Living With CRPS

On September 23, 2018, my life changed. At that moment, I was unaware of the impact it would have on my life, both professionally and personally, on the short and long run. The events that happened following this date were entirely unexpected and shaped me to become the person that I am today.

Coming to work on my scheduled weekend off due to a scheduling mistake, we were short staffed during the high season and all serving at the very least 5 clients. Using a high powered machine to complete an order, I became distracted by questions from two clients, placing my hand to hold the product. What I hadn’t realized was that while I answered the questions, I was also about to press on the wrong button – rather than making the carpet roll down, I  had taken out the ‘rabbit’ – a high powered cutter that runs the width of the machine to cut the desired product effectively. Trust me when I say adrenaline will make you numb to high impacts. **side note: no limbs were severed during this accident, I assure you**

Icing my left hand (more specifically the thumb), I filled out the necessary Workers Compensation documents and went right back to work. I mean, there was some swelling and some tenderness, but in my head, I was tough, I could absolutely handle this. I was used to getting injured and admit to being a total klutz on my best of days. The next day I was scheduled to work in the morning, and on average could easily lift things up to 100lbs on my own and that morning, just putting my pants on made me whimper in pain. Walking into work, I requested taking a few days of light duty so that my thumb wouldn’t hurt while lifting products. In the end, my employer sent me to the hospital to get the doctor’s note stating I had the medical right to be on light duty. After 17 hours, the ER doctor diagnosed me with micro fractures inside the first phalange of my thumb. With an x-ray, a medical leave until I met the plastie department (they give you your cast and are the bone specialists) and a metal retainer, I was sent back home, exhausted.

The next day, I handed in my papers and went back home to sleep while my four year old daughter was at daycare. A few hours later, I woke up crying and barely stopping myself from screaming in pain. My thumb was throbbing and hurt as though someone had hit it with a hammer; even moving it a little took so much concentration that I didn’t understand why so much brain power was necessary for something i could do with my eyes closed. A few days later I had an appointment with my family physician and the plastie department at the hospital – my doctor took me off work for two weeks, prescribed pain medication and told me to come see him in two weeks, while plastie couldn’t understand where the pain was coming from since to them, the micro fractures were negligible. Although, I do have to hand it to them, they have quite the humour since they gave me a half cast and made me regret the day I went to the hospital.

A month later, the pain persisted and by then, my hand would swell for no reason, even if my arm was elevated 90% of the time. During a routine exam with my doctor suspected that I was suffering from CRPS – Complex Regional Pain Syndrome. Trust me when I tell you that that was the worst diagnosis I could have feared because when people hear pain syndrome, they think ‘it’s all in your head’.

CRPS affects 5% of individuals having suffered an injury, no matter the type, or after surgery. Mind you, I didn’t get surgery, but that rabbit hit my thumb and I suffered a blunt force trauma to an appendage. Not many physicians or individuals understand or know what CRPS is, so when it comes to having to explain my condition when I go to out or see other doctors, it can get a bit long after a while.

CRPS can occur in anyone at any age, with a peak at age 40; it’s rare with the elderly and very few children under age 10 and almost no children under age 5 are affected1. Some experts believe that CRPS occurs as a result of dysfunction in the central or peripheral nervous systems2. There are two types of CRPS:

CRPS-I: Individuals without a confirmed nerve injury are classified as having CRPS-I, which is also previously known as reflex sympathetic dystrophy syndrome; and

CRPS-II: previously known as causalgia; this type of diagnosis is when there is an associated, confirmed nerve injury1

In my case, I had both. I was suffering from CRPS due to dystrophy and had confirmed nerve injury.

Some signs and symptoms of this medical condition include, which alerted my physician of my condition:

  • Pain – some example can be a burning sensation that is severe, constant and near the primary area of the injury
  • Swelling that can be localized or the entire limb
  • Skin changes such as the temperature or the color
  • Limited range of motion of the affect area
  • An increase of the symptoms after exercise
  • Motor dysfunctions such as weakness, tremor, dystonia or spasms
  • dystrophy e.g. muscle wasting
  • Insomnia, anxiety, depression, poor judgment
  • Changes in the hair and nail
  • Changes in the bone such as osteoporosis
  • Joint tenderness or swelling3,2
  • Changes in skin texture on the affected area; it may appear shiny and thin
  • Abnormal sweating pattern in the affected area or surrounding areas
  • Problems coordinating muscle movement, with decreased ability to move the affected body part1

Physicians were able to diagnose my condition with many of these symptoms – find out which ones by looking for the () beside the symptoms. Intense, right? Yeah, I thought so too.

Current treatments include:

  1. Drug therapy: a) local or systemic corticosteroids b) muscle relaxants c) alpha-adrenergic and beta blockers d) analgesics e) anti-inflammatories f) tricyclics and related compounds g) tranquillizers h) calcium channel blockers i) membrane stabilizers j) opioids
  2. Blocks: a) focal b) sympathetic blockade c) intravenous regional blocks d) epidural e)plexus catheter blocks
  3. Physical therapy: land PT or aqua therapy, graded motor imagery(GMI) and mirror visual feedback (MVF or mirror therapy). Others are laser therapy, vitamin/mineral supplements.
  4. Transcutaneous electrical nerve stimulator (TENS)
  5. Sympathectomy: a) surgical
  6. Implantable devices: a) spinal column stimulator b) peripheral nerve stimulator c) morphine infusion pump (intrathecal drug delivery e.g. baclofen)
  7. Ketamine: a) low dose, b) 4 hour IV infusion c) ketamine coma (currently not available in Canada) or lidocaine infusion.
  8. Deep brain stimulation. This is still largely experimental in Canada.3, 2
  9. Graded Motor imagery.  Several studies have demonstrated the benefits of graded motor imagery therapy for CRPS pain.  Individuals do mental exercises including identifying left and right painful body parts while looking into a mirror and visualizing moving those painful body parts without actually moving them.1

During my rehabilitation after my diagnosis, I ended up taking various medications from pain medications, anti inflammatory, nerve blockers (or Beta blockers), anti depressants, anti anxieties, uppers to keep me awake during the day and sleeping aids. During the day, I could take upwards to 25 pills at any given moment. Between pharmaceutical prescriptions to control the pain and the depression, I was going through ergotherapy to help work the various motor skills I had lost during the 8 weeks I had my cast and working on regaining the range of motions I no longer had. Once these treatments were done, I went through physiotherapy to regain my muscular mass – because of CRPS, I over compensated with my right arm and suffered lasting damages to my shoulders. To this day I’m no longer able to lift my arms more than 90 degrees or remain in a static position without pain setting in. While I had the opportunity of receiving sympathetic nerve blocks through localized injections of steroids in my wrist and clavicle at three different opportunities, they didn’t take nor improve my condition. The Mirror Therapy (the graded motor imagery) wasn’t enough to trick my brain into thinking that everything was ‘normal’.

Treatments for CRPS are most effective within the first six months after the injury occurred – my treatments occured 9 to 12 months after my diagnosis. By then, the damage was done. It’s imperative to understand that CRPS doesn’t simply cause chronic pain – it also creates an imbalance in the patient’s brain as it [the brain] believes that it is constantly being injured and as such, tells the body to protect itself.

5 years later, I have managed to wean myself off of the medication due to medical complications (which was a personal decision and not suggested by my medical physician because of the severity of my condition). I still take medication when the pain becomes unmanageable, and I live with chronic pain daily. I have been declared handicapped with a 35% permanent damage following a work related accident and while many won’t notice the injury unless they pay careful attention, I’ve had to learn how to do the simple things like holding a cup all over again. Professionally – I can no longer perform physical tasks that are more than 10 lbs, and has given me a better appreciation for those who still can. It has also forced me to acknowledge my other abilities such as marketing, design and management. CRPS doesn’t mean the end of your life, but rather a change in perception.

1- – What is complex regional pain syndrome?
2- – Complex Regional Pain Syndrome

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