A Pained Life: Let the Words Flow

By Carol Levy, PNN Columnist

I ended my last column with my favorite saying: “You don't know what you don't know. And if you don't know what you don't know, you don't know what to ask. Our doctors need to ask.”

A couple of days later, I thought about the column and my second appointment with a neuro ophthalmologist, a specialist in nerve disorders that affect the eye.

I didn’t know that my parents were still carrying insurance on me, so I was going to a low-fee clinic in New York City, where I lived at the time.  It took almost a year, but finally one of the residents there decided I had trigeminal neuralgia. Even with a name for my condition, they still didn't have a clue what to do for it. Or with me.

When I realized that I could afford to see a private doctor, I returned to one I had seen years ago.  He referred me to the specialist.

The first appointment did not go well. He told me the disabling, horrendous facial and eye pain I had were caused by anxiety. At the end of the appointment, he patted me on the head, handed me a prescription for an anti-anxiety drug, and sent me home.

I was mad. Another "I dunno" exam that ends with a doctor saying, "It's psychosomatic." I debated if I even wanted to keep the second appointment, but what else could I do?  A feeling I think many of us have.

At the next appointment, I repeated my story of how the pain started, what it felt like, and what it was doing to me.  Again, he was unimpressed. He turned away from me, saying nothing.

Then, just to fill the silence, I said "You know, the other day, for a few seconds, I thought the pain was done and gone."

He abruptly turned back towards me. “What made you think that?” he said, the vehemence in his voice surprising me.

“Well, a lady on the bus inadvertently touched the left side of my face, where the pain is,” I explained. “And the pain didn't start. I was so, so happy. Until about 20 seconds later, when the lightning bolts came.”

The doctor walked over to me, and without missing a beat said, “I think it's time we brought you into the hospital.” I was startled and dumbfounded. In the span of a minute, he went from nonchalant to alarmed. I didn't think to ask why.

I was in the hospital for 52 days. After many tests and workups, they decided I should have brain surgery. The surgeon would cut away the numerous tiny little blood vessels that were wrapped around the part of my trigeminal nerve that gives sensation. The surgery only worked for three months, but it was a glorious three months.

Sometimes, it's the minor things: a change in the way pain feels, a new area of pain, or a change in how and when it happens. We may think, why bother the doctor with this? He won't care anyway. It's unimportant. If I tell him, he may think I'm a dolt or making things up. I’ll keep it to myself.

Which brings me to my second favorite saying: “You don't know what you don't know. And if you don't know what you don't know, how will you know if it matters?” 

Sometimes our deciding what a doctor doesn't need to know may be the one thing he needs to know the most. It may really matter. So let the words flow.

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

What If Pain Had a Color?

By Carol Levy, PNN Columnist

What if your pain had a color? Not a color picked to honor an awareness day or month, but an actual color?

I could walk into the doctor's office. “I understand you have pain. Where is it located?” he’d ask. I’d point to the area. It was a bright chartreuse, as blinding as a neon sign.

“Oh yes. You definitely have pain. Let's see what we can do about that,” the doctor would say.

Wouldn’t that be simpler, easier? Unfortunately, it isn’t.

After the trigeminal neuralgia pain started near my eye, I was referred to a neuro-ophthalmologist. Our first meeting did not go well. The level of pain, the resulting disability, and its effect on me made it hard to tell my story in a calm and thoughtful way.

Stopping to collect my emotions, gather my thoughts and make sense of what made no sense, I started and stopped, my words coming in fits and starts. I struggled to control my emotions and not cry.

After a few minutes he stopped me. “Stop being so schizophrenic in how you're telling me your story,” he said. “Your pain is the result of anxiety.”

I didn't understand what he meant. No pain like mine could just be the result of nerves. He wrote a prescription for an anti-anxiety drug, but that only increased my stress, and the anger I felt towards the pain and medical profession.

Undaunted and with hope unfettered, I kept the next appointment. Again, he listened. He still seemed unimpressed with my pain and my story. But his interest was piqued by a birthmark on my forehead directly over the area of the pain. He noticed it would turn a brighter shade of red during various times of the appointment.

I was prissy back then. I hated cursing and embarrassed easily. He was not averse to using profanity, and just one or two words was too much for me. When he cursed, the birthmark would turn bright red. That changing of color and in the way my pain was triggered changed his feeling about my pain. He seemed more interested in it.

“I think it's time we bring you into the hospital,” he told me.

In those days, a doctor at a teaching hospital would be trailed by medical students, interns and residents. Like goslings imprinting on their mother, they followed the doctor everywhere.

When the group came to my room, the doctor wanted them to see how and when the birthmark changed color. He explained to them it was an outward sign of a neurovascular birth defect that he believed was the cause of my pain.

It was a teachable moment and the doctor liked milking it. He knew how easily I was embarrassed and how that would change the coloring of the birthmark. To get it to turn bright red, he jokingly threatened to expose himself (this was in the 1970’s). Immediately it changed color. I was so embarrassed.

It got to the point where all he had to say was, “I'm going to…” And like Pavlov’s dog, the birthmark turned bright red. He did that trick for his lot of ducklings, who were amazed.

My pain still did not have a color, but the changing color of the birthmark showed a visible, anatomic reason for it. It made my pain more real to others. If not for the birthmark and the trick of turning it off and on, the correct treatments might not have been tried.

Cancer patients have lumps or growths. Jaundice turns you yellow. Us? We have nothing but our word. Until pain has a color, our word has to be enough.

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

A Pained Life: I Was a Platypus

By Carol Levy, PNN Columnist

Have you ever seen a platypus? The semiaquatic mammal from Australia that lays eggs and is duck-billed, beaver-tailed and otter-footed?

It’s hard to believe it is actually one animal. In fact, the first European scientists to examine the body of a dead platypus thought it was fake, made from the parts of several different animals that were sewn together.

To many doctors, people in pain are platypuses.

When my first symptoms of trigeminal neuralgia started many decades ago, a patient had to have three specific diagnostic signs.

The pain had to be spontaneous and triggered. Mine was. It had to be in a very specific anatomical area of the face. Mine was. You also had to be over 60 years of age. Or, if you were in your 40's or 50’s, you had to have multiple sclerosis.

I wasn't in my 60's and didn’t have multiple sclerosis. Therefore, because of my youth – I was 26 at the time -- it could not possibly be trigeminal neuralgia. “It looks all the world like trigeminal neuralgia. But it can't be, because you're too young,” one doctor told me.

Two of my symptoms were by the book, but the last one, my age, was like the otter's feet. I was a platypus.

Things have changed a lot over the years, The criteria for a trigeminal neuralgia diagnosis have changed significantly. The pain can have a number of different characteristics and the association with old age was completely wrong. Even toddlers and newborns can have it. Age doesn't matter.

Complex Regional Pain Syndrome and other chronic pain disorders have us presenting many different symptoms to our doctors that, on the face of it, don't make sense. Many of us complain, rightfully so, that the doctor didn't listen when we described our symptoms. Some may fit a specific disease or disorder, while others do not.  

The doctor seemed to listen, but heard only one or two of the symptoms while ignoring others -- the ones that didn't fit their preconceived notion of what we might have. Or didn't fit the textbook description. As a result, we often don’t get the correct diagnoses, and without the right one there is no way to treat the condition or pain correctly. 

When pain became a specialty of its own, when doctors started opening practices solely for those of us living with chronic pain, it seemed like a godsend. We would finally be seen for the singular entity we were -- persons living with pain --- not some platypus that doctors saw as too bizarre to be real. We would be legitimized. 

Unfortunately, since they started taking the “war on opioids” out on the chronic pain community, making us the villains, it seems our legitimacy was lost. 

We are not like patients with other diseases like cancer or diabetes, where the diagnosis is straightforward. We still have to fight to be believed, and to be heard.

It took time for platypuses to be seen as real, more than just an oddity of nature. Let’s hope that someday we will also be believed and accepted. 

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

A Pained Life: Me and My Shadow

By Carol Levy, PNN Columnist

Pain shadows a lot of life's experiences. If I'm pregnant, at some point I'll think about childbirth – and the horrendous pain of labor. But to torture a musical metaphor, at the end of the shadow, the sun will come out tomorrow. At the end of labor, the pain stops, and the happiness of a newborn baby is the result.

If I'm going to have surgery, I may think about the pain that comes after surgery and during recuperation. But I can also be buoyed by the knowledge that at the end of my recovery, the pain of what brought me to a surgeon in the first place and the pain of getting over the operation will be gone.

When I have an appointment with a dentist, just thinking about the appointment is painful for me. The visit means triggering my trigeminal neuralgia facial pain as soon as they ask me to “open wide.”

There will be no sun, just shadows. The appointment will end, but the pain that was triggered will last for hours. I can’t run away from it.

Another dental appointment will have to be made, hopefully later rather than sooner, and I will be forced to invite the pain back again.

Is the pain awful when it is triggered or is it the fear of it being triggered that sets it off? Some doctors will say it is psychological and that fear is causing the pain, not the actual actions that trigger it.

Is this true? Sometimes I like to think it is. After all, if it is fear, then I can try and work on it in my mind, to release myself from its prison. If it is the pain, and when or how they will set it off, I cannot talk myself out of it.

There is no way to negate the reality of the pain or its triggers. The sun does not come out for us and the shadow of fear is not a metaphor. Pain is our reality. The fear of setting it off can be as dark as the pain itself.

That’s something that we and our doctors, colleagues, family and friends need to understand and accept as the truth of our life experience. And the reason we are often unable to participate in life.

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

We Need To Do a Better Job Educating the Public About Chronic Pain

By Carol Levy, PNN Columnist

It seems the pain community is so sharply focused on opioids that we tend to ignore what may be a more important issue: getting the public to understand chronic pain.

I hadn’t given it much thought, but a recent conversation with a friend brought it home to me.

“Jennifer” believed that someone with gender or sexual identity issues could be helped through talk therapy, mindfulness and relaxation techniques. Basically, anything that would take their minds off their struggles with sexuality.  

I told her people in pain get some of the same suggestions.

“What you're saying reminds me of what many people say about those of us in chronic pain, that psychotherapy, mindfulness and relaxation techniques can relieve our pain or even cure it. In reality, they don’t,” I said.

“Oh yes, they can,” Jennifer replied. “You have pain management doctors who offer mindfulness, psychotherapy and relaxation techniques. So, you do have cures.”

I shook my head, somewhat in sorrow.

“No, people who have incurable disorders like mine, trigeminal neuralgia, or other painful diseases like CRPS, Ehlers Danlos, lupus or multiple sclerosis won’t be helped by mindfulness or talk therapy. Those types of things don’t end the pain or cure the disease.”

To my amazement, this woman who holds her convictions very dear, replied, “You just taught me something. I didn't know that.”

And why should she? It is rare, if ever, that we hear chronic pain conditions called by name. The media doesn't do it, and we don’t usually hear or say it in general conversation. The name of the disease or disorder, and the level of pain they cause, usually go unmentioned.

We do hear about back pain, knee pain and other “aches and pains” that can be helped by braces, heat therapy, relaxation, and so on -- which helps further the belief that chronic pain is easily treatable. That is not to say back pain can’t be as debilitating as other disorders, but it is so common that it is taken for granted.

I think some of the blame falls on us. Many people think we act like addicts when we clamor for opioid medication. We resist efforts to reduce the dose and refuse to consider other therapies, many of which we’ve already tried.

We ignore the reality that we do not have a “right” to opioids. We have the right to get healthcare when we go to the doctor, but they have the right to decide what therapy and medications they will prescribe, if any.

As long as we spotlight our need for opioids, while ignoring the public’s lack of knowledge about painful diseases and disorders that can’t be cured, the more I fear we will continue to be ignored and disbelieved. And the more we’ll hear about talk therapy and mindfulness.

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

A Pained Life: We’re Not ‘Normal’ So Don't Expect Us To Be

By Carol Levy, PNN Columnist

I recently contacted a local social service agency for help. They sent a social worker and wonderful lady, Margaret, to come to my home.

The first thing she did was a “depression inventory,” a questionnaire required by the service. The questions were pro forma, and if I was a “normal person” were probably an appropriate way to see if I was suffering from depression. For someone in chronic pain, not so much.

Margaret asked me, “Are you basically satisfied with your life?”

The choices were “Yes” or “No.” The questionnaire allowed for no other answer.

No, I am not satisfied with my life. I am mostly housebound, due to trigeminal neuralgia pain and the fear of triggering more pain if I go out. My reasons for being dissatisfied with my life are legitimate. It is not a sign of depression, but of my reality.

“Have you dropped many of your activities and interests?” Margaret asked. Yes, if you mean since the pain started 40 years ago. If you mean more recently, then the answer is no.

“Do you often get bored?” Of course, I do. I am home most of the time. My eye pain interferes with reading, writing or even watching a movie if there is a lot of movement on the screen. I spend a lot of time with the TV on, as background noise, and sitting in a chair or bed waiting for the hour hand to move so the day is closer to its end.

That sounds like depression. But for me, it's not. It's merely my life.

“Were my spirits good?” Easy answer. See the above.

My neurosurgeon told me there are no more treatments or surgical possibilities for me. They all have unknown risks and it’s not certain they would help. So, when I was asked, “Do you feel helpless?” and “Do you feel hopeless?'” my answer was yes to both questions. Because my situation is hopeless and helpless. The medical profession has told me so.

Margaret’s next question; “Do you prefer to stay at home rather than go out and do new things?” could have been two questions for me: "Do you prefer to stay at home?' No, I don't. "Would you prefer to be able to go out and do new things?" Yes, I would, but the pain won't let me.. 

“Do you think most people are better off than you?” was the last question. And the hardest for me to answer. In one sense, yes, because most people don't have chronic pain and they're not housebound. But I am in good shape physically, absent the eye and face pain, and my brain and mind work well. I am independent. So no, they are not better off than me. 

It all depends on the slant of the questions and the slant of the answers. 

Most of Margaret’s questions are not intended for people in pain. I don't expect them to make ones specific for the pain community and I'm not sure, given the spectrum of chronic pain and disability, if that is even feasible.  

We need to be seen for what we are. We are not “normal,” so please stop expecting that of us. 

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

A Pained Life: The Blame Game

By Carol Levy, PNN Columnist

Do you ever second guess yourself or play the blame game?  I did it again when I found myself doing too much.

While reading, my eye pain from trigeminal neuralgia started to grow and I thought, “Oh heck, I can do one more page.” And with each additional page, I repeated what has become a mantra: “It's okay. I can do it.”  

But of course, I can't. Not without paying a price. 

I finished most of what I wanted to do, my eye pain constantly telling and then yelling at me, “Stop already!”  

By the time I gave in and stopped, the level of pain was exquisite. I had no choice but to go to straight to bed, and try not to move my eyes for 15 minutes, if I was lucky, or an hour or more if I was not 

I do the same when going outside. I know a breeze, or even worse the wind, will again trigger the pain from trigeminal neuralgia. Any touch to the affected side of my face does. But I so much want to go outside.  

“Oh, the wind doesn't look that bad,” I’ll say to myself as I watch the tree in my backyard swaying from the strength of the wind against it. I go outside, the pain is triggered and I scurry back inside as fast as I can, then wait the 15 minutes to an hour before the pain calms down.   

The whole time I lie there and self-flagellate: “I knew to stop, but heaven forbid I should do what I know is right. I knew better. It serves me right.” And so on. 

Most people do this kind of thing. “I knew I shouldn't have eaten that last slice of cake, this stomach ache serves me right.” or “I knew I shouldn't have made that right turn back there and now I'm lost.”  

It's normal, for everyone but us. Because our lives stopped being “normal” the moment the pain took over. For me, “normal” meant reading for as long as I wanted, even for hours at a time; watching a movie and enjoying the brightness and movements on the screen; walking outside even when the wind is strong; or enjoying the feel of snowflakes falling on my face.  

My “normal” for the last few decades has been the exact opposite. 

We can't blame ourselves when normal doesn't work for us anymore. Our “new normal” is stopping before the pain gets too bad, being honest and saying, “I'm sorry. I can't do that activity or go with you today.” 

To me, my new normal is an awful thing, but the longer I try to deny it, to hold on to my old normal, the harder it is to accept. And it seems there is no time limit for how long you can hold onto the false hope that the old normal will return.  

The irony is that the word normal means “standard,” yet everyone's normal is defined by their own peculiar standards and needs. So, at the end of the day, there is no true normal for anyone but the one measured by their own internal yardstick.

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

A Pained Life: Tincture of Time

 By Carol Levy, PNN Columnist

“Tincture of time” is a medical maxim. Wait it out. Let's see what happens. Give it time. 

But when you have pain from trigeminal neuralgia, like I do, even a few seconds is too long to wait. Yet it takes time for pills to work. 

I don’t take my codeine prescription before the pain gets bad. I wait until the pain starts, then I take a pill. I hate taking codeine. It makes me feel awful, dry-mouthed and cloudy-headed. It takes about 15 to 20 minutes before it kicks in.  

Unless I let the pain get out of hand by continuing to do things that make it worse, I find my pain usually starts to calm down on its own, in about 20 minutes. The same amount of time it takes for the codeine to work. 

Maybe it's worth the wait. So many of us in pain are complaining, rightfully, that their doctors have reduced their meds or even stopped them completely. It's an awful situation, but one that may have some answers in the self-help column. 

When my pain starts, I no longer immediately head for the codeine bottle. I stop what I'm doing (which may not be possible for many of us), and wait the 20 minutes or so it would have taken for the codeine to help. And, thanks to tincture of time, I am better. Not always; but more often than not.

Tincture of time is one way for us to deal with the pain -- and simultaneously allows us to save pills for when the pain really does gets get out of hand.

It also has a downside. Many of us have lived with our pain for years or, like me, for decades. You get used to it, or as used to pain as one can get. I no longer talk about the pain unless I'm specifically asked about it. Then I usually just “pooh-pooh” it. I am so accustomed to pain that it is now a part of me. And I would rather not talk about it.

I do this with doctors. Any doctor that I see must know what my situation is, just by reading the names of the pain I have. They should know, so I don't make a big deal out of it. 

In that case, a tincture of time is harmful. I dismiss the pain even when I'm asking for help. They respond by not taking me seriously or thinking, “Well, her pain can't be that bad.”

Time can be an enemy or a friend. It may be the medicine we need or one that we need to ignore.

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

A Pained Life: Do I Stay or Do I Go?

By Carol Levy, PNN Columnist

I have become housebound 90% of the time. I don't want to go out if the pain has already started. And if it hasn't, I don’t want to go out and risk setting it off.

I have looked for groups to join, online and preferably in “real life.” Each one I find invariably involves an activity that triggers my trigeminal neuralgia and causes eye pain.

I love to read, but a book club requires reading a chosen book within a specific period. Then at the meetings, looking through it as certain passages, paragraphs and pages are referenced.

I thought of trying to find a hiking or walking group. I need exercise and I enjoy walking. But if it is breezy or, even worse, windy or very sunny, those are triggers for the face and eye pain.

I adore cooking. But cooking groups require cooking together and reading recipes, which requires a lot of eye movement and usage, which are my personal recipe for causing severe pain.

Before Covid I found a local choral group. I wanted to be a singer when I was young and moved to New York in my early 20's in search of a career as a singer. But six months after I got to NYC, the pain started and brought a halt to all my hopes and dreams of a singing career.  

The choral group offered a chance to sing and, more importantly, to be with others who love to sing. But it is a horror in terms of having to use my eyes to read the music and to follow the choral director's hand movements as she directs the timing.

The other night we had a concert. We only go to nursing homes, so the audience is happy to see us and accepts that we are kind of raggedy. I was excited that I would be performing with the group, but I was also very afraid. I would have to use my eyes continuously and the lighting may be too bright (another source of severe pain for me).

Like many of us, I don't like taking opioids. I have found through the years that none work for me, so my doctors and I agreed on codeine. I take it because it makes me feel as though I am doing something about the pain, something that gives me a false sense of control over it, a small amount of succor. But it’s no help for the pain.

So what do I do? Do I tell the director I can't do the concert? That would be very unfair to her and the other members (there are only 11 of us). Or do I try to smile, sing and not grimace through the ever-increasing pain?

Most people's lives are based on decisions. Do I take the car or the bus? Do I have the steak or the vegetable plate? Do I buy the house or rent an apartment? Do I tell the boss I quit? Many of the decisions we have to make are often life-changing or life-altering.

Outside of decisions regarding medical treatments that have potential risks, our choices are rarely life-altering. And yet, they can be just as devastating. Do I go and make the pain worse? Or do I stay home and regret not going? Is it easier to hide from life or easier to face the pain?

That is a conundrum that has no easy answer.

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

A Pained Life: My Teaching Moment

By Carol Levy, PNN Columnist

There are not many positives to being in chronic pain, or having the disorders and diseases that cause it. But I think I found one.

Being harassed for not being able to wear a mask was a horrific experience for me. No good could come out of it, I thought, until I realized it could have been a perfect teaching moment.

I complained to a friend, who also has trigeminal neuralgia, how upsetting it was to be mask shamed, and that I feared it would happen again.

Her response was to send me a business-sized card to hand out that explained why I couldn't mask.

It reads: “I have facial pain. Any touch to the side of my face causes horrific pain. That is why I can’t wear a mask.”

I liked the card, but didn't feel comfortable handing it out. I put it in a drawer and left it there. But then, at the dental clinic, I was repeatedly handed a mask and told, “You need to put this on.”

Each time I had to pull out my doctor's note and explain why I would not and could not mask. It became very tiresome.

Then I remembered the card. I thought it needed to be more explicit and instructive, so I made another card that says this:

“Trigeminal neuralgia is a neurological disorder of the 5th cranial nerve that gives sensation to your face. With trigeminal neuralgia the sensation is severe, often excruciating pain, on its own as well with any touch to the affected area of the face involved.”

On my next visit to the dental clinic, I was handed a mask. Instead of saying, “I can't” and having the back and forth of “Why not?” and “A mask can't hurt you,” I handed her my and card said, “This is why I can't mask.”

She read it and said, “Okay. You don’t need to mask.”

It was a perfect way to educate her about trigeminal neuralgia, and cut off the debate that often ensues.

It’s easy to make a card. The small size of a business card makes it difficult to do anything but present the most important parts of the disorder or disease we have. For instance, for CRPS it could read:

“I have a disorder called CRPS, or complex regional pain syndrome. It is caused by dysfunction of nerves that carry pain signals to the brain. It causes spontaneous and touch-induced pain that is often disabling.”

Of course, that is not a full description of CRPS, but gives just enough information to be instructive and hopefully understandable to those who ask why you can’t do something.

Handing out the card makes me feel good. It’s a teachable moment. Being able to educate others may be the best thing we can do for ourselves. 

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

I Was Mask Shamed for Having Invisible Illness

By Carol Levy, PNN Columnist

For years I have worn shirts on which I write my political position. I love wearing them. And I wear them proudly. But since the onset of covid and masking, I have worn a different shirt that reads:

“Can’t mask due to medical issue. Trigeminal neuralgia. I have a doctor's note. I am fully vaccinated and boosted.”

This shirt I do not wear proudly. My medical situation is no one's business but my own. But to keep people from yelling at me, I wear the shirt. And it works. People are usually nice about it.

That was not the case when I went to my local hospital for a blood test. Since covid, if I needed to go to the hospital, I called first to tell them, “I can't mask due to a medical issue. Will this be a problem?”

I was told I had to get permission from administrators, but ultimately got the go-ahead to come in.  I’ve been to the hospital a few more times for tests. Each time they let me in with no or little fuss, so when I had to go the last time, I did not call first.

The welcome desk receptionist signed me in, no issue. The registrar signed me in, no issue. I sat for about 20 minutes, noticed by employees and ignored by them, while waiting for my name to be called.

Then a woman dressed in medical scrubs came over to me with a mask in her hand. She did not take me aside. She confronted me right in front of other patients: “You have to wear a mask or leave.”

“No, I can't wear a mask for medical reasons,” I told her. “In fact, I have been in here two or three times with no problem.”

She reiterated: “You have to put on a mask.”

“No, I can't mask. I have a facial pain disorder and can't wear a mask. That why I wear this shirt,” I said, pointing to my shirt.

Another woman joined the fray: “You have to leave if you won’t mask.”

I was getting angry. “I have trigeminal neuralgia. Do you know what that is? Are you nurses?” I asked. “If not, go look it up. I can't wear a mask. And I have come here a few times since covid with no problem about my not being able to mask. Do you think I like wearing this shirt?  You shouldn’t be talking to me like this in a public setting.”

The two women walked away, only to call me back a few minutes later, into a room that was still within earshot and view of other patients. A man in lab clothes had joined them. The woman in purple scrubs (I found out later neither she nor the other woman were nurses or medical people) held out a plastic shield, “You can wear this.”  

I felt defeated, but no one was going to force me to set off the pain by wearing a shield. “No, I told you. I can't have anything on my face.” 

She pushed the plastic shield towards me. “You have to wear one of these then.”

I was trying to remain calm. “Do you know what trigeminal neuralgia is? There is a reason they call it the worst pain known to man and the suicide disease.”  

She continued to insist, “You have to mask.” Then the man spoke up.  "I'm the lab tech.  I won't let you in the lab or take your blood unless you mask.”   

Finally, for some unbeknownst reason, they capitulated. Immediately after registration I was told to walk to the lab. The technician who stated unequivocally that he wouldn't let me into the lab or take my blood did both. 

It was a horrid experience, humiliating because it was done publicly. Mortifying in that I had to defend having pain from an invisible illness. Despicable in that I was forced to fight to stop them from demanding I make the pain worse. Just one more unanticipated horror of being a chronic pain patient.  

Had I said, “I can't mask. I have a lung issue,” and they saw an oxygen tank, chances are good I would have been left alone or quickly taken care of. 

But I said I had something they couldn't see and had never heard of. To them it seemed bizarre. “You can’t touch your face without pain?” That must be made up. 

In the world of covid, how much extra do we have to endure?   I ask myself, often, will there ever be a time, covid or not, when I won't have to explain myself?

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

Where Are the Chronic Pain Support Groups?

By Carol Levy, PNN Columnist

For many years I was alone with my trigeminal neuralgia. There was no one to talk to about it, no one else who had it, and no one who could understand the terror of it. I longed for someone I could talk with, another person who would nod understandably and share their own stories of how TN was affecting them.

Years later, I was in the car listening to the radio and heard the announcer say “trigeminal neuralgia.”

My heart did a somersault and I yelled out, “Listen to that! They said trigeminal neuralgia!”

I calmed down and listened carefully as the announcer said, “The trigeminal neuralgia support group meets once a month at the City Hospital.”

It’s what I had been praying for.

I went to a few of the meetings. The people were nice and, to my amazement, the group was very large. There were 20 or 30 people, sometimes more, including spouses, family and friends of the person with TN.

There was support and encouragement, interspersed with speakers who spoke about various treatments, explanations for the pain, and even crackpot theories -- which thankfully the members objected to. Little by little, the group grew smaller; more often than not the support lessened and the number of speakers grew.

For quite some time it seemed that the group had simply vanished. Then I started getting email notices again announcing the date and time of the meetings. They had returned, but now there were only 6 or 10 people, always the same ones, and the support seemed to be more of a get-together for these now friends.

Once in a while, someone new came and spoke about their pain. They did get support, before the group turned back to its core members talking with one another. The new person rarely returned.

Then the meetings went from monthly to just 6 times a year, 3 in the spring and 3 in the fall. It was usually two meetings with speakers or information about ways to deal with the pain. The third meeting was only for “sharing.”   

For me, the support felt lacking.

I decided to go to the phone book (in my area we still get one) and look up support groups. I was gladdened to see at least 150 listed. But I was dismayed when I found not one was for chronic pain. The closest any of them came was for specific diseases that have pain as a symptom, such as multiple sclerosis or lupus.

There are many support groups on Facebook, but that’s not always the best place to find support. Some are terrific and the members are truly there for each other, but too many others become an arena for back stabbing, misinformation and drama.

There is something to be said for meeting in person with the people you have gone to for support. But why is it so hard to find a support group for “just” chronic pain? The cries for support are loud and clear, but the willingness to start the groups or go to them doesn't seem to be.

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

A Pained Life: Do You Know the Magic Words?

By Carol Levy, PNN Columnist

My chronic pain started with a spontaneous, horrific and sharp pain, like a blade slicing through my left temple. Within two weeks, I was disabled by it. Almost everything triggered the pain, even the tiniest wisp of hair or whisper of a breeze.

I was 26 at the time. I could only afford to go to a local hospital clinic. No matter which doctor saw me or their specialty, no one could figure it out.

Then I started dating Scott, one of the ophthalmology residents. On our date, Scott kept trying to touch the left side of my face. I kept pulling away.

“Where shouldn’t I touch you?” he asked.

I mapped out the area on the left side of my face, from my scalp down to my cheek. The exact same area I indicated at all of my clinic visits. Scott looked shocked.

“I know what you have. You have trigeminal neuralgia,” he said.

I knew of the horrors of this pain. I didn't want this diagnosis. But at least now I had a name for it.

Fast forward to when I could afford a private doctor. I went to see a neuro-ophthalmologist and told him my story. Feeling anxious and afraid, I related it in a manner that may not have been very coherent as it might otherwise have been.

“Don’t be so schizophrenic,” the doctor said. “Tell me what happened more clearly.”

He decided I was “anxious” and that was probably the cause of my pain. He told me to come back in three months and see if anything had changed by then.

I didn’t want to go back, but what choice did I have? It turned out to be a very good decision.  It was at this appointment I learned that “magic words” exist in the medical world.

“Is the pain the same?” the doctor asked. When I said yes, he said to come back in another three months.

I was walking to the door when a thought hit me. “You know for a few seconds today I thought it was finally over,” I said. He immediately perked up

“What made you think that?” he asked.

I was on the train and a lady had brushed against my face. And the pain didn’t come right away. I was happy for abuut 20 seconds, when the pain hit me like a sucker punch.

“It’s time we brought you into the hospital,” the doctor said. “We need to do some tests.”

I had no way of knowing, but I had uttered the magic words. Unbeknownst to me, that specific change was a distinct sign of trigeminal neuralgia. 

How many times have we gone to the doctor and gotten the “I dunno” or “I don’t understand your complaint” answer? 

I have a feeling for many of our disorders there are magic words like “abracadabra” or “open sesame” that change the way doctors see us. The sad part is there is no good way to figure them out. Do too much research and you may get labeled a hypochondriac. Do none and you'll never know the secret words. Is there a middle ground? 

It reminds me of the fairy tale Rumpelstiltskin, about an imp who spins straw into gold in exchange for a girl's firstborn child. If the girl guesses his name within three days, she could keep her baby. She does, and Rumpelstiltskin goes away. 

For many of us, if we guess the right words, we get the right tests, the right diagnosis and maybe even the right treatment. If only it wasn’t a fairy tale.

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

It’s Time for People in Pain To Be Heard

By Carol Levy, PNN Columnist

I just had my second “there's an issue with filling your codeine prescription” incident.

I have been on codeine, on and off, for over 30 years. Initially, I was allowed refills. When that was no longer permitted, my doctor gave me a new prescription, each and every month, for 120 pills.

When my trigeminal neuralgia pain became somewhat better as a result of various surgeries, I often took only 1 or 2 pills per day.

I am now about 90% housebound. Part of it is due to Covid, but mostly it’s because I do not want to go out and make the baseline pain worse. As a result, some days I take no codeine at all. My last prescription was for 120 pills. It was a month’s supply that lasted for 9 months.

The first incident was last year, when my pain management doctor decided, without discussing it with me, that he was no longer writing scripts for 120 codeine pills a month. Instead, he changed it to 10 pills a month.

I was told he didn’t like me having extra pills, a nonsensical excuse as I had no history of giving them away or taking too many. Prescriptions for 120 pills just made it easier for everyone, including the insurance company, since they would be paying less for fewer doctor appointments.

Fortunately, I was able to go to my family doctor, who had no problem writing for 120 pills. They trusted me there, knowing I would not abuse them.

But when I took the script to the pharmacy, I was told, “We can only fill a 7-day supply per your insurance company.”

The worst part about that was not that I would have to repeatedly go back to the pharmacy, but that the cost for each 7-day supply was much more for me out-of-pocket than if they just filled the whole prescription at once.

My Physician Assistant called the insurance company to ask for a pre-authorization. This would allow the pharmacy to fill the entire amount at one time. They immediately allowed it for the next 12 months, which seemed odd.

If they think I should only be getting a 7-day supply, then why allow the whole script to be filled for an entire year? Either I am untrustworthy or I'm not.

I am lucky. I don’t rely on daily opioids to get me out of bed, go to the store or be able to work. So many of us have no other option but to take them. My annoyance is tame compared to what other patients go through, who have been unable to get what they need due to restrictions on prescribing.

Physicians for Responsible Opioid Prescribing (PROP) recently sent a letter to the AMA saying the organization shouldn’t be calling for changes in the CDC opioid guideline, even though far more people are dying from street drugs than prescription opioids.

“Medically prescribed opioids remain a common gateway to illicit opioid use and are themselves frequent causes of opioid addiction and overdose, even if illicit opioids currently cause the greater number of deaths,” PROP said.

PROP founder Dr. Andrew Kolodny even said that prescriptions “still have a very long way to go” and should be reduced even further.

PROP’s reach is loud and strong. We complain so much to each other, patient support groups, Twitter and other social media about how awful this is, how unfair and inhumane.

A number of people have started online petitions to send to the FDA or CDC, asking that the guidelines be changed so they stop hurting chronic pain patients. Many say, “This is a great idea.” Yet few actually sign.

Nothing will change if we don’t band together and make our voices heard. The call keeps going out, “Something must be done!” But too often the answer is, “Oh yes, somebody must do something. But I'm too busy.”

Whispering in the wind won’t help. It is long past time for us to become a true force, with a voice that is louder and stronger than PROP’s. 

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

A Pained Life: Our Dirty Words

By Carol Levy, PNN Columnist

You may remember the late comedian George Carlin’s monologue: “Seven Words You Can Never Say on Television." I won’t list them here, but they are “dirty” words better off not being said, even off television.

I thought about Carlin’s list the other day when I realized there were some words that I use all the time. They’re not dirty words, but for many of us who have chronic pain, they’re words that often prove to be hurtful. Words that we need to let go of.

For example, a major portion of my trigeminal neuralgia pain comes from eye usage and eye movement. I love to read and whenever I pick up a book I know it’ll cause pain, but I refuse to let the pain take this from me.

As I read, the pain starts to grow and becomes demanding: “Stop! STOP NOW!”  

But the plot is thickening and the killer will be soon be unmasked (I hope) in the next few paragraphs, so I keep reading. And the pain keeps growing.

The voice in my head yells: “You have to stop. You have to stop NOW!”

The other voice, the one that refuses to accept my limitations, answers: “Just one more page. Just one more paragraph. Just one more sentence.”

I can listen to the sensible voice and stop now. Or I can read just a little more. And be in tremendous pain. Most of the time the “just” voice wins. It is a word that is anathema to controlling the level of pain. But I let it win anyway.

Shoulda Woulda Coulda

“Should” is another word that causes us to do so many things we know we shouldn't: “I should make the bed” or “I should make the kids dinner even though the pain is so bad.”

That’s often followed by the self-flagellating counterpoint “I shouldn't have made the bed or read that book. I knew it would make the pain worse.”

“Could” is another one. I find this word to be a favorite of rueful thoughts in the “coulda woulda shoulda” variety. It is also a favorite of others who ironically think it is a compliment: “You could have been a doctor, lawyer or teacher.”

Yes, that’s a nice thing to say. It is usually an effort to compliment us, our intelligence or intrinsic worth. And it is so hurtful. Yes, I know I could have been those things. I may have even tried, but the chronic pain took those options away.

Pretending or refusing to accept our limitations, and knowing when to say when, is often very hard to do. Because we want so much to do more than what the pain allows us to do.

I am sure there are many other words that describe our plight, but in thinking about it they all seem to come under one umbrella word: Denial.

It is hard to do, but we need to learn to accept what we work so hard to deny. When it comes to deciding what we can and cannot do, the pain is king.

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 is the moderator of the Facebook support group “Women in Pain Awareness.”