"Can someone as Young as You Really Feel That Much Pain?" - A survey on How People With Fibromyalgia Experience Healthcare in Sweden, 2021, Hasselroth

SAGE Open Nursing "Can Someone as Young as You Really Feel That Much Pain?" - A Survey on How People With Fibromyalgia Experience Healthcare in Sweden - Hasselroth et al - 2021

Research show that fibromyalgia has low credibility in healthcare, leading to poor treatment, lack of knowledge and disinterest. Therefore, people with fibromyalgia feel frustration, fear, anxiety and disappointment.

Objective: The aim of this study was to explore the experiences of people with fibromyalgia in their encounters with healthcare personnel in Sweden.

Method: A cross-sectional design, where 409 people with fibromyalgia answered an anonymous online patient-reported experience measure, developed specific for the study, with six closed questions and one open-ended question. Descriptive statistics were analysed by response frequencies. Correlation analysis were performed between demographic and clinical variables with the answers from the closed questions. Free-text answers were analysed with content analysis.

Results: A third experienced the treatment as bad (34%) and that they were not being taken seriously (30.5%). Almost half (47%) always or mostly felt fear of seeking healthcare related to fibromyalgia and that the health care personnel did not understand their diagnosis (46%). The majority (54%) experienced that the health care personnel did not understand how fibromyalgia affected them or how they could help them. The findings were confirmed in the free-text answers that were categorized into: Scepticism and disregard, Ignorance and disinterest and Professionalism and empathy. There were positive significant correlations between age and five of the questions (ρ = .105–.181, p < .05–p < .01), indicating that lower age is correlated with a worse experience. Furthermore, the duration of fibromyalgia showed a significant correlation with feeling afraid of seeking healthcare because of fibromyalgia (ρ = .144, p < .01), the shorter duration, the greater was the fear of seeking healthcare.

Conclusion: As a third of patients with fibromyalgia had bad experiences with healthcare, especially younger patients, knowledge about fibromyalgia needs to be increased and the patients should be taken seriously and treated respectfully, as well as given adequate support.

 

The study was published back in June, but today there was an article about it from a Norwegian news site about research.

Forskning.no: Folk med fibromyalgi føler ofte de ikke blir trodd, ifølge norsk forsker
google translation: People with fibromyalgia often feel they are not believed, according to a Norwegian researcher

quotes:

- Previously, doctors and researchers thought that fibromyalgia was an inflammation or a rheumatic disease without inflammation. Now they rather think that it is a hypersensitivity in the nervous system that makes it difficult to regulate pain, Woodhouse says.

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There is currently no medical treatment for fibromyalgia that makes people healthy, according to the NHI . Today, the disease is treated with physical exercise, medications commonly used for depression, information and education, behavioral therapy and a combination of these.

But so far, the treatment measures have been shown to have only a moderate or short-term effect.

- Advice from health professionals, for example, often involves self-effort and training. But these advices have proven difficult for many fibromyalgia patients to follow, according to Woodhouse.

They often do not think it helps, or they experience negative effects of the treatment, she says.

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So what exactly are the future prospects for patients with fibromyalgia?

Are you hopeful on behalf of patients with fibromyalgia?

- Both yes and no, says Anne Marit Mengshoel.

She talks about studies that indicate that stress plays a major role, and that the long-term ailments it entails help to maintain fibromyalgia.

Mengshoel is herself involved in a project where clinicians and researchers have joined forces to create a scheme for patients.

- It is a so-called patient education program and is based on patients who discover a connection between ailments, everyday life and their own wishes for their lives, can be better able to do something about their situation, she says.

 

No other profession can get away with failing this hard and never having to face any consequences for it. Just completely unable to look reality for what it is, amazing. Everything has to be turned around to fit their framing and preferences. This is genuinely as absurd as someone pushing for an all-coal energy policy as the way out of climate change, in the middle of a coal supply crisis.

 

My parents thought that children and teenagers couldn't be depressed because "what have you got to be depressed about?". The fact that I went to school and didn't have to work for a living meant I had no stress or cause for depression.

Similarly, they believed that children couldn't suffer from severe pain because children are young and healthy so a child in pain must be attention-seeking and should be ignored. The only time I was believed was when the pain was in the same place that appendicitis occurred, and they believed in that.

I think there is a faint possibility that my parents were time-travelling refugees from early Victorian times.

 

My youngest daughter, who has a diagnosis of EDS and has since she was 17 (she’s now 25) has been told on more than one occasion and by a succession of medical professionals that she can’t have the morphine she needs to treat the breakthrough pain (that occurs maybe two or three times a month and leaves her in tears of agony) because, and I quote, “you’re too young”.

Their logic, if you can call it that, for this approach is apparently that if they give her pain medication to treat it now, then, with the acclimatisation that occurs with opiates, their concern is that there might not be anything left to treat her when she’s older. My argument that she’s in bloody agony NOW and needs treatment NOW and we’d worry about the future when it gets here has so far been brushed off…

 

This is a silly question, isn´t it?

(luckily Hasselroth comes with punishment right away)

 

This actually reminds me of the fact that, at one time, babies were operated on without anaesthetic because doctors believed that babies couldn't feel pain.

https://www.newsweek.com/when-docto...medics-thought-they-couldnt-feel-pain-1625350

The article was posted on the 2nd of September this year (I'm assuming American date format).

Does this fact about babies have any bearing on the weird idea that children can't feel much pain because children, by default apparently, are assumed by adults to never be unhealthy?

I remember reading once that even open heart surgery was done on babies without anaesthetic. How they didn't die of shock I don't know. I also read that one surgeon committed suicide when it became clear how much pain he had inflicted on babies.

 

watched a circumcision ("they don't feel pain") while a nursing student. The pediatrician looked like he hadn't slept all night and he had a little knife. Hurt like bloody hell as far as I could tell.

So when it came time to make that decision about my baby boys...I left the decision up to them... to defer the procedure until adulthood, if they so desired.

If I have violated any rule here, or there, I apologize in advance.

 

It's so weird to me how common it is in certain parts of the world. Circumcision that is. I know a number of Turkish guys that probably had it done as a baby/child, but other than that none that I know off.

 

I fail to understand that there is, or has ever been, such a question.

If something is alive, and has a nervous system, then one of the purposes of that nervous system is to transmit pain.

Pain, by and large, is pain, regardless of if you're 2 months old, or 90, a human, or a chicken.

Which isn't to say that there aren't many types of pain - but due to an almost total lack of vocabulary they are all 'pain'.

My reasoning, as am I, is simple.

The reason for being able to experience pain is ancient.

For as long as things have lived they have needed a way of noticing if they were being damaged. It is not a new thing, all living things need to be able to experience pain, to survive.

It is not something that only mature individuals need to be able to experience, as it's perfectly possible, even more likely for juveniles, or newborns, to have to be able to notice, and comment in such a way as to attract notice, when something is eating them - a not uncommon event for many species.

So the idea that pain is age dependant, or even species dependant, is bizarre, at least to me.

 

Me too. It's hard to understand this is a concept anyone ever believed.

If anything, the ability to feel pain seems even more useful for infants that can't use reason and experience to predict if something will damage them or not.

Did they think children spontaneously gained the ability to feel pain the moment they became old enough to communicate it?

 

I think one sadistic facet of medical ideology (not just BPS, in this case) is that damage to the body can't hurt after it has healed up, even if that damage has caused permanent scarring and adhesions, resulting in tissues, muscles, nerves, blood vessels and organs which have been stretched, squashed, crushed, thickened, immobilised, distorted, pulled in directions it was never meant to go. This is particularly true if the damage is all internal and can't be seen.

 

When I had that major knee surgery at the age of 20, I told the nurse about the pain I felt afterwards (literally just days afterwards). Her reply: you don't know what real pain is.

So at least her logic seemed to be that it cannot hurt too much if you aren't old enough to have experienced enough pain. It's just your skewed perception.

 

When I was 6 (I think) I needed an operation.

All went as expected until the first cut.

I am seemingly one of those people who the anaesthetic used, at least at that time, do not work, I was paralysed but could feel everything.

After the surgery I attempted to communicate this, and the ongoing pain, to various people, and was ignored, and then finally told by/yelled at by, an unsympathetic ward sister to shut up, I was disturbing others who didn't want to know, and that this included her.

One of things of interest to me in my recently acquired medical notes was how this had been recorded.

Unsurprisingly it wasn't - there is one line stating that I had the surgery, and nothing else.

It's not the only case were anesthetics have failed for me, one more surgery, and multiple times in dentistry (although generals didn't work for surgery, the dental version did work on me when I was a child, but most of the needle versions used, for everything but root canals, don't work - but at least I can communicate that and tell them to hurry up)

For the surgeries, I was a child, and had no choice, as an adult I will not consent to any form of surgery, even if not doing so has fatal consequences.

 

That is horrific, @Wonko

That is one of my worst fears - being awake and paralysed while having surgery.

 

It's 'fun' - but the whole being ignored, and seemingly no note made of it, is worse, as it means that it will, as it did, happen again.

Not the only case I am aware of (e.g. it's happened to people I knew as well) of patent 'concerns' and knowledge of their own medical history, being completely ignored, leading to a 'poor' outcome, if this is in conflict with 'procedure' or the HCPs beliefs on how things should work. Even if such things are in the notes then the notes are ignored if they vary from the HCPs way of doing things.

 

I was thinking of that the other day, how there is an obvious evolutionary advantage to babies feeling pain way more intensely than older children and adults. Because their body is so fragile, especially until the skull sets in but even long after, it's obvious that in the whole animal world, not just humans, there is a huge benefit to intensely feeling it so that adults will be extra careful.

But we are still at the stage where, somehow, many in medicine actually believe that infectious diseases don't affect children, or at least pretend to for the sake of this one infectious disease in particular. Even though it's well-known that telling the truth is the best strategy, it's still the default in medicine to lie so as to "avoid worrying too much". All this does is destroy trust, but they won't ever know that because no one listens to sick people.

In large part I think it's just old baggage, since until recently children weren't considered people until they reached puberty. Since babies aren't full people, how could they possibly feel pain like people do? Just dumb old baggage and myths.

 

Have those who said babies don't feel pain never had kids?

I've heard of this totally dumb theory. Good grief! I shudder to think of all the damage those medical personnel caused, and not just to babies.

ETA: where is their common sense?!