Did You Know That CRPS Can Spread?

As I believe I’ve mentioned before, I have Complex Regional Pain Syndrome. Essentially, I have nerve damage in my left knee. There is no cure. However, I am incredibly lucky/blessed to have found medications that control my symptoms, for the most part, and allow me to function as a productive member of society.

I am not a normal CRPS patient. A few months ago, I joined a few CRPS groups on Facebook. They are full of people in despair. One person wrote, “What did you do for work before CRPS took away your livelihood?” Because it does. I could hardly work some days, before I found the right meds. People who have had the disease for awhile generally report that it spreads, usually on the same limb, but sometimes it “mirrors” where the original damage is. Why? Well, I asked my pain doctor, and he said, “No one knows.”

So I asked Dr. Google, and I found a study titled Spreading of complex regional pain syndrome: not a random process. It states, “Although different causes of spontaneous spread have been proposed, including genetic predisposition, aberrant regulation of neurogenic inflammation and maladaptive neuronal plasticity, the underlying mechanisms have not been elucidated.”

In other words, “we don’t know.”

On September 11, I sprained my left ankle. It really wasn’t getting any better. One night in mid-October, I was examining my ankle after my shower. I noticed that my ankle was the same color as my knee.

Well crap.

You see, one of the four hallmark symptoms of CRPS is color change. The fact is, after showering, my left knee and my left ankle look remarkably similar in color. All red with some purply splotches thrown in. Hooray.

Another hallmark symptom of CRPS is constant, chronic burning pain, “usually significantly greater than the original event/injury.” This includes an extreme sensitivity to touch (allodynia). Because of the meds, I don’t have the constant pain, but I do have the allodynia. Big time. I have tried to unwrap my ankle from this nice soft bandage, but the movement of the sock against it makes it burn. Ankle socks feel like they’re cutting into my skin.

I was supposed to see my pain doctor for my knee – just to check in, as I do every few months – on 10/22. But he had a family emergency and I was rescheduled for 11/7. I was really, really hoping he’d tell me I was crazy. (Unlike the first time, when I was being diagnosed, and I wanted people to understand that I wasn’t crazy.) Unfortunately, he told me I wasn’t.

So I now have CRPS in my ankle as well as my knee.

At least it took 10 years to spread elsewhere. And I am on meds that help the worst of the symptoms. And I’m going to try lidocaine patches to see if they help.

But if the patches don’t help soon, my doctor wants to try a nerve block. I hate nerve blocks. I had three in the first year of CRPS (for my knee) and none of them worked. The last one was honest-to-God torture. I screamed. And cried. A lot. However, my doctor says time is on my side here, as we’re so close to the onset. He’s not going to make me have a nerve block. Honestly, the only reason I’m considering it is that I want to go ice skating this winter. I want to take Cassie now that her feet are big enough for their tiniest skates. (I asked last year.)

Another bright side, sort of, is that now that I know it’s CRPS, I can just say F-it, and do whatever I want and just deal with the pain, instead of trying to baby my ankle and make it better. It’s not going to get any better, so, as long as I don’t do anything truly stupid, I can’t make it any worse. Of course, it also means that walking is always going to be painful, wearing shoes is always going to be painful, walking downstairs is always going to be painful, ice skating is going to be pure torture (but I’ll likely do it anyway, I really love ice skating)… you get the idea.

Pity party of one? That’s me.

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5 thoughts on “Did You Know That CRPS Can Spread?

  1. Ugh, Robyn, I hate hearing about you having this disease. Yes, you have talked about it before, but i have to admit I had FORGOTTEN that you are dealing with this. I would be venting on my blog every week, I’m sure.

    • Oh, it’s really not as bad as it used to be. If you had been on LiveJournal back in the day, then you would have seen some wailing and gnashing of teeth. In fact, I think I moved those posts over here, so if you look for posts tagged “crps” you’ll see the venting.

  2. Wow. I can’t imagine! You are so strong going through all of this! I hope that the nerve block works this time and you can go skating with Cassie!

  3. Pingback: Happy Holidays 2013 | The Chittister Family

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