Chronic Pain Patients ‘Hanging on by a Thread’ During Coronavirus Lockdown

By Pat Anson, PNN Editor

People with chronic pain and chronic illness are staying at home, practicing social distancing and wearing masks to protect themselves from the coronavirus. But after weeks of isolation, many chronically ill patients are feeling anxious and lonely, and worried about issues that healthy people are less concerned about, like losing access to medication and healthcare.

“Some medications have been unavailable or on back order. Doctors have been unavailable; everything has been unavailable. I'm hanging on by a thread,” one patient told us.  

“It’s very difficult for a single, senior person living alone. Can go days without talking or seeing anyone. I suffer with depression anyway, but this has really increased it so much. It’s scary to think that people in this group could be sick or dead for days before being found. It’s incredibly lonely,” another person said.

“It has only exacerbated my anxiety and pain to a breaking point. I don’t know how long before I completely break down mentally,” said another.

“Not only do I worry about running out of medication, but each time I have to go to the pharmacy for various medications, I am exposing myself to others which could cause me to get the virus,” a patient said.

“I am amazed at how many people just blow off social distancing and even the seriousness of coronavirus itself,” another person said. “On the other hand, I've been heartened by the amazing compassion by others for those who cannot go out, are front line workers, and for those who have the virus.” 

Those are some of the responses we received in an online survey of 2,221 people with chronic pain or chronic illness conducted by Pain News Network, the International Pain Foundation and the Chronic Pain Association of Canada from April 6-20. The vast majority of respondents live in the United States or Canada.

Over half (58%) say they are extremely or very worried about the coronavirus, while less than 5% are not worried and believe the crisis is overblown.

The vast majority report they are self-isolating at home or under quarantine (89%), practicing social distancing (98%) and wearing protective gear like masks (73%).

There’s good reason for their caution. One in four are age 65 or older, and over half (57%) have been diagnosed with a weakened immune system. Both groups are at high risk for severe symptoms and death if they become infected with COVID-19.

HOW WORRIED ARE YOU ABOUT THE CORONAVIRUS?

“Severe untreated pain has demolished my immunity; it shows on a blood test. I'm bedridden in assisted living and I am severely immuno-compromised,” one patient told us. “I am supposed to have a biopsy, they think I have uterine cancer, but I won't get treatment because I can't have pain meds. Everyone in nursing homes is vulnerable.” 

“I’ve had COVID symptoms since March 16 and still unable to get tested. My greatest fear is whether or not it compromised my immune system even more, and that I might not be able to return to work part time when this is over,” another patient said. “Since I live alone, disability is not enough to cover my payments so I will be at risk for losing my home.”

“If I get this virus, it’s a death sentence. So I stay worried, my sleep is compromised, and my pain levels are higher,” said another.

What specifically are people worried about?  It runs the gamut from from financial problems to running out of food to not knowing when the crisis will end. Their top concern is a loved one catching the virus.

What Do You Worry About?

• 71% A loved one becoming infected

• 69% Going to a hospital or doctor’s office

• 67% Catching the virus

• 64% Not knowing when this will end

• 62% Losing access to medications

• 50% Not being able to see family and friends

• 49% Not being able to see my doctor

• 49% Visiting locations where I might become infected

• 42% Mental health

• 42% Running out of food or essential supplies

• 37% Financial problems

One reason financial problems may rank low as a concern is that nearly 80 percent of respondents are retired, disabled or were no longer working. Their financial situation hasn’t changed much due to the lockdown. About 15% are still working, while only 5% have been furloughed or laid off.

‘Stuck at Home Without Pain Relief’

One of the biggest worries of respondents is having a health problem and needing to go to a hospital or doctor’s office, where they risk exposure to people who may be infected with COVID-19. As a result, over 70 percent say they have cancelled or postponed a medical appointment. About the same number are using telehealth to connect with their providers remotely.

Some patients are having problems getting their prescriptions refilled. And many healthcare services deemed non-essential, such as physical therapy, massage, chiropractic care and elective surgeries, have been cancelled.

“I am very upset to have had my shoulder surgery delayed again. I have already waited over 2 years and now this! My pain level is something terrible,” one patient told us.  

“I've lost non-pharmaceutical pain management; the essential physical therapies and procedures have been postponed. It is called ‘non-life saving’ but I've already lost my life due to disability from severe chronic immobilizing spinal nerve damage,” said another.

“Lupus medication Plaquenil is being used to treat Covid-19. A bit scary for those of us needing access to this medication daily for lupus,” said a patient, one of several with lupus who have that concern.

“I'm very worried about not being able to get ANY of my medications. Already last week, a non-pain related prescription wasn't available at my regular pharmacy. I had to go to another pharmacy to have it filled because my regular pharmacy doesn't know when they'd get the medicine again.”  

“My physician decided to stop prescribing my anxiety and muscle spasm medication now. I’m really having a terrible time functioning. My chiropractor will not see me as I had a fever at my last appointment,” a woman said. “I’m stuck at home without adequate pain relief and have a special needs daughter. None of my doctors understands my situation here and it’s beyond frustrating.”  

Testing and PPE

Another frustration is the lack of testing and shortages of protective gear such as face masks and gloves. Like many healthcare workers, nearly two-thirds (64%) of chronically ill patients say it is difficult or very difficult to get personal protective equipment, commonly known as PPE. And only about 3.5% of this highly vulnerable population has even been tested for the virus.

“Due to the fact that I have an autoimmune disorder, rheumatoid arthritis, I am trying especially hard to stay home,” said a patient. “There are no face masks, hand sanitizer or gloves available for sale in this area.”

“It is despicable to me that we do not have enough PPE and testing. We all knew there would be a pandemic, just a matter of when. From the feds down to local healthcare, that did not stockpile PPE or plan how they would do testing. It is a horrific failure of epic proportion,” another patient said.

Testing for coronavirus antibodies is less off a concern than PPE. A large majority (72%) don’t feel a need to be tested. Only about one in four are worried they may be infected (24%) and would like to take a test to confirm it (25%).

‘The Plague of Many Generations’

IS IT EASY OR DIFFICULT TO GET PPE?

Among our survey population, only 16 people say they’ve actually been diagnosed with COVID-19. It’s been a difficult, life-changing experience for those who have.

“I've been stigmatized on social media for being outside (no one was around) for having COVID-19. I've been shamed and treated like a leper,” said one coronavirus survivor.

“I had it in January before the news broke. My mom, who was very ill, got it and passed away from it. My dad and sister also had it and survived. I am on my second bout, which compared to the first is nothing,” said another survivor.

“I believe this virus has been here since December. My husband and both sons were very ill at Christmastime into January and I took ill in February,” said a woman who tested positive for COVID-19.

“It’s been absolutely terrorizing to experience such a thing! It’s difficult to understand how this could happen or where this virus came from. It’s the plague of many generations!” said another coronavirus survivor.

Tomorrow we’ll look at how people feel about the government’s handling of the coronavirus outbreak and whether now is a good time to start ending the lockdown.

A Pained Life: A Tortured Wait

By Carol Levy, PNN Columnist

I just heard a woman on TV talk about her recovery from the coronavirus. “I am feeling absolutely horrid, but at least I know there is an end in sight,” she said.

This came on the heels of an episode of Law and Order I was watching. A woman who was tortured had bandages on all of her fingers.

“This man showed up in my apartment. I don’t know who he was. But he wanted information,” she said. “He burned my fingertips. I would have told him anything to make the pain stop.”

Many years ago, I saw an ophthalmologist. It was after the start of my trigeminal neuralgia. Any touch to the affected area of my face, even a strand of hair or a wisp of a breeze, triggered horrendous pain.

I reminded him, “Please warn me before you touch my face so I can prepare myself for the pain.”

He turned to another doctor and said, “This is how you do torture. You reduce their tolerance so all you have to do is touch them to cause pain.” Then he proceeded to touch my face and set off an explosion of pain.

Pain is horrendous. It is something we are biologically programmed to avoid. But there is no end in sight for those of us with chronic pain. Torture is a fact of life for us.

Tell someone you have pain from a sprained finger, a broken foot or a stiff neck, and rarely will you not get understanding and sympathy. Tell someone you have chronic pain and often the reply is, “Guess you have to learn to live with it.”

It is bad enough in normal times, but right now is anything but normal. Many of us with chronic pain have an added stress to the normal stress of living with pain.

My new brain implant is causing more pain than before the surgery. I cannot see my neurosurgeon. His office canceled two upcoming appointments.

I will probably not be able to see him until June or July at the earliest. The patients who can see him now are those who may have a brain tumor or another serious illness.

Once self-isolation ends, as a person in pain I will be close to the end of the line in terms of when I will be seen. I get it. It makes sense. But it adds to my feelings of aloneness. I have no doctor to help me and fear the pain will get worse. There's nothing I can do.

“Learning to live with it” is even harder when the normal resources are out of reach. The one thing we can count on is what the coronavirus patient said: “There is an end in sight.”

For us, that ending will be when we can see our doctors again and get our medications, therapies and treatments without being turned away.

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.”

I’m Lonely. Are You Lonely Too?

By Ann Marie Gaudon, PNN Columnist

We are born for connection and being socially separated is bad for our physical and emotional health. From altering our immune systems to creating more inflammation to increasing the risk of heart disease and stroke, the health consequences of loneliness are significant.

Being a chronic pain patient can put you at even greater risk of being lonely. On the one hand, we know that social isolation is unhealthy, but on the other hand, we don’t have a choice as we must practice social distancing and self-isolation to protect ourselves and others from the coronavirus.

I’m lonely, you’re lonely – now what?

Don’t Do This

Do not attempt to run from your loneliness by zoning out for hours on end with Netflix or video games, consuming too much alcohol or other substances, or over-eating.  Trying to escape loneliness that way might give you some reprieve in the short-term, but those strategies will suck the life out of you in the long-term.

Trying to avoid or suppress feelings actually has a rebound effect in that they become stronger and more invasive in our lives. Avoidance is not a benign strategy and can have catastrophic results.

Do This Instead

Pay attention on purpose. Slow down, notice and name it. For example, “I am feeling lonely. It feels heavy and sluggish in my heart.”

Can you let this feeling be there just as it is, without judging or evaluating it? Without reacting to it? Can you just slow down and let your body feel what it is feeling? Can you let go of the urge to do anything at all with this feeling of loneliness? This is a normal response to an abnormal situation and your body is wise to this, so let it be.

Make an intention. Ask yourself, “What will I do with this feeling of loneliness now? My mind sees this as something that makes me weaker, unlovable and sad. But I choose not to buy into this. I accept that this loneliness is mine. What will I do with it now that it is here?”

The way out of this suffering is to behave your way out of it. Changing your behaviour will change the way people interact with you and will also change the way you interact with yourself. Make an intention to change your behaviour while holding the loneliness lightly, as you might hold a butterfly on your hand.

Expand your experience. You’re not going to shrink away from your experience of loneliness, but rather learn from it. We hurt where we care. Loneliness tells us that we care deeply about relationships. If we didn’t, we wouldn’t feel anything at all.

You will learn that your experience cannot bring you to your knees or ruin your life. You will learn that you can go through hell on earth and still treat yourself in a non-judgmental, non-reactive way. You will learn to wrap yourself in the warmth of self-kindness – even in moments of loneliness – and expand out into life to be part of this world.

Stay Connected

If you are reading this, you already have at least one technology that you will use to move forward with a new meaning. How you take control over what you do have control over – your behaviour – will be up to you, so choose something that you value.

People all over this planet are getting creative with ways to connect with each other. Stay connected to those you love. Use your phone or software such as Skype or Zoom. Use whatever floats your boat, just remain consistently connected.

There’s a virtual world out there for everyone. You can access therapy, support groups, entertainment of all kinds, exercise of all kinds, and even stream from your local library. How about taking that online course right now that you’ve been putting off? The great thing is that you can connect with a resource anywhere in the world.

The take-away message is this: Feel what you feel and make an intention to change your behaviour. Expand your world even if has to be online right now. Talk with people, laugh with people and cry with people.

The point is to emotionally connect during these especially lonely times. Texting, emailing, speaking, video-conferencing – the sky's the limit. Change your behaviour and change your life. Self-isolation need never mean emotional isolation.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

How to Survive Self-Isolation From Coronavirus

By Madora Pennington, PNN Columnist

Like much of the world, I am self-isolating to slow down the spread of the coronavirus. As a medically fragile person, I am afraid. My immunity is poor. I get frequent lung infections and I get them fast, without warning. Would I get a bad case of Covid-19?

I can imagine my death in the ICU, without family, on a ventilator, under protective gear. It’s easy for me to reconcile myself to this possibility, even accept it. I was born with Ehlers-Danlos syndrome, which prevents the body from making proper collagen and causes a host of other health problems.

I am an expert at homebound isolation. I did it for many years, too sick and in too much pain to function. My only job was to survive another day of agony and not lose my mind. Seven years ago, experimental treatment overturned my life sentence of pain and I was freed from my prison of disability.

I sheepishly admit isolating myself from the coronavirus is a lot more fun. This time, I am not sick. Even better, I am not alone. We’re all in this together.

My old life was awful, but it was simple. I had a schedule with targets to accomplish, which may seem laughable to someone who has not experienced prolonged severe illness. Shower, water a plant, unload the dishwasher.

I awoke in the morning, feeling lucky if I got a good chunk of sleep, and resentful if I did not. My spine was so fragile, the pain of laying down on my bed led to torturous spasms. I took morphine, Vicodin and carisoprodol in hopes of falling asleep before the pain hit and hoping to stay asleep after it did. The drugs worked about half the time.

My husband was careful not to wake me as he got ready for work. Up alone, swimming slowly through the thick liquid of my morphine hangover, I faced my favorite part of the day: the bitter warmth of coffee and a view of the city.

In my old life, I lived for simple pleasures because that was all I had. Food was one of them. Cooking dinner every night. Brunches on the weekend. I felt deep appreciation for the times when my pain or my brain fog wasn’t so bad, the times when I had a little energy. I dreamed that one day I might get better.

This was before Facebook, before podcasts, before medical information was freely available on the internet. Life was lonely then, but we didn’t know anything else. We kept my struggles private. No one except my doctor knew how sick I was. That gave me a sense of dignity, as a genetic disorder is so difficult to explain. Better not to, I thought. Besides, the hopelessness brings other people down, and that’s just impolite.

We lived in a one-bedroom apartment because I didn’t have the strength to get around anything bigger. I made the bed. I took walks every day. I fought to take care of as many of the household chores as I could. There was something monastic, perhaps even spiritual about my old life, a life where I spent most of my time alone.

When I got better and exited my sickbed, my life became unbearably complicated. Drug withdrawal, integration into the world, working and building a life. I was, I shamefully admit, deeply depressed. Adjustment Disorder is an emotional disturbance one goes through while adapting to the stress of significant life changes.

Stay On a Schedule

It’s been an easy transition to coronavirus self-isolation. I remember what worked from my old homebound life. Be on a schedule. Every day do this, and then that. Shifting from one task to another makes the day seem fuller. I like to lift some weights when I get stuck writing. Or maybe scrub the kitchen sink. Jump up and fold the laundry. Reorganize something, even if it’s just one drawer, for a quick sense of satisfaction.

Commit to regular meals, as opposed to all day snacking, so you won’t go back to work with clothes that don’t fit. Get sunlight on your face, as early in the day as possible. I hope you have trees or grass or sky to enjoy. They positively affect mood.

Make your bed and stay out of your bedroom. Sleep is a conditioned response. If you lay in bed while reading or watching TV, you send your brain confusing signals about when sleep time is supposed to be. Bedtime rituals help get sleep hormones flowing. Follow the same pattern every night.

Talk on the phone or even better FaceTime or Skype with friends so your brain can have the satisfaction of mirroring and the stimulation of responding to another human’s emotions. Accept your humanness, that you don’t have much control over your life and never did.

There is so much stimulating content now, from streaming services to podcasts, Kindle and audiobooks, ways to feel part of humanity and not so alone. Type your thoughts and feelings into a journal to help process and keep them moving.

My coffee ritual is still my favorite part of the day. It’s reliable and always there for me. I stocked up on great coffee, anticipating society shutting down, along with spam and popcorn, cold medicines and laundry detergent.

You can go outside for a walk, if not many people are around. Walking is relaxing. Gently swinging your arms as you go relieves back pain. My husband and I strap on weights and walk the neighborhood. We wave to our neighbors, most of whom are also living homebound isolation. We stand far apart as we chat.

“Let me know if you need anything,” I say. “I’ll disinfect it and hurl it over to your yard.” They agree to do the same.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.