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!
4 thoughts on “CRPS and the Treatment That Actually Works!”
You are a strong woman!!! It’s so hard watching people you love go through these things!! When you look normal on the outside but are suffering for something that know one sees or understands !! And this is why you should never judge a book by its cover!! You NEVER know what someone else is dealing with!! I unfortunately have not one but 2 of my loved ones who have this awful disease 😦
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Thank you! 😘 I feel for your mom because she’s dealt with this much longer than I have. And you’re right, it is awful! I pray they figure out what causes this so they can come up with a better treatment or even possibly a cure! You all have been there with me through it all and I appreciate you all greatly! Yes, you never know what someone is going through. People will tell me they forget I have anything going on because I’m so positive and don’t talk about it. I just don’t see the point in being negative or talking about it all the time. I just try to stay positive, get my thoughts and concerns out when I need to, but still just continue living my life.
Your journey with CRPS is so inspiring to me. I already have a chronic pain condition called thoracic outlet syndrome. I had surgery for that and I thought my CRPS symptoms would clear up but they did not. I’m going to a new doctor soon who specializes in this disease and I am praying for help.
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Wow! I too have thoracic outlet syndrome! I actually was diagnosed with that first. Then, had surgery to remove the cervical rib causing it and woke up knowing something was definitely wrong. Being in my early 30’s and unable to do anything for myself, but was told it was just from the surgery, no worries! As time went on, I was in extreme pain and nothing was helping! I was unable to wear clothing on my right shoulder/arm and was fearful of my future and in a deep depression. I have tried a lot of things, seen many doctors, and have finally found something to work for me. I pray they figure out what causes this horrible disease so they can figure out a way to help us! I will pray for you and pray you get help. I am here for you if you need anything at all. I know how lonely this disease can be.