Living with Complex Regional Pain Syndrome

Posted by Krista Lynn Hughes on Monday, November 30, 2009

Living life in pain

I am living with a disorder called Complex Regional Pain Syndrome (CRPS). It’s also called Reflex Sympathetic Dystrophy (RSD). It’s a chronic nerve pain disorder. CRPS/RSD is very painful. Anyone can get it. It can spread from limb to limb. There is NO CURE, but it’s treatable and possibly reversible from being a long-term condition IF caught in time by doctors. There are 4 stages to RSD and I have Stage 2 already.

I have been living with this horrible disorder since November 2006 at the age of 35. It all started when I was admitted into the hospital to get some intravenous drugs because I had a migraine for a week. My veins are hard to find. The IV had to be place in a vein on my left foot. Two nurses tried to get the IV started on my foot, but they were unsuccessful. The attending nurse called down to Short Stay for an Anesthetist to run a central IV line in my neck. The Anesthetist’s working that day told the nurse it would have to wait until the next day. The nurse kept calling the Anesthetist, but no one seemed to care. This went on for five hours. Finally, the nurse gave me a pill to take to ease the migraine, but all that did was made me sick to my stomach. Then a pediatric nurse was able to get the IV started in my foot. I had excruciating pain in this vein every time the IV line was flushed out and medicine was run through it.

Once I got home from the hospital, my foot was never the same. It hurt to put pressure on my foot. The vein was swollen and purple. My foot was so swollen I couldn’t even wear a shoe. I applied ice to my foot to get the swelling down. I know now that was a big mistake. You should never apply ice on injured limb not knowing if it will turn into CRPS/RSD.

My foot was not getting any better. I had missed so many days from work. I went to see my primary physician about my foot. She diagnosed the vein on my foot as phlebitis (blood clot). My doctor told me that my vein was non-functional and I couldn’t even use this vein to have blood drawn anymore. I was on several antibiotics for the inflammation. My doctor first tried Cephalexin, then Levaquin, and finally Doxycycline. However, these antibiotics didn’t take down the swelling. I was also on several pain medicines. I was first on Hydrocodone. It made me extremely nauseous and dizzy. Then I was on Meloxicam and Ketorolac Tromethamine. However, these medicines didn’t help with the pain at all. She also recommended keeping moist heat on my foot. My doctor then referred me to a vascular specialist since I was not getting any better.

The vascular specialist could not understand why my vein was not healing and causing me so much pain. He said he could remove the vein, but he didn’t recommend it and he couldn’t guarantee this would help. He wanted me to try the Lidoderm Patch and take aspirin round the clock for a month. I continued to keep moist heat on my foot when not wearing the Lidoderm Patch. The patch and aspirins helped some with the pain, but I was still in a lot of pain.

In the middle of January 2007, I was FIRED from my job because I had missed so much work. I was FIRED over the phone of all things. This was a blessing in a way. Now, I could rest my foot and keep moist heat on it, as I should be doing.

After a month, I was still no better. The vascular specialist said it would probably take my foot some time to heal. I continued to still take aspirin round the clock, use the Lidoderm Patch, and keep moist heat on my foot.

It had been five months since my foot was injured. I applied for Social Security Disability in April 2007. I could have drawn unemployment, but you had to be able to work. The pain was getting worse by the end of the April. I went back to the vascular specialist, but he was out of ideas. He suggested that maybe I had some type of nerve problem.

I went to my neurologist to see if he could help. They ran an EMG study to test the nerves and muscles on my left foot. He informed me that I had permanent nerve damage (the pain nerve) on my left foot. There is no cure for this type of nerve damage. He said more than likely when the nurse(s) inserted the IV needle in my vein that they hit and damaged the pain nerve. The only medicine he gave me was an anti-depressant called Cymbalta. He said this would help with the pain as well. He said, “There was not much more you can do for nerve damage.”

I was approved for Social Security Disability in July 2007. I continued living my life in pain. My last visit with the neurologist was in October 2007. This doctor was not trying very hard to help me with my pain. I went back to my primary physician for a second opinion. She put me on Lyrica for the pain. I continued to keep my foot elevated and keep moist heat on it. I gave Lyrica some time to work; even though, it was making me very nauseous and dizzy.

I was referred to another neurologist out-of-town that specialized in nerve damage. Finally, I was diagnosed correctly. He said I had Complex Regional Pain Syndrome ~ Stage II. He told me to stop the Lyrica since it was making me so sick. In place of Lyrica, he put me on Neurontin three times a day. Neurontin didn’t make me so sick to my stomach like Lyrica did. I went to see this doctor throughout 2008.

This year (2009) I transferred to a pain management doctor that was local who knew a lot about CRPS/RSD. He has been more helpful than the other doctors I have seen. I’m still taking Neurontin, which the dosage has been changed several times. I’m currently taking 300mg in the morning and 600mg at night. I’m still taking Cymbalta once a day. However, the Lidoderm Patch is no longer helping.

I’ve had some setbacks since June. The pain in my foot is getting worse. My CRPS is spreading up to my leg now. I’ve started to use the heating pad and/or ThermaCare patch on foot/leg. This is helping some. I’m starting to have short-term memory problems and difficulties concentrating, which is one of the symptoms of CRPS.

I have discussed with my pain management doctor about some of the other treatments available. I could have a nerve block performed or a spinal cord stimulation implanted, but it involves an IV needle. As I stated earlier, I got nerve damage and CRPS due to an IV needle. Not only that my veins are so hard to find. My doctor believes my CRPS could progress more than it has if I went through these treatments. My only option right now is treating my CRPS through pain medications.

It has become very painful and difficult walking on my left foot. I got a Hoveround Power Chair in October. Even though I have a power chair now I am still walking just a little bit on my foot. I do not want my left foot to get stiff or lock up. There is a saying “If you don’t use it you will loss it!”

CRPS has changed my life forever. I was an active person and had a successful job. Now, I have trouble walking small distances. My left foot swells up every time I walk. My foot is always cold, sensitive to touch, and is always propped up. The pain feels like my foot is on FIRE. I have trouble sleeping at night because of the constant pain. I wake up in the mornings and go to bed at night in pain. From the time I get up in the mornings, I’m either sitting or lying on the couch.

I have learned to cope by living my life day-to-day. However, some days are more painful than others. The Winter and Rainy seasons makes the pain worse. The things that do help when I’m in pain are meditation, prayer, using a heated blanket, playing a computer game, or even watching a funny movie. Giving up isn’t in my vocabulary and I will not let this illness beat me. I have a very good attitude on life and I will never give up without a fight. I pray every night for a CURE.

The only thing that keeps me sane is writing about Complex Regional Pain Syndrome (CRPS) and educating people on this disorder, and meeting and supporting other people with this horrible disorder online. I couldn’t get through my day without my family, my best friend, my RSD Angels on Facebook and Twitter, and most of all my faith in God.

I’m at peace with my life. I can’t change what has happened to me, but I can move forward and stay living my life the best way I can. CRPS is not just a painful disorder, but it changes every aspect of your life. I hope everyone reading this understands a little better how CRPS changes your life. It is so important for the medical profession to understand that CRPS is a REAL and ALIVE illness. All doctors especially primary physicians and neurologists need to be educated about CRPS and the proper treatment to be administered to the patient. We are not faking the pain, it is NOT all in our head, and we are not a mental case.


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