CHRONIC PAIN IS PERVASIVE AND COSTLY! WHY HAVEN'T WE FIXED IT YET?

I look online every day searching for new information about the treatment of chronic pain. My pain is well controlled for the most part, but I continue to look because I can’t help but feel for those still suffering every minute of every day. Chronic pain interrupts and destroys every part of life, trust me I know that too well. Frankly, if I were to describe hell, it would certainly come under the banner of chronic pain.

This past spring, I attended a 6-week program that incorporated different modalities to combat chronic pain. They offered education sessions, strengthening exercises, taught coping methods such as pacing activity and relaxation methods such as meditation. They also had a physician on staff that instructed patients on the proper use of their medication to obtain the maximum effect. Many were already on pain medication however, they continued to suffer significantly as medication alone is seldom the answer.

Prior to starting the program, I had done much research on my own and had already employed most of the methods they taught. However, I was deeply affected by my time there. Not by what I learned but by the other participants. There were many poor suffering souls also taking the program and while I would watch them shuffle down the hallways, I always became teary-eyed. Part of my emotional reaction was the nurse in me; the other more powerful reason was the fact that I was in their shoes not too long ago. They looked helpless, hopeless and devastated that this was their reality. I won’t say that I didn’t learn anything as there were a few things I picked up along the way. For the most part though, I talked to these other injured folks in depth about their injury and subsequent pain. I even helped a few out with the name of an excellent worker’s compensation lawyer. (Which incidentally is an absolute must after a workplace injury)

I suppose in any environment I can not turn off the nurse that resides within me. I told them exactly what I had been through and how I arrived at such a significant improvement. I watched many of them as their faces lit up with hope! I too had lost my hope at one point even becoming suicidal. Chronic pain can do that to a person. When they saw someone that used to be like them had actually improved, you truly could see the light bulb turn on. As human beings, if we lose hope, we are a short trip from complete, all-consuming desolation and that is a most harrowing place in which to find yourself! I offered physician’s names, medication regimens, and many of the activities they also taught at this program. I suggested they see their physicians’ fully prepared to ask the to doctor try each and every possible treatment available until they were successful. The biggest problem is that when you are suffering, you lack the ability to advocate for yourself because you simply do not have the strength within to do so. Chronic pain taps every resource that you have. I told them that despite their suffering, they must put their remaining bit of strength into advocating for themselves. The sad thing is, if we do not act as advocates for ourselves, no one else will.

So, the point of this post is WHY when there are so many suffering with chronic pain, we have not yet found a significant way to treat it and improve quality of life? The financial cost alone is staggering and is an excellent reason for researchers to push forward for better treatments. In fact, if you read THIS article, you will see that for the United States alone, chronic pain costs up to $635 billion annually in medical and economic costs. That alone should get everyone’s attention.

The present treatments are woefully ineffective as you can read HERE. Another scary statistic is the lack of education for physicians as there are apparently only 5 medical schools out of 133 in America alone that have required courses specific to the treatment of pain. Now, I don’t know about you but I think that is a pretty sad state of affairs and simply unacceptable!

On the upside however, I believe that chronic pain and the lack of forward progress in treating it has finally garnered the attention of some researchers. For those suffering, this can not happen soon enough! The American Pain Society is lauding the recent Institute of Medicine report as a 'step forward' in the treatment of pain. Hopefully with the increased awareness and research, chronic pain patients’ can finally get out of their beds and perhaps re-join their lives…That is my wish for all those suffering with chronic pain.

Take care and stay well,
J

THE LITTLE ENGINE THAT COULD.....OR.....COULDN'T: Coping in the workplace with disability and chronic pain

Returning and/or remaining in the workforce can be challenging for anyone. There are numerous stresses such as deadlines, conflicts and personal issues that can effect an individual’s success in the workplace. When one is disabled and suffering with chronic pain, the difficulties and challenges become magnified many times over. The World Health Organization defines disability as: “Disability is any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being.” As a person experiencing returning to the workforce with a disability, I can assure you that it is a daunting task. A down right scary one at that.

I have previously stated that my pain is well controlled now and for that I could not be any more thrilled. I have also stated that I do very well as long as I don’t over-do it too much. Well, yesterday I did. I attended a combination job interview/job trial that kept me from home for too many hours. The drive time alone took one hour and 10 minutes ONE way. Then I had a brief interview/orientation and proceeded to carry out the tasks of the job for 8 hours.

As a nurse for 21 years, this job is something I have never done before. It is basically a quality control position. This pharmacy company provides pre-packed medications and blister packs for nursing homes, chronic care hospitals and retirement homes. In other words, it is a medication-packing factory. It is an extremely fast-paced environment as they provide this service not only for local places but also for nursing homes as far away as a 5 hour drive. Needless to say it is very busy. My job was to ensure that the pre-packaged medication that was sealed by the machine had the correct medication in it. Frankly, you would be surprised to see how many errors do in fact occur and therefore this quality control position is essential.

When I returned home last evening I felt one step away from dead. I fell asleep quite early and awoke feeling horrid pain that I have not experienced for a while. Still feeling exhausted this morning, it quickly became apparent that I had ‘over-done it’ and my body was screaming this at me in no uncertain terms. The manager of the pharmacy stated that he would contact me by the end of the week and let me know if I have the job. I need to work, as WSIB will no longer pay me beyond the end of the month, which is 7 days from now. So, what to do…

I didn’t mind the job at all, my only concern is whether or not I can actually be successful long-term in this position. Will I in time become better able to manage the job or will I fall on my face and fail miserably? I want to be the ‘Little Engine That Could,’ truly I do. There is much documentation regarding this topic and you may read a few of them here, here and here. I know many disabled and/or chronic pain sufferers have been successful in their careers and I would love to hear from anyone that has ever been in this type of situation in which I now find myself.


Take care and stay well,
J

THE GOOD THE BAD AND THE UGLY: Part 1 of the Lengthy "Back Story"

Once again I must apologize for my absence. This time however, I have a reason...I have been jumping through the many WSIB (Workplace Safety and Insurance Board) hoops. To begin, anyone that knows me is well aware of the nightmare I have dealt with regarding chronic pain. In the past, if anyone were to tell me that I would actually be successful in controlling my pain and again have my 'life' back I would have believed them insane. Though, that is exactly what happened.

Based upon the recommendations from a pain specialist, my lovely physician decided to try me on the Fentanyl patch.* (A very dangerous narcotic, but exceptionally effective when used correctly and safely.) It turned out to be an absolute miracle for me. Normally my pain level on a scale of 1-10 was at least 7 at rest and rose well above 10 with any physical activity. I had become a completely non-functioning chronic pain poster child. I had always been an upbeat happy individual and never dreamed that I would become depressed and suicidal. But, I did. Chronic pain can do that to even the most jovial person. It was a combination of the pain and my inability to function. I truly felt like a useless piece of garbage. As a nurse for many years I was always in the caregiver role, not the care receiving and had my identity all wrapped up in being a nurse. What was I now? Thank the Lord that I had not followed through with my suicide plan, as just when I reached my darkest hour, my miracle arrived.

It did require some 'tweaking' but, within 2 weeks, I was pain free. PAIN FREE!!! Anyone that suffers with chronic pain day in and day out can certainly appreciate just how difficult it is to control it and many poor individuals never reach that point. My pain level is now 0/10 and only when I really overdo it does it come back but even then, it is only 1 to 3 out of 10.

Finally I had my life back. I could again attend social events, visit friends and family, participate in the day to day necessities which previously all fell upon my poor husband's shoulders. Not only that, I was able to return to the job I loved with all my heart as a community nurse. My identity restored, I was ecstatic and felt on top of the world, well for 7 months anyway. After 7 months of working without incident, my employer, Bayshore Home Health, decided that they would dispose of me because I represented a future risk of re-injury, therefore it was about liability and the potential loss of money. The bottom line is always about money isn't it?

After months and months for persevering and struggling to return to normal functioning, I was discarded like a piece of rotted fruit. The details of what has since occurred are somewhat lengthy so I shall leave that for part 2 & 3 of the 'back story'.

As a little preview, it involves a Human Rights case initiated by me and a 'promise' to Bayshore that I will not go away quietly.

Until then, take care and stay safe.
J

P.S. Come back soon, the story is just getting good.

I HAVE HOPE AGAIN!!!

Clearly from a couple of my recent posts, it is apparent that I had reached a very bad place. A very dark place where all hope was gone and surely to never return. Losing hope is a very dangerous place to be...however yesterday, I came to realize that there is still reason to hope.

I saw a new doctor, who is an MD/Chiropractor. Before even speaking with him, I noticed a large poster in his waiting room that jumped right out at me. It was divided into 3 parts. The 1st: a picture of someone holding an enormous handful of pills, the 2nd: a picture of a surgeon holding a scalpel, and 3rd: a picture of a doctor providing a treatment that states: "I won't prescribe meds to mask symptoms,I won't do surgery that can worsen your condition, MY GOAL IS TO FIND THE PROBLEM AND FIX IT." Imagine that, someone that wants to try and FIX the problem, what a novel idea...

He did a scan of my entire back, muscles, nerves, spinal cord/vertebrae etc. This initally had the potential to devastate me even further, as the results were bad! Really bad, even worse than he or I had initially thought. I did at least derive a better understanding of why my pain is so horrid and uncontrolled, and as he explained it all to me, I was fighting back the tears yet again...

I have been so emotionally fragile lately, bordering on suicidal that I was profoundly scared to hear anymore bad news. However, I struggled to get one sentence out. "Can you help me and fix it?" He said YES!!! Now, I am not so gullible to not recognize that he could possibly just be telling me what exactly what I wanted to hear, however what he explained next is what gave me my hope back.

He explained of course that he would do his very best which is always a nice thing to hear. He stated that he has seen several people with scans almost exactly like mine. All of them had a significant decrease in their pain after his treatment. While I may be somewhat unrealistic in wanting to be 100% pain-free, he assured me that he would be able to make a very noticeable decrease in my suffering. The pain has been so horrific that any decrease in pain would be wonderful, and so I have kicked my negativity and giving-up mindset to the curb and am positively focused on whatever amount of recovery I can obtain.

Where the hope snuck back in was in the fact that I have only gotten worse over the past year or so, with no improvement whatsoever and nothing but bad news over and over again. Now, no matter the percentage of improvement, I know that it will result in a decrease of some amount of my suffering. I'd love 100% recovery, even 50%however, 5%, 10% or whatever it may end up being, it is at least a measure of improvement rather than continuing to go downhill.

It does unfortunately mean a one hour drive there and another hour back, but I would go to the ends of the earth for any amount of relief. I will continue to post updates about my treatment and recovery that may offer hope to someone else going through the same thing and in the meantime it sure is great to say: HELLO AGAIN HOPE, I'M SO GLAD YOU'VE COME BACK...
J :>)

CHRONIC PAIN=SHRINKING BRAIN...

Something else in research news to look forward to. The latest study indicates that those with fibromyalgia (or any type of chronic pain) seem to develop a problem with shrinking of the brain. Actually, that explains a lot. I thought my brain fog was caused by suffering and poor sleep 24/7, when in fact, my brain may be shrinking.

I am trying this new thing...Working on looking for the positive in a negative. Now, it is a little difficult to come up with some positives related to my shrinking brain, however the following is my good old college try:

1) The next time I do something outlandishly stupid, I have a legitimate excuse-"I'm sorry, please forgive my stupidity, but my brain is shrinking."

2) If I ever experience brain trauma that results in a brain bleed, there is more room in my skull now and therefore extra area for expansion that those with a normal brain do not have. Normally, time is of the essence to relieve the pressure on the brain and avoid permanent brain damage. With my shrinking brain however, the doctors will have more time. How's that for thinking positive??

3) If my brain shrinks enough, I may actually become eligible for disability benefits.

4) My last and personal favorite positive, there will be many more interesting adjectives available to describe me:

-senseless
-witless
-weak-headed
-addle-pated
-muddle-headed
-doltish
-insensate
-vacant
-dunderheaded
-obtuse

The article explains the loss of gray matter was three times greater in fibromyalgia patients than in normal test subjects. A lovely explanation that adds insult to injury, we sure are a lucky bunch us chronic pain sufferers!

Of course, I'm teasing, but one needs to keep their sense of humour when dealing with WSIB or any worker's compensation board! Laugh or you will go crazy...
Here's to thinking positive,
J