pmg, tapering and feeling low

[Guilluame]

hi there, I have had pmg since last September, I think bright on by the death of my partner of over 30 years, and I have been slowly tapering down to now on 2mg from 15mg, with a slight hiccup of chest infection six weeks ago when I was on 30mg for just a week. I have been ok mentally since then, but am now having a sense of overwhelming depression or feeling very low. I cannot make out whether this is anything to do with the adrenal function or grief. I have tried to keep myself active, gardening etc, and trying to get an appointment with the doctor is nigh on impossible, looks like from this forum we are all hlpmg each other. Any thoughts on this would hel,me.,

[PMRpro Ambassador]

I'm so sorry to hear of the loss of your partner - it is a big change and hard to adjust I know, It is nearly 2 years since my husband died - after over 50 years together, We didn't quite make our golden wedding though.

At this stage your adrenal function is needing to restablish itself after being suppressed by the higher doses. As you have only been on pred quite a short time it should come back without too much trouble but nevertheless it takes time. Poor adrenal function contributes to low mood.

In some areas in the UK there are self-referral counselling services - have a look, ask the GP practice for links, even the receptionists will know those, It was a great help to me in sorting out the mental mess.

[Guilluame in reply to PMRpro]

Thank you so much for your helpful reply, this low mood has come on all of a sudden and I have been saying to myself pull yourself together, thinking of all the terrible things happening around the world, but just can’t lift myself up. Will look up the self referral you mentioned. Thank you.

[PMRpro Ambassador in reply to Guilluame]

It was several months after his death that it hit me like a ton of bricks but in a physical way with a massive PMR flare. But it suprised me how some aspects have become harder over time rather than easier.

[DorsetLady PMRGCAuk volunteer in reply to Guilluame]

this low mood has come on all of a sudden and I have been saying to myself pull yourself together,

Quite understandable and it’s not a case of pulling yourself together - we can only do so much for ourselves, sometimes we need help….

Like PMRpro, I lost my husband of 46 years - during my GCA - 10 years ago last weekend…. and even after all that time, I do still get down days….and always will.

Please do ask for help….

[Guilluame in reply to DorsetLady]

Thank you for your reply, I don’t know where to go for help other than the gap, and it’s impossible to get an appointment, our surgery is in special measures having been assessed as inadequate. Any ideas , maybe a therapist might help.

[DorsetLady PMRGCAuk volunteer in reply to Guilluame]

You can self refer for CBT - not sure now sure how easy it is though [normally would suggest via GP, but that seems a lost cause for you] - perhaps have a look at this link -

england.nhs.uk/mental-healt...

and although this was posted in FAQs about post covid there might be some useful tips -

healthunlocked.com/pmrgcauk...

[Guilluame in reply to DorsetLady]

Thank you, will look this up.

[Karenjaninaz in reply to Guilluame]

In the US we have bereavement group support. Do they have that in the UK?

[SnazzyD in reply to Guilluame]

Please be kind to yourself. Just because your house hasn’t gone up in smoke like in Greece, doesn’t mean to say the loss of your partner should be easier. Grief doesn’t make an appointment to grip you, it arrives unannounced and won’t leave, like a very bad guest. However, it’s a guest that needs to be allowed in. Having someone to talk to is good and can give you permission to talk about the person when the world has moved on. It seems to be an unspoken assumption that after a few months it should be easier as if the healing process follows a nice smooth path when it fact it comes and goes with no rhyme or reason.

To add to this, likely low adrenal function exposed by a low dose of Pred, can make one feel very down, even with nothing to be down about. This does improve when the adrenal function improves. So again, be kind to yourself and try to get any help with anything that you can.

[Guilluame in reply to SnazzyD]

A lovely reply and my days are just like you have said in your reply. This morning I did 2 hours gardening in what was my late partners pride and joy his veg plot, and although there is still a lot to do, it has made me feel like I have achieved something , that’s all I can manage for today, so am resting now with a coffee. So far, so good. Thank you so much, this forum does help.

[PMRpro Ambassador in reply to Guilluame]

And before you dive in tomorrow morning - be sure you STILL feel OK, because it can take longer than usual to catch up with you! Well done!

[Charlie1boy in reply to SnazzyD]

Loved your reply, especially your words about grief. My wife asked me to copy and paste this, as she frequently visits people who are grieving.

Thank you.

Paddy

[piglette]

If you visit our new PMR GCA Gardening group it may cheer you up a bit? facebook.com/groups/6288051...

[sferios in reply to piglette]

I just requested to join the facebook group. But I have a question . . . Is there a connection between PMR and gardening? lol. I love gardening and have been an avid gardener since my mid-20s. So many people here seem to be gardeners too. Coincidence? 😂

[PMRpro Ambassador in reply to sferios]

Coincidence - no gardening for me!

[DorsetLady PMRGCAuk volunteer in reply to sferios]

Definitely coincidence! Although I am gardener - and had GCA, 😳but I’ve known a lot of gardeners in the family that haven’t….

[piglette in reply to sferios]

It was set up a month or so ago from this discussion group so most of the members are also part of HealthUnlocked.

[sferios in reply to piglette]

I just posted a few of my garden images. I love it!

(And I love my growing PMR online community.) ❤️

[piglette in reply to sferios]

I will go and look

[SheffieldJane]

I don’t think it is an either or ie Adrenal function or the grief over the loss of your life partner, I think it is a combination of both. I think your idea of having a therapist to talk to is a very wise one. You are going through a massive change in the life you knew with many losses to contend with. Inexplicable low moods sweep over you with your Adrenal function alone, you have a massive narrative to add to this. You need to talk it through with a kind and qualified listener. You need to search carefully on-line for someone you like the sound of. It is important to start building a foundation for your future life.

You must persist with your attempts to contact your doctor. You may need a simple baseline Cortisol test to ensure that your Adrenals can work ( just a blood test).

I am sorry for your loss, it is one of life’s biggest challenges. Sending love and hugs. 🌹

[Guilluame in reply to SheffieldJane]

thank you for your reply, I did try to speak to one of the doctors in my practice, but when I last went to see him for a chest infection some six weeks ago , I did ask for a blood test and was told as you had one in December, there is no reason to repeat it so soon. They are on special measures as being inadequate. ,!

[SheffieldJane in reply to Guilluame]

It sounds more like desperate measures. The Cortisol test is quite different from our routine blood tests. It is a specific test that can lead to action. An Adrenal Crisis is a life threatening condition. Try 111. I did yesterday, they picked up immediately and gave me the most comprehensive interrogation - she asked far more than the GP or the receptionist. She writes this up and sends it to the GP, her advice was to see them within two hours. They most hold back some appointments because I got one - having been told there were none. This is all audited and I imagine that would be awkward if you are being scrutinised. Who knew 111 was the open sesame to primary healthcare? Good luck!

PS have a read of FAQs about the Adrenaline function, then you will know more than they do. X

[Zebedee44]

You could try to contact CRUSE bereavement counselling to talk about your loss, not just of your partner but also of yourself to illness. The counsellors are trained to support people of all faiths and denominations through any loss. The NHS also has a bereavement counselling service which supported me for a year after my father died but I imagine that is not so easy to access these days.

Your surgery might have a leaflet from the county mental health team about counselling support. I was surprised to find that even telephone counselling was very effective during the pandemic. Counsellors are not psychiatrists, they are just trained to listen and guide you , I really recommend the process. Best wishes, Chrissie

[Viveka]

Like everyone has said, and as you know, it's both, but adrenals coming to life have this particular effect of causing low mood, particularly in the morning; they also lead to gloomy inner narrative and increased emotionality. And our get up and go, gets up and goes.

So it's reinforcing natural feelings of grief. (It's happening to me at the moment about my mum who died this time last year). The good news is that this aspect of it will resolve and we can recognise it for what it is and try and deal with it, like you are doing.

I think the idea of specialist bereavement counselling with CRUSE counselling is excellent. It can really free things up and make a difference. X

[5lupins]

This is such a difficult time for you. I found ringing CRUSE when I felt at my lowest has worked best for me and they just let you talk. You don’t have to give your name if you don’t wish to. When I did the weekly telephone counselling I sometimes ended up distressed on what had been a really good day. The young women was also not as good for me. This was just luck of the draw I suppose.

Although it has been nearly three years now my I am not well which makes it harder.

I heard this the other day. “Grief is Love with nowhere to go.” I am not often one for quotes but this made me cry as it felt so true.

Thinking of you . J x

[sferios]

I have had PMR since January, and I have only just begun to understand the connection with stress. My mother passed away a few months ago and I think for sure grief causes stress.

My condolences and best wishes for you. I don't have much advice except to listen closely to the veteran women here. They have helped me so much already.

[DorsetLady PMRGCAuk volunteer in reply to sferios]

veteran women?

I think that’s a compliment, but not 100% certain 🤔

[sferios in reply to DorsetLady]

Absolutely! I meant PMR veterans.

[DorsetLady PMRGCAuk volunteer in reply to sferios]

Actually I’m not -GCA only… but I knew what you meant 🤣