Trevor Fighting CRPS

Trevor was diagnosed with a rare, progressive neurological disorder called Complex Regional Pain Syndrome, or CRPS. Sometimes it’s called Causalgia or Reflex Sympathetic Dystrophy (RSD). Tragically, it’s also known as the “suicide disease” because so many sufferers choose to end their life to escape the constant, debilitating pain.


It’s hard to imagine the pain of childbirth unless you’ve gone through it; it’s even harder to imagine the pain of having a digit or limb severed. But on the McGill Pain Index, CRPS is scored higher than accidental amputation…coming in as literally the most painful condition or disease known to humankind.

 
Now imagine pain like that – all the time    CRPS - is simply just four letters not, really a name To put it simple it means "always in pain"

Complex regional pain syndrome (CRPS), also called reflex sympathetic dystrophy syndrome (RSD), is a chronic pain condition in which high levels of nerve impulses are sent to an affected site. 
Experts believe that CRPS occurs as a result of dysfunction in the central or peripheral nervous systems. 
CRPS is usually caused by injury to the soft tissue like the ankle, knee, wrist, elbow or a damaged nerve.







In 2018 Trevor was diagnosed with Complex Regional Pain Syndrome that started in the left wrist and then into both feet. It has spread into what doctors call full body since even effecting the nerves in his teeth. Trevor has had seizures that neurologist have blamed on pain flanks spiking, one of the hardest parts of his symptoms is not being able to regulate body temperature. Shivering cold on the inside but constantly sweating , the top layer of skin burning never being able to feel comfortable and always clammy.  Night sweats so bad clothes soaked through and having to change the bedding several times throughout a night.
His pain as “constantly burning, as if you were on fire with your muscles being torn and bones being crushed, pins and needles while being stabbed with shards of cold glass often hand feels like it was put into a running lawnmower. It continues 24/7 and it has no end”. 

Laying in bed all day, every day watching the seasons pass by, counting down the minutes has become his life.  High stimulus environments can too much for Trevor bright lights, loud noises could elevate the already unbearable pain and smells without warring bring on nausea.  Sleep is hard and if he does manage to get a couple of hours, he often wakes with higher pain levels for the rest of the day or week.

On a scale of 1 to 10 Trevor would rate his pain at a 8 or a 10 on the best of days during a flare when not a 5 to 6 with constant aches in bones and pressure headaches it never stops making his body into a "personal torture chamber" he says. He was prescribed a concoction of medications, but nothing really has worked. He was in and out of the hospital with uncontrollable pain surges that wreaked havoc on his body. 
Trevor has extreme fatigue and insomnia at the same time, he fights being nauseous and unable to eat. He fights extreme bouts of anxiety and depression dealing with his life being flipped upside down. All these issues leave him exhausted and not sure how much longer he can deal with CRPS.
A lot of the treatments that can help someone with CRPS are alternative treatments such as chiropractic care, massage therapy, Ketamine infusion treatments, NRCT, vitamins and supplements and many more that is not all covered  by OHIP  that we must cover ourselves.


 Complex Regional Pain Syndrome (CRPS) is a chronic pain condition that most often affects one or more limbs after an injury, beginning in one limb and eventually spreading to other areas of the body. It’s the most painful condition ever recorded. It is believed to be caused by damage or malfunction of the peripheral and central nervous systems. The cause is not definitively known and there is no cure.

CRPS sufferers describe “the worst pain ever inflicted on a human being,” “constant burning,” “bone crushing pain,” and have even called CRPS “the suicide disease.”




In layman’s terms, CRPS is a glitch in the nervous system that signals excruciating, debilitating pain to your brain for no apparent reason. CRPS can leave sufferers completely bedridden, paralyzed in pain and secluded from the world. Every case is different in terms of medications, surgeries, and therapies. Some people eventually find ways to manage their symptoms but still suffer with persistent pain every single day.

The standard pain scale is called the McGill pain scale, with pain ranging from 1 to 50. CRPS positions firmly at the top, above childbirth and amputation of a limb. In addition to being the most painful, CRPS also can last months or years, and in most cases pain is only reduced, never cured. 
Trevor says, “It is the worst thing I could imagine. This is possibly the most cruel and inhumane disease that can happen to anyone at any given moment. I would not wish it upon anyone. Unfortunately, there hasn’t been a lot of research done on this condition due to the complexity of the central nervous system. It is hard for people to understand.”

At home, we have exhausted the treatments that are available to us and those OHIP covers 6 low dose Ketamine infusions a year then it's $750 & up per treatment plus hotel travel etc. The low dose infusions do help in short stints but 2 plus treatments per month is needed, the Pain specialists have recommended for any possible long term relief or hopeful remission the high dose Ketamine infusions (coma therapy) due to the stage and how aggressive the disease is spreading.  Only a few are done a year in Canada and have a multi year wait list, we need to seeking treatments outside of Ontario and Canada.
Ketamine Infusions have been the only thing that has some promise Trevor can't wait years  for the high dose therapy that is needed but it can be done in the USA. OHIP no longer covers it .

We would appreciate any help or support to try and find Trevor some pain relief in this battle with CRPS. Anything you can do would mean everything to us.
Please help make this possible! Please consider being apart of his gofundme and help him find some relief from CRPS and give him hope to get through another day. Please share with your family and friends, your church or personal groups and work friends that may be able to help raise funds