Saturday, November 2, 2013

RSD/CRPS- Symptoms

Quick edit to Part I:  I accidentally left out one thing yesterday. CRPS can go full body, affecting from the top of the head to the bottom of the feet. My doctors and I assume this is a likely possibility for my future.

CRPS Awareness Month part II. And yes, there will be at least 5 "parts" to this, because it's a complex and rare disease. There are entire, huge, fantastic web sites that don't cover everything. I've chosen to cover what I'll be covering for several reasons: one is because I suspect some of my family read this blog and I know a few good meatspace (non-internet) friends do, and I want them to know these things. The second? CRPS is a rare, but underdiagnosed disorder. I want patients who are wondering to have another source of info, coming from a patient. Third? I have an atypical presentation of the rarest form of CRPS, so I want others to know it's not always textbook..


The symptoms of CRPS are so wide and varied, it's a bit insane. This is all due to the damage to the Sympathetic Nervous System. The first and foremost, though, is the obvious extreme pain. The vast majority of patients report burning pain specifically. In fact, every doctor I've worked with said the fastest way to spot a CRPS patient is that they'll walk into your office, sit down, and say something along the lines of, "I feel like I've been dipped in gasoline and lit on fire." I feel this type of pain, but not every day, and I did not feel much of it at first. My meds seem to keep it mostly under control, but when it crops up, it's mostly in my feet and lower legs. I have a suspicion that without all the lovely meds, it would be continuous and much more wide spread.

I've also personally noticed a wide variety of other types of pain. The most crippling variety I personally feel is the sensation that someone is breaking my bones over and over with a pickaxe. This was a non-stop issue until I began Sympathetic Nerve Blocks (more to come on those later in the month), now it rears it's head for a total of about 1-2 hours a day in varying intensities (mostly fairly mild comparatively) on an average day, upwards of all day in severe intensity when things get bad. This is the pain that worsens first, flares first, and gets the pissiest when I attempt to fully weight bear on the right side.

The most annoying type of pain I feel every day, and second most crippling, is the "itching". I call it itching sometimes because, at it's mildest, that's what it feels like to me. An intense itch, like the type you get when you're wearing uncomfortable cloth that's too rough against your skin. As soon as my legs get mad, be it cold, the texture of what I'm wearing, too much weight bearing, getting wet, a stiff breeze, a shift in barometric pressure, anything, that feeling intensifies. Next on the intensity scale for "itching" for me is pins and needles. Because there's nothing more fun than the sensation that someone lined all your clothes with ultra fine needles. Oh, wait, yeah there is- when it ramps up one more notch and feels like barbed wire instead.

Once I reach the point where all my clothes feel like barbed wire, shifting and grabbing at me with every step I take, I either switch to ultra soft fleece pants or switch to using my wheelchair. Or both. My mom can pinpoint exactly when I reach the barbed wire point just by watching me. She says I hunch in, grind my teeth, my eyes look sad and pissed, and I grab at the front of my pants legs when I'm standing still.

Considering the variety of pain types I feel, I'm sure other CRPS patients experience their own variety as well. No 2 CRPS patients are identical.

Also on the symptom list are the direct circulatory related issues. CRPS interrupts proper function of the SNS, which in turn interrupts the blood supply, skin growth, hair growth, nail growth, and temperature regulation. Portions of the body affected by CRPS will experience a wide range of issues. Skin will alternate between thinning and thickening in the beginning, though as the disease progresses, thinning is far more common. I no longer have, nor can have, calluses on my feet, and thus get blisters from well broken in shoes that I wear every day. My skin is extremely thin on my ankles and feet and portions of my lower legs- these ares will peel very easily. Hair on affected areas will grow erratically, growing quickly and thickly one day and sparsely and thinly the next. Nails behave in a similar fashion. Some people lose their hair and/or nails all together on affected areas. Bruising is also common. 

Random bruises on my legs:

Discoloration and swelling:

A wide variety of other issues can result from the damage the Sympathetic Nervous System. I'm not going to go into all of them, because the list can get a bit long, but the biggest one I deal with moderate tachycardia, or extremely rapid heart rate. The average healthy adult has a resting, but awake, heart rate of 60-80 beats per minute (bpm). My sleeping pulse? 90+ bpm. If I exercert myself physically, I can top out at 150 bpm. I now take meds 3 times day to control this as it creates the feeling of suffocating if it goes untreated. My doctors actually thought I had uncontrolled asthma for 8 years.

Next week, Part III will cover coping techniques. 

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