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Living With Chronic Pain

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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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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. retiredFebruary 03, 2012
MD



Sandra,
Have you been tested for Lyme disease? It usually shows up in the knees first and is a very underdiagnosed condition. Mine started in my hip, and I had one doctor recommend surgery before another doctor identified it as a Lyme infection, and treated with antibiotics. I got an arthrogram and steroid injection in the joint before the Lyme diagnosis, and this made my pain MUCH worse. Makes sense that the immunosuppression from the steroids would make an infection worse, but no one was thinking along those lines at that time. The incidence of Lyme has gone up dramatically in the past few years, so it is worth getting a blood test. Good luck, and hope you feel better.

Kristin February 02, 2012
Chesterfield, VA



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