I thought I would compile a list of some things that CRPS is/does. This is not a complete list just things I have been learning along the way so far. Also some things to hopefully help those that don’t understand it.
CRPS stands for complex regional pain syndrome, formerly known as RSD, reflex sympathetic nerve dystrophy. My mom calls it CRaPS, but that is how she can remember it, and she not wrong about it! It is one of the most misdiagnosed diseases. Even though they say it is a rare disease there are actually a lot of people that are fighting this ugly thing. There is just limited research on it, not many doctors know anything about it. Along with the misdiagnose that also brings a lot of people not being treated correctly. It is also called the invisible disease since it’s hard to see the severity of the pain because you are standing up fine.
It is the highest element on the McGill pain scale. Above kidney stones, labor, and amputation. Having been through the first two I can vouch for those ones! This disease comes from either an injury (trauma or fall) which is CRPS-I or a known nerve injury which is CRPS-II.
Not only is there no specific test to see if you develop this but also there is no one-size treatment. There is no cure as of now. Pain that either prolongs or worsens after the normal healing time is a good indication among others things. Discoloration, temperature change, sensitivity, and edema past healing time help determine it too.
It usually effects a limb first but then can spread to other areas including internal organs. No one knows the root cause for why a person gets this disease. Nor do they know what exact symptoms each person will get. I was told early on no one case is like another. With all of this unknown it’s no wonder some go years before being treated correctly. I just couldn’t imagine! I was diagnosed and treated very fast. Thank God for that!!
As I said some symptoms are skin discoloration and temperature. My foot then leg turned a deep blueish-purple color. It would burn, like little (well not really little) electric shocks plus burning going through my foot and/or leg. The temperature of that foot was/is always MUCH colder than my other one. For me I don’t deal well with cold. I have to keep it warm. Since then bone crushing pain has been added to the shocks. It’s deep into the bone. Hard to explain. The discoloration comes and goes now (before it would be more consistent).
Sensitivity is another big thing I deal with. Even the lightest touch can make the pain surge. I’m talking about even the wind blowing by. Sounds bother it too. I have been able to lessen this by doing different sensitivity exercises. Rub it with different textures, start out light touch then go a little harder. I don’t have to do this as much now. If it gets touchy just a little rubbing with a soft sock helps clam it down some.
Edema and atrophy are another set of hurdles. I deal with both. Through the surgeries and everything my leg was skin and bone. It got so small. The doctor wasn’t even sure it would come back. I did get some muscle built but I don’t think it will ever be what it used to be. To get there it takes a lot of hard work. It’s not as easy as normal building muscle. Edema comes and goes. Worse when I’m flaring up. Compression socks are great…if you can handle the touching of them. Elevating is huge for this. Of course I can’t ice, cold makes it worse.
This disease doesn’t stop at just these things. It effects your whole body. Depression and anxiety is huge! Another name they call it is the suicide disease. With the lack of knowledge, you feel alone. It’s not easy getting good treatments or even finding doctors who believe you. Your life has changed, drastically changed. You no longer can do what you could. A lot of isolation occurs.
Between Medications and/or the disease, weight gain, short term memory loss, brain fog, bouts of anger, mood swings, insomnia, and headaches are a few more secondary symptoms. Spending so much time researching on it as doctors are not as helpful. Normal treatment just doesn’t cut it.
There are many co-morbid conditions that stem from CRPS as well. These go unrecognized when treating for this disease which makes feeling better even harder. One must find someone who is able to connect the dots with this to understand it more.
There are so many things that one would not even think about when saying you have an incurable nerve disease. I pray one day someone does find a cure for this ugliness but in the mean time I want to help draw awareness to it and possibly help someone who is struggling with it and needs someone to stand up for them. To help them fight.