+ years I have tried: opiates; PT, OT, aquatic therapy, nerve blocks, trigger point injections, epidurals, stellate ganglion block, occipital nerve blocks; acupuncture, cranio-sacrial massage, myofascial release, reflexology, reiki, Calmare Therapy, many medications, cream & compounds, 8-day Ketamine infusion w/ follow-up ketamine boosters.

David W Cole

Beth, thanks for the post and helping people. Your words of wisdom have reminded me on this very bad day, that I’m always happiest when I’m helping other people and it’s a great distraction from the pain.

chuck darrah

Beth no offense but my constant horrific chronic degenerative pain is way passed any mental relaxation or finding ways to distract my body from the fact I live in hell because some insane people reduced my opiod medication to almost nothing.I am a former 2 time Professional World Champion so I was taught early on to ignore pain but after 18 years of trying all the “alternatives ” and spending a fortune I have found that opiod medication is the only thing that gives me enough relief to have any quality of life at all.I feel guilty my wife has to watch me suffer unable to help with my pain . My only hope for any kind of life is to put all my efforts into fighting the fight to get our medication back.May the road always rise to greet you !

Geoffrey Nielson

Courageous Beth,
Grateful you can share growth from your experiences.
I am constantly trying to match serenity with calamity. 8+ years of chronic back and feet pain.
3 failed lower back surgeries from a work accident. “This is as good as it gets”, are the words of the complete team of health care and associated health care professionals.
Some moments are slump moments, other moments are grand moments. I pray and meditate instead of subjugation to opiates.
10+ years of Recovery has always helped others and myself.
Earth is my Church and Nature is my Spirituality.
3 months novice to life on an acreage in North Central Arkansas. I read about it all my life and the Gift of the Universe said, ” … go work, play, and rest through all the changes for the Earth and for yourself … ”
Peaceful moments to you,
Geoffrey Nielson

I so appreciate your comments.
Thank you for being so supportive.

Claudia

My 24 year old daughter has ben ill for the past 7 years. After being told she was suffering from mental illness for 3 years she was finally diagnosed with an autoimmune illness called Mixed Connective Tissue Disease. She was only able to get that diagnosis because a Physician’s Assistant, who actually cares about her patients, listened to my daughter, who had been telling me for months that she thought she had Mixed Connective tissue disease, the simple blood test that revealed the illness. Up until then, no doctor would listen.

Then, about 3 years ago, my daughters domestic partner threw her across a room, injuring her back. X-rays were taken, revealing no soft tissue injury, but that was all that was done. The pain didn’t go away, but her PCP just dismissed my daughter’s concerns when she returned several times. At one point the PCP said “you are already on pain medication” so there is noting for me to do.

Finally, just two months ago, after living with debilitating pain that left her mostly bedridden for 3 years, she got the CRPS diagnosis. My daughter is very intelligent and an amazing researcher. She finally got the diagnosis after sharing enough medical journal information with her PCP for him to learn more about CRPS and feel confident in the diagnosis. If she had not done the research and had a PCP willing to listen she would still be in bed in agony.

That same PCP had reduced my daughter’s pain meds several months ago and that left her living with constant pain at a 9 or 10. After the diagnosis, he bumped her pain meds up a little and she now lives at level 6 pain at best. Because she lived at a 9 or 10 for so long she now says her pain is ONLY a 6. Most people could not begin to function on a basic level living with pain at a constant level 6. However, my daughter and I recently took a road trip to Monterey, CA just for fun. It was the first time in 7 years she has traveled anywhere that was not related to medical treatment.

Terry

Your life sounds a lot like mine. I try to stay as busy as I am able. CRPS is such a horrible condition and is widely misdiagnosed, I don’t even think that most doctors are even aware of it’s existence, my pain management doctor had no idea what I was talking about and my family doctor had never heard of it either, my reumatologist diagnosed me with the condition 8 years ago, which was the first time I’ve ever heard of it. Unfortunately the only thing that helped me were opiates, 195 mgs of oxycontin daily to be precise. I’m a “rapid metabolizer”, which means my body processes medications differently than most, it takes twice as much to be effective and lasts half as long. I’ve broken my back twice, I’ve had 19 surgeries on my legs, multiple fractures in my hands, wrists and a shattered hip and arthritis in 90% of my joints. When I was taking the 195 mgs of my meds my life was as normal as the next guy, I participated in life and kept myself busy with my art. Since the so called opiate epidemic I’ve been tapered down to only 75 mgs daily, and the taper was over 3 mos. so I went through withdrawals and became good friends with my couch. I guess my point is, no matter how much awareness is brought to our many different types of pain, the doctors are just too paranoid about losing their license to prescribe the needed amount of meds for us. So our lives are tossed onto the garbage heap because a lot of people overdosed on heroin and fentanyl. Only 2% came from people with legitimate prescriptions. I have given up on ever having a normal life again. All of our talking and protesting means absolutely NOTHING. Our doctors will NEVER reinstate our prescriptions to what they once were. I’m just being realistic. God bless all of my chronic pain brothers and sisters. Try and stay strong!!!

Alex

Beth you said this very well. I have CRPS- cold type full body late stage 2 and believe me I understand both the pain and what it takes to reinvent ourselves. I’m so glad to hear that another one of our club is trying to help others over that horrible “Poor Me Syndrome” state that follows diagnosis. I get the “Why Me”, the ” It’s not fair!” and I too counsel when I can. My biggest personal fear is that with all the foolishness going on about the “Opiod Crisis” that my Doc won’t be allowed to prescribe my meds. Were that to happen it could cause an early death in my instance. I have regained my life to a point, I work at my profession with many limitations, I enjoy my hobbies again with limitations, and after 20 odd years dealing with this I understand my limitations and have learned to live with them. Again, my biggest fear for all of us who deal with this horrendous pain, is the loss of our meds. I truly believe that the death toll that the media harps on constantly without regard to cause will rise dramatically. That to me is a scary thought.

Kris

Take these broken wings and learn to fly. Sending love and wishes for comfort.

Pete Gierke

I live in Montana and have contacted all of our politicians and not one responded with anything but a form letter they just dont care! if one of them would take a stand for for the cronic pain citizens i would support them no matter what their title Democratic or Republican,i am sick and tired of these party lines there shouldn’t be partys only people serving the citizens of this country.Why do they think they know more than Doctors that have sacrificed their 8 plus years of their lives to help sick and people suffering with so much pain they dont have a quality of life now because we are put in a category of drug pushers and addicts,we are not criminals.Someday their lives could change in an instant then they will wonder why they took such an ill advised stance on pain relief,I wouldn’t wish this pain i have on anyone.God help us we need so much guidance and support to stop this so we can atleast have some form of a deserved healthy outlook on life!Why do they do what they do!!

Mary C Odell

I really wish you had gone into more detail about your CRPS experience, you know, like what treatments you’ve tried, which ones worked…which ones didnt.
I’m glad you found your motivation!

Karen C.

Beth,

My RSD/CRPS sister, I am beyond humbled by your life story. I’m not quite sure what to say except you are my hero. I won’t whine and complain about living with our monster because you already know and feel everything I would say.

You inspire me, you make me feel like I do have hope, you are truly one in a million and i will pray that you continue to have the strength to keep doing all that you do.

God bless you sweetie,

Karen

Sabina Gritta

Hi Beth. I do feel so identified with your Story. Thank you for sharing.