I was politely asked to clarify what is “wrong with me”. So here goes:
I have been diagnosed with a rare neurological disorder called Complex Regional Pain Syndrome. My nerves are essentially attacking themselves because of an injury I sustained when I was 13. I was tested for it 5 times and the tests always came back negative. If I knew then what I know now, I would have pointed out to the neurologists that did my testing that based on symptoms alone, it was obvious that I had it.
I now know that the test is only accurate in every 1 of 50 tests, making it essentially pointless.
Sadly, because I wasn’t treated much earlier, the condition has spread from my hands to my digestive system, to my hips and I have lost significant mobility in my right hip.
Unfortunately, because I went without treatment for 22 years, we are having trouble figuring out how to treat me. There is no case study on file for CRPS with such a long period of time being undiagnosed that doesn’t end badly as the condition is fatal.
Thankfully, I have an amazing doctor and he is willing to throw things at the wall just to see what works and he is consulting with a neurologist on the case that specializes in CRPS with the Mayo Clinic.
If insurance cooperates, we are doing a drug metabolism test in January to see if that helps point us in a direction for treatment. It’s an expensive test that requires pre-certification and with the holidays we may or may not have approval for my January appointment, but fingers crossed.
The reason I get so excited when I am able to get some writing in, is because I have been having trouble with it. My daily pain level with treatment – not using opiates is about a 15. Which is better than the 40 or 50 that it is without the Lyrica and Muscle relaxers. However, the Lyrica has impaired my ability to think quickly. Also when my residual pain is a 15, I have trouble thinking of anything but the pain, which is not conducive to writing novels.
I did take on a second job selling Scentsy because I felt I needed the boost in income – my medications are ridiculously expensive and not fully covered by insurance. So, if you need or want Scentsy, I’m your girl!
There are some adjustments that my family is still having to make; I have trouble traveling which sucks more than you can imagine. I have to take meds 3 times a day, more if we include the opiates that handle my residual pain. Sadly, I must have the opiates to function some days. There are days that without Vicodin, I can’t step into my bathtub to take a shower.
Thankfully, it’s not all doom and gloom. After 12 years of my GI tract disagreeing with my food choices and no one being able to tell me why, the Lyrica has made it so I can eat whatever I want again. I had a banana for the first time in 12 years a few weeks ago. I had forgotten how much I like bananas. I feel like a minion because every time I go to the grocery store, I pick up bananas now.
And now, I am now being properly treated because CRPS if untreated for too long begins to attack organs. I got lucky in that it was just my digestive system and optic nerves. It could have been my kidneys or liver. Without treatment, CRPS is a fatal condition because of the organ damage it causes.
As my family transitions and adjusts to this new condition, I would ask that you keep them in your thoughts and prayers. It is hard on everyone, but in some ways I think it is harder on my family than on me.
I’m happy to answer any questions anyone has.