I often wonder if anyone that doesn’t suffer from it really understands the immense cost that comes from living with something like Pancreatitis Chronic Pain everyday. Even those of us who suffer from it may not really understand how much of an impact this constant pain can have on the quality of our lives.
Even though it is estimated by the National Institutes of Health that 1 in 10 Americans experience pain because of a variety of different reasons on a daily basis, many people still see it as a unique occurrence.
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Chronic Pain Survey
Now, in a new survey conducted by Yahoo Health and Silver Hill Hospital, 900 people were asked how chronic pain affects them. In this survey, the participant’s were people who had described their Chronic Pain as both serious and continual and that has lasted for 6 months or more.
While this survey wasn’t specifically designed to study Pancreatitis Chronic Pain, the results of the survey can give us some insight into how deeply our own chronic pain can affect our lives.
Pancreatitis Chronic Pain
Unlike short term pain that a person could experience when we are in an accident or have some medical issue that can be resolved, Pancreatitis chronic pain is ongoing and has serious effects on us both emotionally and physically. It can severely impact our ability to live and enjoy our lives.
There are serious emotional costs that come from the knowing looks of the people around us who don’t understand what we are going through. That lack of understanding that we see in the actions and words of these people, in some cases even from our own Doctors and Nurses that we rely on for our care, can have a major impact on the quality of our lives.
In one surprising answer it was found that more than half the people in the survey felt words like “Complainer.” “Pretending.” “Lazy.” or “Unproductive.” were often used by other people to describe someone who suffers from Chronic Pain.
But I also think that a lot of times we are our own worst critic. We wonder what we did that causes our body to be so angry with us that it causes us such unrelenting pain and in some way feel that we brought it on ourselves.
And many of us end up trying to deal with that pain through denial. We tell anyone that asks how we feel that we are fine – hiding the true pain that we are actually feeling inside.
There is also the strain of knowing that there is a very real chance that the Pancreatititis Chronic Pain we feel could get worse as the disease progresses and our Pancreas becomes more damaged.
My Experience With The Costs Of Pancreatitis Chronic Pain
My experiences are probably a lot like a lot of yours if you suffer from Pancreatitis Chronic Pain.
Every morning when I wake up I’m sure that we go through some of the same things. That is if the pain has even let us sleep in the first place and hasn’t woken us in the middle of the night.
If I do sleep, even before I get out of bed in the morning, my day starts with a sort of self survey as I check where my pain level is to see how I feel. Is that pain in the background or is my Pancreatitis chronic pain threatening to grow into a more painful Acute flare up that could put me back in the hospital?
Are there new pains that could indicate something else is going wrong or is it the same normal dull pain that I experience everyday – all daylong?
When I sit up I check my feet to see how much they hurt and whether or not they are swollen. Because of the damage to my Pancreas, I’m also a Type 2 Diabetic and because of that have neuropathy pain in my feet that can be excruciating at times.
Sometimes with the pain meds that I am forced to take for the pancreatitis chronic pain it will help the pain to recede to a dull ache that I try to ignore as I go through my day. Other times I’ll ne in so much pain that I can barely get up and walk let alone get anything done.
Once I get up I shuffle into the kitchen where I check my blood sugars. A lot of times when a more severe Pancreatic flare up is coming the first sign that I get is higher than normal blood sugar numbers.
I have a handful of pills that I take along with the insulin that I have to inject myself with twice a day. I also have to prick my finger several times a day to monitor my blood sugars – more if I’m having a Pancreatitis chronic pain flare up.
My Acute Flare Ups
Although I am constantly dealing with Pancreatitis chronic pain I’ve also ended up in the hospital for severe Acute Pancreatitis flare-ups more than 17 times since my first attack about 4 years ago, the chance of this happening again is a very real concern that is always hovering nearby in the back of my mind.
Some flare ups I can handle at home – I move around more carefully or even will stay in bed most of the day. I’ll try to drink fluids to keep hydrated and avoid eating any food to let the Pancreas have a chance to cool down and hope the pain goes away.
Other times, if the pain becomes too intense, I have no choice but to go to the hospital because the pain meds that I am prescribed aren’t working and I need the more powerful painkillers I can only get at the hospital. With the more intense pain comes the nausea and it all makes my brain become foggier so it becomes harder to make decisions.
I’ll say right here that I hate going to the hospital. I’ve had some really bad experiences with some Doctors when I go so the last place I ever want to go to is the hospital. Plus, sitting in a waiting room in the ER while you are in excruciating agony is no fun.
So many times when I do go to the hospital it is because I’ve stalled as long as I can and am unable to stand the pain any longer. Many times my partner goes into another room and calls 911 for an ambulance because he can’t stand me being in so much pain.
Once you get to the hospital it always seems like you have to prove that you are actually in pain and not just drug seeking. Then of course, as anyone who has gone to the hospital with a pancreatic chronic pain flare up, there is always the same question – are you an alcoholic.
I’ve had short stays of a few days in the hospital and others that lasted a week or two. I’ve had some very good Doctors and a couple that made me just want to crawl out of my room and try to get to another hospital.
The New Survey
This recent survey by Yahoo Health and Silver Hill Hospital gives some needed insight into the huge costs that come with Chronic Pain. While this survey wasn’t specifically about Pancreatitis chronic pain the lessons learned from it can give us all a lot of insights into how much our pain is effecting us.
According to Seddon Savage MD, who is the medical director of Silver Hill Hospital’s Chronic Pain and Recovery Center and one of the surveys main researchers, “The survey really reinforced how devastating pain can be, but people do want to get control, especially with self-management and fewer drug treatments.”
82% of those surveyed : reported that their pain was never far away.
They reported that they thought about their pain either “constantly” or “frequently” with 71% reporting feelings of anxiety or being on the edge in the two weeks prior to the survey. Then 73% also said that this caused them to have “little interest or pleasure in doing things.” Pancreatitis chronic pain is like this – it can sap the energy out of you both physically and emotionally.
53% of those surveyed : felt that their Health Care Providers were not very helpful.
These respondents also said that their Providers were either “minimally” or “not at all” effective in treating their pain even though two thirds of them felt that their Doctors were taking their chronic pain seriously.
In groups many report that Doctors don’t understand their pancreatitis chronic pain and refuse them pain meds.
There are a lot of Doctors that will try to understand and help you when you are in pain. But it only takes one every once in a while that is rude or refuses to help to color your view of the entire profession.
90% of those surveyed : said that their pain interfered with both their fitness and social life.
One important take away of the survey should be that living with pancreatitis chronic pain will dramatically change the way that we live our lives.
In the study, 41% of the respondents said their life was “not very good” or “poor” since they started dealing with chronic pain. And nearly 90% said that the pain made it difficult to get consistent physical exercise or to maintain an active social life.
75% of those surveyed : said that chronic pain was taking a toll on their marriage.
Not surprisingly dealing with chronic pain has a strong effect on those around us, especially those that we love.
“There’s nothing people want more than a strong love,” Savage says. “Since it’s common for spouses or significant others to misunderstand pain, or feel like they become their partner’s servant during bad times, it’s important for those in committed relationships to be involved in the treatment.”
This shows how important it is to try to get your spouse or significant other to attend your doctor’s appointments. Doing so helps them to know what is going on, know what purpose the medications you take serve and better understand what they can do to help.
Also, by letting your spouse ask your Doctors questions about your Pancreatitis Chronic Pain they’ll know more about what you are suffering through and this may lessen this tension.
63% of those surveyed : said they felt “down, depressed, or hopeless” in the past two weeks.
Depression is a major problem that can be caused by pancreatitis chronic pain and this survey bears that out. Trying to live a normal life while fighting chronic pain can be next to impossible and that inability can cause severe depression.
Pancreatitis chronic pain can be so bad at times that it makes you just want to find a way to hide away from the world and avoid all contact with anyone and everything around you.
It is important that if you are severely depressed that you seek the help that you need. Depression is a very sly condition that can sneak into your life so you need to make sure that you are watching for it.
Pancreatitis Chronic Pain Conclusion
Almost everyone has probably experienced some type of acute pain at one time or another in their lives. You might be in an accident or hurt yourself playing sports. The pain you experience is excruciating and you cry out in pain and agony. But the difference from that and Pancreatitis Chronic Pain – it that in time it goes away and you heal.
With Pancreatitis Chronic Pain, the pain is never far away – in fact it seems that it is almost a living thing that waits until you are just a little complacent to strike again.
And suffering from Pancreatitis Chronic Pain doesn’t have to mean that the pain is debilitating. Even a lower level of constant pain could severely impact your life if it makes you change the way that you live.
I wish that there was a way to hook up Doctors or others to the intense pain that we feel during an acute flare up so they could understand better what it is that we are going through. I’m willing to bet that if even those few Doctors who are so difficult to deal with had a better understanding of the level of pain that we are forced to live with every day, they would become more compassionate.
But even then they could disconnect from the pain and go about their normal lives so they wouldn’t understand how much Pancreatitis Chronic Pain costs us when it is with us day in and day out – all day, every day.
This means that we have to be our own advocate and make sure that we are always pro-active and working to make sure that we get the help that we need. If we don’t then who will?
I suffer with Chronic Pancreatitis pain everyday. What are the costs? For me, it’s my life. I fight now in hopes there will be a cure someday. Life as I know it now, is not living. I can go without sleep, I can go without food but the never ending pain. I can do without. Pain meds don’t work long enough or not at all. I’ve been told by doctors there is nothing more they can do. I am so tired of living on the couch and watching life pass me by.
I agree. Chronic Pain beats us down to a point where it can be tough to get back up. It makes living any kind of life tough. But hope may be on the horizon. I read recently about a artificial pancreas that they are testing that could help those of us with major damage to our own. Keep your head up – wishing you the best!