The Chronic Pain Treatment That's Changing My Life

This year has been a hard one. The pain had been hard to control. The neurological symptoms that come with CRPS (complex regional pain syndrome), the “suicide disease,” are vicious in nature. In addition, my skin punch biopsy revealed severe small fiber neuropathy. The nerve damage is extensive. The symptoms had gotten so bad that even when floating in a pool, it was as if shards of glass were being shoved into the bottoms of my feet while they lay trapped in a briar bush up to my ankles. I’ve reached a level of understanding of why amputation has been employed as a “treatment” for CRPS since the civil war.

I took control by following my personal three-second rule. I give myself exactly that, and then get up and move. Once I am in motion, it gets easier. Once I start the task at hand, it becomes fluid. I made appointments with three of my providers. My primary is who I have tasked to be the gatekeeper of my health. My neurologist specializes in the treatment of rare neurological disorders and diseases. Finally, my anesthesiologist administers ketamine infusions and blocks to aid in the treatment of my pain. I told each of them a few months ago that I was “losing ground,” and I feared permanently losing function. It’s a very real and not exaggerated reality that we, the forever sick, face. When you cease to be able to do something, it’s rare to get it back. I wanted to get on top of it before that happened. I wanted to try like heck to stop what appeared to be a progression of the disease.

At each provider, we reviewed scans, labs, symptoms, and tests such as EMG: “Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). EMG results can reveal nerve dysfunction, muscle dysfunction, or problems with nerve-to-muscle signal transmission.”

I feel I get more from my providers by being straightforward and honest. I look them in the eye when I speak of losing the ability to walk. I need them to “feel” me, not just hear my words. I talk it out with them and listen to their input. Being an active partner in my treatments garners better care, hands down. I had to remain open to the tools the providers want to use to figure out what they can do to tweak my care and buy me more functional moments in life.

Option one involves piling on, or increasing doses and the number of medications I take. Then the “drug of last resort,” IVIG (Intravenous Immunoglobulin). It takes thousands of healthy blood plasma donors to develop just one dose. One bag of precious antibodies helps people live with more quality. It comes with a rather large tether. It’s a six-hour infusion that for some is weekly, and for others monthly. Once started, it is likely a lifelong treatment.

With the low participation rates in blood donations across the country, it is a bag of gold to the sick, treating many ailments, such as Kawaski disease in children and Guillain-Barré syndrome. My neurologist, Dr. Farhad (Mass General and Wentworth-Douglas hospital provider) told me it costs upwards of $10,000 per treatment. When you become that costly to treat, insurance companies will do their best to deny access to life-saving treatment. My provider is actually known for fighting back to keep his patients above ground and living their best quality of life. Unfortunately, not all doctors are willing to use resources to appeal and fight the insurance companies for access to care. Before breast cancer, I was a medical provider myself. Now I can’t access the care that I helped give. (Please visit redcrossblood.org to schedule an appointment to donate blood today. Help to save a life.)

When Dr. Farhad brought LDN (low dose naltrexone) up to me, we had reached the point of adding more medications and we were running out of options. My daily doses of some of the things I must take are already high. Ketamine infusions are the only peace that I would achieve for maybe three weeks. Now it was wearing off faster. I was losing ground and scared. Being frightened wasn’t serving me very well. Crying over it wasn’t going to fix it. I was ready for IVIG and I felt awful at the thought. I didn’t want to have an infusion on top of infusions. It wouldn’t have stopped the ketamine infusions but rather in addition too. I wasn’t going to just go along with it. I was going to leave no stone unturned. Then everything changed.

Doc said I had a 50/50 chance that LDN would work. I never get good odds like that, so my ears perked up. The CRPS/SFN causes my nerves to be inflamed throughout my body. The small fibers in my skin are being destroyed at two levels, epidermis and dermis. I had no small fibers to be found in the epidermis, and the dermis had less than 1%. Yes, it’s pretty bad. Some days, just walking to the bathroom was next to impossible.

Naltrexone works by temporarily binding and blocking a mechanism called the MU receptor, which is linked to pain. Blocking the receptor tells our bodies that we aren’t producing enough endorphins (our natural pain relievers), and then releases them.

Low dose naltrexone increases the secretion of naturally occurring endorphins (“feel good, runner’s high”). Endorphins relieve pain, give a happy feeling, and reduce inflammation. LDN increases the release of the opioid growth factor which works powerfully to reduce inflammation, auto-immune responses, and tumor cell growth.

LDN may help to repair the linings of the gut and brain barriers that prevent absorption of foreign substances, thus healing issues caused by a damaged microbiome. Additionally, LDN may balance stress hormones, and also relieve anxiety and depression by improving brain neurotransmitter function.

As I write this, I am about to start my fourth month on low dose naltrexone. It is not addictive, but you do taper on and or off of it. I like that it is not covering up my pain, but rather uses the body’s own “morphine,” or painkillers, to reduce the pain and inflammation in my body. I’ve rarely had normal white blood cell counts over the years. It’s perfect now. My labs are amazing.

You can not take opioids with it. I’ve been off them for about four or five years, out from under the haze of awful medications. It is not contraindicated with ketamine infusions. I have found it enhances the benefits of cannabis. My view is supported by an oncology article from Spandidos Publications. This particular study looked at the CBD side of cannabinoids taken while also receiving LDN nightly. I’ve noticed an ability to use less cannabis in the presence of daily nighttime doses of LDN. Needing less medication is incredible at this point of illness, and almost unheard of.

As I write this today, I am hopeful. Perhaps this is the start of a remission. I don’t kid myself and am forever a skeptic, so I do consider myself in the honeymoon stage of this treatment. I’ve noticed just how much calmer and happier I am. There is a stillness in me that hasn’t existed for years. It’s not just the endorphins, but the relief of a large amount of pain and neurological symptoms. The burning and fire ants have been for the most part put out. The glass shards and briar patches are gone. I’m able to rise out of a chair without shooting pains or daggers. My mind is clearer in this stillness, which feels so very new to me. Having been diagnosed with my second cancer in 2013, I can say I haven’t felt this good since then.

I am now spacing out my ketamine infusions. I write this while celebrating my 11th week since my last infusion, whereas I used to be able to wait no longer than six weeks. Now I am looking at three months. It’s said that the full effect of the medication is not fully known until eight to 12 months of use. I imagine that this could get even better, and I think I can really exhale. (As an added benefit, I have also lost weight.)

It’s never too late to try something new. Never look at the world as limited. Medical science grows by the day, offering new and wonderful ways to increase the quality of life and longevity. After spending two years locked in a bed, dependent on wheelchairs and oxygen, I am about to close out this piece, put on a bathing suit, and enjoy swimming in a pool. Look at me now being all badass. I am not defined by my diagnosis. I live in spite of it.