A Pained Life: The Conundrum of Pain

A Pained Life: The Conundrum of Pain

September is National Pain Awareness Month.  In Pennsylvania it is also Women In Chronic Pain Month.

The latter is an easier concept.  Bringing attention to the disparity and gender bias in treating chronic pain in women vs. men.

075To my mind, the former is much more complicated.

First if all, I wish they had included the word “chronic” in the resolution and not merely the word “pain”.  Everyone is in pain at some time or another.  The issue is much greater than that.  It goes directly to the kind and amount of research and research funding, as well as the treatment of those living with chronic pain.

There are many disorders and diseases with pain as the main or sole complaint.  These are some of them: cranial nerve neuropathies (such as trigeminal or glossopharyngeal neuralgia), peripheral neuropathies, including phantom pain, CRPS (chronic regional pain syndrome), many of the auto immune disorders such as rheumatoid arthritis, and Lupus, and the list goes on and on.

Many of them have treatments, medications, and possibly surgeries, that are specific to the diagnosis.  The one common denominator, absent the pain, is the use of prescribed opiates.  Codeine, Vicodin, and others are prescribed mainly as an analgesic, since all they can hopefully do is anaesthetize the pain.

Many of us who live with daily and often constant pain tend to look at it as one main category: chronic pain. But putting it all in one basket or one name makes it harder to accept the difficulty in finding an appropriate treatment. There is not and probably cannot be just one answer, because there are too many disorders as the primary cause.

I have to admit I get frustrated when I see attention and publicity paid to a specific disease such as fibromyalgia or CRPS.  I immediately think but that is only one illness, what about the rest of us?

My trigeminal neuralgia pain is not the same as the pain of someone who has CRPS or fibromyalgia.  Of course it is different.  Yet there is a debate ongoing as to whether chronic pain is a disease in and of itself.

How can it be a singular disorder?  Pain, after all, is a symptom, a sign.  It is not an entire entity.

But boy, I sure wish it was.  Research and funds could be coordinated with one single goal; relieving the chronic pain of  an estimated 100 million Americans.

It would be so easy, so wonderful to have the one- size- fits- all answer.  It allows for hope.  If all the money, all the studies and research were directed towards the one endpoint — the chances of a cure would be greater.  Instead it is scattershot towards the individual illnesses.

It is National Pain Awareness Month.  We need to bring attention to the month, to the numbers of people living with pain, to its disability and horrors.  It is a time to announce the ills that cause the pain.  It is also a time to remind ourselves that the answer may be a longer time in coming then we wish.  The upside is that the research is ongoing for the singular illnesses.

And in that, there is hope.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.


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Authored by: Carol Levy, Columnist

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Carol- its up to people in pain and those who care about them to get government and the health care industry to take pain seriously. The government and health care industry suffer from the parallax gap and still believe they should do what their colleagues are doing instead of hearing and responding fully to people in pain. This trend cannot be changed by professionals it can only be changed by new laws and laws wont hapen unless people in pain demand it from government. As the leading advocate for pain care in NYS with 26 legislators to my credit signed onto bills on pain care- i speak from experience. bon chance

According the Institute of Medicine report, there is bias in treating women in pain. Thank you for bringing this to the attention of many.

Dr Stephen Rodriques is also spot on in his assessment. For instance, myofascial pain syndrome is a peripheral pain generator to the centralization of pain in fibromyalgia, but it also is alive and well in migraine, interstitial cystitis, chronic pelvic pain and other diseases that cluster with FM. It is frequently overlooked, as we discuss in our big book, because internal medicine doctors get little to no training on the myofascia. So I am grateful for his assessment and comment.

John Quniter in my experience, continues to ignore the research, of which there is a plethora, and one only needs to place their hands on the patient, use ultrasound guidance to do trigger point injections and dry needling and not only visualize the twitch response, but watch the shortened fiber return to its normal resting state, thereby restoring function and decreasing pain and neuropathies. This is pretty objective evidence.

Not to hijack your article, I agree with you that pain may become chronic because the underlying factor is not treated appropriately and in a timely manner. Once we decide chronic pain is a disease in its own right, it could exponentially increase the chronic pain state in a patient that might otherwise avoid it.

However, it is coming. There are many who believe that considering chronic pain as a disease state will catapult research, and it will help many suffering with chronic pain get treatments they might not otherwise get, including attention to the myofascia and integration of pharmaceuticals with other manual therapies, while addressing the financial, psychological and sociological impact of pain.

John Quintner, Rheumatologist

@ Stephen. No matter how many times you trot out your ideas about “myofascial trigger points,” the inescapable fact remains that there is NO scientific evidence of “stressed and broken” muscle fibers that refuse to heal. However, without doubt this situation can change after enthusiastic therapists launch their attack upon innocent muscle tissue with stainless steel needles. Myofascial release therapy belongs in the dustbin along with other far-fetched therapeutic speculations.

@ Mark. Your argument does not make sense to me. But we have had this conversation before so there is little point to revisit the argument. I remain to be convinced that chronic pain is a disease in its own right.

Thank you for bringing awareness to chronic pain.Chronic pain is a complicated subject as it encompasses may diseases and disorders and it in itself is a disorder that effects the whole body and mind. It is an experience of pain ,suffering and disability. The pain is frequent, continuous or constant pain. Those who suffer from chronic pain usually find their pain is not relieved by typical methods or standard medical therapy.

A chronic pain patient usually has tried many therapies and has not responded to them with significant relief. Most of the time a chronic pain sufferer will be utilizing several methods to diminish pain.

Chronic pain is often associated with significant side effects like depression, loss of libido, weight gain, inactivity, irritability, anger and insomnia to name a few. Chronic pain patients often find themselves taking several medications that may leave them functioning poorly, sometimes accentuating the side effects they have or cause more side effects like sexual dysfunction, constipation, difficulty urinating, confusion and memory problems.

Chronic pain is usually the result of some injury to the body. Most of the people we work with have spinal problems (back and neck pain), nerve damage(diabetic neuropathy), joint problems, connective tissue disease (rheumatoid arthritis, lupus), cancer, fibromyalgia or headaches.

Each person experiences pain differently. The pain you experience depends on biological and neurochemical responses by your body and brain as well as socioeconomic and cultural influences.

People need to be more supportive of the chronic pain sufferer.

Dr. Kent Support for Chronic pain sufferers

Carol the way I view it Chronic Pain is a disease in its own right. Chronic pain can become intractable meaning surgery can not remove the source of the pain.
The way I view it is any chronic pain condition comes with a disease attached to it. For instance my chronic pain is due to a degenerative disc disease. Therefore my ongoing chronic pain is a disease in itself.
It causes me distress and intractable pain and that in itself is reason enough for me to think my chronic pain is a disease in its own right.

Like you said pain is a symptom or a sign something is wrong with the body causing severe chronic pain. When I had my MRI I found out the disc in my spine are desiccated or dried out .
Then I find out the disc in my spine are diseased, they have lost there elasticity because of tiny tears or cracks in the outer layer (annulus) of the disc. The jellylike material inside the disc (nucleus) may be forced out through the tears or cracks in the capsule, which causes the disc to bulge, break open (rupture), or break into fragments. Then it causes the space between the vertebrae to get smaller, there is less padding between them, and the spine becomes less stable. The body reacts to this by constructing bony growths called bone spurs (osteophytes). Bone spurs can put pressure on the spinal nerve roots or spinal cord, resulting in pain and affecting nerve function. And this proves my point that chronic pain is a disease it its own right. Other people may have different reasons why they have pain but it all goes back to chronic pain linked to a disease for that person.
I hope this make more sense as to why I think chronic pain is a disease in its own right.

Mark S Barletta

Thank you Ms Levy. We are on the same mission to help eliminate long-term pain. (HELP)
My focus is on a few truths that have been marginalized over the past 15 years. These truths are crystal clear to me because I have taken a circuitous route to this view.

Thanks to the introduction to
Janet G. Travell, MD / David Simons, MD; http://www.myopainseminars.com/seminars/travell/
C. Chan Gunn, MD; http://www.istop.org
Edward S. Rachlin, MD; http://www.amazon.com/Myofascial-Pain-Fibromyalgia-Trigger-Management/dp/0323011551
George S. Hackett, MD; http://en.wikipedia.org/wiki/Prolotherapy

They group most chronic pain issues into a class called Myofascial Pain and Dysfunction.
This class of muscle tissue dysfunctions can explain a vast number of the pain conundrums providers see in everyday clinical practice. MFP/D will masquerade as arthritis joint problems, Degenerative joint disease, nerve compression problems like Trigeminal Neuralgia, Occipital Neuralgia, Meralgia paresthetica, Morton’s neuroma and Carpal Tunnel nerve pain.

The unfortunate situation is that if MFP/D is not on the table in the beginning of a pain illness a lot of time and effort will be wasted. Diagnostic scans, MRIs, Nerve conduction studies can not detect these syndromes so if the testing shows no tumor aneurysm, infection or cancer, than I would consider myofascial disease the diseases to be considered and therapy begun.

Myofasical pain and dysfunction is a problem in the muscle fibers, when stressed and broken fibers will not heal properly. These are called Trigger Points and the TPs will accumulate until they reach a critical number, then a dis-ease will form. Myofascial tissue is everywhere there are muscles, from around the head and sinuses to the feet and toes. Sick and weak MF tissues will restrict the full ability of a muscles to function well and cause: Weakness, numbness, tingling, stinging, and electrical burning pain PLUS Achiness, stiffness and restricted movement of any joint. Accelerated joint wear and tear. Headaches and sinus issues. Bursitis and tendonitis. Block arteries and swelling due to block venous return.

Unfortunate the only way to know it a patient has a MF pain issues is first rule-out dangers and if none are present, begin therapy. Therapy will be informative as to what the diagnosis truly is and how best to treat it as the Therapy continues.

Myofascial Release Therapy is aimed at igniting the necessary healing needed to repair TPs. What is “Therapy”? MFRT is on a spectrum from simple stretching, yoga, massage, Chiro adjustments, hands-on manipulations, acupuncture, Gunn-IMS, dry needling to finally Travell trigger point injections.

The beauty of MFRT is that it is safe, non-toxic and the patient can do some at home and it should be a part of all chronic pain departments.




Very insightful. I read another insightful point in Laurie Edward’s excellent book, In The Kingdom of the Sick. Because there are so many disparate chronic conditions, including pain conditions, it makes it hard for this patient group to band together to rally support, research and recognition and make a case for change. This has been done so successfully with breast cancer, for example, but so many of our patients have rare or less common disorders.

As I read your column, I thought, I have TN and I can tell from your excellent writing that my pain is very different from yours. Still, we are together in it.
Thanks for the good work you do,