I’ve been thinking a lot lately about the pain from Pancreatitis that we suffer and the way that others, including our Doctors treat us or understand the pain that we are actually in.
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The Pain Scale
All of us are probably familiar with the numeric pain scale that health care providers always have us use to rate the amount of pain that we are experiencing.
It runs from 1 to 10 with 1 being no pain and 10 being, depending upon who is asking, the worst pain that you can imagine.
My problem with this is that I can always imagine pain that is a lot worse than what I am experiencing.
There have been times when I have been writhing in pain from Pancreatitis so intense that I could barely think straight and yet told the Doctor that I was at 7 because either I’d been worse in the past or I could just imagine worse.
I understand that the Doctors need something to start from and a scale is about as close as they can get to understanding where we are without experiencing the pain themselves but I’m not sure that they always use a scale like this correctly.
The problem is always going to be that the communication between any two people is garbled at the best of times. When you add in the subject of pain I think it gets even more problematic.
Plus I think that many Doctors assume that you are exaggerating your pain in order to get prescribed pain meds. I think that this is especially true when you are dealing with chronic pain.
Types of Pain
To make it even more confusing there are different kinds of pain depending upon whether it is pain that is for nociceptive ( an activation of our pain receptors) reasons, or neuropathic (caused by damage to or malfunction of the nervous system).
Then there is Visceral pain, something that anyone who suffers from the pain from Pancreatitis knows. It’s a type of nociceptive pain that originates in the viscera ( our organs). Visceral pain may be well-localized, but often it is extremely difficult to locate.
This can be because several visceral regions produce “referred” pain when damaged or inflamed, where the pain sensation is located in an area distant from the site of pathology or injury.
This explains why when you have a flare up of pain from Pancreatitis, it can be difficult to point to an exact spot where it hurts.
Different pains can also feel different depending upon their location and type. They can be described as “dull”, “burning”, “tingling”, “electrical”, “stabbing”, or “pins and needles” to name a few.
Most of the time the pain from Pancreatitis is a dull pain.
All this makes it sort of confusing to answer the Doctors questions about how the pain feels, and the amount and location of that pain that we are experiencing.
We Always Adapt
Even more confusing is that I’m convinced that we adapt to our pain in different ways.
Whether it is the pain from an Acute Pancreatitis flare up or the Chronic Pain that becomes a normal part of our everyday lives when we suffer from the pain from Pancreatitis, I’ve become convinced that over time it changes the way that we communicate about our pain.
No one wants to be in pain and suffer, but diseases like Pancreatitis takes that choice from us and can put us in a life where we can’t avoid it, so we adapt.
We try to adapt to to our pain and attempt to block it out so that we can survive.
Our Pain Threshold
But research shows that the more often that we feel the type of pain that Pancreatitis can bring, the lower our threshold for that pain can become over time.
Then, to make it more confusing, that threshold doesn’t seem to reset between acute flare ups.
This always leaves me in sort of a quandary. I’m always asking myself if I am really in so much pain or whether I am just more sensitive to the pain that I am feeling, that things aren’t as bad as they seem.
I usually rely on things like the Lipase Blood Test to see where my flare up is but over time this test can also become less reliable.
I’ve never had a Doctor explain all of this, maybe because they were afraid that I would become psychosomatic about the pain and aggravate the actual pain that I was feeling through stress or just thinking too much about it, but it sure explains a lot about my experiences.
My Experiences With Pain From Pancreatitis
I can’t speak for others but I know that one of the ways that I deal with the periodic pain of my Acute attacks and the daily chronic pain from Pancreatitis that I suffer from is to try and ignore it.
I’ll wait until I am in excruciating pain from Pancreatitis before I’ll go to the hospital ER or even just to see my Doctor.
I’m like that person that you know is in pain but when you question them they force a smile and say “I’m okay”.
I’ll sit differently, or use pillows or my hands to support the area in pain. I’ll move differently, usually slower, and ease into and out of cars.
It’s partly because of the difficulty communicating the pain that I am in to Doctors and Nurses and others but also partly because I hold on to the hope that if I can just stand the pain a little longer I’ll be able to avoid the hospital visit and everything will go back to normal.
I also don’t like appearing weak and showing pain makes me feel like I am weak.
Dealing With Someone Who Lives With Pain
To deal with someone that suffers the pain from Pancreatitis you have to “learn their code”.
The code is the way that they communicate about their pain to you and others.
It often helps when you have pain from Pancreatitis to go in to see their Doctor with them so you can translate this code for them.
First thing that you need to do to crack the code is to not make the assumption that the chronic pain sufferer is not experiencing pain when they say that they are fine.
Often times when we are having either a full blown Acute Pancreatic flare up or even when dealing with the chronic pain we try to hide the pain because the people around us just don’t understand it.
You also have to accept that even if we want to tell you about the pain, sometimes mere words may not be adequate in describing how we feel.
To understand what a person who has Chronic Pancreatitis goes through try to recall a time when you experienced pain. Now multiply the intensity of the pain and try to imagine that pain 24 hours a day, seven days a week, for the rest of your life with no relief.
And an Acute flare up is often even worse. Multiply the Chronic pain from Pancreatitis by 10 and try to understand how it feels when that pain can happen at any time without warning.
Putting Up A False Front
What happens a lot is we try to cope by putting up a front, trying to ignore the pain and sound happy so we can live a normal life
But you can often see through this facade if you look closer. Watch for signs of pain including grimacing, irritability, restlessness, mood swings, difficulty concentrating, clenched teeth, inability to sleep and decreased activity to name a few.
Depression is another sign of a person who is trying to deal with extreme pain. In fact, more than 50% of people who suffer pain from Pancreatitis also suffer from severe depression.
Tips For Dealing
We’ve already seen that there are a lot of times when we put up a facade to deal with the pain.
Getting through that facade can be difficult as we try to make things seem lighter than reality.
Listen to the Sufferer One of the best things that you can do is to make sure that you listen to the sufferer. You should make it clear that you want to hear what they say and that you have heard them.
Understand and Respect the Pain Sufferer’s Limitations Just because we are able to get up and walk around doesn’t mean that we aren’t in pain and can do everything that we would normally be able to do.
Bottom line is that with a lot of diseases a person shows obvious signs of immobility.
But with pain from Pancreatitis it can be less obvious and our ability to move and our mood can change from day to day or even hour to hour.
With the pain of Pancreatitis it can change depending upon our last meal, what we ate, and when we last had pain pills.
Leave Your Pep Talks Behind To deal with someone that lives with the pain of Pancreatitis you have to realize that the pain can vary dramatically.
Realizing this you should keep in mind that hearing a pep talk can be aggravating and counter productive.
Try To Be Understanding Remember that we are dealing constantly with Doctors and other care givers that can be less than supportive.
Even when we get out of the hospital or past the pain of a flare up we will still need time to recover.
My personal thought is that it takes me from 3 to 4 times as long as I suffer from a flare up before I start to get my feet back under me and star to feel normal again.
Final Thoughts
If you are dealing with someone that suffers from the pain of Pancreatitis you need to learn patience and try to be understanding.
Not only do we fear for the future because we don’t know where this disease could progress, but it makes our daily lives much more complicated.
Well said!
It’s like you took the words right out of my mouth! Well said!
This is very well thought out and not just for pancreatitis which I haven’t been diagnosed with yet but I am working on finding answes on, been over a month and a half and the pain is getting worse but also I have chronic pain this article I will pass around to my family as they don’t get it, my significant other does and is wonderful and super supportive. But your website is incredible and so informative as I am at a loss and trying now liquids we have found this as a fluke after having shoulder surgery and I developed a bad case of diarrhea when I would eat certain foods so after having a CT scan they found pancreas divisum now after an MRCP we have continued further to where I will have a series of tests in the hospital and now a liquid diet which thanks to your site I understand better. Please keep up the great information for those of us that are confused out here. It is much appreciated