The real impact of pain that people cannot see

January 19, 2018

Pain is one of the most intrusive things we can experience because it impacts nearly every aspect of our lives, especially if it is chronic. As Bonnie Prudden said, “Pain, not death, is the enemy of mankind.” I have lived with pain most of my life, but nothing ever so intense as the pain that came when I developed dystonia nearly 20 years ago. The emotional toll of pain can be just as bad, and sometimes even worse than the physical pain. It is remarkably difficult to understand, so to add insult to injury, we are often judged by others because they can’t see our pain.

Most people can relate to short term pain or temporary limitation when they are sick, but life offers a whole new set of challenges when the condition is chronic, particularly for those who were once in good health. Losing one’s identity, abilities, and choices that many often take for granted is the reality of chronic pain. Adapting to a life filled with pain and debilitation (mental and/or physical) makes it so you are always being tested to the limits. It is exhausting, to put it mildly. The image below is the reality for many of us.

When my dystonia symptoms first began up to a few months before being diagnosed, I had little to no pain in my neck or back. Over a period of about 8 months, my pain increased exponentially to the point that I could barely function. It felt like there was a power drill continuously going into the base of my skull which radiated down my neck into my shoulders. It was a miserable existence.

I didn’t know pain like that was possible. It reminded me of how it felt at the exact moment I incurred an injury; the kind of injury where the pain takes your breath away for a moment. Unlike those instances where the pain subsided in a short period of time, the pain from dystonia never left. It was like I was experiencing the sensation of pain at the point of injury over and over. It literally took my breath away.

I used to listen to people complain about an ache or pain and say to myself in anger and frustration, “if they only knew what real pain was like!” I understood what pain was like from many sports injuries and other aches and pains throughout my life, but pain from dystonia is a different beast. It took me a while to appreciate that pain is relative to everyone’s own experiences (we only know what we know) and pain of any kind can impact quality of life, so I no longer pass judgment.

Life impact of pain
If you suffer with chronic pain, you not only live with the unrelenting sensation of pain, but probably have trouble sleeping, you may experience anxiety, depression, and loneliness, and possibly have difficulty making decisions because pain can impact our ability to concentrate.

Brain activity in people who suffer with chronic pain is different from those who do not. In a healthy brain, all regions are in a state of equilibrium. When one region is active, the others quiet down. In people with chronic pain, the prefrontal cortex, the location for cognitive, emotional, and behavioral functioning, is always active. When this region is stuck in full throttle, neurons can change their connections with other neurons making it more difficult for people to concentrate, solve problems, make decisions, or be in a good mood.

As mentioned, sleep deprivation, anxiety, and depression often accompany pain, and there are physiological reasons for all this. Areas of the brain responsible for sensory stimulation are also responsible for controlling our sleep and wake cycle. When there is overstimulation, it makes it difficult for the brain to rest. Anxiety is also a very common because reduced control over pain signals causes the brain to become extremely vigilant in anticipating future pain. We are almost always on edge, essentially living in fight or flight mode. Reduced control over pain signals also contributes to depression due to chemical changes in the brain, as well as an exhausted feeling of helplessness and hopelessness. So, pain contributes to anxiety and depression, but also the other way around. It is a vicious cycle, each feeding off the other.

For pretty much anyone living with chronic pain, you know exactly what I am talking about. We not only battle physical pain on a regular basis, we battle a very significant emotional toll as well. Then for people to say things to us like, “just get over it,” or “just push through it”, it in no way acknowledges the complexity of our pain.

Pain managment
There are many ways to treat/manage pain including, but not limited to, surgery, medications, nutrition, acupuncture, chiropractic, massage therapy, cranial sacral therapy, physical therapy, behavior modification, biofeedback, prayer, meditation, and rest/relaxation therapies. Another important component to pain management involves regulating your daily schedule so that you have the right balance of activity, rest, social interaction, quiet time, and energy-giving activities.

I am still in pain, but not as bad as it once was. It is very hard for me to say what helps most because I do so many things. One or two things just isn’t enough to break the cycle of pain, adrenaline, pain, anxiety, pain, lack of sleep, pain, racing mind, pain, depression, pain, etc. I will write a more detailed blog about the things that help me most in the near future (you can also get my book which has all of this and a ton more info about living well with a chronic condition), but in brief, medications, nutrition, moderate exercise and stretching, topical lotions, GABA, ginger root, CBD oil, massage, Oska Pulse, acupuncture, trigger point tools, ice, heat, TENS unit, meditation, sleep and plenty of rest during the day, Laptop Laidback, healthy relationships, stress management, not being so hard on myself, saying “no” without guilt, confronting and overcoming anxiety and depression, finding meaningful activities, breathing and mindfulness activities, drinking various smoothies, music, dancing, abdominal work, swimming, hobbies, taking on projects to feel a sense of accomplishment, relationships that make me laugh, but are also deeper than surface level, and most importantly, how I think about things and process life events.

I know this list is long, and there is more that I do, but the point I want to make is that all of this has become part of my lifestyle, so it is not as daunting as it may seem. There is very little stress involved doing all these things, which is critical because the mind/body connection is so important; more so than we often realize. To that end, I do my best to remove toxicity from my life, be it people, the environment, my thoughts, or what I put in my body. I also avoid noxious stimuli that overwhelms my nervous system (certain lights, sounds, environments), and how much I push myself beyond the boundaries that my body can handle. Ultimately for me, a major change in lifestyle and accepting that lifestyle is the key to my ability to better manage my pain and other symptoms. I have also decided to simply be as happy I can no matter what is going on in my life.

As you can see in the photos below, I have come a very long way. I still have far to go (pain and other symptoms I feel that you can’t see), but the point I need to super emphasize is that the way I have been able to get improvement, and lasting improvement, is years of daily dedication to all the things I mentioned. I also needed to learn to accept my situation and the make the most of it. I had to get rid of the intense anger, resentment, shame, blame, depression, anxiety, and every other negative emotion for my body to begin to heal. I still slip and have really bad days physically and emotionally, but I don’t let them overtake me because I know that these things I do every day will keep me on the right track.

Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and author of the book, Diagnosis Dystonia: Navigating the Journey. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, and volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, for WEGO Health as a patient expert panelist, and is a member and writer for the Chronic Illness Bloggers network. To learn more about Tom, subscribe to his free health newsletter, and get a copy of his book, visit www.tomseaman.org. Follow him on Twitter @Dystoniabook1 and Instagram

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24 responses to “The real impact of pain that people cannot see”

  1. Martha says:

    Thank you for all that you do Tom. I have not been through your entire blog or website yet, but I have a positive sense that you are a wealth of knowledge for those of us that live with dystonia. I was diagnosed with torticollis at age 17, I’m now 58. Approximately 12 years ago I was introduced to “rolfing”. I was fortunate enough to meet a physical therapist that was practicing rolfing. I’d worked with many doctors and therapist before with only hope of relief. I had so much pain that I thought that people could see it. Rolfing helped to reduce my chronic pain to something manageable. I would recommend it to anyone that lives with chronic pain. My particular therapist was able to make use of my health insurance and this was a huge bonus.

    • Tom Seaman says:

      Hi Martha- Thanks very much for your message. I love “rolfing.” I am so glad to hear it has been helpful for you. I know what you mean when you say you had so much pain you thought people could see it. I felt the same way for a while. It can get quite scary. I am really glad you mentioned rolfing because not too many people have heard of it and I think it is something people could try. No stone left unturned…

  2. […] fun loving go-getter. I am getting more of that person back despite still living with dystonia and chronic pain, but it has taken a lot of work and, to keep in context with this article, I had to take a new and […]

  3. […] a tremor. Dystonia can affect any part of the body, causing varying degrees of disability and pain from mild to severe. In some cases, dystonia exists without visual symptoms. Some people have […]

  4. Terri Skarsten says:

    Hello Tom, As you know I found out years later I did not have dystonia now they are doing epidurals on me and triggers in between, chronic pain is no joke then add the immune problem I can get sick so easy. Then add 3 kids and a hubby on 3rd shift and let me tell you right now this has hit me hard and right to the core and is so true. Thank You My Friend

    • Tom Seaman says:

      Hi Terri- What you have been through, all the while functioning so well with so many responsibilities, is truly humbling.

  5. A. V. says:

    I struggle watching my 14 year old in pain all day. The dystonia has taken over his body from neck to toes. He goes into such severe extension I cannot imagine the pain. We have tried and continue trying every medication and stress management possible. I feel so terrible when he has to ask for help to hold him still on the toilet. No young man should have to do that. Sorry for the vent, i appreciate the awareness you help to bring to this “unknown” disorder

    • Tom Seaman says:

      No need to apologize at all. Thank you very much for sharing. I can only imagine how hard it is to watch your son in so much pain. I remember when my symptoms were at their worst and I felt bad for my parents who felt so sad and helpless, not knowing what to do to give me relief. But just knowing they were there for me was a comfort that was priceless and helped tremendously. I don’t know your son of course, but I would bet he feels the same way to have someone so loving and caring as you. If I can ever do anything to help either one of you, please don’t hesitate to get in touch.

  6. harriette says:

    Very good article. It’s validating and sad at the same time. Thank you for being our advocate and sharing your knowledge with us so freely. You have no idea what it means to me and most likely to all of us.

    • Tom Seaman says:

      Thank you Harriette. It is a sad situation for sure. I hope continued efforts will alert the powers that be that we need advancement in treatments and greater support systems in place to help people traverse these scary waters.

  7. Laurel says:

    I asked my husband, of 28 years, to read this. He said it was what he’d already understood. (As my mother said ‘He’s a keeper.'”
    I asked if someone, in my family, would benefit from reading this. He sighed. “No. She thinks you’re faking it. So, she wouldn’t benefit.”
    Thanks for the article.

    • Tom Seaman says:

      Not many people get it so to have someone close to us who does is such a comfort. I’m sorry others are unwilling to be so cooperative and understanding. Hopefully they will come around. It takes time for some. It wasn’t until I wrote my book that certain people really understood what I went through. My relationships have improved greatly since then. I hope some of yours do as well.

  8. Donna Toothman says:

    Yesterday the pain was so bad I vomited. It started Saturday evening, brought me to tears. I was afraid I would wake with the same, thankfully not so. I know how being in constant pain has changed me. I don’t like the change and continuously try to manage my emotions so as not to be one who is mean in pain. Who I was is gone, who I will become living with chronic pain is someone I have yet to welcome. She does not laugh as much and, she has an edge she never had. She fights to keep her sense of humor. She struggles with those she loves because they don’t get and honestly they can’t. She is more sensitive to others struggles. She somewhat understands the opiate addictions for when she takes pain meds it feels wonderful. Thankfully she is capable of mindfully rejecting the ‘wonderful feeling’, knowing just beyond that is an addiction. Tom, you have come such a long way, and your caring and sharing have helped me and so so many others. You help me try harder, to be happy every moment. My thoughts…me personally. Thank you…

    • Tom Seaman says:

      Thank you very much for sharing and being so open. People need to read these things to know they are not alone. Help is just a click and a message away. I am so sorry your pain was so bad yesterday, and that you have to suffer with pain at all. It is a life changer for sure and what you said will resonate with so many people. Thank you so much, and thank you for what you said about me. It means more than I can put to words…

  9. Sheryl says:

    This is so true. When people say along the lines of ‘stop being depressed’ or ‘push through’, I’d be there thinking, ‘you have no idea what pain is. No one *no one* walks away from pain as a winner’. I know you know what I mean 🙂 x

  10. Connie Mason says:

    Thank you Tom for sharing and caring. Excellent article.

  11. Beth says:

    Thank you for your blogs, Tom. They have helped me and encouraged me with my ups and downs of dealing with cervical dystonia the last six years. Is this a format/place that I could ask you a question?

    • Tom Seaman says:

      Hi Beth- Thank you very much for the very nice comments. I am really happy to hear that these blogs have been helpful. You are more than welcome to ask me questions here or send a message through the contact link. I am happy to help in anyway I can.

  12. collettehurley says:

    Thank you so much Tom, as always you are inspiring. All best wishes.

  13. Alice Denne says:

    that was a great read thank you Tom

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