Autoimmune diseases and mental health

[random901]

Attempting to attach article which strikes a chord with me atm.

msn.com/en-gb/health/medica...

[PMRpro Ambassador]

I'm getting a notice that this page no longer exists - can you tell us the title of the study? Is it this one

Sloan, M et al. Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study. Rheumatology; 26 Jul 2023; DOI: 10.1093/rhe/kead369

cam.ac.uk/research/news/exp...

If so, I'm sure you will be interested to know that Melanie Sloan and her co-workers gathered responses from members of both the Lupus forum on HU and also from us in PMRGCAuk

[DorsetLady PMRGCAuk volunteer]

Doesn't work - do you mean this -

scitechdaily.com/scientists...

[random901 in reply to DorsetLady]

Yes that's the one!

[DorsetLady PMRGCAuk volunteer in reply to random901]

Good,.. think anything on msn quickly disappears as new stories come along…

[OldPenny]

"Over half of patients with autoimmune conditions suffer from mental health issues like depression or anxiety, yet many are not routinely asked about these symptoms in clinical settings, reveals a study by the University of Cambridge and King’s College London. The research indicates that the prevalence and range of these mental health symptoms are more extensive than previously known, and there’s a significant disparity between patient experiences and clinician perceptions."It's not clear to me whether the authors mean that those predisposed to anxiety etc. are more likely to have these complaints in later life or the 'mental health' responses are a result of the autoimmune/rhrumatic conditions themselves. 🤔 OP

[random901 in reply to OldPenny]

I read it as a failure to adopt a holistic approach. Certain diseases can lead to anxiety and depression. Personally, it was I who informed the medical staff that I was experiencing these. It wasn't brought up by them. A predisposition to mental health problems could be exacerbated by the added stress. Steroids do not help!

[micpenn222 in reply to random901]

Or maybe just steroids alone! I wonder how many of these patients studied were on steroids and why they didn't make the connection, as it's well-known that steroids can have a detrimental effect on mental health in some patients.

[AtopicGuy]

This article in The Independent has exactly the same title as the broken link from MSN:

independent.co.uk/news/scie...

My mental health was worst when I was struggling with symptoms, and trying to keep life going, while doctors told me they could find nothing wrong. I tried OTC St. John's Wort for 2 years, and then half a dozen different antidepressants, on and off, for 20 years. Can't say any of them did much, apart from be a prop and cause side effects. I tried CBT, too. Eventually, as my physical symptoms continued to worsen, I became convinced that my disease is real, so my mental health improved and I stopped the antidepressants!

A few years later, I finally got to try steroids, to see whether they'd help my 'non-existent' disease. They did. Drastically. Rapidly.

Sometimes, depression is a perfectly rational response to an awful situation.

[random901 in reply to AtopicGuy]

Hi AtopicGuy. Prior to my GCAPMR diagnosis last October, I developed fibromyalgia in 2010. I was on prozac for 10 years before weaning myself off last summer. Must admit, feel more "me" now despite the pred side effects.

[AtopicGuy in reply to random901]

Did your fibromyalgia respond to Prozac? None of the antidepressants I tried gave relief - including duloxetine - but that doesn't stop them suggesting fibromyalgia as a diagnosis (despite the fact fibromyalgia doesn't respond to steroids but I do).

[random901 in reply to AtopicGuy]

Initially, it helped with the anxiety I was experiencing, and kind of numbed me. But it did precious little to relieve pain and made me more fatigued. That's why I ditched it - it had become redundant.

[Sharitone]

Why do they list fatigue as a mental health symptom? Surely it can be either mental or physical?

[pata63 in reply to Sharitone]

Yes, it is both. The study design can't determine the difference. As a (long retired) PhD specialist in the area of experimental design and statistical analysis, the first thing I look for is to see what is an observational study and what is a more sophisticated research design which is capable of looking at causal relationships.

The same goes for this comment "It's not clear to me whether the authors mean that those predisposed to anxiety etc. are more likely to have these complaints in later life or the 'mental health' responses are a result of the autoimmune/rhrumatic conditions themselves. 🤔 OP"

As an observatinal study there is no time component which can inform us about causation. We only know about associations. I think sometimes the authors of academic papers don't make things clear because the research design is not able to make them clear. That can come across as vague. I prefer that to academic papers or general media discussions where a causal story is told but the research design isn't adequate to make those sorts of claims.

These sorts of publications and reports usually begin with "we found a greater rate of mental health issues than expected" and end with "more research is needed". It isn't just researchers touting for funding. It is how the research game works. Like counting the number of potholes in the road to put pressure on the local council to fix the road. 😎

[Sharitone]

Thank you. that's interesting.

Here, of course the danger is that, in listing fatigue as a mental health problem, uninformed people are likely to dismiss fatigue as merely that and can give people with autoimmune disease a hard time. We are particularly bad at doing that to ourselves, with the result that we keep crocking ourselves up unnecessarily. I think that airy assertion in unconsidered language is very irresponsible.

[AtopicGuy in reply to Sharitone]

There is another factor at work. The brain has evolved to make us feel tired, fatigued, faint, sore or in pain because it fears we will do ourselves severe injury if we carry on. Fainting is a classic example, because it makes us lie on the floor to restore blood pressure to the brain. Sufferers of leprosy only lose appendages because they lose the sensation of pain first and don't notice cuts, crushes, burns and infections (the bacterium damages the sensory nerves). Then there are the cases when people step on nails, scream in pain, only to find out the spike passed safely between their toes. Both physical and mental disorders can cause us to prematurely 'run out of steam'; but the sense of what we call 'fatigue' may all be in the brain.

[Sharitone in reply to AtopicGuy]

Mmm. But pain is also a phenomenon that is experienced in the brain, but that doesn't mean that's where the pain is coming from. Similarly, you may feel that your muscles are fatigued, but that does not mean that they are not.

[AtopicGuy in reply to Sharitone]

When people (their children, etc.) are in severe danger they often do not notice an injury (which would normally cause severe pain, but not an immediate loss of function) until the crisis is over. This shows that the brain decides whether and when to turn pain signals into pain sensations. We are the products of evolution, not machines.

[Sharitone in reply to AtopicGuy]

Well yes. But with fatigue, although I'm sure I could actually run from a dangerous fire, I'm also sure that that spurt of energy would give out on me before it would on a person with normal energy levels. The brain might be able to override fatigue, but there are still limits, determined by the level of, eg, autoimmune disease present.

[AtopicGuy in reply to Sharitone]

Indeed: there are physical limits, but they differ from the perceived ones. Somewhere I read about a diagnostic criterion for some disease. It said patients typically couldn't get out of a chair, even if there was a fire. I'd call that weakness approaching paralysis.

[Grammy80]

I found that article extremely interesting, and it resonated with me. I appreciate the article from a simple, uncomplicated, non-analytical patient perspective; I have had GCA, prednisone, and Actemra for nearly five years.

It would seem understandable that anyone who has any disease where the outcome is uncertain and is on medication they must have but is front-loaded with an abundance of side effects to be endured.....has a very good reason to be anxious, depressed, and sometimes have a very difficult time mentally coping with having their lives turned into something unrecognizable. With support, we make every effort to try to think positively and possibly after months of making some gains, find we are taking two steps backward. That's tough.

To me, it is understandable that all those circumstances can overwhelm even the strongest people. That is why this forum is invaluable for the knowledge and support it offers. You realize that you aren't really losing your mind, but it sure can feel that way. Some years ago, I used to see a therapist and have not hesitated to reach out to her.

Thanks for sharing this; our mental and physical health are equally important. Hang with us as we all hang in there.💞💞