I have been pondering writing about this topic for over a year now. It has been on the back burner ticking away when it came back to light a while ago with a conversation on Instagram by Spoonfuls of Chronic.
Six years ago I first touched on the subject of Doctors Visits focusing on the sometimes, unnecessary really, purpose of going, just to touch base so the doctor’s notes are there as evidence for Personal Independence Payments. This is still a thing to a degree, but not as much as in the early days.
The presence of new symptoms
Having lived with Fibromyalgia for nearly a decade, I often find that there is a a different quandary. The presence of something new. Many members of the Fibro community use the term muggle illness. As in the Fibro sufferers have the “magic – of the horror variety” illness and they may catch a normal person illness, like a cold, on top of their regular ongoing Fibromyalgia. Strangely enough this was backed up by the ENT specialist who referred to Fibro as my magic power that wreaked havoc with system.
But what about when a new symptom arises that is not an easily ruled out, common, quick passing virus. One of my first cases of this was in 2020 when I developed chest pains, I talked about it in this post, and, spoiler alert, it turns out these were related to the Fibro anyway. Is it time to call the doctor?
Do I deserve the Doctors time?
In the UK, we are both blessed to have the NHS, but at the same time know it is stretched to nearly breaking point. Therefore when new symptoms crop up there is a conversation I have with myself. Is this likely to be serious? As I am already permanently “on sick” is it right, with my Doctor’s Visits to take the appointments from an employed person who needs to be seen to get a fit note or the treatment that can get them back to work.
In other words out of social consideration I am pretty much making myself a second class citizen who feels they have less rights to facilities than others. Why do I do this? More importantly how long may it take for my “this must be just a new Fibro symptom” that frustrates me but I live with it, to have actually been something serious that I leave too long to be dealt with. That is a thought that crosses my mind sometimes.
How serious is the new symptom?
Part of me thinks, if my temperature, blood pressure (adjusted with medication) and heart rate are all within normal limits it can’t be anything life threatening. But then so often we read about people with life limiting conditions that had no symptoms…
Facilities at the Doctors
Part of this quandary is not my fault though. Michael (my husband) has type two diabetes and the doctors surgery runs clinics throughout the year. In my case they seem to do annual blood tests, if they find something, like my blood pressure, I need them more often as we sorted out medication. Other than that my prescriptions are renewed for the year. I have Lansoprazole, Amitriptyline and Co-Codamol. Thankfully I have never become addicted to the Codine element and save them for my bad days so I have something to help. I basically taught myself to deal with being in pain every day and can use Paracetamol if I need something in between.
How GP’s Manage Chronic Illnesses
So it seems certain chronic illnesses, like Diabetes, that can be gauged with a test and treated effectively with medications, have organised pathways to monitor them. Because Fibromyalgia is complicated, effects everyone differently and can’t be diagnosed with a straightforward test, each practice decides how to manage it and my current GP practice has gone with an annual blood test to see if anything else is happening and otherwise leaves me alone unless I reach out to them – this circles back to my “Do I deserve the Doctor’s time?” quandary.
Doing your Research
Given that the surgery does not seem to have any particular “pathway” for managing Fibromyalgia it then raises the question is anyone keeping up with any research or developments? I have often heard the quote in the Fibromyalgia community that your everyday experience is their one hour lecture – at best! As I shared in the post about my Journey to Diagnosis, I was very fortunate at my previous practice as my GP took it upon herself to learn about the condition and stay to to date. If I had to develop this condition I am forever grateful that she started the journey with me.
Now though I feel it is my responsibility to try and stay on top of things and do my own medical research. It is not always easy, complex medical papers are not the best things to deal with, especially when the Fibro Fog is at it’s worst. There are times when just dealing with day to day living is enough. I would rather spend my spoons on things that will provide pleasure and light in amongst the darkness.
AI has it’s uses!
I have various thoughts about AI, in some ways I love it and in other contexts I hate it. I think I will write a post about it on one of my blogs soon (and if so I will link it here). One use that I thoroughly appreciate is it’s summarising ability. When there is a complex medical document I think it is really in my benefit to know about, asking AI to summarise it in simple language and point out anything that will be of benefit to me, is helpful – I just need to remember to do this.
Do you debate whether to call the doctor?
I guess whether you live somewhere like the UK where you have free (at the point of contact) healthcare, or the USA where, depending on your insurance Doctor’s Visits may be costly, or any other system in between. How do you feel about calling the doctor? Are you in regular contact? Do you lead the conversation or do they? Is it just me or do you have any guilt over taking the doctors time?
Whatever your experience I would love to hear your thoughts on the subject.
Until next time,
Gentle Hugs,
Susan
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