RSD aka The Suicide Disease
November is RSD/CRPS awareness month and I really wanted to have this done and up by the first but life happens. It's not sexy or fun so writing this is more work then fun so I have been procrastinating, my favorite hobby and I am very good at it. Today has been my worst day so far with a flare up that has been unrelenting, typically it comes in waves and goes away but today it's been constant. I feel obligated to get this done so I am lying in bed with 12 pillows trying to find a way to get this done with as little pain as possible but fare warning I am several Percocet's and muscle relaxers in so it may wander a little. Back on task, November is RSD/CRPS awareness month and the hope is that by educating people, bringing this into public awareness maybe we can find a cure or at least help others that may be suffering from this but just don't know it.
RSD (Reflex Sympathetic Dystrophy) also known as CRPS (Complex Regional Pain Syndrome) is a progressive disease of the Autonomic Nervous System and considered a CNS disease similar to MS. How exactly one person over another get RSD is not known but some studies show that high doses of Vitamin C before and after surgery may help prevent you from getting it. So how do you get RSD? Well that's complicated since they are not exactly sure but in simple terms it begins with an injury or surgery that causes pain then your CNS over reacts to the pain but it can be something as simple as a spider bite or stubbing your toe. The first case of RSD was noted during the civil war which I find alarming as a patient because there doesn't seem to be anymore known today then they knew then, frustrating. RSD can be disabling, not for everyone some people can go on and live fairly normal lives while others can have it spread.
What does RSD do? It is extremely painful, I thought giving birth to a 10 lb baby was unpleasant in comparison I'd rather give birth then this. RSD causes swelling in the affected limb, affects blood flow, causes severe skin sensivity, loss of mobility, atrophy and softening of bones so although it starts in your brain it does have actual physical effects. Over time the pain can become independent which from what I know in simple explanation is it begins to get a life of its own. At that point the chances of remission are dramatically reduced so it is best to start treatment within the first 3 months of getting RSD which honestly is kind of hard to do since it can take months before you even find a doctor that even begins to look into this possibility. Most of the doctors I saw and still see are not familiar with RSD so getting a diagnosis isn't very easy.
How do they diagnose RSD? I am not an expert on this so all I can do is tell you how I was diagnosed. I went to a physio therapist to get a cortisone shot and a nerve conduction test. When she went to give me the lidoderm shot I screamed from pain just from the spray and she stopped immediately. My arm turned blue and before I knew it she was talking to her reception desk trying to find time to see me that afternoon, she was in a hurry told me to come back at 4. We discussed RSD and she set me up for several tests within weeks and had me in front of a specialist within a matter of 3 weeks because my RSD started in July and now it is the end of November so my 3 months were up.
Why aka The Suicide Disease:
RSD patients live everyday in severe pain with no hope of ever getting better in fact some patients will continue to get worst. The options are limited and the prognosis is dim. You feel trapped in your own body and eventually you lose everything that use to be. The pain is nothing like you have ever encountered and it is unrelentless, sleep becomes impossible and going out becomes problematic so you begin to lose friends and become isolated so the suicide rate of RSD patients is extremely high.
Symptoms:
Pain, extreme pain that is out of proportion to the injury
Burning, as in your skin is on fire or cold burning similar to when I was a kid playing in the snow and putting your hand under hot water burning
Stabbing
Spasams that feel like the bones are being ground or breaking
Dull aching
Sharp
Painful pins and needles
Neuropatic itch, histamine levels rise causing severe itching that is painful and you itch until you bleed even leaving scars
Deep
Alldonia, skin sensitivity which in my case is extreme pain to touch. A shower can feel like razor blades on my skin
Swelling of the affected area when it is extremely swollen my skin hurts from the pulling
Changes in skin color from blue to red
Temp difference in affected limb
Muscle weakness
Loss of range of motion
Brittle thin nails
Shiny, thinning skin
Tests:
3 Phase Bone Scan this doesn't always show uptake but in my case it did
MRI to see if there is actual nerve damage (there are 2 types of RSD)
Tests to rule out other causes (lupus, septic arthritus and other stuff I can't remember)
Taking temp of affected and non affected limb to verify temp difference
Nerve blocks
I did several nerve blocks that only worked for a few hours followed by a spinal cord stimulator trial that did not work which I believe failed becuase the pain had already become independent. Since July of 2011 the RSD spread from my left shoulder to my hand and scapula, by December it was in my right shoulder and today it is in my entire upper body including my face and more recently it has spread to my left leg. My doctor says I am just lucky, insert sarcasam and why is it traveling who knows but some people will get RSD in just a finger and it never goes any further then that.
I have other symptoms that have progressed as the disease has whether they are RSD sypmtoms or just 'complications' caused by RSD I don't know. Most recently I have started to have dystonia in my affected limbs which is painful and causes involountary movement and twisiting of the limb. I thought it was a muscle issue but my doctor said it was a nerve issue, that my nerves are not working right and the signals are damaged. I also now have cataracts that are causing vision issues that after some research I see this is not uncommon in other people with this disease. The RSD patient's body is living under extreme conditions so I think it is reasonable to assume it will eventually affect or cause other health issues.
Other Symptoms/Secondary Sypmtoms:
Severe pain spikes causes my heart rate to spike causing issues with breathing and dizziness
Dental/teeth issues
Bone loss
Changes in vision
Depression
PTSD
Anxiety
Insomnia
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Who Gets RSD
More typical in Women 35 to 50
Anyone can get RSD, you can get RSD
In 2012 my doctor thought I would lose my arm because it was always very blue and nothing was working luckily I did not lose my arm. How did I save my are, I have no clue maybe I am lucky. I started my blog to save my life because I was ready to quit, I had lost all hope and getting up in the morning was just becoming too hard. I have always been a strong person and never ran from a fight, I lost her and writing this blog helped me find her again. I push myself to get up, to walk on my treadmill most days and to find something to be grateful for no matter how small is it easy? Hell no, it is not easy I am writing this is in severe pain, pain so bad that I have to lie in bed with pillows propping my arms so I can type and tomorrow I will wake up and the day will be full of pain because everyday is full of pain. I don't even remember what it was like to wake up and feel good. The scariest part of that is that I know I will never know what that feels like again but I am still here, still fighting and tryin to find my je de vivre.