Another Anniversary: 10 Years of CRPS

Towards the end of last year, I realized that 2013 marked another anniversary for me: 10 years of pain. I knew I had hurt my knee for good in January, but I had to look up the exact date.

It was January 17, 2003.

Three years to the day before Jackson was born. Obviously, I couldn’t schedule a pain anniversary post for Jackson’s 7th birthday, so I looked up when I was actually diagnosed with RSD.*

On March 18, 2003, an orthopedic surgeon in Manchester, NH said that he thought I had RSD. However, he hoped that he was wrong, because “RSD isn’t really something you want.” I went home and searched for information about it. As soon as I read the description, I knew – I had RSD. Or, CRPS. Whatever.

I moved over all of the posts I wrote on LiveJournal about CRPS and pain. The most relevant ones are listed below. If you know me in real life, I’d actually kind of like you to read them. They sort of give some insight into why I’m me.

What does this anniversary mean, exactly? It means that I’ve been in pain every day for the last 10 years. For three years, that pain was excruciating. My knee was on fire. Someone was poking and jabbing it with a red hot fountain pen of precision, at completely random times, all day, all night. I basically slept because of drugs. And was I ever on drugs… But at the end of September 2005, I got into a drug trial and the pain started to get better. I had my first pain-free day on December 16, 2005.

After Jackson was born, I tended to take half of the then-new medication. I didn’t have pain-free days anymore, but the pain was tolerable. That’s mostly where I am now. Most days, I’m about 2-4 on a pain scale of 1-10, where 10 is “please just cut my leg off or kill me now.” And I’m not exagerrating. At least, not for me. I made my own pain scale and I deliver it to all of my new pain doctors when I first visit them. I also give them the 2 page spreadsheet of drugs I’ve been on and the 2 page pain timeline that notes milestones in my pain history.

I always thought I’d be at least in my 50’s before I complained about my aching fill in the blank. Instead, I was 27. While most days, I’m just fine, in comparison to the early days of CRPS, there are days when the pain is a 6, 7, 8 – and those are the days when I’m just a bitch to be around. So I try not to be around. Thanks to a big miscommunication between my doctor’s office and the only pharmacy in the US that ships my super-high-security medication, I was without that medication for more than a week. That was a very bad two weeks.


* You see, RSD, short for Reflex Sympathetic Dystrophy, is what Complex Regional Pain Syndrome (CRPS) was called before the medical community realized that the sympathetic nervous system isn’t always involved in RSD. So, in 1996, they split the diagnoses – If the sympathetic nervous system is involved, it’s RSD. If the sympathetic nervous system is not involved, it’s CRPS. How do they tell? Basically, if you have a nerve block (kind of like an epidural) and you’re still in pain, your sympathetic nervous system is not involved.

8 thoughts on “Another Anniversary: 10 Years of CRPS

  1. I know this isn’ t the type of anniversary to congratulate on, so I will leave that pleasantry at bay. Myself dealing with CPS and Fibromyalgia know all to well the pain you experience and applaud you in your daily life, especially being a Mom (which is a full-time career in itself!).

    After much support from you I finally got the proper treatment for my CPS and Fibromyalgia, and now am an advocate for the disorders myself! I have you to thank my dear friend for encouraging me to take my doctor by the lapels of his lab coat and demand the treatment due me!

    • Your blog is not showing up in my feed, my friend! I’m also supposed to get email when you post, and that’s not happening. I was worried about you. It looks like I have a lot of reading to do.
      I’m glad you’re getting your pain under control. Pain patients have to stick together!

      • That is so odd…did you get the notice that the url changed? That could be the problem…, thank you for worrying about me (you don’t have me on Facebook do you?). Yes you do, but do it at your leisure! That’s right united Pain patients can get things done whether it is education, advocacy or legislation!

  2. I remember seeing a show on TV years ago about RSD and thinking what a horrible illness, so my deepest sympathy is with you! I didn’t know that the diagnosis is now even more complicated. Thanks for educating.

    • Paula Abdul went public with having RSD in 2004. That was really helpful for me. I would just email people the link to her People article.
      I am a lucky person in that my pain is under control. Most people never get there.

  3. I had never heard of CRPS until I started reading your blog. It sounds like it’s been a rough journey to get to a place of relative equilibrium with you pain. I simply can’t imagine what it must be like to have CRPS. Thank you for the lesson in CRPS.

    • The beginning was simply awful. Now, I’m lucky. I’m only on 2 pain medications. (I’d have 3 if I could find a compounding pharmacist, but that’s a cream that I put on my knee.) My biggest problem now is that I really can’t exercise. I can walk. I can swim. That’s really it.
      I wish more people knew about CRPS and chronic pain in general. It’s so hard to be seen as a whiner, drug seeker, lazy, etc.

  4. Pingback: Adoption as a First Choice | Holding to the Ground

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