Fighting CRPS and Chronic Pain

Fighting CRPS and Chronic Pain

By Ed Coghlan.

Katie O’Leary is a former college athlete who has CRPS–a condition which has changed her life. In part one of her interview with the National Pain Report, the Los Angeles woman recounted how a surgery started this journey. Today, she talks about successes and setbacks in how she deals with CRPS.

What have you done to help fight your CRPS?  What are your successes?

Katelyn O’Leary

“From January 2016 up until June 2017 I was receiving Ketamine infusions. Ketamine is a tranquilizer used in veterinary medicine and it is also a sedative used in pediatric surgery. Ketamine is not FDA approved for the use of treatment for CRPS, which is why United Healthcare denied my claims when 2017 beckoned with a slithering hand of bad luck and setbacks. Of course, they approved all of my treatments in 2016, but suddenly they were just “not safe.” Luckily, I had applied for financial aid through USC Keck hospital and was approved from Dec. 2016-June 2017. This meant that they would pay for all of my bills for the next 6 months. Starting in April 2017, my pain management team ran by Dr. Steven Richeimer decided to increase my dosage of ketamine from 200 mg over a 4 hour period to 400 mg over a 4 hour period. That helped tremendously with the inflammation and the pain – and with allodynia (hypersensitivity to touch).

Other treatments and exercises that have helped me are therapy band workouts, yoga (from youtube), and especially swimming. Swimming in the Pacific ocean is the most therapeutic exercise for me. As a child, my family would visit the Jersey shore for a week. Some of my happiest memories were on the beach as a child – and that hasn’t changed as an adult. There is something so peaceful about standing on the shore, breathing in the salty air and taking in the endless blue waves. When I step into the water, it is the only time I feel almost normal. The cold water makes my inflamed leg feel so much better, and the salt adds more buoyancy when I swim and float, making this the best workout for my body.”

What has happened that caused setbacks?

“United healthcare denying coverage for ketamine infusions, Experiencing the death of a dear friend and the death of a family member, atrophy of muscle in my right leg due to pain or lack of mobility. I was hospitalized the second week of August 2017 because the emotional and physical hell I went through to be there for my best friend’s mother’s funeral (insert article link?). For every step forward I take, I feel as if I move two steps backward. It is a constant uphill battle to keep my leg muscle calm and prevent atrophy. Furthermore, flare ups have been harder and harder to deal with since I cannot get ketamine through my insurance. The ketamine helps desensitize my leg, and without it – the nerve sensitivity increases.”

You are a competitor by nature…What advice do you have for people who encounter those setbacks?

“My best advice for people who encounter CRPS/RSD or any debilitating disorder is to empower yourself with knowledge. The more you know about your disease or disorder, the less afraid you will become and the more in control you will feel. Read as many books, articles, studies, and papers published wherever and as often as you can. Knowledge is power – and that power gives us the ability to compartmentalize our fears and work towards making ourselves better.

In addition, do not be afraid to ask for help. Pushing yourself to the limit because you are too “proud” to ask your friends, family, or co-workers for assistance is silly, because you will only make yourself worse.

Finally, KNOW YOUR INSURANCE COVERAGE. Understand what your deductible is and what it means. Figure out what your “in pocket maximum” means and what that number is. Find out which hospitals, specialists, and therapists, and doctors are covered by your insurance. Always challenge a claim by your insurance company if you think there has been a billing error (this happens all the time). Never take a bill or an explanation of benefits at face value. Fight and appeal decisions from your insurance company – they do not always do what is best for you!”

Thanks to Katie O’Leary for sharing her continuing story with the National Pain Report. We are looking for similar patient stories which we will feature in September during Pain Awareness Month. If you have an idea, submit it to editor@nationalpainreport.com

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Authored by: Ed Coghlan

There are 5 comments for this article
  1. BethAnn Shoenfeld at 7:04 am

    Thank you – My name is BethAnn Shoenfeld
    I have had CRPS since January 5th,2014, after slipping on ice. It began in my left hand, but now the pain is in both hands and arms and left hip and leg. X-Rays show a significant change in degenerated disks in my lumbar vertebrae. I believe those of us who live with CRPS are so used to constant pain, we don’t know when there is an injury or coexisting condition. I have been limping along, believing that it is just more of the same. Also, depression and exhaustion has lessened my self-advocacy. So now that I have written it out loud, it’s time to get off my ass and continue to find help and make new friendships. Yes, most of my support network and friends have left. Such is the nature of the human condition. It is frightening to watch a loved one suffer, so many times it is best for them to leave. I urge anyone who is experiencing loneliness to open new doors!

    I am prescribed ketamine nasal compound, made at my pharmacy. The problem with nasal administrative ketamine is physical tolerance. I must pay out of pocket, and I am living on a monthly disability check, so it isn’t easy, but I have hope,,,,Not first thing in the morning, of course, because every morning I struggle with the decision of wanting to live anomoment with this dreadful disease of CRPS. Other than that, I’m taking life a moment at a time. Please contact me for support, to give support! OMG! How could I not include this script. Living without my dog; Norton would make life unbearable!

    BethAnn

  2. s monaco at 6:36 pm

    Dr. Mark I’ve had Crps/Rsd for 23yrs been using Ketamine compound cream since 1996. Also for a time was receiving it in syrup form 5mg/ml..now that works, but current doc won’t prescribe. My treatment now is Rx pain meds which relieve my pain to under 5 daily. Not going to be a pin cushion any longer. Some of my worst times were Doctor caused.. trying to help me no doubt. I am doing better now than anytime before.
    My rehabilitation all started with wanting to walk my dog!
    Now I’m here & well while my dog has sadly passed on.
    Getting another pet very soon.

    Best of luck to all Crps patients

  3. Jacob Teitelbaum MD at 6:24 pm

    Hi Katie,
    how often did you need to take the ketamine to maintain the benefits? an alternative for your physician to consider is to have a compounding pharmacy makeup a Ketamine nasal spray. Because the ketamine is so psychoactive, it takes a certain amount of “babysitting” when people are first receiving it IV. Once they are familiar with the effects, if they seem able to handle them okay on their own or with a family member or perhaps even a psychologist present, the nasal spray offers a much lower cost alternative.

    Other treatments to consider:
    1- IV Biphosphonates (use whatever is available locally). Use Pamidronate 90 mg administered once over 3-4 hours ( give in 500 cc normal saline). Per Pradeep Chopra Clodronate 300 mg IV QD x 10 days; or Alendronate 7.5 mg IV once; both can cause initial flaring of Sx in Acute CRPS, so better for chronic. He also uses Pamidronate 60 mg IV; Neridronate (Italy study). Current study in US Underway
    2- LDN (low-dose naltrexone) 3-4.5 mg at night. Higher doses will not work
    3- Quinapril 10 mg (BP lowering medicine. Blocks microglial activation and central sensitization
    4- Pentoxifylline 400 mg 1 x day for 3 days then 2 x day for 4 days, then 3 x day. Take with meals
    5- Methylprednisolone 20 mg : 4 a day for 3 days, then 3 a day for 3 days, then 2 a day for 3 days; then 1 a day for 3 days, then ½ a day for 3 days, then ¼ a day for 3 days. Take in the morning (with food if it bothers stomach)
    6- Aggressive Rx of Vit D and Vit C, Lipoic acid and NAC (antioxidants) per Dr Chopra (and DMSO topical 50%) 5 x day for at least 3 mo, and Earthing Mat, oxytocin
    For Pain:
    1- Neurontin (gabapentin) 100-900 mg 3-4 x day as needed for pain
    2- Baclofen 10 mg 1-2 tabs 3-4 x day for pain (start low-can be very sedating)

    I strongly recommend watching an excellent video:
    CRPS RSD – Pradeep Chopra Video

  4. Maureen at 4:07 pm

    Great advice Katelyn! I’m surprised to hear that you can get in the ocean with your CRPS. I live just 9 houses from the ocean and am unable to get into the cool water. It causes more nerve pain for me.
    Also…I’m petrified to swim in the ocean! Sharks and sting rays are here! Lol

  5. Dr. Mark W. Helfand at 9:36 am

    I understand Kate O’Leary’s suffering all to well. I’ve had Complex Regional Pain Syndrome for close to 20 years. I lost my Dental practice, most of my “friends” and mostly my life. I understand how emotional stress can increase one’s disability because the death of my wife increased my leg pain to a degree that kept me from walking. She’s not alone in medical insurance companies proving they exist to make money, not help the sick. I pay for my own pain medicine. Its primary indication is for terminal cancer pain. Since I don’t have cancer and I’m going to live, they denied my $5000 per month bill. Lucky me, I’m going to live. My main reason for this comment is because I’ve also found something that helped. My Pharmacist (one if my Angels) found an article about an experimental ketamine cream that has helped control my pain. It has helped my pain medicine work better and longer. It’s not a cure or remission, but I’ve gone from needing Fentanyl every 2 to 3 hours to needing it every 4 to 6 hours. Sometimes as long as 8 to 12 hours. And its only $100 per jar. The medical abstract for your doctor and/or pharmacist is:
    https://www.ncbi.nlm.nih.gov/pubmed/26547813.
    The full article is at:
    http://onlinelibrary.wiley.com/doi/10.1111/papr.12404/abstract;jsessionid=15DB4CEEF354411276E09FFE8B54D760.f03t04
    I hope this will help Kate and anyone else with CRPS as much as it helped me.

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