The importance of self-advocating: Reasons for ongoing tiredness/fatigue discovered.

[123-go]

I finished with prednisolone for PMR in January 2024 with no flares but persistent tiredness which caused me to suspect adrenal issues. I also felt stiffness and discomfort in the lumbar region. I had to push for a synacthen test which gave normal results. However, I was still dissatisfied with the lack of ‘interest’ in and no explanation for the unusual, unexplained tiredness, eg, needing a nap after breakfast 🙄 and inconvenient times throughout the day and evening. Over the course of a year the back soreness began to impact on walking and standing for any length of time and it became increasingly difficult to maintain an upright posture: I suspected a degree of kyphosis (increased front to back curvature of the spine). I reported the continuing tiredness (which I discovered through my own research can be a symptom of spinal issues) during at least two clinic reviews six months apart and although little notice was taken I persisted in wanting to know the cause. Finally, my consultant sent me for X-rays of the lumbar region. Results as follows in two lines of typed information at the end of my last clinic review letter:

“X-ray of the Lumbar Spine - no vertebral wedge compression fractures. It showed Advanced Spondylitic changes of the vertebral bodies. Mild spinal asymmetry present.”

Elsewhere, buried in the main body of the text, “Mild Kyphosis”.

I am grateful for the diagnoses but it looks like I will need carry out my own research to prevent or at least delay any further deterioration. Maybe I’ll get a management plan at my next clinic review…whoopee!

Moral of this story: Never give up! 💪

[DorsetLady PMRGCAuk volunteer]

Agree never give up… but there always seems to be something doesn’t there? Hope all goes as well as it can with your new issues..🌸

[123-go in reply to DorsetLady]

Thank you. I do operate on a ‘need to know ‘ basis: ie, if I know what I’m dealing with I can try to help myself. There’s so much useful, reliable information to be sourced-not least here.😍

[marionofnorwich in reply to 123-go]

Yes that is how i feel. If i understand i can help myself

[SnazzyD]

Sigh..

Well done!

[123-go in reply to SnazzyD]

Ha ha! I’ve sighed many a sigh 😏. I am in a good mood this morning😄.

[SheffieldJane]

I really admire your persistence.x

[123-go in reply to SheffieldJane]

I’m like a dog with a bone, SJ. It sounds as though I’m angry by nature-I’m not and I don’t enjoy conflict - but it annoys me when told in a letter you have this or that full stop and no suggestion or advice on future management, just, “We’ll see you in clinic in six months.”

[Grammy80 in reply to 123-go]

I guess they didn't know exactly who they were dealing with. I'm so glad you didn't let that 'bone' go. We know our own bodies......Heroic! As you say, once you can give 'it' a name then you can deal with it. My best to you and I hope you see some improvement.💞

[123-go in reply to Grammy80]

Thank you, Grammy! You know that you have inspired me, don’t you?🌺

[Kendrew]

Good things come to those..... who work flippin hard to get the answers they deserve!! ....and I know how hard a struggle it has been for you to get to this point.

Well done. Xx

[123-go in reply to Kendrew]

Thank you and please know that your support has been and is invaluable. I’d also like others to know that we are still capable of laughing 😂😂 even though we may be feeling ‘ugh!’

[Youngpoly]

well done for standing up for yourself. It’s so hard when compassionate interest seems to be missing with some professionals. Great that you are driving it even though it’s an uphill drive. Thinking of you.

[123-go in reply to Youngpoly]

You have hit the nail on the head with ‘compassionate interest’ which is so often missing. When it’s there it makes so much difference.

[powerwalk]

You've done well to be off the Pred! As a long-standing back sufferer myself, i hope you get some relief soon. Its very wearing! Let us know how you get on.

[123-go in reply to powerwalk]

Thank you. I will. 🌻