My Last CRPS Post for Some Time


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.

5 thoughts on “My Last CRPS Post for Some Time

  1. I’m just glad they finally got a right diagnosis for you and that you have a good doctor. It is difficult for “healthy” people to understand pain and severe situations until they lose their health. It’s the situation of not being able to understand, and sometimes even appreciate, how good they have it until it’s gone. Praying you get your needed insurance approval and that your family learns to cope.

    Liked by 1 person

  2. Keeping good thoughts that some relief from pain organ repair will help with food you are now able to eat… Glad you finally got a Dr that seems to be in the know and work with you … Hopefully some things and your pain easies ….good thoughts your way .,

    Liked by 1 person

  3. Hi Hadena I also have pain all the time from Osteoarthritis whichI’ve had for years diagnosed at a young age i know pain can be all consuming u can think of nothing else BUT i had breast cancer this year & one  of the chemotherapy components actually relieved my pain it was like magic i could of run a marathon but i was told it was a steroid with nasty side effects if taken on its own. So its like they say every cloud has a silver lining at least for a while cancer is gone pain is back with a vengence. So the point of this tale is you never know whats around the corner And never apologise for how you feel or how much help u need  life is too short & it’s  not your fault.With understanding & love Fingers crossed for your next tests in Jan 2018Merry Christmas to u & your family xx.NinaLondonUK

    Sent from my Samsung Galaxy S7 – powered by Three

    Liked by 1 person

  4. nat geographic channel doing special that Zodiac killer may have had one of his main codes cracked… obviously they wont announce real code broken on a tv show, but something you can research as possible..
    Wish Luck..

    I know you are going thru hell on speed right now and I blasted an earlier post.. I am sorry, this week was 1 yr anniv of Dads death and now just a week from same for mom.. we came home from the nat cemetery respects and wreath to a message my uncle had passed leaving my aunt simply devastated 57 yr marriage gone in a moment and lost of her older brother type cousin who grand mother had raised her from a less then 2 yr old.. So taking against all legal advice I have taken funds from estate still in probate to buy the home we are in from brother, pay property tax on two properties in two states and pay realtor trying to get fl home cleaned and on market, and medication for MS suddenly this weekend has cause itching like ants constantly crawling no whelt.s or anaphylaxis reaction simply nerve endings firing causing scratching to point of drawing blood.. so it’s just a Friday the 13th loop and I am on the twilight zone calendar….

    i am sorry.

    Like

  5. I really do want you to write the book on CRPS. I had never heard of the condition until i was reading your blog.

    First, writing from the patient’s perspective is totally different from the emotionally scrubbed treatises in the medial literature. This is a personal experience that every patient perceives and responds to differently. Writing about the emotional and family impacts you have lived thru will help people understand the debilitating nature of the condition. I hope you also write about the medical field’s response to your attempts to get pain medications. This sounds like it will be an eye opener.

    I also want to read your documentation about the incorrect diagnoses and the multi year struggles to get the correct condition assigned in your chart. My father went years misdiagnosed about a relatively uncommon central nervous system malfunction, so i understand fighting the medical establishment.

    Please know that we, your fans are rooting for you. And not just because we are hooked on the fabulous stories you can spin, although i cannot deny that is part. 🙂

    We want you to thrive because you are an interesting person.

    >

    Liked by 1 person

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