Got Chronic Regional Pain Syndrome (CRPS)? Me too…
If you never have heard of CRPS, then read on to see to see if this horrible disease can effect you.
Each day I suffer from chronic, body wide pain which impacts my daily functioning and movement. The two chronic pain syndromes I suffer from are CRPS (Chronic Regional Pain Syndrome) and AS ( Ankylosing Spondylitis).
CRPS sometimes called RSD (Reflex Sympathetic Dystrophy) is also known as the “suicide disease”.
Here are some of the reasons why:
- People suffering from it can’t handle being in their own bodies anymore
- Opiate Pain medicine gives limited relief or makes it worse
- They often lose hope
- Their doctor and a team of others doctors can’t help them (I’ve seen over 2 dozen during my struggle)
- Doctors aren’t properly trained to diagnose it
- Most don’t have the tools to properly diagnose it (thermography).
Unfortunately, I have talked with multiple doctors who are unfamiliar with this disease.
And since there is no cure and opiates can make it worse, the psychological effects are devastating to deal with.
Imagine, facing this in your life…
Waking up and for no reason, your limb swells up giving you the most intense burning pain imaginable. What on earth do you do? Look at my leg below. It blew up out of nowhere.
How scary is that? Having an unknown ailment with some of the worst recorded pain (in relation to the pain scale), with no ability to obtain relief through your doctor.
Wow, sounds exciting. Where’s the sign up?
Imagine getting no relief even with heavy pain killers, muscle relaxers, biologic and nerve medicine.
And, with no end in sight.
What? This horrible nightmare can’t be real.
It’s all too real for people with CRPS / RSD. And it was for me. The intense level of pain and burning has been described as “hell on earth”. Take a look at the burning redness in my leg and swelling in my foot vs the other side.
A decade of my life has been lost to suffering from chronic pain. The pain has been so severe I have been forced to utilize a cane to walk at times.
I’ve had well over 30 surgical procedures requiring sedation in an attempt to address the pain in my arms, back, leg, neck and hips.
From my experience, if I didn’t exercise or remain active and keep my body moving, EVERYTHING got worse….
Much, much worse.
If you are hurting from chronic pain, chances are your body may in time, hurt progressively worse. I’m not being negative, I’m just being real.
Especially if you’re moving very little and not exercising. Additionally, the chances for hurting more increase significantly when overweight.
You can call it aging, “wear and tear”, or disease. The fact is, whatever your health status, you must maintain and give your body support at the highest level possible. If you fail to do that, you are accellerating the wear and tear, aging and disease potential in your body.
Do you think eating whatever you feel like having and not exercise is giving your body support?
Ah, no, I don’t think so.
Got Ankylosing Spondylitis?
AS can cause inflammation through the spine, hips, and neck ultimately resulting in fusion and immobility.
I know so many chronic pain patients that don’t care what they eat and their bodies pay for it dearly. These people have no idea because they don’t understand how good nutrition can impact their overall functioning or refuse to give it a chance.
Instead they sometimes adopt a belief that this is just how it is. I almost accepted this at one point in my life as well.
And believe me, when I was suffering daily without an end in sight, I started to believe this is just how it was going to be (being in major pain).
I believe if more chronic pain patients would pay attention to their nutrition and not neglect exercise, they could possibly make themselves feelso much better as it did in my case.
A commitment to consistent nutrition and exercise over an extended period of time would most likely yield the best results.
Move It or Lose It
There is a reason that saying has hung around for so long. Because it is true.
In my 30’s and into my 40’s I sometimes resorted to a cane and needed heavy opiate medications just to get through the workday. Sure, some days I couldn’t walk or make it down stairs, but I pushed on through.
Fighting 10+ years of debilitating pain from CRPS as well as (AS) Ankylosing Spondylitis, I can honestly say, I’ll now do anything possible to keep moving.
And I’ll never stop!
Don’t let your limitations define you!
CRPS affected my hand and arm for 6.5 years, leaving me with a claw hand. After not being able to open it or use it, I had to have tendons transferred to restore function to my fingers. This was the second attempt to fix my hand and get my fingers back.
Recent Downward Health Spiral
Just two years ago, I had an accident and tore both rotator cuffs. After 6 months I still had significant pain and a very limited range of motion.
After a year of agony, and my own therapy, I was finally able to return to the gym which has resulted in a significant decrease in pain and almost full range of motion.
During that year, it was almost impossible to work out. I had constant pain in both shoulders, which led me to feel like garbage which led me to eat like garbage.I was in too much pain to exercise so, it just happened. I took off a little time and next thing you know, I am out for a year. I went up 30 lbs and didn’t really notice it till I was up around a 20 lb gain.
Here I was a trainer for 25+ years and this small accident sidelined me. Down into a depression hole I went. I was pushing myself to physical therapy, and doing my best to rehab my shoulders, but I was miserable.
My body continued to hurt all over, but EVEN worse. How could I be in such pain from moving and exercising so little.
Every move I made hurt, it felt like I had the flu constantly.
I couldn’t concentrate on anything. All I could do was sleep. I didn’t want to see or talk to anyone.
Dark, negative and grim thoughts flooded my mind.
Finally after hitting the bottom of this downward health, pain and depression spiral, and realizing I was feeding myself BS excuses, I was able to pull up out of it and commit to exercising again.
Was it easy, no way. It definitely sucked at first, but I made it out alive.
I thank God, my loved ones, and exercise that I was able to escape the dark hole of depression and pain that once kept me captive on and off for years ever since beginning my struggle with chronic pain.
If you are dealing chronic pain, darkness and or depression that you cannot shake, and you aren’t exercising, then what are you waiting for?
Really. Get your butt in gear!
I know how tough it is to even move at first, if you are hurting or depressed, but you’ve got to make exercise it a MUST.
I am not saying exercise is the be-all end-all answer. But if you have chronic pain like I have, do your best to make healthy deposits into your life account.
Yes, your life account. Get out, meet with others, exercise, get with a group, plan events with people you like and enjoy. Eat healthy foods, reduce toxins. Just do some good stuff that makes you happy and brings you CLOSER towards your goal!
What a Pain Warrior and Champion!
Since this post is mainly about chronic pain and CRPS, I just want mention fellow pain warrior and champion client of mine. Her name is Kayla Hansen and she has one of the worse documented CRPS / RSD cases on earth.
She has physical manifestations of blistering all over her body from the burning pain of CRPS under her skin. What we feel with CRPS, you can see on her body as it is manifested into physical and observable symptoms.
She has such a champion spirit to want to work with me and overcome this disease. Whenever I work with her, she never complains one bit.
Unfortunately right now she is still suffering dearly. She has tried every know treatment there is for CRPS without any success.
She has been to countless doctors. Kayla needs lots of continued prayers and a miracle.
Please keep her in yours prayers!
Remission Is Possible
Chronic Regional Pain Syndrome (CRPS) is one of the most horrible, torturing and under noticed diseases on this earth.
Anyone can get it.
I got it from a minor car accident after previously having nerve damage to my arm. The CRPS then traveled to my shoulders and legs.
It can be caused by a injury, (even rolling your ankle), damage to a distal limb, nerve injury, surgery, or even a small incision.
Everyone is different, so your results on an optimal exercise and nutrition program will be different. The fact is when you optimize your exercise and nutrition properly you are bound to start feeling better, healthier and stronger. Usually for most..
Sometimes, it is not the case with CRPS, the body can interpret even small exercise as a trauma and send your body into a major pain flare up.
Through the years of working around it, I found that I benefit from small amounts of exercise. Even then, sometimes I overshoot my goal and push it too hard, which causes me to have a pain flare up which leaves me hurt for days or weeks.
Remission is possible like in my case, but I must be careful of doing many activities.
My level of fitness right now is no where near where it once was, but no longer compare myself to my peak performance time (it is depressing). I just do my best to keep moving.
I hope this post can inspire some of you to keep moving or simply be thankful for your health and what you have in your life.
I am here for you and I want to help you attain your goals.
You are worth it and you owe it to yourself.
So, please do not hesitate to speak with me if you ever have questions.
Have a powerful day!
