A Pained Life: Pain Patients Need to be Heard

A Pained Life: Pain Patients Need to be Heard

I have trigeminal neuralgia.  It’s a facial pain disorder, arising from the 5th cranial nerve.  It causes intense pain, sometimes triggered by the slightest touch; the kiss of a light breeze or a strand of hair brushing against the affected part of my face. 

The pain could be so excruciating, it would bring me to my knees.  It is also, like most pain, invisible.  You can’t feel it, but I can. To believe in that pain you have to believe me, and you have to believe such horrible pain can exist.

Woman in painIt is this invisibility that tends to be the bugaboo. 

When pain is visible, it is usually because of the effect of the pain; a limp, a cast, bruises.  People believe what they can see. 

By the same token, when pain continues past the time they expect it to last, and after the visible signs have gone, the compassion and caring often go with it.

It is bad enough that pain hurts. To add the emotional toll of disbelief can be overwhelming.

I once dated someone who kept insisting I ride with him on his motorcycle.  Even though he was a doctor, he refused to accept my outright fear of the wind and wearing a helmet. 

“I can’t. The pain from the touching against my face. I just can’t,” I told him.

He knew what trigeminal neuralgia was.  He knew the horrendous pain. And yet he always said, “Sure you can. It won’t hurt you.” 

If a doctor who should know better refuses to believe, can we, should we, expect better from family, friends and colleagues?

It is not that chronic pain is invisible but that other diseases are seeable. Most other diseases also tend not to have the prescription of narcotic medication as a major treatment. 

Diabetics need their insulin.  But no one asks them, “Do you really need to take that shot?” 

Those with cancer rarely hear, “That radiation and chemotherapy. Is it really necessary?” 

It would be the bizarre person who said, “I don’t believe you have cancer.” 

But way too often those of us in chronic pain do get questioned or doubted.

“Your pain is not really that bad, is it?” 

“I know you could (walk farther, make the bed, tolerate touch) if you really wanted to.” 

“Is it fun taking OxyContin? What about codeine and morphine?” 

I have even been asked more than once, “If you have any extra pills could I have some?”

Part of the problem for pain patients is not only the lack of visible signs; it is the lack of knowledge about chronic pain, its existence and the disorders and diseases that underlie it.  People know about multiple sclerosis, but rarely do they recognize that MS can have chronic pain as a component. 

Many other conditions that have pain as the main or sole symptom are unknown for the most part.  Trigeminal neuralgia, complex regional pain syndrome (CRPS),  and even lesser known autoimmune diseases such as Lupus are rarely heard about. 

The other part is the media hysteria about the prescription drug “epidemic” that has demonized many of us for whom there are no other treatments but opiate pain medication.

In order for your pain to be seen and believed, you need to have something people have heard about, understand, or want to understand.

Cancer and diabetes are awful but their names are known. 

We need to be more proactive about getting out the word that chronic pain exists.

There needs to be wholesale education from all of us that chronic pain is not only a symptom but can be a disease in its own right.  The voices that have been the loudest have been those of  skeptics, who have made us the bad guys in the “war in drugs” and who downplay the reality of chronic pain. 

Until our voices are raised it will be hard to get the belief that comes automatically for so many other diseases.

Carol Levy150Carol 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.

National Pain Report welcomes guest columns by chronic pain patients and their caregivers.

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Authored by: Carol Levy, Columnist

There are 14 comments for this article
  1. zoraida carrucini at 10:53 pm

    I suffer FIbro, please keep me infrommed with articles as in Puerto Rico we don’t have many information as in the states. thanks

  2. Mary at 1:32 pm

    I know this isn’t for everyone, but they are making terrific advances with laser surgery for trigeminal neuralgia. I hope all of you with it could be candidates.

    I do understand that Shands Hosp. in Fl. has performed successful lasering.

  3. speedknob at 11:10 am

    I also have TN. I have been through therapy, and continue to do so at home, that makes the pain much more manageable. Before the therapy my life was not very productive; it’s hard to achieve much when you constantly get hit with all-consuming pain. It becomes your identity, because it is so intense you can’t focus on much else. And the medicine – I won’t even go there *shudder*. And then someone close to you will say, “I bumped my head the other day, so now I know how you feel.” Trust me – if you haven’t experienced TN, you don’t know what it is like. In this John Wayne world, if you don’t have a scar it can’t hurt – right? Wrong! That is a perception that must change.

  4. susan timberly randall at 8:55 pm

    I am so amazed at these stories. There are many people who GET IT! I know that this syndrome can just occur,usually in men over 50 and on right side. Mine is left side and happened on July 4th 2004. The man I was with were always having trouble. He hit me so hard it broke my nose ,broke the top orbital bone in 7 places, complete Blow out of bottom orbtal bone.I had alsoflown into the corner of a table. Very soon after,I knew something was very ,very wrong. I kept going to Emergency Rooms(many) It was always a “migraine”,gave me a shot.Sent me home.I was a very active hard working lady. I began taking over thirty Motrin,Aleve, Tylenol,etc..a day . I lost 4 jobs.Good ones. Now the Drs. treated as a drug seeker. I had to move back home where my children and ex husband had raised our children for 14 years. I could harldly function. I always knew when it started burning ,popping worse than usual,I had about 5 minutes to get somewhere I could lay down and writh In so much pain that I could not even hear myself scream.I can not even cry. It Hurts tooo much. Finally, after several Ambulance rides and E.R. visits. The only thing I knew for sure was that just a couple sips of beer (any Alcohol) would bring it on immediatlly.Otherwise I couldnt seem to figure what I was doing to bring it up to such a severe state. It was 2007 my family talked me into going to this little bitty town in Tx. Dr. who happened to be not only aP.H.D but also a chiropractor. He gave me a immediatlly diagnosed me with T.N..But didnt tell me what directly affected it since I had a severe brain injury. God led me to an old friend that I had not seen in 20 years. She had been in a horrible car wreck many years ago with severe brain injury. She had the same thing. I asked her what i kept doing to cause the severe bouts. She calmly said barometric pressure, weather! It took some time to get on a program to do expensive tests, by then I was becoming sicker and sicker. They found a good size aneurysm deep in my brain behind left eye. She got me to her DR. who had done extensive research with this.He has 4 of us. I eventually (2 yrs) became disabled due to T.N. in 2009 .At that time that was a milestone. No one believes you! They coiled the aneurysm.By then, I had several medical personnel go study up on this..Not to mention a lady Judge and Attorney. They had never heard of it. Last year a very good Dr. in Dallas lifted my eye up 5mm and out . cant Fix the T.N. That is the only way you can tell when Im very sick. My eyelid will fall,sometimes… Tegretol, Lyrica, I can never live without.Doc just doubled the Lyrica from 3 a day to = 6. I am allergic to Codeine which most pain meds are based on. I can take a Patch and other narcotics. I am prone to seizures. The drugs have their “Downside” but on a good day, i do okay. My friend I mentioned earlier had two exotic surgeries . She can not stick out her tongue, seizes daily .She can take and does all those pain meds,but allergic to Tegretol. Our Pain threshold is so high. It has to be. Medicine only helps so much. Then it seems , it is me against myself and others DO NOT understand. Thank the good LORD for my loving children. And one beautiful Friend

  5. Nancy fried at 10:17 am

    I also suffer from fibromyalgia & trigeminal neuralgia along with migraine headaches. The tri. Neur. Is exacerbated with stress to the point of debilitating. I do get medical Botox I ejections every 3 months to relax the muscles & rely on pain pills to cope with pain. Many patients with unrelieved trigeminal neuralgia do resort to suicide. It’s difficult to diagnose & the education about it needs to be increased.

  6. Terri at 3:22 pm

    We are being “maintained”, same as a person on high blood pressure medication, the diabetic on insulin. I survived a brain aneurysm in 2009. I had very little physical effects, which I will be eternally grateful for. But I have a whole lotta mental effects, including constant headaches. Nobody can see that. Even the people close to me have told me how well I can hide it, must be the drugs. Without the drugs, I wouldn’t be standing. Thank you for understanding. Yes, the pain lasts longer than 90 days. And yes, some days I need to use more than other days.

  7. Marilyn at 1:12 pm

    I tell people, “Pain is a very powerful thing, it can bring even the strongest to their knee’s.” Everything I do revolves around how bad I’m hurting, and people do not get it. Why I can’t do the things they do, because it hurts and it’s not worth it…..I understand, and stay strong…Thanks for sharing your story. M

  8. Barbara Rogal at 11:55 am

    I guess it’s good to know that there are others who deal with chronic paid but I do wish it weren’t so true -for anybody. I have so many sources of pain, I don’t know which to deal with first — chronic pancreatitis, sciatica, arthritis, dental issues which led to atypical trigeminal neuralgia (not pain just recurring numbness). Yes, I too am on opiates. That fact alone worried me but not any more. And then about 2 months ago I broke my back! Nothing helped but at least it wasn’t permanent. Hang in there everybody. For good or ill, at least we have company.

  9. Mark S. Barletta at 11:17 am

    It seems chronic pain and intractable pain don’t get the real recognition it should. In order for one to think your in severe pain the color red must be coming out of a persons mouth or other places. I was told my pain was all in my head and I told the doctor yes that’s where its registering in my brain that my body is in severe pain. I had to beg for a MRI to show these doctors the disc in my cervical spine where really messed up. The root sleeves in between my cervical disc are diseased and they lost their elasticity causing me a great deal of neck pain. Nerves being pinched to these out of control muscle spasms.
    Finally after suffering for 10 years I found a doctor that titrated me up to a level of relief using a time released pain medication and I couldn’t believe the pain relief I got.
    I was angry doctors made me suffer for so long when help was sitting on the pharmacy shelves going out of date.

    Thanks Carol for telling your story and giving others a chance to let people know these invisible illness people cant see can be one that causes the most severest of chronic pain ever imagined. I like your post in all the forums I see you in. I hope you continue to get the pain relief you deserve.

    Mark S. Barletta

  10. Polly Ramos at 5:21 pm

    Hello Carol, thank you so much for fighting for chronic pain awareness!! I suffer with Adhesive Arachnoiditis, a painful neuropathic disease. I agree that the whole world needs to know that we do exist….we are in pain….we are not invisible!!!!

  11. K27 at 6:23 am

    Thank you so much for writing this article. I too suffer from Trigeminal Neuralgia and encountered many of the same reactions from friends and coworkers that “I looked fine” so therefore I must not be sick. Pain IS a sickness and needs to be recognized as such. I know what it is like to fear even the smallest activities, such as accidentallly rolling over in the middle of the night to the left side of my face (where I had my TN). It effects every part of your life and I was somehow able to hold down a job through the 3 years where it was the worst. In 2010, I had the Microvascular Decompression surgery which relieved my pain for a full year, but then it came back. So on top on TN, I now have a hole in my skull, 2 metal plates and screws in my skull that cause pain. I too have been asked by others, do you really need to take that? Why aren’t the medications (anticonvulsants) working? The same with asking for extra pills by random people. Then, you do feel the shame and somehow embarassment when you go to the pharmacy to refiill your prescription. for something you are actually taking legitimately. They look at you like you’re an addict. So, in closing, thank you for making this a topic of conversation. Luckily for me, I’ve had a solid 3 weeks pain-free and hope that somehow it stays that way. Best of luck.

  12. Unhinged at 10:49 pm

    Carol,

    You describe so perfectly what it is to live with the burden of not just chronic pain, but the invisibility of it. Particularly the variety that accompanies rare or little known conditions. Thank you for being the voice for so many of us who deal with this reality quietly, sometimes shamefully, and often alone…. We are usually treated as if we are guilty of some horrible crime. The hideous, unthinkable, crime of needing relief from daily, unrelenting, severe chronic pain. The nerve of us!

    I have a genetic connective tissue disorder, called Ehlers-danlos Syndrome. Another one of those, “you have WHAT?” disorders. Though I look perfectly healthy, I’ve suffered from years of major joint dislocations (shoulders, wrist, foot bones, SI joints, knees, cervical spine….), pelvic separations, skin, eye, GYN & GI issues, spine abnormalities, major surgeries, etc… My worst symptom has been severe chronic pain. I spent years being misdiagnosed over and over, seeing specialist after specialist, trying numerous alternative treatments, PT, multiple medications trials of various classes of drugs, prayer, meditation, and everything else that was suggested to me, I eventually became completely hopeless. My entire life revolved around my PAIN. The one and only appointment I had with a pain specialist (at a nenowned Boston Hospital), I was never even examined, was given no sympathy, kindness, compassion or hope, and was told that if I took opioids, I would develop Opioid Induced Hyperalgesia.

    Shortly afterwards, I was referred by another doctor, to a wonderful geneticist, and diagnosed me with Ehlers-danlos Syndrome. I learned that EDS is genetic, life-long, and incurable. Symptoms are managed, and modifications in lifestyle can be made, but there was no cure for my daily, debilitating, pain. What I have learned since, is that most doctors want nothing to do with patients who have incurable conditions that cause chronic pain. In my case, as in yours, I also have episodes of severe acute pain.

    I am currently, and gratefully, treated with daily opioids to manage my pain. I am sure, that without the kindness, compassion, and expertise of the doctor who treats my pain…. I would have died by suicide by now. Not because I didn’t want to live, but because a person cannot without relief from debilitating & disabling, chronic pain.

    Most people have no idea of the torture of invisible chronic pain. I am sorry that you and I know it so well, but i am very grateful to know that there are others who understand, care, and empathize…. and can still live inspite of it. With the current hostile, panicked, atmosphere of the opioid debate, we really do need to have our voices heard. The fact that there are groups of doctors out there, that think people like us should be able to “tolerate” this pain, is positively insane. The fact that some of them doubt the existence or severity of our pain is just plain crue and inhumane.

    Thank you for your honesty & insight. I look forward to reading your book!

  13. E11 at 9:28 pm

    Thank you for your article, highlighting the often over looked fact that many disabilities and/or pain, are not always visible.

    I too have a form of Trigeminal Neuralgia (2nd branch), and if not for the few visible scars from the multiple reconstructive surgeries, which caused the condition in the first place, most cannot tell I live in almost constant pain.

    Riding a motorcycle has been on my “bucket list” for far too long it seems…but I know the consequences of riding, especially if I were to drive, could prove fatal, as the wind hitting my face could send my face and brain into horrific pain. Simple things like going to the beach, riding a bike etc., are not so simple. Most the time I wear a scarf around my head in Florida Summer.

    I don’t think people can fathom that there are some conditions out there, like trigeminal neuralgia, also known as the “suicide disease”, can be so painful, that brushing teeth, or an attempted kiss on the cheek can create pain for hours. I want to pull out my hair when I suddenly hear my parents so concerned about shingles, because of all the commercials about it, and how painful it can be…I KNOW how painful shingles can be because I have a permanent form..they, I would hope, finally have an understanding of the pain I have had to endure for almost 15 years now..all the hurtful things they have said about me, medications etc., for once I wish someone would show the empathy, as this isn’t a condition I would wish on a anyone…though honestly lately, been thinking the DEA, Pam B., PROP, pharmacist could possibly endure a month or two of it to finally get that there is REAL PAIN out there, and it really doesn’t go away..ever, especially after some arbitrary time frame of say, oh 90 days. Thank you for sharing your story.