A Pained Life: Easy Fixes

A Pained Life: Easy Fixes

It is not often that people ask me about my pain. When it does come up, I say I have trigeminal neuralgia. If necessary, I explain what that is, and describe the pain and what triggers it.

I also tell them that I am very lucky. I had a rare spontaneous remission of the worst of my trigeminal pains: the pain triggered by touch, spontaneous pain, and, in my case, constant pain.

I also have eye pain. Unfortunately, that pain — from any sustained eye movement or eye usage — does not stop. It is what continues to keep me disabled.

Pirate_patchWhen I tell people that, I’m often asked, “Can’t you just patch the eye? That should stop the pain.”

It sounds logical. One eye hurts and the pain comes from using that eye. So it is easy. Just don’t use that eye! The problem is eyes do not move independently of each other. The right eye moves and the left eye automatically follows the right’s movement.

I used to get annoyed when this conversation occurred. There was (and is) often an undercurrent of: “How silly of you. The pain could easily be stopped if you thought it through.”

I think all of us have told someone about our pain only to have the other person look at us askance. “Why don’t you just use a heating pad, bend a different way, or use a hose instead of a watering can?”

They seem to think we are silly, or worse, for not thinking of such simple fixes ourselves.

When people say they have eye pain too and try to equate it with my pain; when I read the experiences of others in various chronic pain support groups and hear this theme repeatedly, it is hard to know how to deal with it.

Sometimes the other person wants us to know they understand having the same experience. Other times, unfortunately, the person uses it as a competition or a refusal to accept that we may be in a much worse situation then they are.

If it is the latter, there is not much that can be done. It is one of those times when you have to make an active decision as to whether you want to keep that person in your life. It is a decision of which is worse: Dealing with their drama or taking the possibly drastic move of ending the relationship?

If we are lucky, we do not have to consider either of those.

The other person honestly wants to help us, honestly cares, and truly wants us to not have pain, or at least to have less pain. Their suggestions on how to “fix” the pain is through the lens of their own experience, usually acute pain with relatively easy answers; tincture of time, don’t use the arm for a while and so on.

The “fix” is on both sides.

They can be fixed through education, and a willingness to accept who we are and what we have to deal with.

On our side, our fix is learning to take the help and support that is offered — even when it is not what we want to hear.

And cleaning out our lives when necessary.

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.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Carol Levy, Columnist

There are 7 comments for this article
  1. Celeste Cooper at 6:59 am

    Carol, this is a very good article for anyone who suffers with invisible pain. I do understand having had migraines for almost 50 years now with TN. The unpredictability of TN is like the flares of many chronic disorders, but I doubt anyone knows the pain unless they experience the same thing. I often think people respond to us for one or two reasons, they don’t know what to say, or they are of a group of people that that believes their comments are true, that is until it happens to them. It’s funny how reality can change perspective.

  2. Stephen S. Rodrigues, MD at 4:22 pm

    After my battle with TN, I see it much differently now. I’m a witness, survivor, advocate, pain care provider and scientist. I pray for those who suffer with this scourge of humanity.

    I hope the people in power will open their minds to rethink the modern concepts of TN and long-term pain. TN is not what is written in books and on websites. TN is much more complex, involved, enigmatic and unpredictable. I had underestimated it’s tenacity and venom. I know better now.

    This will upset those who do not know, but like all long-term pain syndrome if caught, attacked aggressively early before it devolves the flesh, treatment can be relatively straightforward. On a comparative bases, easy.

    Easy means office visits weekly, every few weeks and then every few months of therapy.

    Hard means daily, weekly, every few weeks, monthly, every few months and yearly treatments for a many years. How do I know? I have many cases I have had to followed for 5-10 yrs.

    I have tried to contact the TN group folks and only got shooed away because I see pain differently. Time is passing! The leaders, researchers, writers, advocates and scientist will one day acknowledge or rediscover was or is already known about the treatment options for chronic or long-term pain.

    Unfortunately, most if not all the treatment options are not covered benefits and are costly so you all are caught in a catch 22. A place designed over a few decades, I think, by dastardly behavior.

    Policy makers need to be notified to change the rules, regs and benefits so that the out of pocket cost can be reduced or eliminated. The HHS need to be notified so they can raise the numbers of providers who can address these needs. Medical Schools and the AMA need to rethink the terms and categories so that long-term pain can be diagnosed earlier so that people do not suffer long-term misery. People should not fear or be timid. Raise your voices or the profiteers will continue to control your destiny.

    I have an idea for another Change.org petition which may allow you to see this predicament with more clarity. The struggle continues.

  3. Brandon at 8:25 am

    Great article, I am sorry to hear you are in so much pain. Maybe one day there will be a way to fix it.

  4. Marci Gower at 8:56 pm

    Once again, a relatable column. Thanks Carol.

    Having had RSD for 20 years, I have explained and tried to educate and raise awareness for two decades now. I find there are some who are genuine and want to know and care (and empathize) and those who compare and compete or offer pithy unhelpful comments. Ultimately it is up to ME how to react, and yes, even a good clean out is okay and even necessary. Now that I’ve come to that realization I’ve found that is yet another tool in my healing toolbox and I’m much better for it.

  5. Amber Rose Dullea at 6:03 pm

    As always, I love to hear your perspective and your experience. It reminds me of the cartoon, “Doctor, it hurts when I do this.” The doctor says, “Don’t do that!”
    One of the things that brings me hope is that nothing is static. Even chronic pain has the ability to be changed. All the research about neuroplasticity shows me that nerves can be changed. I love the visualizations, meditations, breathing, and attention exercises that are out there. But when we are in pain, at least for me, it can be difficult to remember even the simplest ideas.
    Thank you for continuing your work!