When Getting Used to Chronic Pain Becomes a Problem

Mary Shaniqua avatar

by Mary Shaniqua |

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I have a difficult time knowing when I’m not feeling well apart from when I have a severe illness. That sounds ridiculous, right? Because I have a chronic condition, someone might think I would know when I feel sick. But the irony is that a chronic condition can result in my being less aware.

A vaso-occlusive crisis is one of the main symptoms of sickle cell disease. It causes acute pain, and I am able to easily recognize when it is happening. Sometimes a crisis can cause long-term damage to the bones, which can result in chronic pain that sticks around for more than six months.

Because it lasts so long, chronic pain is sometimes easy to ignore and to not take seriously. You just get used to it and learn to live with it. And when a new pain occurs that isn’t as severe as acute crisis pain, it’s easy to dismiss it as just another type of chronic pain. This has happened to me.

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People Experience Sickle Cell Disease Differently

About two years ago, I woke up with a slight pain in my chest. Because it didn’t feel as bad as acute crisis pain, I didn’t think it was worth a trip to the hospital, and I went to work. It must have been evident to my colleagues that I was in pain because they asked if I was feeling OK. I told them I just felt a little rough.

At lunchtime, I went out with a colleague who called an ambulance against my wishes when she learned that the pain was in my chest. I told the ambulance crew I was OK and didn’t need to go to the hospital. But the results from the tests they ran — blood pressure, blood sugar, and electrocardiogram — were all over the place, and they advised me to go to the hospital. Fast-forward a few hours, and I learned I had a pulmonary embolism. Thank goodness my colleague had not listened to me!

Chronic pain can elevate pain tolerance levels, making it easy to disregard pain that isn’t severe crisis pain. I am trying to learn not to do this. I now regard all chest pain as an emergency, and I’m learning to pay closer attention to new pain in other parts of my body.

Living with chronic pain also causes me to downplay when I experience fatigue, which is another symptom of sickle cell disease. I find it so hard to take sick days at work when I’m experiencing fatigue because I feel bad doing so.

I have taken a lot of time off work because of hospitalizations. I also take time off every six weeks for transfusions. So, I tend to think that if I’m not in the hospital, I should be at work. Which, of course, is ridiculous, but I really do struggle to pay attention to how I am feeling and to know what I need to do. For example, I called in sick on Monday because I felt terrible, but I went to work on Tuesday even though I was still feeling ill and was vomiting.

In that instance, my manager forced me to go home, but I shouldn’t have to be forced. I should be able to recognize when I’m unwell and take time off work without feeling guilty.

Where does this guilt come from? I don’t know. I wonder if this is something other people with sickle cell disease or other chronic conditions experience, too?

Do you have suggestions about how I can address this problem? If so, please share in the comments below. 

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Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

Carol Anne Benack avatar

Carol Anne Benack

Hello Mary, before I answer your question, I'd just like to say I am so sorry for your struggles and wish to tell you how brave you are. I have Chronic Intractable Pain and have been unable to work since 94'. Long story, but let's talk about you.
Since it is a priority for you to keep working, I would keep a steady journal, if you don't already, of any symptoms that come on you every day. You can jot them in maybe toward the end of your day. After dinner is a good time for most. Maybe there are some patterns to your flares that send you to the Hospital. Or perhaps it would be beneficial to you if your Drs. were to treating your pain with daily pain medication. The meds can really help inn certain cases. Wishing you your best QOL , Carol

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Ken Levine avatar

Ken Levine

I have chronically acute nerve pain , hyper and hypo neural sensitivities and severe muscle spasms from head crown to near waistline after bilateral thoracic outlet syndrome and bilateral rib resection. I have a morphine-Baclofen-Clonidine-Bipivercaine implanted pump cathed into my spinal fluid.
I realize how true and familiar your statements sound. I also have accepted the situation, and have wound up sick in the hospital a number of times. Your condition becomes the brain’s excuse for everything pain or ill feeling. Other people have done for me what your friend did for you. Thank goodness for them. I wish you well. Keep your patience with yourself. Listen to others used to observing you.

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Woolaver avatar

Woolaver

Hi Mary,
I have been where you have many times. I don't know what the sick leave allowances are where you are employed, but for me this has always been a factor. I have Sickle Beta O Thal, with a medical history that could fill a book (as I'm sure yours could).
When it comes to sick leave, I always have to make a decision (doing what is tantamount to a mental body scan) to decide "how sick" I feel. Basically if the pain is not debilitating I go to work. It is possible reason we don't recognize when something more serious is occurring because it might be a few notches down from the worst pain we have.

About 6 years ago I went into work limping because I had pain in my hip. My boss looked at me and asked if I should be there, I brushed it off as my usual and promised if it got unbearable I would go home. By 10am that morning, despite sitting in front of my office desk space heater set to high, my thumbs were numb and I had chills I couldn't shake. My situation escalated quickly. I realized that I couldn't stay but I was also now in a position that I couldn't drive myself. A family member drove me to my doctor and after tests and nights of cold sweats they realized I had an infection in the hip and needed an operation urgently.

As a nice twist, I live on a small island and with all my lovely special needs, specialized equipment had to be ordered and shipped in for me. Long story short - the situation went from the possibility of needing a day or two off work to needing 2 weeks off to recover from surgery. AND as it turned out 6 weeks later I needed to have a second surgery and needed yet another 2 weeks off work.

Our circumstances are never certain. It's just a fact of life and one that is more definite for a Sickler. While it took me many years to recognize and pay attention to what was happening to my body and then to react; I still make decisions (sometimes bad one) to reserve my sick days because I may feel worse in the future then one the day I chose to go in feeling unwell.

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