The pain caused by Complex Regional Pain Syndrome or CRPS can be absolutely excruciating at times.
The McGill pain index states it is one of the most painful diseases known. Everyone is different and your treatment plan may differ from mine.
As of this writing, for pain, I am on Gabapentin, Lyrica, Celebrex and Low Dose Naltrexone or LDN. I did not see any major relief until the LDN was prescribed. It was the last one that I was started on, but the relief was fairly substantial at the time. The ‘low dose’ means that it is prescribed off-label for CRPS, it is actually a drug that treats addiction.
Prior to this combination of medications I was probably averaging pain levels on a scale from 1 to 10, around a 7 to 9. I am now currently averaging a 5 to 6. I frequently have pain spikes to 8 and enjoy times of a pain level at around a 4.
I also take Nortriptyline for sleep which does help me stay asleep. It’s the getting to sleep that is my main issue.
The LDN, as I stated earlier, was the biggest help to my pain levels. It is my understanding that not everyone who has CRPS knows about this medication. If you are not aware of it, ask your doctor about it and how it might help your CRPS.
I moved to Connecticut at the beginning of 2017 from Colorado and had to change to a new doctor, who is an expert in CRPS. He is fantastic and he truly understands and listens to me. He is fairly similar to the doctor I had in Colorado, but he does believe in medical marijuana for pain, unlike my other doctor. In fact, he prescribed me CBD(Cannabidiol), but it was denied by workers compensation. This was the first time in over two years that workers compensation denied any treatment. I was bummed by this because I would have loved to get off at least some of the meds I am and head towards a more natural medication plan. I have high(pun intended) hopes that CBD will eventually be recognized as a viable pain medication alternative.
In addition to all of my pain medications, I am also on Lexapro for depression caused by the CRPS and/or my pain meds. It seems to help, my wife states it is and she likes me on it. I do not like it very much, I think it is just not for me. I feel like a zombie on it at times and I am planning on speaking with my physiatrist about possibly stopping taking it. He may have other suggestions and will weigh all my options.
I will talk about my worker’s compensation case at a later date.
There is also a drug called Ketamine that is showing great promise, click on the link to find out more.
Let me know if you have any questions about medications.
UPDATE: March 19, 2017- I have stopped taking Lexapro and I am now on Wellbutrin. During my yearly physical, my primary care physician thought that Lexapro could be causing some unwanted side effects like low libido, overeating and sugar craving. I will give the Wellbutrin time to work its magic on me and I will update it later.
Update: A week ago on 2/22/2017 I ran out of LDN due to workers compensation denying it. I am having more pain, anxiety, insomnia and I am more forgetful than ever. Today, my wife and I were in panic mode, because I thought I took my afternoon medications twice. I could not remember if I did or not.