It’s easy to become so used to living with pain or illness, that we sometimes don’t notice when something is wrong.
For example, someone could have a dental abscess or an ear infection, but they think their trigeminal neuralgia is flaring up. Or a back pain sufferer might not realise their pain is actually coming from a kidney infection. The fatigue someone is dealing with might not be down to side effects of medication as they think. It might actually be a vitamin or mineral deficiency.
It’s very easy for someone with chronic pain or illness to put up with symptoms thinking they are normal.
This happened to me two years ago.
I Was Used to Pain and Feeling Unwell
I made excuses for each symptom.
My back pain was bad and I also had pain across the front of my body. But since I live with back and rib pain, I was used to it. It seemed normal. I was feeling quite light-headed, but my blood pressure is often low, especially when my pain is severe, so that felt fairly normal too. I also had stomach pain and was feeling generally unwell, but medication often makes me feel that way.
I didn’t think I needed to see a doctor. I was in pain and feeling unwell – everything seemed to be flaring at the same time, but I was used to that happening. However, this time, unbeknown to me, there was a serious underlying problem.
Thankfully, my husband was concerned and talked me into seeing the doctor. I expected my GP to tell me off for wasting his time but he didn’t. On checking, he discovered that my blood pressure was dangerously low. It was so low that he arranged an ambulance to take me to the hospital rather than allow my husband to take me. He didn’t know what was making me ill or causing my pain, but he said I needed to be in the hospital urgently.
The hospital did various tests and gave me morphine injections for the pain. By the evening, I was feeling better and I thought they’d let me go home, but something showed in a blood test which meant I needed to stay in the hospital.
I Had Acute Pancreatitis
A nurse hooked me up to an IV drip and placed a nil by mouth card behind my bed. Then a nurse from the high dependency unit told me that she and her colleagues would be doing checks on me every few hours.
I didn’t question anything. I hadn’t asked what had shown in my blood test and I didn’t even wonder why a high dependency unit nurse was checking on me. My morphine infused brain had made me so laid back that nothing phased me.
By the morning, I was a wee bit concerned. A surgeon came to speak to me and explained that I had acute pancreatitis. He said that one of the main causes of pancreatitis is drinking excessive amounts of alcohol. I don’t drink alcohol due to taking medication, so that definitely wasn’t the problem. He then said the other main cause was gallstones. He asked if I’d ever had gallbladder problems. I hadn’t.
An ultrasound scan confirmed his diagnosis, showing multiple gallstones. Because the gallstones were causing pancreatitis, I needed fairly urgent surgery to have my gallbladder removed.
What is Pancreatitis?
Pancreatitis (an inflamed pancreas) can range from mild discomfort to severe pain in the upper abdomen, radiating through to the back. In some cases, it can not only result in serious damage to the pancreas, but it can also harm other vital organs. It can be an extremely serious, life-threatening condition.
The blood test they’d done the previous day had checked the amylase score. A score of between 10 and 90 is normal. My amylase score was over 3,600 – not even nearly normal.
That score, along with my symptoms, indicated that I had pancreatitis.
I couldn’t eat as my pancreas needed to rest, hence the IV drip. I was feeling better but the High Dependency Nurse told me that I could suddenly become seriously ill which was why I needed to be monitored carefully.
Pain is Normal For Me
I am used to living with pain and feeling unwell at times. It’s normal for me. Because of that, I thought I was just having a bad day but I had a potentially serious illness.
Goodbye Gallbladder
I had keyhole surgery a couple of days later to remove my gallbladder. The surgeon said that it had been large and badly scarred and he was sure I must have been living with pain from it for a long time. But if I had been, I had never been aware of it. And that was because I was used to having pain. I hadn’t noticed this potentially life threatening pain.
It Wasn’t Quite Over
The day after my operation, I was sent home. Two weeks later, I still had high pain levels. But that was to be expected surely? Perfectly normal after surgery? My GP didn’t think it was and had me readmitted to hospital.
An ultrasound showed that my organs were looking fine. The pancreas was healthy, thank goodness. However, an x-ray showed that I had a broken rib which was causing the pain. But it also showed that I had multiple previously fractured ribs. I have osteoporosis, so fractures can happen fairly easily.
A few weeks later, I recovered and was back to dealing with my normal pain. However, the whole experience did leave me with the realisation that ‘normal’ pain or illness could actually be something more than that.
How Do You Know When to See a Doctor if You Are Used to Pain or Illness?
It can be difficult to know when to see a doctor. We feel bad all the time, so should we really bother them? Will they think we’re wasting their time? Don’t think that. My doctor reassured me that she knows that I live with pain and advised me to be extra vigilant.
- Learn about your condition so you know what to expect. If you have symptoms which aren’t normal for that condition, see your doctor.
- Learn about your own typical symptoms. (Using a pain diary helps with this). If something is different from your normal, speak a doctor. Give as good an explanation as possible. Tell the doctor everything, including the small details. Sometimes those small details are important.
- Trust your gut instinct if you feel that something just isn’t right and see the doctor.
- If your best friend were to experience your symptoms, what would your advice be? If your answer is “see a doctor”, take your own advice.
- Don’t ignore new or worrying symptoms. Always tell your doctor.
I don’t want people to panic about their health when reading my story. I just want people to be aware so they notice when something else is wrong. It’s always better to be safe and see a doctor.
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great information……..i can totally relate to this post. hope today finds you as well as you can be.
Thank you.
I went in with kidney issues due to Lupus and my doctor did indeed get irritated.
I am so very sorry to read this………..it makes me so upset when people with illnesses are not treated respectfully.
Yes, there are some doctors who are like that. It makes life even more difficult, doesn’t it?
I like the tips you give in this post, especially what would you say to someone else. And following your gut is a good one – we sometimes over think things after our initial thoughts but the gut usually knows best. Brilliant post – thank you for sharing x
Similar circumstances to my own story. My gall bladder was paper thin and full of stones, but only suffered mild indigestion as I was on omeprazole for 15 years to counteract the NSAIDs I was taking. Also found non alcoholic fatty liver disease from the meds and I also suffer rheumatoid and osteo arthritis, collapsed valves in my both legs, asthma, migraines, IBS and degenerative spinal disease. I had none of these except asthma 18 years ago, and a car accident triggered it all off like a house of cards. Hoping you’re feeling good, and keeping positive.
Oh, Jason, sounds like you’ve had a horrible time. Sorry about the car accident. That’s bad enough, but to think it triggered everything else – so sad.
Need to try to stay positive, don’t we?
Thank you. Yes, we should listen to our gut more often.
So relatable. I had dengue fever for three days before going to the hospital. Thought it was just Lupus flares (in fact Lupus fares can feel worse!). Hope you’re feeling better now x
Thanks, Sheryl. I remember you having dengue fever. That must have been so frightening. I’m fine now – the pancreatitis cleared up after the gallbladder was removed.
Still sounds scary t hough, and never nice to have a body part removed. Dengue fever can be deadly but in terms of pain, a bad flare can be worse unfortunately 🙁 I had more concerns about the pain from dengue though haha.
Definitely concerning!!
I so relate to this Elizabeth. I’m going through a very similar scenario at the moment. Great post x
Thanks Sam. I’m sorry you’re dealing with something similar just now x
This is a great topic to discuss. I’m sorry you had to go through acute pancreatitis. It’s a very difficult decision to make if you go to the hospital or not when you’re chronically ill. You don’t want to rush there when it’s a flare but you keep questioning if it could be something else. You gave some great advice. Loved it!
Thank you, Kirsten. Yes, it’s often a hard call to make.
I feel so sorry what happened with you. ? On a personal note… I am getting used to this problem of non stop sneezing in the morning to the point my eyes starts watering…. dont know if I am having sinus problems or what it is. But now I have got so used to it that it has become normal for me. Thanks for this post! You are somehow pushing me to see a doctor soon. And take care of yourself dear. ?
Thank you. Wonder if you have some kind of allergy. Do let me know how you get on.
This is fantastic! So relatable❤️
Thank you.
You poor thing- what an ordeal! But you are correct! I am so used to suffering and being so ill that I put up with so much before getting checked out and finding out something new is wrong. It has been dangerous for me too-internal bleeding! Dr’s not believing patients certainly doesn’t help!
You know, since writing this post, I have heard so many similar stories. It’s pretty worrying.
I’m glad your husband made you go to the doctor–that’s a scary situation. I can see how you would attribute the symptoms to your pre-existing conditions. A pain diary would be so useful in this situation, allowing you (and your doctor) to see what’s going on.
Hi Tracy, yes, I’m glad too. Husbands have their uses sometimes, lol.
Wonderful information here! Thanks for sharing your story…it’s important!
It’s important to know your body and trust your gut when you feel something is not right. I can understand how that could be difficult when you are already a pain sufferer trying to determine if it’s your existing pain or a new one. Gallstones are tricky as well. They present as some many other possible issues. Great tips
Thanks Scott. Yes, trusting your gut is important.
Gallstones & long term damage by the time you had your gallbladder removed, and a broken rib… yikes! A very astute point to raise about the danger of getting used to pain and either not noticing something out of the ordinary, or assuming it’s all part and parcel of other things you have going on. Really good pointers on this as it does pay to listen to our bodies, really get to know our symptoms and to trust our instincts.
Caz xx
Thanks, Caz. It really is important for people like us, isn’t it?
I’ll be the first one to admit that I go out of my way not to go to a doctor or hospital, unless I’m basically dying. I know a ton of people who are much the same way, and that isn’t good. I really should be going more often, but I’ve had a bunch of bad experiences, so I prefer to just ignore it. In your case, I can see how easy it would be to ignore. I also wonder how much better care you receive in your country. In the US, we’re basically numbers, get in and get out kind of thing. I’m sure that has a lot to do with why people don’t go to doctors. I’m so glad you receive better care than that, and are not treated like you’re crazy or it is just chronic pain. Thank you for opening my eyes to the need to pay attention to even “normal” pain.
This can me a hard subject for some. My friend has Lupus and is constantly in pain.
That can’t be easy, Kara.
I can’t even imagine being in pain all the time. This is eye-opening.
We have to learn to listen so carefully to our bodies when we have chronic pain – it’s too easy to ovewrlook something dangerous.
Very easy.
I run into this all the time. Sometimes I just randomly mention a symptom and my husband looks at me like I’m crazy and makes me book a doctors appointment because its not nearly as normal as I have tricked myself into thinking it is. Oops?
I’ve done that in my Doctor’s office. Just casually mentioned something as I’m about to leave and get that look!
I have always said it, you are the only one that knows how and what you feel and if you don’t feel 100% always talk to your doctor.
Imagine the gall bladder erupting inside of you?
Thank God you got it taken care of.
Thank you.
It’s a good thing your husband convinced you to see your GP. You must have been in an incredible amount of pain to not fully notice these other complications. Your tips are spot on, you really have to trust your instincts be be aware of how you usually feel when in pain.
I know, I am glad he did. I would have become very ill.
It’s so brave of you after all that you have faced in your young life. Yes pain can be misleading and at times leaves us clueless as to where it possibly is coming from.
Thank you.
I am so sorry you had to go thought this. Getting used to pain is scary and it leads to being insensitive to yourself. There are also pains which could overlap (same position and character of pain) so we need to make extra check ups to see it it’s fine
Hi Sam went to doctor 2 weeks ago after having back and abdo pain for a month thinking I had kidney infection and trying to treat it with increased water and regular pain meds. She thought I had Galstones as well as kidney infection but I had gall bladder removed year ago so measuring urgent liver and kidney scans. Hope you are feeling better. We do need to pay attention to our bodies.poP
Yes, that’s true, many conditions overlap.
When you are in pain do see a doctor and don’t let them tell you it is nothing! I was having trouble swallowing food and had to drink glasses of water to push it through. They did all kinds of swallowing and stomach tests and didn’t come up with anything. What they should have done is a CT scan, My gastro doctor said to me don’t worry you don’t have cancer- just take some vitamin D you will be fine. Well it kept getting worse so finally they decided to do the scan and by then it was very advanced stage 4 cancer! Needless to say three days later I started very strong chemo and survived with horrible side effects. I now deal with neuropathy-fibromyalgia- and chronic pain etc! Listen to your body when it hurts and don’t let anyone tell you you don’t know what you are talking about- it could cost you your life!
Oh, Sue, I am so sorry about your experience. That should never have been ignored, should it? I’m glad that the treatment dealt with the cancer, but I am sorry you live with neuropathy, fibro and chronic pain.
What drives me crazy is when I go to a doctor, explain symptoms I’m having, and they shrug it off and send me on my merry way. I don’t feel like I’m a hypochondriac. I don’t go to the doctor every two weeks with a new complaint. This happened to me when I was having issues with extremely heavy menstruation. I went from doctor to doctor until finally one took me seriously. I ended up having a hysterectomy. I have had symptoms of IBS for years and years, which includes abdominal pain. Not one doctor suggested I have IBS. So sometimes I just give up after a while, and stop bringing up the issue, or I try to figure out the issue on my own. But what if it is something more serious… like gallstones, or Crohn’s disease?
It is terrible when doctors don’t listen and shrug our problems off. It’s not them who are living with it.
It really is easy to push it into the background and ignore things.
Putting up with symptoms and hoping they just go away is never the answer especially since it could put your health at risk. I can see how always being in pain can make it harder to diagnose other things.
Yes, it’s never the answer.
Perfect timing for this excellent reminder, Liz. I will be including excerpts from this essay (with links and attribution, of course!) in a HEART SISTERS blog post to share your wisdom with my readers, too.
Thank you for this…
Thank you, Carolyn. I really appreciate you sharing. Please let me know when you do and I’ll share your blog on social media.
It’s up today – at https://myheartsisters.org/2019/06/23/ignore-pain-symptoms-in-chronic-illness/ Thank you again for this important nudge… ♥
Hope your feeling better. I sure can relate to this …too many times..
Thank you. I’m sorry that you can relate so well.