I, like almost everyone else in the country, have addiction in my family. So, I have always said that I don’t want to take anything that I could get addicted to. I’ve seen family members struggle with addiction and I know that’s not something I want any part of.
Back in June 2018, following my CRPS diagnosis, my family doctor said he wanted to put me on Neurontin to hopefully help with the nerve pain. At that point, I was unable to ride in a car hitting bumps, sing, laugh or talk loudly without having so much pain that I would cry. But even with all that pain, I still resisted my doctors wishes on starting Neurontin. Luckily, my doctor had known me for quite some time and knows just how stubborn I can be and that I’m not so easily convinced when I feel strongly about something. He gave me my dilemma like this- you can either take this medicine that may help with your nerve pain or continue living like you are, with this disease that many people commit suicide over! He said without you doing something to help with this pain, you’re not going to be able to function and live life! He started me out on 100mg three times a day. When I left the office, I was not happy that I was going to have to take something that I knew I’d get addicted to. But nevertheless, I decided to give the Neurontin a try and boy am I glad I did! It helped me get my life back! Within no time I could tell a difference! Knowing that I’ll have CRPS the rest of my life and not knowing whether there will be anything else to help, I’ve decided to try to keep my dose as low as possible. I’ve had to up my doses and have been able to function taking 200mg at breakfast and lunch, then 400mg at night. The extra at night also helps me sleep as anything touching me, even the slightest touch, sets me on fire!
I did relatively well on the Neurontin for a little over a year. Mind you, I was unable to wear any clothing whatsoever on my right upper chest and arm. Luckily, my employer allowed me to continue to work and allowed me to dress how I could to be able to continue working. I am so blessed to have the support that I do! The winter months were especially hard as I couldn’t wear a coat! I had a corn bag that I would heat up in the microwave, with the heat and pressure of the bag creating a barrier between my skin and my clothing, I could then wear a coat. However, when my bag cooled down, if I wasn’t close to a microwave I was out of luck! So, I knew that I needed to figure something else out, but also being depressed, I really wasn’t able to think clearly about what I should do next, research or really make a plan for anything!
It wasn’t until I was pulled out of depression in February 2019, following a Ketamine infusion, that I realized I wasn’t going to live that way. I started researching, talking to people and other physicians who were familiar with the disease, just trying to figure out anything that could possibly improve the way i was living! This is when I found my current regimen: a low dose Amitriptyline, low dose Naltrexone, and a magic cream! As with most everything I’ve done since being diagnosed, including injections/therapy/ketamine, my insurance doesn’t cover any of my new regimen except for the Amitriptyline. And honestly I think that’s only because they’re too ignorant to realize that it’s not being used to treat depression. A low dose of Amitriptyline, typically starting between 10-25mg, has shown to improve nerve pain. Being an old drug and therefore well researched, I was ok trying it. I currently take 10mg at bedtime.
Then, after speaking with others and researching I found that Naltrexone, commonly called Vivitrol, has been used to help treat those struggling with addiction. However, in small doses has shown to improve chronic pain. I take 3mg at bedtime, which also helps me sleep. This will likely never hit the market to help those suffering with chronic pain and therefore will likely never be covered by insurance plans. This is all because of MONEY! The pharmacy companies cannot make money off of this drug because it already has a generic form. It’s very sad to think how many others could be helped by this drug, but will never get the chance because they can’t afford to pay out of pocket for it, this is so sad and frustrating to me! And I plan on fighting to change this! My “magic cream” consists of 5mg Ketamine, 2mg Baclofen, 3mg Diclofen, 6mg Neurontin, 4% Lidocaine. And of course I’m still taking the Neurontin.
Last year, I wasn’t sure I would ever be able to wear anything on my right upper chest. But now, I am able to wear a coat and jackets at work during meetings without having to wear a heating pad under it! To some this may seem minuscule, but to me, this has been absolutely life changing!
If you’re just beginning your journey with CRPS, don’t give up! There are always new medications being approved and new treatments being tried that could help you! When I first began my journey, I doubted that things would ever get better because it just didn’t happen as quickly as I would have liked and the pain just kept getting worse! But I think it’s been good for me, slowed me down and let me struggle a bit. This whole thing has been rather humbling. I have prayed that God give me strength to get through this and I believe I am going through this to help others. This is called the suicide disease and many others before me haven’t been able to find relief. I feel very blessed that I have been able to find treatment that works for me and can only hope that it can help others! ❤️
This is me October 18, 2019 wearing a jacket for the first time. A little silly to some but this was huge for me!