There is More to Chronic Pain Than Just Pain

Most people understand pain. Whether it’s from an occasional headache, a broken leg or a stubbed toe, most people understand what pain feels like. But chronic pain? Not everyone will understand what that is like.

When Does Pain Become Chronic?

Chronic pain is defined by NHS Inform as pain that carries on for longer than twelve weeks despite treatment.

Pain that lasts for twelve weeks probably sounds dreadful to most people because they’re used to pain that resolves itself. But what if the pain goes on for even longer than twelve weeks? For twelve months perhaps? Or even twelve years? Or what if the pain continues with no end in sight?

I have lived with pain since I was a teenager and that wasn’t yesterday. I’ve had four decades of living with pain from various conditions. While some people can’t imagine life with pain going on continuously, I can’t imagine life without it. For me, it’s just life because I now know nothing else.

And, unfortunately, it’s life for millions of people worldwide.

There are a huge number of conditions that cause chronic pain. A few are:

  • Arthritis
  • Back pain
  • Fibromyalgia
  • Irritable bowel syndrome
  • EDS (Ehlers-Danlos Syndrome)
  • CRPS (Complex Regional Pain Syndrome)
  • ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
  • Trigeminal neuralgia and other headache or facial pain conditions

However, very often, there is no known cause for someone’s constant pain. When people can’t be given a name for their pain, it often leads to them feeling like they’re not believed. A name does make a difference.

Pain Affects So Many Aspects of Life

It’s more than the pain itself and it’s more than taking medication four times a day. It can bring with it a multitude of other problems.

To wake up every morning (if they’ve even slept), knowing that the day ahead is simply going to be full of pain, can be grim and dire. Pain is unpredictable, demanding and demoralising. It can be soul-destroying.

People can suffer from fatigue, tiredness, insomnia, confusion and concentration problems.

Sufferers often live with emotional and mental health problems such as depression, anxiety, stress and tension. They may live with fear, guilt, frustration, bitterness and anger. They often suffer from self-loathing, low self-esteem and low self-confidence.

There's more to chronic pain than just pain. Picture of dead thistles.

Sufferers Are Often Not Believed

We live in a fairly judgemental society so sufferers often feel the need to justify themselves. Since their pain invisible, some people might not believe them. Family. Friends. Colleagues. Benefit agencies. Insurance companies. Even doctors. They are living a nightmare most days yet the people who should believe them, so often don’t. Sufferers are often told the pain can’t be that bad, that there’s nothing wrong with them or that they’re just lazy. They’re told to “just get out of bed and do some exercise.” They are told they are fit to work despite their pain.

Financial problems

Since they are unable to work many sufferers depend on state benefits or financial help from families so they feel as thought they are a burden. Food, heating and health care are basic necessities in life but due to their pain and inability to work, they are often unaffordable.

Friends and Families

Pain often dictates what they can and, more often, can’t do. Sufferers can’t always go for coffee with their best friends. They aren’t always able to go to a friend’s birthday party. They may not manage to go to a family wedding.

Friends sometimes drift away. They might want a more ‘reliable’ friend. They might want one who will be there, not one who cancels at the last minute because of their pain time after time.

Families can become frustrated. Sometimes they can’t understand why the pain can’t be cured with some extra strong headache pills. They might not be able to handle seeing their nearest and dearest in pain. Sometimes they might not believe that the pain can be so controlling. And sometimes they might want a more ‘reliable’ relative. Sometimes they too just drift away.

Many sufferers deal with loneliness and isolation because of this.

Relationships

Pain gets in the middle of everything, including close, intimate relationships. So it takes an understanding person to cope with their partner’s neverending pain. They often need to be a carer as well as a partner. They might need to accept nothing morethan a gentle hug, put up with the days when showering is impossible and give help with simple daily tasks like washing and dressing.

A Sufferer’s Pain Becomes Their Partner’s Pain Too

Because they are closest to them, they often see the moods, the frustration and the tears. Their partner’s pain affects them so much, that it actually becomes their pain too and they need to endure it together. But sadly, for some couples, that becomes too difficult.

Finding Help

Prescriptions are dished out for the pain, but those ‘extras’ need to be dealt with too.

Getting help is so important.

Doctors need to find better solutions. Medical professionals need to recognise exactly what sufferers live with – it’s not just pain. They need to treat the whole person, not just the pain.

Chronic Pain is a Condition in its Own Right

From May, 2019, for the first time, the World Health Organisation included chronic pain as a disease in its own right.

There will be two classifications. The International Association for the Study of Pain explains the classifications:

Chronic Primary Pain

This will be characterised by disability or emotional distress, which does not fall under the heading of another disorder. It will cover widespread pain, chronic musculoskeletal pain, some headache conditions, non-specific pain and other conditions such as chronic pelvic pain and IBS.

WHO will now class those conditions as chronic pain syndromes.

Chronic Secondary Pain

This will have six categories:

  1. Chronic cancer-related pain is related to cancer or its treatment.
  2. Chronic postsurgical or post-traumatic pain develops or increases in intensity after a tissue trauma.
  3. Chronic neuropathic pain is caused by a lesion or disease of the somatosensory nervous system. Peripheral and central neuropathic pain are classified here.
  4. Chronic secondary headache or orofacial pain contains chronic forms of headaches, orofacial pain, such as chronic dental pain.
  5. Chronic secondary visceral pain is chronic pain secondary to an underlying condition originating from internal organs of the head or neck region or of the thoracic, abdominal or pelvic regions.
  6. Chronic secondary musculoskeletal pain is chronic pain in bones, joint and tendons arising from an underlying disease classified elsewhere.

Chronic Pain Sufferers Need Hope

Hopefully, the changes from the World Health Organization will mean that sufferers could get better access to treatment. It could also mean extra funding for much-needed research.

People desperately need this hope.

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67 thoughts on “There is More to Chronic Pain Than Just Pain

  1. Mark Kent

    most people never see the every day effects .i have m.e ..ibs..migraines long list health issues
    i take part in a lot lot research

    my blog,http;//mark-kent.webs.com

    twitter,supersnooper

  2. Wow, you have encompassed so much in this post. I nodded to all of it.. it affects so many aspects of life, it’s not black and white, it’s invisible so we’re often not believed, it is certainly far more than ‘just’ pain. An excellent post! xx

      1. Beth T. Houser

        My daughter said, “If there was a god, he wouldn’t let you suffer like this, Ma.”

        I said, “If I didn’t have the Lord holdin me every minute, Baby Bear, I couldn’t bear it at all. I wouldn’t have thought of you and our family – I would’ve just ended it years ago .”

        It may be different for others, but for me – my hope is that I am in His hand, and in the end, I will step into a glorified body and spend eternity with the Son who died for me.

        Today is temporary, so the pain is temporary. Life is in the moments! I grab every moment I can, and focus on what is infinite – love, joy, peace, long-suffering, gentleness, goodness, faith, meekness, temperance. Against such there is no law … against such PAIN DOESN’T STAND A CHANCE!

  3. Hope is so important. Without hope, life with chronic pain can be depressing and lonely. Look forward to the good days and do what you can when you’re able.

  4. sjd68

    I can’t imagine what it must be like to be in constant pain. You’re right though trying to explain Chronic Pain to others and having them believe. I work in Pharma and it was an issue when Fibromyalgia drugs launched years ago in the states. The doctors almost didn’t believe it was a condition. My wife used to be a chronic migraine sufferer and luckily that has subsided for her. I’m happy that you have hope and that one-day others won’t have to suffer from chronic pain as you have.

  5. Francisca Garreton

    Chronic pain can be so frustrating and debilitating! I was sick all week with joint pain and it was really frustrating not to be able to move as much as I needed and every movement was just so painful. Thanks for sharing your insight.

  6. Joyce Osiango

    It is really important to have family members and friends who care and can always offer to help when through such pain. Sometimes the feeling of not having anyone can increase the pain so much.

  7. Trish

    I didn’t know WHO had classified chronic pain as a condition in its own right – that’s a really good move. If nothing else, it shows the medical field are starting to take it more seriously, which will benefit so many people.

  8. Snehal

    For me… I can relate to chronic pain from migraines. They are under control now due to strict sleep schedule. Thank god 🙂

  9. Junell DuBois

    I have some dear friends who suffer from chronic pain and it does affect their lives in so many ways you don’t realize.

  10. erica3639

    I have a couple friends who suffer from fibromyalgia and EDS. The lack of understanding is horrible. One with fibro recently went to a specialist who told her to basically suck it up and deal, after refusing to continue refilling her prescriptions. Told her to try meditation. I am always sad and horrified at how much people like that struggle to even be believed or treated with basic dignity by their doctors. Or even friends and family in many cases. I can’t imagine what life like that feels like, but I know compassion can go a very long way.

    1. Oh, Erica, that is awful. Doctors are the people we rely on to help us. It is terrible when they don’t support us. Telling a patient to suck it up is terrible and surely goes against their medical ethics.

  11. You have a lot of good points in this post! They are now separating ‘chronic’ and ‘intractable’ as two separate types of pain. The ‘chronic’ is constant pain that comes to an end and might kick back in. “Intractable” is pain that is lifetime, never to be expected to end. Intractable pain is nothing to aspire to, lol. But the thing I have found in dealing with it is to accept the ‘new normal’. And to accept that someone who does not a relationship with chronic pain personally, will never truly understand what we go through. Even doctors will not have this capability to really get it, unless they get it. Had to put some sarcasm in, that is just my personality. oops. I have a post waiting to be edited, one day, that goes into it a little more. [pardon any typos, I can barely see and the screen gets fuzzy the more I zoom in]

    1. Thanks for this extra information. I agree, we have to accept what we’re living with, otherwise we have a constant fight on our hands. That uses way too much energy.

    2. Sandy

      Very accurate. I would add one more item. At least here in the US, it’s very difficult, if not impossible, to even get pain meds. Even with imaging showing what’s causing pain, or diagnosis verifying severe , intractable pain, many are left with no help, no meds for relief, nothing. That has to changein order to give people hope. I wish more people really took the time and effort to understand what people with chronic pain really deal with and go through. Anyone who is close to a pain sufferer should read this article.

  12. I don’t have chronic pain, but one year I had intense pain in my side and it escalated into a kidney infection that led me to the ICU. Ignoring it almost killed me and I know that mine was only brief, and nothing like what those with chronic pain feel, but it makes me respect those who have it

  13. What a powerful post. Depression and loneliness are serious issues that come with chronic pain. It is difficult for people to see that and have an understanding for the person suffering. We all have to try and reach out to anyone we know with these issues.

  14. I’m not going to complain anymore when I have a migraine. When I have it its seems like the worst kind of pain, but it gets taken care with medication and some rest. I cannot imagine how it must be for people who are in pain for a very long time. After reading your informative post, am going to be more sympathetic and mindful towards people who complain but pain which I can’t see.

    1. Oh, migraines are terrible to deal with. I don’t want people to think their pain isn’t as bad. I know how bad migraines can be.
      Thank you for commenting.

  15. One of the misfortune of this present world is our constant desire for people’s acceptance. I can’t imagine how stressful and demoralizing it could be trying to explain what you’re going through to people who may actually never understand.

  16. In The Pastel Bag - by Joanna K

    As I was reading the article, I could think of two words: shame (for a condition not easy to understand), and guilt (for its permanent nature) .. Your article sheds light on life in pain. It helps people with no related experience to understand what that feels like and how they could be of support.

  17. Lyosha Varezhkina

    Just reading this post is making my heart jump in agony of pity. I know what it feels like and I know what it feels like when it no longer apply. I can only pray for people with chronic pain. And thank you for choosing this complicated topic

  18. Lavern Moore

    I have never experienced this condition yet I imagine that for those that do, this will be very informative. You bring a heightened awareness.

  19. Such an informative article ! I didn’t even know it had to be twelve weeks before pain is termed as chronic for one of my conditions interstitial cystitis it is six. I am sure like myself so many people and even their partners can relate to this article, especially the part about it being shared pain and not believed ! X

    1. Thank you. Yes, chronic pain is 12 weeks. I can understand that other conditions will have different times scales. It definitely is shared pain, isn’t it?

  20. Great post, thank you! I have had some success with CBD to help with some of my pain – specifically my migraines. I also make a pretty effective pain relief balm that is good for localized pain, but would not help generalized pain.

  21. Thank you for sharing such an in-depth look at chronic pain! Both my husband and myself are chronically ill and pain is a constant in our lives. The hardest part is the impact that has on everything, from day-to-day tasks to financial worries due to multiple appeals over disability benefits. I’m so glad to hear that chronic pain is finally being recognised in this way, let’s hope it makes a real difference moving forwards.

    1. Thank you for commenting, Amanda. I’m sorry that both you and your husband live with chronic illness and pain. People definitely have more to deal with that just the pain.

  22. This is so true, people so often dismiss pain as impacting you only physically. But it has an impact on the mental, professional, financial etc areas of your life.

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  24. Vanessa Guyette

    Really great post that is so accurate. Thank you for the info about WHO. I too suffer from chronic pain. I already had fibro for about ten years when I had a nearly fatal accident at 46. It left me so damaged and affected most of my body. That was fifteen years ago and I find myself in increasing pain each year. I have fought so hard to do anything possible to get some relief. I was more successful for several years, but the last 3-4 years my life has become very limited by pain that can’t be relieved enough to do much of anything. I still try to look for help of some kind, but it gets harder each year. I have had a couple of family members who have been unable to accept that some chronic pain problems can be debilitating. A few months ago I was told my one family member that I love with all my heart that I was just playing the victim and there was criticism regarding every exchange we have had for years. According to him, I have made it difficult to see me or talk to me because I won’t work hard enough to recover and get back to who I was. He has been with me little since my accident and doesn’t want to hear about anything I have ever done to get better or even interested in learning about fibro or chronic pain. He has made me uncomfortable to the point I don’t want to talk right now. It makes me so sad, but I can’t make people want to be a part of my life or believe I suffer to such a degree. Best of luck to all of those who suffer.

    1. Hi Vanessa, thank you for taking the time to comment. I am so sorry that you are dealing with such awful pain. Yes, chronic pain is debilitating. It’s not pain that will go away in a few weeks or months, so naturally we have to change. We can’t get the ‘old me’ back, instead we have to learn to live with the new version to the best of our abilities.
      When someone behaves like that, I guess we have two choices. One being to try to explain what life is really like and that they’ve hurt our feelings. Or we accept that they aren’t going to show empathy and we need to try to move on without them. When you live with so much pain, you don’t have much energy to spare, so sometimes you have to put yourself first, and try to move on. I hope there are other people in your life who are there for you.

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  26. Rory Gordon

    I’ve been clinically diagnosed with MS for over 17 years now (since I was 19), and suspect I’d been dealing with it since puberty. I don’t know if I will ever be able to understand the world of the healthy again. Cannabis is the only window that affords me a peek through. I’ll be starting Ocrevus by the end of the year (hopefully), and maybe I’ll be able to get a better grip on life outside of this neverending Hell.

  27. Thank you so much for writing and sharing this. I don’t think people get this, at least not able-bodied people. I suffer from mental illness, which has also caused some physical ailments which, sadly, aren’t going to go away easily if at all. It makes living, especially financially. I have to attend appointments and see my dotor, so holding a full time job isn’t possible at the moment unless they are okay with me leaving twice a week and having various things that I can’t do physically and mentally.

    It’s so hard some days, and yet my family just think I am bumming around at home doing nothing. It’s frustrating.

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