CRPS: A Final Thought for the Week

Some people here and on Facebook have commented about not knowing how horrible CRPS really is. I feel the need to point out that, at this moment, I don’t know how horrible CRPS really is. You see, I suffered excruciating, debilitating pain for only three years. At the end of that three years, I found – or rather, my doctor at the time found – a combination of medications that almost miraculously brought my pain down to 0-2. I’m only at 4 (on average) these days because I’m a mom. More on that in a minute.

Most people who have CRPS do not recover. They get progressively worse. Ultimately, they have few options. They can get morphine pumps in their spines. They can get spinal cord stimulators implanted. They can pop pills all day and all night – pills for the pain, for depression, and the side effects from the pills for the pain and depression. They have to fight with government agencies who usually do not recognize CRPS as a disability. They have limited mobility. They likely lose a lot of friends because no one understands what they’re going through, and those who try, well, it’s hard to listen to someone complain about being in pain all the time. Even if your friends are there, you, the pain patient, feel like a burden to them, so you might cut yourself off.

At the beginning of my journey through CRPS, I was treated horribly. Doctors thought I was whining – making the whole thing up. Seeking drugs. Depressed about other things and projecting that onto my body, thus creating my own pain. I fought like hell to find out what was wrong with me. I have a 12 x 12 scrapbook page full of dates of doctor’s appointments from January 17, 2003 until November 13, 2003. That’s 38 lines of dates. I was diagnosed within two months of injury, and started treatment in the form of pool therapy just a few days after that. People can go for much, much longer without a diagnosis and may never receive proper treatment.

I was lucky, or blessed, depending on your theology, to first find a doctor who knew what RSD was. (Remember, RSD and CRPS are two sides of the same coin.) When the doctor to whom he referred me didn’t believe I had CRPS, a friend of mine happened to see an article in the paper about a doctor opening a pain practice five miles from my house. She gave me the article and I made an appointment, six months after injury, four after diagnosis. We had the means, at first, to pay out of pocket for his services, for the physical therapy and pool therapy, and to buy a hot tub so I could do pool therapy twice a day. I had the flexibility in my job, for about one year, to go to all of these appointments and tests and to work at home more often than not.

I read everything I could about RSD and CRPS. I was taking voice lessons, and my teacher was a big believer in hypnotherapy. Hypnosis was on the list of alternative treatments for RSD/CRPS. As luck would have it, there was a hypnotherapist in the same practice as the “regular” therapist I was seeing (for depression related to pain). She and I hit it off, and she found that I was extremely receptive to hypnotherapy.

For the first 1-1/2 years, pool therapy and hypnotherapy worked the best to control my pain. Because I could move in the hot tub, I didn’t lose all mobility in my leg.

When we moved here, I was once again lucky or blessed to be referred to an amazing physical therapist – Rob Walters. He listened to me and we made realistic goals. My first physical therapist put me on a stationary bike. I haven’t been able to ride a bike since I was in high school – before the CRPS, I had chondramalacia patella, a very common knee problem. Rob and I worked on range of motion. When Max and I were doing our home study, Rob and I actually worked on getting up from the floor. I figured, with a baby, I’d have to be able to sit down on the floor and then get up again, which was something I couldn’t do at the time. It’s still not pretty, but I can do it.

Finally, I was lucky or blessed to find Dr. Robert Cluff. I didn’t care for his receptionist, the fact that he didn’t return phone calls, his constant tardiness, nor for the fact that we spent most of my appointments talking about adoption. But the guy did know his neuropathic pain syndromes, and he didn’t try to talk me into more nerve blocks or a morphine pump. He switched me to nortriptyline, and suddenly I wasn’t sleepy all the time. Then, he got me into the trial for Xyrem, and within two months, I was pain free.

Dr. Cluff’s cons outweighed his pros, and I was lucky or blessed that Dr. Arnold Weekes joined my PCP’s practice. He was open to becoming certified to prescribe Xyrem. He’s always been willing to work with me on my medications. Because I’m a mom, I felt the need to be more alert more often. Xyrem is very sedating – that’s kind of the point of the drug. The nortriptyline was causing other side effects. So, I traded those side effects for slightly more pain, and he was OK with that. I imagine I will go back to full doses when both children are in school full time.

Yes, CRPS is awful, and I honestly wouldn’t wish it on my worst enemy. But I am very lucky. I’m just about as close to cured as a person with this disease can be. So I feel guilty when people say, “Wow, I didn’t know how bad you have it.” Because it really could be 1,000 times worse.

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