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Understanding and Helping Those Who Live With Chronic Pain

garfield pain

Regular readers know that I live with chronic, unrelenting pain. There’s never a day that pain is not my close, personal friend. The last time I can remember a pain-free day was somewhere in the mid-1990s (I was diagnosed with fibromyalgia in 1997). Every day, like the sun coming up in the morning, I have pain. Some days are less painful, other days are more painful, and then there are what I call the please let me die days where the pain, no matter what narcotics I take, is off the charts. From the top of my head to the bottom of my feet, I hurt. New pains come and go, often returning months or years later. Some pains move in and stay, just like an adult child who says, “I just need to live here until I get back on my feet.” This is my life. I accept it as it is, doing what I can, and embracing what I can’t.

Friends and family often have a hard time figuring out how to interact with me. Some avoid me — out of sight out of mind, I suppose. Some stand on the periphery of my life watching as chronic pain and illness destroy the man they love. Some dare to venture a little closer, perhaps even offering to help, but I often push them away, not wanting to burden them with my problems. They have a life, I tell them, no need to be burdened with a dying old man.

The last two years have been record-setting, and not in a good way either. Not only do I continue to struggle with fibromyalgia and osteoarthritis, but after I had my gall bladder removed in August, I am dealing with bile reflux and gastritis (bile is pooling in my stomach, not draining down my intestine as it should). I have lost 105 pounds in twelve months, don’t feel like eating, and now I am having a problem with super lower blood pressure (and this is after stopping ALL of my blood pressure medications). And then there are my low blood cell counts that no doctor, so far, has been able to figure out.

I know family and friends love me and want to be “there” for me, wherever “there” is. Some of the readers of this blog — dear folks who have over the years become my friends — offer up their love and support and I deeply appreciate their kindness and compassion. I know, as people watch the spectacle of my life, they are frustrated and discouraged, knowing that this may not have a good outcome. I resigned myself to this fact a long time ago. If not today, it will be some other day, sooner rather than later, that will be my last. Like you, I want to live until I die. While I may have moments when I contemplate suicide, most days I try to live the best life possible.

Several years ago, I read a wikihow.com article titled How to Understand Someone With Chronic Pain. I thought the points in the article might be helpful for my family and friends and for others who are intimately connected to someone with chronic pain. Here are some of the points and a highlight quote from each. I encourage you to read the entire article.

Remember that being sick does not mean that the sufferer is no longer a human being.

Chronic pain sufferers spend the majority of their day in considerable pain. If one visits or lives with a chronic pain sufferer, the chronic pain sufferer may be unable to enjoy things they used to enjoy. The chronic pain sufferer remains aware, and desires to do what they used to perform. The chronic pain sufferer feels as if they are stuck inside a body in which they have little or no control. They still want to enjoy work, family, friends and leisure activities, however much pain puts that enjoyment out of reach.

Learn the code.

Chronic pain sufferers will often talk differently from people free of constant pain. A numeric pain scale is used as a quantitative measure for identification of intensity for pain so the health care providers can measure effects of treatments. The measure describes pain on a scale from 1 to 10; the 1 is “no pain at all, feel wonderful” and 10 is the “worst pain ever felt.” Do not assume the chronic pain sufferer is not experiencing pain when they say that they are fine. The chronic pain sufferer attempts to hide the pain due to lack of understanding in others.

 Recognize the difference between “happiness” and “healthy.”

When you have the flu, you probably have felt miserable. Chronic pain sufferers have experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.

 Listen.

The previous two steps made it clear that chronic pain sufferers can speak in code or make their pain seem lighter than the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they’re hiding or minimizing.

 Understand and respect the chronic pain sufferer’s physical limitations.

Being able to stand up for ten minutes doesn’t necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn’t imply that they will be able to do the same today…With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up, and each day has to be taken as it comes.

 Leave your “pep talk” for your kids and your gym buddies.

Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it’s quite possible (for many, it’s common) that one day they’re able to walk to the park and back, while the next day they’ll have trouble getting to the next room. Therefore, it’s vital that you don’t fall into the trap of saying: “But you did it before!” or “Oh, come on, I know you can do this!”

 Never use throwaway lines.

Assuming you know best by making such statements as “Ah well, that’s life, you’ll just have to deal with it”, or “You’ll get over it eventually. Until then, you’ll just have to do your best”, or worst of all, “Well, you look well enough,” etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope.

 Check your own patience.

If you’re impatient and want them to “just get on with it,” you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.

 Be sensitive when suggesting medicines or alternative treatments.

Some may not appreciate suggestions, and it’s not because they don’t want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven’t worked carry the emotional pain of failure, which in and of itself can make the person feel even lower.

 Don’t be put off if the chronic pain sufferer seems touchy.

If that’s the appearance, it’s probably because they are. It’s not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

 Be helpful.

The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they’re too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the “normality” of life.

Is there anything you would add to this list? Please leave your astute observations in the comment section.

bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

When the Pain Doesn’t Go Away

shit happens
Shit Happens, says Grim Reaper

1971-1972 was an eventful period for me. I was saved at an Al Lacy revival meeting, baptized, and called to preach. My parents divorced and remarried. I missed almost a month of school due to coming down with mumps and chicken pox. What a year, right?

I also saw a doctor for unexplained pains in my joints, especially my toes and elbows. The pain was so bad I couldn’t throw a baseball and THAT was a big deal to me at the time. The doctor said I was having “growing pains”. I did grow a lot in 9th and 10th grade, over 7 inches, so growing pains, at the times, made sense. I now know that the doctor didn’t know what was wrong with me and gave me a meaningless diagnosis.

If that wasn’t enough, some of the neighbor boys and I decided to go swimming in one of the nearby ponds along I-75. The pond was dug out when they needed dirt for overpass construction.  I had fished this pond many times, and in the winter the neighbor boys would skate on the pond and play hockey.

A day or so after swimming in the pond, we all came down with mysterious blisters on our skin. My parents took me to the ER and one of the boys had to hospitalized. Doctors theorized that we are “exposed” to something in the water. We later found chemical barrels that had been dumped in the pond. I have often wondered what I was exposed to on that warm summer day in 1971?

And, I must not forget, 1971 was the year I was stung by a bee and had to be rushed to the ER because my air way was swelling shut and my eyes were swollen shut. Evidently, I was allergic to bees. (I am still allergic but less so since I had allergy shots years ago)

When I was 18, I started having swelling in my big toes. The Arizona doctor said I had gout. Other doctors, years later, said I didn’t have gout. At the time of my original diagnosis I had high uric acid levels, the telltale sign for gout. Years later, my uric acid levels were normal. So, did I really have gout? I don’t know.

As I got older, doctors treated me for chronic bronchitis and arthritis. One doctor told me the arthritis was the price I paid for playing contact sports. Years later, a different doctor told me the first doctor was full of crap. Yes, I now had arthritis in my shoulders, back, feet, and hands, but there was no way to KNOW if it was caused by contact sports. Dueling doctors, the bane of the chronically ill who are looking for answers.

In 1989, I came down with pneumonia. The doctor wanted to hospitalize me, but we didn’t have insurance so he agreed to treat me at home as long as I came to see him every few days. Years later, I had another bout of pneumonia, along with several bouts of pleurisy.

In 1991, I began to feel tired. The doctor thought I had a virus of some sort. This went on for weeks and weeks until the doctor decided to do some tests. He found out I had mononucleosis. I was 34 years old and mono can cause serious problems for adults. It did for me.

The doctor put me on a herpes drug.  Mononucleosis is caused by the Epstein-Barr virus, and since herpes is caused by the same virus the doctor though the drug might help. It didn’t and a week later Polly rushed me to the ER in Zanesville, Ohio where they immediately admitted me. I had a high fever and my spleen and liver were swollen. There was so much infection in my system that my tonsils and adenoids were white.

An internist came in to see me and told me that my immune system was crashing and that if it didn’t pick up there was nothing they could do for me. This was the moment, THAT moment, when I realized, for the first time, that I was mortal. Prior to this moment, dying never crossed my mind. I had a family and church to take care of and I had thought of and no time for dying.

After my release from the hospital, I spent about a month in bed. I lost over 50 pounds. From this point forward, I became more susceptible to viruses. It seemed then and still does today that I catch any and every bug that is floating around.

pain looks good on other people
Pain Always Looks Good on Other People

The strangest thing to come out of the mono episode was my normal body temperature changed. My new normal is 97 degrees. This poses a problem any time I get a new nurse and have a fever. She will take my temperature and say, it’s up a little, 99.8 degrees. I will then mention that my normal body temperature is 97 degrees, so 99.8 degrees for me is like 101.4 degrees for a normal person. Sadly, most nurses ignore me.

In 1996, I began to feel tired all the time. I mean really, really tired. And my muscles hurt. I went to one doctor who basically told me it was all in my head. I went to another doctor, the doctor who is still my primary care doctor, and over the next year he concluded I had Fibromyalgia. Since 1997, my primary diagnosis has been Fibromyalgia.

For about 10 years, my symptoms would come and go, always there but not always prominent. Being a work-a-holic with a Type A personality, having Fibromyalgia certainly cramped my ability to burn the candle at both ends, but I learned to manage my symptoms. Well, not really. I would work, work, work and then crash. I continue to repeat this cycle today. I have never been very good at taking it easy or resting. Of course, now it is different for me because I can no longer put mind over matter. My body has the upper hand and it controls many aspects of my life. I manage, but I no longer have the ability to ignore what my body is telling me.

In 2007, I began having neurological problems that my doctor doubted were Fibromyalgia related. I now had numbness in my face and thighs and I was losing muscle strength. A 15 minute walk in a store proved to be (and still does) a very painful and debilitating experience. By the time I am done walking, my thighs are numb, yet they are burning. The numbness and burning subside once I sit down in the car.

My primary care doctor sent me to Toledo to have a complete battery of tests, including a lumbar puncture.  He wondered if I had multiple sclerosis. The tests came back inconclusive, and two brain scans later I am no closer to knowing what is causing the neurological problems. Some day my tombstone will read, Died of Hell if I Know Disease.

Today, the pain and debility continue to render me a shell of the man I once was. While I am grateful for still having most of my mental faculties (outside of the short-term memory problems I have, I do miss Bruce Almighty, the man with a strong body and a strong grip, able to do whatever he put his mind to. Those days are long gone and all the wishing in the world won’t bring them back. But, wishing is what old men do, especially those whose bodies are racked by the ravages of disease.

Age has added diabetes and high blood pressure to my plate. A slight bit of good news? My recent A1C level was 6.5. This means my diabetes is well controlled. Yea!

Recent months have brought new problems. I detailed those in a previous post. Tomorrow, I have an MRI and hopefully we will then know if it is something, maybe something, or nothing. After my recent CT scan, I spent significant time reading about pancreas and gallbladder problems. My doctor knows I will always educate myself. I want to be an informed patient.

I had an appointment with him a few hours ago. Refills, a new prescription for the horrible constipation I now have. I asked him what he thought about the CT scan results. He said he didn’t want to speculate and wanted to wait for the MRI results. Hopefully, he will receive the results sometime late tomorrow and call me.

I asked my doctor if the MRI could definitively determine if I had pancreatic cancer or a pancreatic cyst. He said, yes. I told him I had done a fair bit of reading on the subject. I laughed a bit and said, my diagnosis ranges from watch and wait to it sucks to be you. The doctor smiled. He knows my diagnosis is correct. If it is pancreatic cancer, it does suck to be me. He hopes it is not. If it is, then it is likely I will have to have a biopsy done. He also thinks I will need to have my gallbladder removed.

I am detailing my story to hopefully give readers some sort of context for understanding the health problems I have. For me personally, I wonder how I got to where I am today? Did my current health problems find their root in 1971-72 and it has taken all these years to bear fruit? Perhaps mononucleosis altered my immune system? Was I exposed to a cancer causing chemical in pond water 40 plus years ago?

I don’t think I will likely ever know. I do subscribe to the cumulative effect theory. Environmental exposure, eating habits, poverty, and genetics added together have brought me to where I am today. It’s not one thing, it’s everything, everything being life. We all have to die of something and my something has made itself known. (that is if I don’t trip over the cat in the middle of the night and break my neck)

Recently, someone asked me if I was worried about the possibility of having cancer? (I have already had cancer, skin cancer) They said, answering for me, how could you not be worried, right? Just asking this question reveals they don’t know me very well or haven’t been paying attention. Worry is not part of who I am. I am stoic about life, perhaps even a bit fatalistic. If I have cancer I can’t change that I have it. Worrying and fretting does me no good. In fact, it increases my pain levels. So, I try to channel my inner Buddha and relax. Life is what it is and all I can do is take what comes. Yes, if it is cancer, I will have decisions to make. If it is not cancer, I will still have decisions to make. Either way, I will educate myself and make informed decisions. Isn’t that all any of us can do?

Health Update

health news

A number of readers have inquired about my health so I thought I would take a few moments to share with you how things are t-o-d-a-y. I am hesitant to write anything since there are still some tests that need to be run, but I don’t want to keep my friends (and enemies) in the dark.

When I stopped blogging 4 months ago, I said “that’s it.” My health is such that it is very hard on me to write. But, I learned that my health didn’t get any better after I stopped blogging. Mentally and emotionally things got worse.

Since I am pretty much home bound, this blog allows me to connect with people who I consider friends. This is very important to me. Just today, I received a Christmas card from one of my Canadian friends, Carmen. We have never met, likely will never meet, yet I consider her a friend. More than a few times, her cheerful emails and letters have encouraged me. My life would be much poorer without the internet friendships I have made over the past 8 years.

I remain passionate about life and writing allows me to express that passion. I thought I could just turn it off and move on, but I found out I couldn’t. So, I plan to continue blogging until I d-i-e. Which, brings me to the health update.

About six months ago, I started having wild fluctuations in body temperature, similar to the hot flashes women have. One moment I am cold and wearing a beanie and the next moment I need to turn the fan on. This happens numerous times a day.

Over the past ten weeks I have lost 35 pounds, and no I am not on a diet. I have lost my appetite and my stomach often feels full. Simply put, I don’t feel like eating. And believe me, developing the svelte body I now have has required a good bit of eating. My weight is the lowest it has been in over a decade.

I have blood work done 4-6 times a year. Over the past 3 years, my SED rate has been slowly increasing.  15 is the norm and it reached 35 two months ago. Well, last week I had blood work done and the SED rate had jumped from 35 to 67. This rate increase can mean many things, from infection to inflammation to cancer.

During this time, I am also dealing with an unexplained problem with my left foot. 4 months ago, all of a sudden, my foot started swelling and turned yellow and red. I also had sustained spikes in body temperature. Infection right?  Blood tests were normal. The first doctor said I had cellulitus, the next doctor said I had phlebitis. The foot doctor said I have a ganglion cyst in my foot.

The discoloration went away, but the foot continues to swell if I don’t keep it elevated. Compared to the pervasive, unrelenting pain I have to deal with, the pain from the foot is barely noticeable. My family doctor ordered an ultrasound of my foot. I went in for the ultrasound  and they tested my left leg instead. I tried to tell them they were doing the wrong test but they assured me…doctor’s order. I have been unable to pin down whether it was the doctor or the lab that made the error, but in the process of doing the ultrasound on my leg they found an enlarged lymph node in my groin.

Taking all of these factors together, my primary doctor ordered a CT scan of my chest, abdomen, and groin. This test was done on Monday and was, in itself, a comedy of errors. Due to an ER emergency I had to wait 50 minutes for my scan. Then the tech had problems getting an IV started and it took 2 people 15 minutes to put my IV in. I have thick skin, deep veins. As any nurse or phlebotomist will tell you, redheads are a pain in the ass to stick.  Once the IV was in it was time to start the contrast. Technical error again. The contrast diffuser wasn’t working. 15 minutes later the problem was located, a disconnected cable on the back of the computer.

Finally, I had the CT scan. The scan itself only took a few minutes, one quick scan, one slow scan, one slow scan with contrast. Here’s the results:

  • MEDIASTINUM: No significant paracardiac effusion. No enlarged mediastinal or hilar lymph nodes are seen. Mild dilatation of the ascending thoracic aorta to 4.1 cm.
  • LUNGS: No focal lung opacities or pleural effusions. Calcified granuloma in the left upper lobe.
  • LIVER: Mild fatty infiltration with no focal lesions identified.
  • GALLBLADDER AND BILIARY SYSTEM: The gallbladder lumen is replaced by high attenuation, which may reflect numerous gallstones or high density sludge.
  • SPLEEN: No significant abnormality.
  • PANCREAS: There is a small hypodense lesion in the uncinate process of the pancreas, measuring approximately 7 x 5 mm axially (image 71 ) and 12 mm craniocaudally (coronal image 55). There is no pancreatic duct dilatation. There are mildly prominent peripancreatic lymph nodes measuring 11 and 8 mm in short axis (axial images 64 and 65).
  • ADRENAL GLANDS: No significant abnormality. KIDNEYS: No significant abnormality.
  • BOWEL AND MESENTERY: No focal bowel wall thickening or dilatation. Normal appendix. Sigmoid diverticula with no evidence of acute diverticulitis.
  • URINARY BLADDER: No significant abnormality.
  • OTHER PELVIC STRUCTURES: No significant abnormality.
  • BONES AND SOFT TISSUES: 4 cm intramuscular lipoma is seen in the left lateral abdominal musculature (axial image 58). Sclerotic focus in the anterior column of the left acetabulum may represent a benign bone island in isolation. Degenerative changes affect the thoracolumbar spine.
  • OTHER: Minimal atherosclerotic calcifications affect the abdominal aorta and branch vessels.
  • IMPRESSION: 1. Small lesion in the pancreatic head. While this may represent fatty infiltration, neoplasm cannot be excluded. Followup contrast-enhanced MRI is recommended. 2. Prominent peripancreatic lymph nodes. 3. Abnormal high attenuation in the lumen of the gallbladder may reflect numerous gallstones or high-density sludge. Right upper quadrant ultrasound is recommended for further evaluation. 4. Other findings as above. Professional Interpretations by FW RADIOLOGY

I texted my primary care doctor today and he plans to call me tomorrow morning. Here’s what he texted me:

At children’s christmas program. Can’t call. Abnormal pancreas. May need ERCP instead of MRI. But could do MRI first. Concerning but sometimes turns out benign cyst. Will call you in AM.

That’s it for now. When I know more, I will let you all know.  These problems are new problems, above and beyond the other health problems I have. I remain stoic, as always. It is what it is and we live until we die. I know some want to cheer me on but I am OK. Long ago, I realized that health problems are my lot in life. I embrace them and try to manage the best I can. Right now I am focused on what’s ahead and having enough appetite to eat all those awesome cookies Polly makes for me. That and looking forward to an awesome Sunday Christmas gathering with my kids and grandkids.

Note

If you are unfamiliar with what an ERCP is, here’s the Wikipedia page. Another option may be an EUS.

Bruce Gerencser