What We Talk About When We Talk About Pain

What We Talk About When We Talk About Pain

When you talk about pain, what is the most important thing you want to express?

Do you describe pain to your doctors in a different way than you do to a co-worker? A loved one?

At a doctor appointment, do you use the number system or a detailed description of your pain? Both?

Pain is the most common invisible symptom people experience. It can also be the most challenging sensation to express in an effort to find relief–and no less important—compassion.

I was recently challenged by my gastroenterologist to describe my gas pains. I was stymied by this request.

“I don’t know,” I said, feeling flummoxed and irritated. “It’s gas pains!”

“Is it a cramp?” she asked.

“Yes, yes, a cramp,” I agreed, thinking I was getting off the hook.

“A sharp pain?” she went on.

“That’s it, a sharp cramp, Bingo,” I said, none too sarcastically. Afterwards, I thought that description was right on the money, really. I just couldn’t think of the words. Odd, since I’m a writer and have a knack for finding accurate word choices. Why couldn’t I?

Emotion is deeply tied with pain and our memory of it. Finding words is an intuitive/intellectual endeavor that is hampered by strong emotion. It is no wonder that pain is hard to describe. But emotion is a necessary ingredient of experiencing pain. Without emotion, we wouldn’t be able to distinguish pain from other sensations such as numbness or tingling. Creating the emotion of pain is the body’s way of preserving itself. It distracts us and holds our attention so we’ll take care of it.

If only it were that easy.

As many of us have discovered, finding the cause and effective treatment of acute pain is much more successful and straightforward than chronic pain. With acute pain, say, you get a paper cut or break an arm; the pain subsides as the wound heals. In research, acute pain studies of animal subjects have been performed much more often and which have involved inducing superficial skin stimuli. But chronic pain involves the deeper tissues—muscles, joints and tendons–and is much more difficult to test, as the dearth of chronic pain studies proves. But it’s chronic pain that most of us with multiple sclerosis have had to suffer with and manage.

Do you have chronic pain? Have you ever tried to describe it? Have your doctors been at a loss to determine the root cause and pinpoint where it originated? You’re not alone.

Did you know there is simple chronic pain and complex chronic pain? The former can be managed by one clinician while the latter requires an interdisciplinary team of specialists who all believe in a biopsychosocial approach to treatment.

I don’t know about you, but my specialist team has not only not affirmed their commitment to such a philosophy, they haven’t even been formally introduced to each other and don’t think of themselves as part of a team with my other specialists, most of whom work in a different health system all together. Those who do operate in my local health system don’t confab with each other, either. Alas, it is up to me to chronicle and communicate all pain complaints and remind each doctor of it in each appointment with them—if it happens to be an issue. They won’t ask me about it if I don’t bring it up.

Though the above is a problem of integrative organization and access, the main challenge for the MS patient remains a problem of communication, the language of pain.

The number system of 1-10 has always seemed inadequate to me. A 3 or 4 is supposed to be less of a problem than a 9 or 10—but in the case of chronic pain, any low-grade pain can be quite wearing and debilitating over time, eventually disabling the sufferer in myriad ways that may seriously compromise their quality of life for years.

In the end, we have to tell them:  “Doc, it hurts when I do this.”

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. “Why is chronic pain so difficult to treat? Psychological considerations from simple to complex care.”  Weisberg MB1, Postgrad Med, Clavel AL Jr. , 1999 Nov;106(6):141-2, 145-8, 157-60; passim.
  2. Pain and Disability: Clinical, Behavioral, and Public Policy Perspectives, The Anatomy and Physiology of Pain, Institute of Medicine (US) Committee on Pain, Disability, and Chronic Illness Behavior; Osterweis M, Kleinman A, Mechanic D, editors.Washington (DC): National Academies Press (US); 1987.

Comments

View Comments (12)
  • Azjackie
    2 years ago

    My problem with pain is I am usually talking to myself – ignored.

    My doctor looks down writing notes or a prescription for looked when I explain, my family tells me I am too fat, my boyfriend walks away.

    My pain is a tearing, burning, stabbing in the thoracic spine intense enough to numb my right leg slowing me trying to move that I have wet my pants. If I take a road trip, I stiffen and my back starts to hurt so I wear incontinence pads. I have been known to pee by the side of the road.

    It is so humiliating to be 46 years old wetting my pants. Worse yet I don’t know if it is all caused by MS. I don’t know and can not afford to find out what it truly is. I don’t know how to explain the degree of pain other than being kicked repeatedly or driven over by a car.

    It’s as if when I speak the topic is so intense who I am talking to shuts down and doesn’t know what to say so they stop listening. How does someone relate if they don’t understand? How’s do I explain pain?

  • Susan
    2 years ago

    Jackie, please talk to your doctor about your bladder issues. There are a lot of things that can be done for that. If you feel your current doctor won’t listen to you there are lots of other doctors out there. I left my last neuro because I didn’t think he and the staff were listening to me or following up with things they said they would follow up with.

  • kkcurtis
    2 years ago

    Thank you for this article! I get so frustrated on this topic because every time the establishment lists the symptoms of ms, they never list pain, and when they do, they mention the burning, tingling pain. I have deep muscle and joint pain constantly, but the neuros don’t want to associate that with MS, yet almost everyone I talk to that has MS complains of pain. Pain is a symptom of MS and we need to educate the medical community that next to fatigue, it is the pain that can be the most debilitating factor in our daily lives. We are strong and when MS takes away our balance, vision, or arm and leg strength, we will find a way to still do what we need to do. But chronic, constant pain can’t be willed away or worked around. We need to find a way to get this component of MS recognized and seriously addressed.

  • Azjackie
    2 years ago

    I agree the number scale is an innacurate description. Since emotion is associated with pain I would probably answer 100 instead of 10. It took me about 5 years to describe the tearing burning broken feeling in my mid back. It is something I am destined to live with until I can afford the MRI prescribed as my insurance cancelled me.

  • nepatternmaker
    2 years ago

    Thank you for bringing this subject to the front page. I thought my chronic muscle pain around my right hip was due to my hip joint condition, however 3 1/2 months after total hip joint replacement the muscle pain is unchanged. I’m now wondering if this muscle pain is MS (dx in July 2015) rather than osteoarthritis in my hip. I don’t know how pain and MS go together and my neuro doesn’t want to see me if I don’t take any high profile (i.e. insanely expensive) ADA approved MS DMD’s. I do take vitamin D3 and baclofen and got favorable results on an MRI recently (less intense lesions) however the chronic pain is affecting my daily activities mor and more. Thank you again.

  • LuvMyDog
    2 years ago

    MarieFrazerm:
    Why on earth are you intimidated by your doctors?
    They are just ordinary people, people who are not perfect, they are not gods, although some of them think they are, and lastly, everybody squats to sh*t, doctors are no different!
    I was diagnosed with MS 35 years ago by a wonderful, compassionate neuro. who has since retired. I have not found another who can even come close to being as intelligent, unbelievably pleasant, compassionate and just plain on the ball as my neuro. of 23 years!
    Regarding pain…I think if a male doctor pushed the issue, asking me over again how acute is a particular pain, I think I’d probably have to say, “How acute would your pain be if I kicked you in the ba**s?!!
    Yep, I can be acutely outspoken and brutally honest and the older I get, the meaner I become. Do I care? Not one bit.

  • Azjackie
    2 years ago

    I think there is an element of intimidation for fear of losing the medical help.

    I was dropped by 3 Neurologists in 8 months due to my insurance AZMedicaid dropping me. Dropped because I make too much from SSDI (ha!) and not enough to afford treatment and medication.

    I found the only cash pay Neurologist in the entire state and qualified for financial assistance from the drug manufacturers. MS rules my life to give up all other medical treatments (mammograms, pap smears…).

    I say until I can afford the MRI through my occasional $10/month discretionary income and occasional $100/year BDay present from my Mom. I am starting over, my AC needed repair. I paid parts, my boyfriend replaced.

    It is terrible to rely so much on medical treatment for such a cruel disease.

  • Nancy W
    2 years ago

    This article and the illustration on the top make me realize how often I get intermittent pain in different parts of my body. I am prone to spasms. Bladder, bowel, esophagus, etc. I have not had any of it treated. I am just thankful that it goes away. Got me thinking about treatment possibilities.

  • Michraf
    3 years ago

    What a great article. So sick of the guessing game. No meds have worked or natural remedies. The pain is sometimes gone for a couple of days and I foolishly get my hopes up. Next try Hemp Oil with CBD. Fingers crossed.

  • Suzyq
    3 years ago

    I have always hated the number system. When you have lived many years in varying degrees of pain, you can tolerate much more than others. So my “6”, is probably someone else’s “10” or higher. Doctors and the nurses asking just do not get it. At my last PT, after the heat pack/ electrical stem and rest, the twit would ask “what is your pain # right now?” Of course, for 5 minutes, you feel better, so they put on your chart you are almost cured. Clueless people.

  • LuvMyDog
    3 years ago

    I am someone who is and always has been very outspoken. I say what I want to say, I do not mince words and I couldn’t care less about someone’s feelings. I tell the truth, I’m not a phony. I have found over the course of my life so far that there are very few (if any)who can deal with hearing the truth without getting their nose out of joint. That includes our doctors!
    When I am asked about pain…I find it very hard to try and explain to another person, a person who is not experiencing the pain that I am experiencing.
    Another person can not, by any stretch of the imagination, figure out or begin to feel the amount of pain another person is feeling.
    So, instead of using numbers…try using examples…let someone “try” to imagine what a particular pain might possibly feel like on their body.
    Think of the worst thing that could happen to that person physically, i.e., like somebody shoving a large rusty slot end screw driver directly into their bladder and twisting it!
    See…even reading that, it doesn’t have much of an effect because it’s not happening.
    So giving somebody a number, 1 – 10, makes about the same impression.
    The pain in my spine right now I guess would register at least a 10…but …who cares.

  • mariefrazerm
    2 years ago

    I wish I could be a bit more outspoken with my doctors. I would love to tell them You are not even trying to imagine my pain. I have gone to writing a journal like letter on my computer and log everything that would be important. At the bottom I always ask Do you have and questions for me. two of my 4 drs love my system, the other two still don’t understand I am intimidated by them when I have to talk to them. But at least they have a written document, dated that they can put in my files. It is just a suggestion that may help. Sorry if this is something that has been posted by someone else, I can only see two post. It is my first time writing. I fired my neuro because he kept telling me There is NO Pain in MS. I am looking for a new one 🙂 My PC is the greatest, It was pain that lead her to my seeing a neuro for MS unfortunately my describing Neuro has retired,, So I hand on the hunt. wish me luck.

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