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Living With Chronic Pain Part 3

Don't Give Up on Finding Relief

By Harmony KentPublished 2 years ago Updated 2 years ago 7 min read
22
Living With Chronic Pain Part 3
Photo by Road Trip with Raj on Unsplash

In one of the comments on Part One of Living with Chronic Pain (Getting Yourself out of Bed), someone left a wonderful comment, which I felt deserved its own post to look at the issues he experienced more closely. This is because—sad to say—I also am experiencing similar issues.

[If you missed Part Two—Debilitation and Loss of Autonomy—you can find that HERE.]

John's comment read ...

'On one of my specific conditions, I found the medical establishment quite unknowledgeable and often thought of me as a possible hypochondriac. While having a routine chest x-ray for pneumonia ten years ago, the radiologist suggested a diagnosis to the rheumatologist. After a blood test to confirm the diagnosis, my condition was and is still treated with infusions every six weeks. So, after 40 years of agony, that condition is relieved. My point is if one is in chronic pain, do not give up on finding relief.'

Unfortunately, I am still going through what seems an endless process of trial and error, more trial, more error, and now my general practitioner telling me he is baffled. This doesn't feel good. I have an appointment—my first face-to-face in a long time—in two weeks. Hubby and I expect to face a bit of a battle to get a referral on to a specialist other than a pain team consultant. The pain team can only look at the symptoms and not the cause.

Make no mistake: the pain is a symptom rather than the cause.

Worse still, my GP has told me, already, that the longer these issues go on, the less likelihood I have of receiving any diagnosis or treatment. So, today, it feels like a now-or-never, last-chance situation. Apparently, in the UK, anything with a history of 15 months or more is highly unlikely to get referred on after that point. As this all began in June last year, I'm on borrowed time already, according to that parameter. If anyone knows why this is so, I'd love to know!

My biggest fear, looking ahead, is that the medical establishment will stop taking me seriously, and I will not receive any meaningful pain-relief treatment. I know too many people in this horrendous situation to be able to dismiss my fears easily.

So, what can I do?

By Brett Jordan on Unsplash

My best efforts need to be in proving the establishment wrong—if it comes to that. My first step is to ensure dear hubby attends my GP appointment with me so he can back up everything I say and give his own examples, which will all help to validate my patient report.

It seems so sad that this is a necessary step, but I have found in the past that having my husband verify and emphasise what I say goes a long way to being taken seriously. So, the best advice I can offer if you or a loved one find yourself in this difficult situation is to take somebody with you—that you trust—who can let the doctor know that what you say is so. A person who can help place needed emphasis on the effects on your daily life that your chronic pain is having.

My next step is to write everything down. As much as possible. My GP, kindly, advised me that at this point, more emphasis for diagnosis will likely get placed upon my list of symptoms rather than any possible blood tests. I'm grateful for this information, as forewarned is forearmed. While it will take time and effort, and some pain, for me to do this, it's vital that I get it done before that appointment in two weeks.

At first, the doctor thought my muscle spasms and nerve pain/weird sensations might be due to something called Polymyalgia. But because my symptoms aren't following that symptomatology pattern too precisely, we then discussed the possibility of a vaccine injury—this specific set of pain and symptoms began seven days post 2nd Astra-Zeneca COVID-19 vaccination injection. However, right now, it's still all guess work.

So many immunological and/or neurological diseases share so many symptoms it can become almost impossible to pin-point a particular culprit unless the body behaves in a textbook fashion. Which, as we're all so individual, isn't actually that common. And some diseases, such as Parkinsons (to name but one), can hide until the illness is so far progressed it's too late for much effective treatment.

The bottom line is: We Just Don't Know.

By Karsten Winegeart on Unsplash

As I said in Part Two:

Patience is essential.

As is perseverance ... until I simply cannot do anything further.

Honestly, it's so hard to not give up at times. Already, even before this next hurdle, I've had to push through and endure so much. For certain, I have to do my best to avoid statements in my head that are unhelpful—such as: This isn't fair, and I can't do this anymore.

Fairness just doesn't come into it. This is my life. Likewise with not being able to do this anymore ... this, too, is my life. All I know for sure is that 'this too will change' ... whether that's for better or for worse, who knows!?! I DO NOT want to think about it!

Take one step at a time.

I cannot emphasise the importance of this enough. If I think too much about what might happen, I'll just make myself feel so much worse than I do already. It's more than overwhelming at times to deal with what is happening, let alone what hasn't happened yet. Time and again at desperate junctures of my life, this advice has saved my sanity. The easiest way I know how to manage this is to take a breath. Just breathe. In. Out. In. Out ...

Take a breath.

If I can breathe, I can calm my racing mind. I can come back into the moment. Even if this moment is painful, it's nowhere near as overwhelming than if I panic about any possible future events.

Talk to someone.

It also helps my sanity if I can sound out my concerns and fears to another human being ... or, if it's safer for you—or you're alone—your dog or cat or budgie, or any pet willing to sit and listen! :)

Your sense of humour is essential.

Those are my thoughts for today. Here's a quick summary:

  1. Write everything down
  2. Take a trusted person with you to any medical appointments
  3. Persevere as much as possible
  4. Patience is essential
  5. Take one moment at a time
  6. Take a breath. And another
  7. Talk to someone ... or a pet
  8. Keep your sense of humour

It is my sincere hope that by sharing my personal experiences, I may help anyone who lives with chronic pain, or who cares for someone going through it. To know I'm not alone is invaluable.

If you have any thoughts or tips, I’d love to hear from you in the comments below.

Thanks for reading, and I look forward to seeing you in Part Four! Hugs, Harmony 💕🙂

© 2022 Harmony Kent

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[DISCLAIMER: Harmony Kent is not a medical or health professional. All content and media in this Vocal piece on Living with Chronic Pain by Harmony Kent is created and published online for informational purposes only. It is not intended to be a substitute for professional medical advice and should not be relied on as health or personal advice.

Always seek the guidance of your doctor or other qualified health professional with any questions you may have regarding your health or a medical condition. Never disregard the advice of a medical professional, or delay in seeking it because of something you have read on this page.

If you think you may have a medical emergency, call your doctor, go to the nearest hospital emergency department, or call the emergency services immediately. If you choose to rely on any information provided on this page, you do so solely at your own risk.]

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About the Creator

Harmony Kent

The multi-genre author who gets write into your head

I began writing at 40 after a life-changing injury. An avid reader & writer, I love to review & support my fellow authors.

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Comments (20)

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  • Manikandan Blog Writer3 months ago

    very good

  • Oluwadare Samuel7 months ago

    Check this out fam https://vocal.media/fiction/epic-quest-for-a-lost-artifact-the-quest-for-the-crown-of-elysium

  • Hamza Shafiqabout a year ago

    Stay blessed always with your loved ones

  • Farhan Mirza about a year ago

    check my work too harmony cantt

  • Mariann Carrollabout a year ago

    It’s nice to have a support system. I used music to help through the pain . We push our body sometimes beyond its limits. I hope you feel better ❤️‍🩹❤️🙏🏽

  • Stephanie J. Bradberryabout a year ago

    I am so glad you have a supportive husband. Mine (now an ex-husband) was not supportive when I was trying to figure out why my body was going super haywire. And now, what he called "a little hobby" of helping others take charge of their health is now a successful business that even doctors come to solicit my help for their health concerns when their own community turns their back on them.

  • Sarah Stuartabout a year ago

    KEEP GOING, HARMONY. I know a lot of medics, so I will try and find out for you if there is any truth in the 15-month deadline. It is wrong that your words need validation, but it makes sense that having someone to do this will make people listen, especially, in this day and age, if it's a man. God bless, Sarah

  • Mae Clair2 years ago

    I can't imagine what you must feel on a daily basis, Harmony. I do recall the chronic pain my father suffered from cancer (when I was a child) and how scary that was for me---to see a parent in such suffering. I do pray you find relief and that the powers-that-be take you seriously. The only thing I can offer on top of all those items you listed, is the one I rely on the most, and that is prayer. It's my prayer you find relief. ❤️

  • Michele Jones2 years ago

    You bring up many valid points. But one that sticks with me is that you need to bring someone with you to validate your claims. It's sad that they don't take your word for the pain, and that you need someone to vouch for you. You keep fighting and that is what counts. Family is important and you are blessed to have someone to lean on.

  • CS Boyack2 years ago

    Hope they will take you seriously and find you some relief.

  • Staci Troilo2 years ago

    Many years ago, my father made multiple appointments with his doctor for a clogged ear/ear infection. The doctor kept saying he did not have an infection and was suffering allergies. He persisted. Finally, he was sent for a scope. They found metastatic lymphatic cancer. Thank God he kept trying to find relief. He wouldn't be with us today if he'd given up. We're our best (and sometimes only) advocates. You raised excellent points. I'm glad you haven't given in. Keep leaning on your family and friends, and keep after your medical team until they help. I'm so sorry for what you're going through, but I know you'll come out on the other side stronger for it.

  • Joan Hall2 years ago

    I am so sorry you're having to deal with this. Prayers that you are able to get answers. John's comment is so true. Unfortunately, many in the medical community have become jaded because there are so many patients with drug-seeking behavior. This is no excuse for those professionals, and they should never judge a patient because of another one's behavior, but the actions of some hurt those who need help the most. Wise advise you've given here.

  • D.L. Finn2 years ago

    Sorry you have to deal with getting the help while trying to take care of yourself. I've been down this path and had to find relief in other avenues. It is frustrating when one doesn't fall into the neat accepted box, it is assumed it is mental and not physical until they learn more. I once saw a therapist to deal with dealing with illness, and I was told I may not know what I am fighting but to focus on healing anyways. That went against my fighter instinct but later was a good piece of wisdom for me. Glad you have the support and are looking for answers and most important talking about it! Sending healing hugs.

  • Robbie Cheadle2 years ago

    HI Harmony, I am so sorry to read about your struggle for a diagnosis. I have been through this struggle with my sons. Once with Greg and once with Michael. It took us 18 operations and on-line discussions, in and during theatre procedures, for a diagnosis for Greg to be established. The on-line discussions were between our local doctor and two doctors from the Children's Hospital in Toronto, Canada. God Bless Dr Pitcher for his perseverance in getting us a diagnosis. Michael's case was even worse and took longer to unravel. He nearly died twice as a baby and twice as a toddler. Last year, he stopped breathing during surgery and ended up in ICU again. He had a panel of national doctors who convened monthly who all accessed his case. Finally, after nearly 16 years, a diagnosis has been made and he is doing a lot better. I can't offer you any advice other than to not give up. The answer is out there somewhere, you just need to find the person who holds the key. Hugs and well wishes to you.

  • David Prosser2 years ago

    Use your humour to challenge the one who interviews you. Either suggest with a laugh that he/she must see this day in day out but is probably not able to come up with a good diagnosis leading to the right treatment or tell them , if they get this right you'll remember them when you win the lottery because this would be like a lottery win for you. I'm yjinking of you Harmony, Good Luck Sweetie. xxx Hugs.

  • John W. Howell2 years ago

    Thank you so much for the mention, Harmony. I hope you get to the bottom of your condition and that you can get relief. It is not an easy struggle but well worth it if you are successful. You have my prayers that the appointment will deliver some positive next steps.

  • Jan Sikes2 years ago

    You have been through so much, Harmony, and all of your strength is tested. You have the right attitude, and I know many folks will benefit from your insight. I am praying that you get some conclusive answers in the upcoming appointment. Thank you for sharing!

  • Priscilla Bettis2 years ago

    Oh Harmony, I'm so sorry to hear what you're going through, but I like your determination, too, as evident in this essay. I wish you the best medical care, the bestest friends, the best of everything to help you through.

  • Gwen Plano2 years ago

    Your series is invaluable, Harmony. So many folks suffer alone without knowing that others are with them, if only through an email or post. Sending love your way and much respect. ❤️

  • V.M. Sang2 years ago

    Harmony, I cannot imagine what it must be like to live with chronic pain. Your post is an inspiration to all those who have this problem. Thank you for your courage, sense of humour and optimism.

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