So I thought I would give you a glimpse into my world with Reflexive Sympathetic Dystrophy or as it's sometimes called, Complex Regional Pain Syndrome.
First off, let me tell you what happens to someone with RSD/CRPS.
The key symptom is prolonged pain that may be constant and, in some people, extremely uncomfortable or severe. The pain may feel like a burning or “pins and needles” sensation, or as if someone is squeezing the affected limb. The pain may spread to include the entire arm or leg, even though the precipitating injury might have been only to a finger or toe. Pain can sometimes even travel to the opposite extremity. There is often increased sensitivity in the affected area, such that even light touch or contact is painful (called allodynia).
People with CRPS also experience constant or intermittent changes in temperature, skin color, and swelling of the affected limb. This is due to abnormal microcirculation caused by damage to the nerves controlling blood flow and temperature. An affected arm or leg may feel warmer or cooler compared to the opposite limb. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red.
Other common features of CRPS include:
- changes in skin texture on the affected area; it may appear shiny and thin
- abnormal sweating pattern in the affected area or surrounding areas
- changes in nail and hair growth patterns
- stiffness in affected joints
- problems coordinating muscle movement, with decreased ability to move the affected body part, and
- abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the affected limb.
These are just the basic symptoms..the list is actually very long and overwhelming, but I think you get the picture.
A typical day for me varies depending on my symptoms. Sometimes they are closely tied to the weather, temperature, overuse of my ankle and foot, shoes that don't fit just right, socks that are too tight or too loose, fever, other illness, lack of sleep...and many times, I have a flare up for no reason at all. My ankle and foot suddenly swell up to the point of not being able to fit a shoe on it and I just have to wait it out. As you can see, there is no consistency or pattern. This makes it hard because I can be having an OK day and then suddenly be bed ridden.
I have a saint of a husband who not only does a lot of the household chores, he puts my socks and shoes on, shaves my legs (because he knows the amount of pressure that will hurt the least on my bad leg), he goes grocery shopping, he works around my sleep or lack of sleep, he does EVERYTHING in his power to make sure I am in the least amount of pain possible by doing things that most people take for granted. More than anything, he holds me and lets me cry it out when I can't hold it in anymore..and he reminds me that maybe the next hour wont hurt so bad.
I have pain medication. I have very strong pain meds. The problem with depending on them is that I don't want to be an addict. They make me tired, lethargic, itchy, nauseous, constipated, and they cause me to have very painful gallbladder attacks when I use them as often as prescribed. They also precipitate anxiety attacks and bouts of sadness, because they are depressants. None of the pain medications I have tried have ever taken my pain away. They just made me care less about it because I was drugged up. I have been asked to do a trial surgery where they implant a device along my spine that will send confusing pulses to my brain to try to override the pain signals. Sounds perfect right? Who doesn't want to opt for a surgery on their spinal cord? Apart from the fear that causes me, people who have RSD are at a much higher risk of it spreading to other limbs when they are further injured. (like surgery)
Sometimes, I feel like my life has become one great attempt to adapt. I have to use wheelchairs in stores or when I know I will need to walk for more than a few minutes. Do you have any idea how embarrassing that is for me? I see elderly people walking on their own two feet and yet I am forced to use a wheelchair. And because my disability isn't always obvious to the naked eye, I feel judged. People can't see the pain I am in..they don't know what it's like to feel like someone has dumped lighter fluid all down your leg and set it on fire. They don't know that every step feels like a knife is coming up through my bone.
I wouldn't want them to know that kind of pain. I just wish that people wouldn't assume that because I "look" normal, that I am just making it up.
Sometimes I feel like I hold in my own feelings and pain to keep from drawing attention to myself. I'm a big girl. This week alone, I was invited to an event where I am supposed to receive and award for volunteering in the community, but I wont go because I don't want to go in my wheelchair. I was asked to a dance with friends, but I wont go..because it's not fun to watch everyone else move around like they are weightless and have people coaxing me to dance because they don't know that I just can't do it. For 4 years in a row, I've missed an annual celebration with friends because it's held in the woods..and I can't hike anymore. I can't drive long distances because it hurts to stay in one position, so road trips are really hard. I can't run around with my niece like I dream of. I can't completely relax around pets and kids because I have to guard my leg, because if they brush up against it might make me cry in pain.
I don't know what my body will allow me to do until it's time to do it. I wont know if I will be too tired or need to sleep because RSD also attacks the limbic system, and that controls my sleeping patterns. Some nights I fall right asleep, and some nights I am awake all night...like tonight. Some nights I lay in bed and cry because I am in so much pain, and I know that my husband is asleep and I won't worry him with my tears.
Writing this is not only cathartic for me, I'm having a very tearful night, but I just need to get it out there. I've been living with this for almost four years and I still feel like I am answering the same questions, I am still explaining why I can't do something, and I am still feeling resentful when someone asks me to do things that I feel are obvious that I can't do. I know that sounds selfish, and maybe it is, but I need to say it.
Everyone always tells me I'm resilient and positive. And I like to think I am! Almost always. Having RSD is just one of those things that I haven't been able to be positive about. No matter how I try to look at it, I can't see anything but what it's cost me and my family. And I hate that.
It's rained for three days, I am in pain and hoping for sunshine and warmth. That's my hope. I also hope that sharing this with you has helped you understand something about me that I don't share with most people. My weak side.
One more thing, please ask me questions directly if you have them. I would rather just answer them then feel like you are speculating or guessing. The more you understand, the easier it is for me.
Here are some resources if you want to read more:
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