Donovan from the USA has shared his personal CRPS journey with us and he believes that even though living with this condition is extremely tough, you can live and gain support from those around you. Thank You Donovan for allowing us to share your personal Complex Regional Pain Syndrome journey.
“I look in the mirror hanging on the wall and what do I see? A 6’2” fairly large 260 pound broad shouldered man looking back at me. One may ask, what is the point of such a statement? Well as with many who suffer the same fate as I, CRPS is an invisible mask even the sufferer sometimes finds difficult to see.
What is CRPS? Well in brief, it is a nerve disorder which uncontrollably causes tremendous pain. At times, it is so severe a person’s life is halted completely. Often comments are made by people that it is all in your head and there is nothing wrong with you. This is the mask that is difficult to see, unless you suffer this disease or live with someone who does.
Even though we live with this pain daily, it is sometimes hard for our families to understand because one day you are completely incapacitated crying with pain and a few days later you are doing things you can tolerate.
Since May 20, 1986 from an offshore accident I have had this disease CRPS, yes I remember the date cause it’s the day my life forever changed. Very little was known then about this disease even with it being documented since the Civil War, and was not recognized like today.
I saw numerous doctors being called every name in the medical field most of the time having to look it up in a medical dictionary; it all boiled down to this (AKA) Hypochondriac. Two years of hell trying to make them understand it was real sometimes even questioning my own sanity.
Finally, they saw a very bad flare up; one minute in the doctor’s office talking and in front of him for no reason other than light touch of grabbing my hand for an examination, my hand swelled and turned purple and red like grapes and strawberries from blood restriction then the excruciating pain followed. He finally realized it was real. Then numerous doctors began poking and prodding me trying to find out if they could control this monster that lives in me.
Sixteen surgeries, a sympathectomy, countless nerve blocks, experimenting with different meds, compounded meds, shots, acupuncture, tens units and therapy you name it I’ve tried it. Now years later they say most of the procedures they put me through should not have been done, they realized that the more they cut on me and messed with the nerves it only irritated the CRPS and made it worse. Well it’s a little late now the damage is done.
It was confined to me right arm until 2006, then my entire right side started hurting it got worse. Doctors here wanted to do more injections directly on my spine with a new procedure using a MRI to see the nerves. I tried them 6 different times on different nerves, but always the same outcome – they didn’t work.
I went from a 6’2” 265 lb man to a 400 lb balloon from the steroids. I lost the weight, then they wanted to implant a stimulator on my spine, but they couldn’t guarantee what they would do would work. After twenty years of hope and maybes only to wake up after each procedure worse off than before made me tired of maybes.
So my wife found a CRPS specialist who had many years of experience with this disease in Houston, Texas. He checked me out and said the disease had travelled all the way to my toes on my right side. So it was now in my arm and leg. It was rare but it had been documented a few times, and he went on to say the damage that was done years ago was irreversible.
My only option beside the meds was to implant two stimulators one for my arm and the other for the rest of my right side on my spine like the doctors back home wanted to do, but he didn’t recommend it. I was in the latter stages of the disease and the cuts to implant the devises would only make it worst.
My only option now is medication, shots and a mouth piece to wear at night so I don’t break anymore teeth in my sleep from clinching down so hard from the pain. Yes in my sleep, who would have thought my body could still feel the pain. Well I had a hernia that had to be repaired and they said don’t worry you will be ok, when I woke from the surgery my stomach was on fire; I thought dummy they just cut you it will burn. But it never quit. CRPS had taken over that area and now it’s consumed my entire right side.
Long ago before my visit to Houston, I had a pain management doctors who had me so medicated my wife had to continuously call me and remind me to take care of things we needed done and so forth. I was a zombie. I wasn’t in as much pain but didn’t have a life. I spent most of the time sleeping. Four years of my life is an edited movie with bits and pieces missing to me?
I woke up one morning and told my wife I couldn’t live like this anymore. I knew I was addicted to pain medication and stopped cold turkey. Well I started to have chills and withdrawal symptoms from the narcotics. Although I had the mindset that I was going to beat this, I had to start taking medications again then slowly weaning myself off.
Then I saw another pain management specialist who was very good. I stayed with him for a long time then he moved to another state.
I was tired of going through the process of seeing new specialists who in the beginning go through all the same tests as the other ones do, only to see the same results. Basically, I had to teach them sad as it may sound. Now I see only one doctor. He is our family doctor and knows my case very well. Matter of fact, the doctor saw a flare up first hand.
Our youngest son had an ingrown toe nail and he needed to inject the toe with deadening medication. I was the only one strong enough to hold his foot down, well as he injected the toe I got weak and he said oh my God you need to sit down. My hand and arm looked like a dead person’s skin and the pain was excruciating. He had to end up giving me an injection to ease the pain. He is always researching for new procedures that would be safe for me to try.
At first he had to fight with me, because I hated to take medication; even in as much pain as I was in. I didn’t want to end up like before, afraid one day I would overdose. I only took it with very bad flare ups. He finally made me understand I had to take it on a regular regiment so when there was a very bad flare up the meds were already in my system and could work better. Also because my body was in turmoil, I lost 75lbs in two and a half months from fatigue.
So now that’s what I do, and for very bad flare ups I take extra ones, (only for bad flare ups). I also have to take shots; I try to only take them when I see the meds alone aren’t working. Every so often we have to change the meds. My body gets use to the drug and it doesn’t work as well. It’s a battle within a battle, but it’s the life I have to live now, I just thank God I have another day with my family.
I can’t. I hurt, these are not words people want to hear when they need or want you for whatever reason. I was a welder by trade and tried returning to work on countless occasions only to be bed ridden for days at a time after trying. I once had a torch in my right hand and my hand gave out the torch fell into my left hand and caused third degree burns on 75% of my hand.
I'm glad I had gloves on and I didn’t wear my wedding ring when I was welding, that’s when I final gave in. Other trades not as strenuous were just as bad. I even went to college but missed so much school I couldn’t continue.
I am totally disabled. I grew up in South Louisiana Cajun Country on a farm, in the woods, and on the Bayous where you work hard and play harder. I love the outdoors hunting and fishing were my hobbies. Now I can no longer hunt, the slightest recoil from a gun flares the monster up, not to mention the cold weather which I truly loved at one time.
Fishing is very limited also, I can’t go alone and when I go I’m not very good company. I fish awhile then spend most of the time laying on the back deck. It’s hard to swallow the words ‘I Can’t’ but I have no choice now.
People can’t see the pain you live with. It isn’t as though there is a missing limb or deforming scars that are visible to the naked eye. They see what looks like a strong healthy body like theirs, “Hence the mask that shields our body”.
We as sufferers have trouble peaking behind the mask, we see the same image as everyone else a body with no deformities besides maybe a scar from a childhood accident. But yet, inside the pain is constant and at times unbearable that’s when it shows its ugly head and once again, ‘LIFE IS HALTED’.
Mentally, I am constantly on an emotional roller coaster. When I feel good I dream of the job I once enjoyed or the hobbies that were ruthlessly taken away, Sure I can still try to live like before this disease, but the cost that follows is entirely too high. One day of pleasure equals 3 to 5 days of excruciating pain.
I don’t want sympathy just understanding, I am no longer the man I once was, and don’t judge me, but instead walk a mile in my shoes before making hurtful remarks.
There are no gauges to monitor pain, the only gauge we have is what is your pain level 1 to 10, mine is never less than a 5, 24\7. Unless you’re the one who is suffering, understanding is not possible.
Am I crazy? No. Am I an emotional wreck? Yes. It is only human for us to question. First denial, I can beat this and push forward only to have this disease of constant pain rears its ugly head once again. Then anger, why me? What have I done to deserve this, it’s not fair and then anyone who happens by is lashed at.
My family suffers too, they see me in this state and can’t do anything to help, but take the verbal outrage I throw at them sometimes with a smile, I am very blessed to have a family that knows this isn’t my normal nature and stand by me no matter what. People ask me how I do it. You always have a smile; I never show the pain, if only they knew it is killing me inside.
One can understand our families’ frustration. They ride the coaster and endure this disease with us except for the pain. I’ve been fighting this illness for 27 years. It has not been an easy road for me or my family, there weren’t any networks and support groups like they have now.
I wrote this before we had home computers I had no one to talk to whom really understood what I was going through, no one with this disease that is. Sure I have always had my wife and family to talk to but they can’t feel the pain they have limited understanding.
In my opinion God is the only reason someone who suffers this condition or any other with chronic pain can look to the future bleak as it may be. For His love will one day take this pain away!!
People say why does God let this happen? Well think of this God gave us free will, Adam and Eve bit the apple which unleashed the devil to roam this earth and he is always taunting us. Why do you think God sent his only son to die for us? Sure there are miracles, but the more the evil one knows he can’t shake our faith, the more he tries to plague us with tragedy and pain to try and weaken our soul.
To all you young people and those who are just entering this unfortunate turmoil with this disease or any other Chronic Pain don’t lose hope, there is a life with this monster you just have to first give it to God and live as normal as you can. I’m living proof it can be done, don’t give up.
Now I’m not saying it will be easy, because it’s not. Nothing worth fighting for or against in life is easy. I will my pain to God for the suffering of others who may be in a worse state than me, that’s right worst state. I can’t be naive to think my illness is worse than anything else out there, because it isn’t. Also I will my pain to God for my family members who put up with this mask day in and day out, and never falter in the love they have for me, “They are my Rock”.
You just have to find what works for you, something that makes you feel like you are contributing in life. It can be anything cleaning house if you are able, talking to someone maybe senior citizens, you can learn a lot from them if you listen. The point is there is something for everyone, you have to look.
I dedicate this short story to my wonderful wife she has stood by my side in the best of times and the worst, she works hard day in and day out to provide for us. If ever there was an angel who walked this earth I would say without reserve it is her. No matter what is thrown at us she always finds a way to keep us intact. God has blessed me in this aspect, even with all I go through.
I know there is an angel who stands with me; MY WIFE.
If you have been affected in any way by the personal stories or details on the Burning Nights CRPS Support website, please contact us.
November is CRPS awareness month and we are looking for more stories like Jack’s CRPS story to share with you on our website, to show that you’re not alone either living with this horrific chronic condition or that you live or love someone with CRPS.
If you’d like to share your CRPS story with us, please get in touch with your story (maximum 1000-1250 words) and a couple of photos that we can share to show how people have been affected by Complex Regional Pain Syndrome. Visit How to share your personal CRPS stories to find out more. We’re here to support you!
If you would like to read some other stories of living with CRPS, here are a few for you take a look at: