Living With Chronic Pain Part 3

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?

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.

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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