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Living With Chronic Pain

By Sandi Morrow, BSN, RN, CPN

Posted on: January 18, 2012

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Nurses gain empathy and insight when they assume the role of a patient.

Four years ago, I was involved in an accident and have been living with chronic pain ever since.

Different sources define pain as being chronic either after 3 months or 6 months, or if it lasts longer than expected for an injury.

As a patient I can tell you that after about a week I really thought I couldn't continue to live with the pain I was in.

Four years and endless search engines later, I look at the phrase 'living with chronic pain' and think that I stopped living with chronic pain a long time ago. Existing? Just about. Surviving? I'm really trying. Coping? Sometimes. Living? Sure doesn't feel like life to me.

Four years ago I rode my horse, drove my motorcycle, and successfully competed in karate tournaments. Now I get some serious thrills if I sleep four hours straight. I have gained 40 pounds due to decreased activity.

Gardening used to be my passion, my therapy, my pride. Now I have flower beds full of weeds and gardening falls into the category of an activity I tell my physical therapists I'd like to be able to do again.

One of the young men in my chronic pain support group cuts himself in order to briefly forget about his chronic pain. I have not done that but I completely understand why he does.

In 4 years, I have tried every traditional and alternative course of action from acupuncture to yoga. Surgery will be my last resort and I will be opting for it soon. I know there are no guarantees and the thought that the pain could remain or get worse terrifies me.

Both my parents were raised on dairy farms so I have grown up with the basis that life isn't fair and that there is no such thing as calling out sick - just plugging away. If I had been raised any differently I honestly do not know if I would be alive right now.

As a behavioral health nurse I heard patients say it isn't that they wanted to die, they just could not go on feeling the pain they were in. I know all too well exactly how they feel.

Last week I was having an exceptionally bad night. I had taken all the medication my physician prescribed and some zinfandel I prescribed myself.

I know as a nurse that combining NSAIDs, muscle relaxers, narcotics and alcohol isn't recommended; as a patient I can tell you it wasn't even taking the edge off that night.

Distraction wasn't working. Heat wasn't working. Stretching wasn't working. I ended up lying prone on my bed with my left arm hanging off, left knee tucked under my chest, head on three pillows facing to the right and cried.

That's how I 'lived' with chronic pain that night.

Everyone wants you to describe your pain. It feels like my back and left hip are twisted, being wrung out like a towel while being squeezed in a vice grip. But the worst part is the nerve pain, like a raw nerve tied in a knot dipped in acid and set on fire while a tiger uses my nerve for a scratching post.

I have seriously considered taking a hacksaw and amputating the entire left side of my body. Oddly, I haven't been to a facility yet that had a checkbox for that.

I concluded long ago that the phrase 'living with chronic pain' was an oxymoron, that whoever coined the phrase was probably treating it and not experiencing it. After countless treatments, medications and therapies that just took the edge off, I resigned myself to inevitable surgery.

I also started typing 'chronic pain forum' and 'chronic pain support groups' into the search engines.

No one in my life understands the daily struggle to function while in pain, not my family or friends or healthcare providers, and I am grateful for that and I hope none of them ever experience chronic pain. The support groups I have found online have been a Godsend.

To be able to talk, even virtually, to someone having the same physical and emotional feelings has made a difference. There are patients younger than me, housebound, in more pain than I can imagine: and everyone is there for each other. Many of the groups have hotlines and referrals for more information. I wish I had connected with the support group I am in sooner.

My online username for my support group is StillHoping13.

I am still hoping my chronic pain comes to an end. I am still hoping all patients with chronic pain get the treatment, support and relief they need. If all you have left is hope you grab on with both hands and desperately cling to it.

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Sandra:

Your story is my much like my own. I had given up hope that there was anyone out there who knew what I have been going through. Although I could never do it myself, there have been times when the pain has been soo devastating and unending that I wished for someone to just put me out of my misery.

Before having to go on disability I had been a staff nurse for 20 years, both a full time position as well as moon-lighting on the side, before taking a position as a nursing instructor at the university level. From there I moved on to my dream job where I traveled to Europe every few months while working in research. I had been very active all of my life in sports, playing women's field hockey well into my 50's, white water rafting class 4 and 5's, and other extreme sports. I have never had a fracture or broken bone and no serious accidents...until the pain discovered me.

After more than 30 years of escalating episodes of pain in both quality and quantity, seeing more than 35 different physicians and healthcare professionals, spending 3 months in another country searching for a possible source of the pain and trying every method of pain management available, I am still living with pain as my constant companion. It is with me every day. Some days, some hours it is angrier than others. It shows it's ugly head whenever it wants and disappears when it wants. There are no identifiable precipitating factors. Pain meds have little to no effect on the pain. The most effective method of pain control that I have found is to get myself flat on a hard surface with a heating pad under my upper back. If I can get into this position fast enough I can avoid hours, days, or even weeks of unending torture at the hands of chronic severe pain. My pain does have some compassion though in that it gives me about 15 to 30 seconds of a prodrome where I become profusely diaphoretic and have what I call "brain scramble" before it digs it's nasty little claws into my upper back and sending me out of control with pain that I consider equivalent to that of the "Inquisition".

I have found that the medical profession prefers to write prescriptions for pain meds rather than tap into the scientific education they received in medical school to find the CAUSE of the pain. Fortunately I have a physician who is open to any suggestions I offer as the possible source of the pain so long as my suggestions are backed up by good rationale and sound science. He is willing to investigate conditions that could be causing the intense, overwhelming, debilitating, burning pain I experience between my shoulder blades which has taken away my life in ever increasing increments over the last 30+ years until it won the battle 11 years ago and took charge of my life around the clock.

Over the course of this time I have seen the best and the worst of my fellow human beings when it comes to COMPASSION. I lost a husband to my chronic pain situation when he determined that I was "no fun anymore". I have one child who understands and is compassionate to my dilemma and yet I have another child who believes that taking antidepressants would solve everything. I have had the pleasure of meeting grocery store cashiers who would ask sincerely if they could be of any help when seeing that I was in such pain. But what is most disturbing to me is that over all of the years that I have been dealing with chronic severe pain as a part of my everyday life I have seen a distinct change in the COMPASSION of "healthcare workers". I use the term "healthcare workers" to distinguish this group from those of "healthcare professionals". While I cannot say that every "healthcare worker" with whom I have come in contact has lacked compassion, because that is definitely not the case, I can say that over the course of the last 11 years there has been a definite upswing in the number who have no concept, or very little idea of COMPASSION when interacting with patients. While it could be assumed that compassion is an integral part of every human being, being that which makes us human, I have come to see that this is not the case. When we hire people to interact with patients, to perform tests on patients, to take care of patients in any manner at all it would seem important that these people would have the interpersonal skills, over and above the task oriented procedures for which they are hired.

While living with chronic severe pain is foremost in my mind, I have serious concerns as to the future of healthcare in terms of those entering the healthcare professions today, their reasons for doing so, the screening process for admission to educational programs in the healthcare field, as well as, in terms of Registered Nursing, how CARING is/can be taught via internet nursing programs.

Marie	August 14, 2012

Apparently, there is a small chance of false negative results on the western blot, if your immune system is not producing antibodies like it should. My results were clearly positive, but the doctor who treated me (a LLMD) said that Lyme can decrease immune function to the point that the antibodies are undetectable by the current available tests. People have apparently come to him after being sick for years and when he treats (even though they still test negative), they improve. So, if all of your other tests come back negative, you could always see an LLMD as a last resort. One of my misdiagnoses before I was tested for Lyme was sciatica, even though my lumbar MRI was normal. Best of luck in your search for relief!

Kristin	February 03, 2012
Chesterfield, VA

Thanks so much for your input. Yes - I've been tested twice for Lyme and both were negative. I had a L-S MRI yesterday because they are now thinking it might be involving nerves, even though I have no tingling or burning.

Sandra , R.N. retired	February 03, 2012
MD

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