Mental health of sufferers from systematic auto-immune rheumatic diseases

[Dochaz]

Just got this link today because I responded to a questionnaire. GCA /PMR is not specifically mentioned, but is part of the picture

academic.oup.com/rheumatolo...

[piglette]

There is a thread on this at healthunlocked.com/pmrgcauk...

[Dochaz in reply to piglette]

Yes, I just realised that others have already shared this! Sorry!

[Bluey-1]

Thought this was very interesting Dochas. Looking back to my experience of depression last autumn six months or so after diagnosis of GCA it fits my experience. I eventually sought help and my GP has been really supportive.

[Dochaz in reply to Bluey-1]

I've been feeling down recently because I feel that these first years of retirement should have been full of travel, new interests, freedom to do what I want when I want, and instead I struggle some days to find the motivation, not to mention the energy, to get through the day. I know there's light at the end of the tunnel, but can't see it yet!

[BethCH in reply to Dochaz]

Hi, I got this link too and found it interesting, especially some of the possible lesser known issues like sensitivity to noise and light. I put this down to pred. It will also be useful to show to my husband, as I get irritated/anxious when he has music on loud.

I took early retirement 4 years ago for same reasons as you, then covid hit, then GCA hit 18 months ago. My world got so much smaller. Haven’t had a holiday in so long. Couldn’t help my son move to his new student place recently and like you, I get low moods. However, there are small oasis of acceptance and calm, just little ‘wins’ where I feel ok and we can go for walks, coffee and cake, go to the beach (luckily we live near the sea) and best of all, when we see our boys and my husbands grown up kids and grand children. My aim is to have a small treat each day, even just getting a couple of plants for the garden. But it is tough and that flippin tunnel seems soooo long. I hope you are ok and know that you are not alone.

[Bluey-1 in reply to BethCH]

A small treat every day - yes to that!

[Gossiplady in reply to BethCH]

Very sensible! A small treat each day - wonderful!

[Bluey-1]

It’s hard to adjust to having freedom curtailed and looking for those chinks of light on those wipe out days. I notice others have commented on another thread about this paper. We are not alone!

[Gimme]

"They don't commonly affect the brain" . Really? Glad he or she is not responsible for my care. Though I have to say, that none of my healthcare team have shown much interest in my fatigue, insomnia or brain fog. Those were primarily responsible for me having to stop work. I was simply unable to do my job any longer. My care has been purely focussed on pain management and since pred does an excellent job at that, I suppose that I am considered fixed, for the time being at least.

It underlines my point about not finding the things that you don't look for, hence (different topic) patients who are "too young" often being ruled out. Though from the comments in the paper, it sounds like it has made some physicians think outside the box. If it has stimulated some thought and discussion, that has to be a good thing.

Re one of the specific comments in the paper, I have to say that I am reluctant to discuss anxiety and depression with doctors nowadays, as past experience has been that I was handed out the happy pills and that was the extent of the support available, so the only time that the conversation has been productive is when I was on the verge of a breakdown and needed to be signed off work. Now that I don't work, I would be unlikely to raise the subject, unless asked directly. Now, if someone could help me cope with the debilitating fatigue, I would rush up and kiss them.