Before August of 2008, I was a healthy, active, yoga-loving, successful, workaholic 27 year old (if that makes sense to you). Now I am a disabled 30 year old with chronic, debilitating pain. In August of 2008 I was in a freak accident that resulted in stage 2 RSD (reflex sympathetic dystrophy) often called CRPS (chronic regional pain syndrome). CRPS is a nervous system disorder that destroys bone, muscle, skin, and joints. It often leads to paralysis caused by a severe blow of some kind.
Severe pain and exhaustion are the biggest complaints. Many people only get a minor form of this disease, but I was not so lucky. I was forced to go on disability in January of 2009 with the hopes of getting it under control, but this was not the case for me. For no apparent reason, the disease spread down my right leg in that spring. By the end of the year I used a cane more often than not. I had physical therapy two to three times a week, had endured five sympathetic blocks, countless epidurals, steroid and anesthetic injections, Botox injections, (and plenty of other procedures I can’t even remember anymore) and lived on extremely high doses of narcotics just to get through the day.
Then things got worse. St Patrick’s day of 2010 I got in a serious car accident, totaling my car and causing the disease to spread to my left side. My total affected areas are: neck, both shoulders, elbows, hands, right hip, low back, both knees, and ankles. The one good thing is, now that the disease effects both of my legs, my limp is more balanced, which is a huge blessing as using my cane is extremely painful for my upper body.
In January of 2009, my doctor’s told me that if I continued working so hard I ran the risk of losing my arm completely, so I had to take a leave from work and go on disability. I never dreamed it would get so much worse, so quickly. Every day I am amazed by how much pain a body can endure. Every month that passes I can feel this disease taking a stronger hold on my body. Pain I thought was unendurable a month ago is nothing compared with what I feel today, and I have little hope that I won’t say the same thing in another month.
Unfortunately, severe pain is only one of the problems a person living with CRPS faces. The pain I deal with is constantly changing and difficult to explain. I think of it as three kinds of pain: the first kind is the surface level pain, the intense pain I feel from sometimes even the lightest touch, especially if it is unexpected. Desensitization has helped me with this but I am still in horrible pain if someone touches my arm (for example, if I have not had a chance to mentally prepare for it). This pain is why clothing is a constant hassle for me, which I I’ll explain more thoroughly later.
The second kind of pain is the deep burning, throbbing, pulsing, aching pain in muscles or joints. This is the pain that is particularly hard to deal with due to its intensity and its constant presence. The strange part is that now that this disease has spread to all four limbs, the most painful areas are constantly changing. One minute my right knee is in excruciating pain, then suddenly the right knee will continue to hurt but the left knee is unbearable. I think off it as, “what part of my body is screaming the loudest,” that’s what it feels like. Many spots on my body will be throbbing, but they scream at different volumes. Sadly, even though several may be “louder,” a great deal of my body is always :screaming.”
The third kind of pain are the surprises: the sudden sharp pain in top inside of my leg when I go to turn, the pop in my shoulder if I move wrong, my knee ”blowing up” mid-step. This pain is difficult because I never know when it will happen or what will trigger it. The difficulties I face with sleep are multifaceted. People with this disease require a great deal of sleep to function. Most people with severe CRPS require a MINIMUM of 16+ hours of sleep. If we are recovering from an illness, a fall, or a day of too much activity our body can demand 20+ hours of sleep for several days to recover. On average I usually go to sleep between 10-11 pm and sleep until 6 pm most days. However, to further complicate the issue, pain wakes me up at least every 2 hours. Many days I open my eyes to see the clock at least once every hour. This means that although I am spending so much time in bed I am rarely getting any REM sleep which is what your body needs to function properly.
Sometimes I go through periods of time where although I am so exhausted and I can barely keep my eyes open, my body simply refuses to allow me the sleep I so desperately need. On the flip side, if I get a cold or the flu it usually lasts longer and then is followed by at least 1 week where I spend almost no time out of my bed. To top off the sleep problems, the narcotics I am forced to take in order to survive cause very vivid dreams, often very horrifying nightmares.
Another symptom I live with that is very common for people with CRPS is extreme sensitivity to touch and loud, unexpected noises. Even the lightest touch to an affected area of my body causes extreme pain. Many people with CRPS cannot handle any touch at all on their affected areas. Even clothing and shoes cause pain. Although I worked very hard on desensitization (a process designed to help build up a tolerance for touch) I still suffer from burning pain at any unexpected touch to certain areas. Clothing has become a battle in and of itself. Because my shoulders and collarbones are particularly sensitive, wearing a bra is excruciating for me. My wardrobe consists of only the softest materials without scratchy seams. With the exception of soft leggings (which are one of the few things that bring me comfort) I can not stand to wear clothing that is fitted. Because I have difficulty picking up my feet high enough to not stumble I prefer to wear extremely light shoes or boots that give me additional ankle support.
Complicating things further, my feet are especially tender so I usually wear several pairs of padded insoles in my shoes to provide additional cushioning. To put it lightly, getting dressed is a complicated endeavor for me, without even going into the exhaustion of showering and washing my hair. CRPS is a disease primarily effecting the nervous system. A component of the illness is a small disconnect between the brain sending a command, and the bodies ability to receive and perceive the message. This means that I often have a hard time understanding what my body is telling me and my body has a delayed response time in following the orders my brain gives it.
For example: I often don’t realize I need to urinate before I have to go NOW! I rarely realize if I am hungry and because I spend so much time sleeping I have a difficult time eating regularly. My body has a difficult time regulating its temperature. I get terrible hot flashes that make me feel as if my skin is burning. Once they start, it can take hours to go away. When I’m really hot like that, no position is comfortable and I feel like I want to climb out of my skin. On the flip side, if I get overly chilled I am in unbearable pain. My finger’s ache if I try to move them and I feel like every joint is burning with pain.
I live with the constant worry that because I am always in such great physical pain, how would I ever know if something new was wrong. I frequently have awful stomach pains so how would I know if I was having an appendicitis? Because I experience extreme pain from light touch how would I know if I had broken a bone? The McGill pain index rates the pain of CRPS as significantly greater than that of a broken bone. I frequently fall due to imbalance, weakness, pain and fatigue. I tend to bump into things often. My ankles easy twist, my knees often give out.
My pain level’s make it difficult dealing with people. I have a difficult time explaining myself. I feel like I have to say far more than I should to express a point. My mom says I have to give the book version, that I can’t shorten my explanations to movie length. I constantly feel frustrated with my inability to adequately express myself, especially because this was one of my greatest talents and the reason for most of my professional success in my old life. Also, because the problems I deal with are so extreme, I have a difficult time relating to other people, especially those my age. I find it infuriating listening to a healthy person complain about their weight when they have the ability to go out and exercise while I cannot. I don’t want to hear complaints about their boss or co-workers because I’d do anything to be able to work again. When someone complains to me about some small ache or pain I cannot muster up sympathy, as what I am forced to live with through no fault of my own is so great. This only further alienates me.
On the emotional side, the most difficult thing I have had to deal with is all of the things I have lost to this disease. It began with the loss of my control over my own body. Prior to August of 2008 I had tried to take very good care of myself. I tried very hard to eat right, I did yoga a few times a week and regularly used the elliptical machine and recumbent bike in my gym. I miss yoga more than most things but with my limited arm mobility it is out of the question. Then I couldn’t wear certain clothes because the seams or the fabric hurt my skin. I could no longer wear high heels because my balance was off. I know this sounds like a silly thing to complain about, but I LIVED in heels. They made me feel sexy and professional. When I had to take leave from my job- a job I had worked HARD to succeed in, a job that had been my identity, the source of my pride in myself, it was an enormous loss for me.
Losing the ability to take care of myself financially after having at least one job for the vast majority of my life, since the day I turned fourteen (and legal to work) was a severe blow to my pride. My sense of self, my self-worth, my very identity was so tied to my professional success that I was at a loss as to who I was without my career. I thought that was as low as I was going to go. I was going to use that time to get better and come back even better, but then things got so much worse.
When the disease spread down my leg my ability to take care of myself went steeply downhill. Also, because I was always so afraid I would fall or otherwise hurt myself and cause damage to the rest of my body I had a hard time going out. Up until then the only advantage was that I didn’t LOOK different. When I started to need a cane to get around I lost that, and with it a great deal of vanity. Men don’t look at a woman the same way when she’s using a cane. At this point my friend’s started disappearing. They couldn’t understand why I was so different and no one made the effort to research my disease and try to understand. In dealing with rude, arrogant nurses and other medical professionals I became a “victim.” I was no longer a professional woman whose opinions were valued. I was a disabled girl who was at their mercy.
In February of this year I had a severe fall that has drastically decreased my mobility. My knees took the brunt of the blow. Since then I am lucky to get out of the house once a week. I cannot walk any more than across my apartment without my cane. I spend the vast majority of my time in bed or resting. I haven’t been able to deep clean my house in years. Now I am barely able to use my light Swiffer vacuum to clean up. Doing the dishes or changing my sheets leaves me exhausted, shaking and in overwhelming pain. I need help just to do my laundry. The one thing I have now is hope. After my car accident I no longer had any. A year in I had already tried most of the treatment options available, so my doctor’s gave up and just tried to “manage” my pain with increasingly higher doses of narcotics.
Finally I found a doctor who gave me the one thing I so desperately needed in order to keep moving forward: hope for relief. They decided my condition had deteriorated to the point where it was time to take more drastic measures. First they had me try out a device called a spinal stem stimulator. Sadly, it did not help me. My next option is to try a pain pump (more on that to come). This disease isn’t something I would wish on my very worst enemy. Before all this I wished for the super power to be able to fly. Now I wish for the ability to show people what my body feels like by touching their hand. This way people would really UNDERSTAND and I wouldn’t have to face the constant humiliation of trying to explain something I hate admitting I have. This is my life now. I fight my battle’s everyday and I hope with all my heart it’s making me stronger, even while my body weakens.
Jennifer J
Minnesota
Submitted 10-27-2012
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
