Malaise-the perfect word to describe PMR for me

[bunnymom]

I found this definition and it says it all-a general feeling of discomfort, illness or uneasiness, whose exact cause is difficult to identify. (this is mentioned in conjuction with rhuemetoid arthritis) In keeping a medical calendar daily I see that I am feeling crummy almost everyday and have been for months. It is really starting to wear on me as well as husband. I go and see my GP this week and was looking for a descriptor for him. Am I not taking enough Pred? Is it the Pred making me feel crummy? Can my pain be controlled ok but I just put up with feeling lousy all the time. or will more Pred take anyway the feeling lousy? My quality of life has really gone downhill. I continue to cut back more at work and in my household. I wonder if it is depression, my husband says anxiety. Can anyone tell me what standard of life is typical while this disease runs its course? Always appreciate all of you who stand with me during this time. xox

[polkadotcom]

I feel that anyone should be on enough steroids to give them some quality of life, and in fact I have always followed that on a personal basis.

It isn't doing anything any good if you are not taking enough Pred. You have little control of the inflammation and also have to deal with any side-effects of the steroids. To me that is a lose-lose situation.

Initially a 70% improvement in pain levels are looked for. Some lucky ones have 100% relief, but mostly patients need to deal with some pain on a daily basis. I have learned the lesson of patience (very difficult) and the need for pacing (also difficult) but I learned the art of distraction quite early on - perhaps the need to concentrate at work helped and it has been my mainstay along the road.

I read, play silly computer games, do word puzzles, crosswords, whatever, if it takes my mind off my discomfort for half-an-hour, that is a gain. I also like to knit and crochet, but my hands find it difficult now so I stick to the basics of scarves and blankets. Every little helps, as someone said.

I do agree, bunnymom, that malaise is a good word descriptor. I must try it on my Rheumy tomorrow.

In the end I think acceptance of a new 'normal' for life is necessary. Once I stopped whirling round all the things I should be doing and concentrated on those that I could do, life became much easier.

[PMRpro Ambassador]

My household has been pretty much on hold since I developed PMR (yes, I know, I'm a slut...). Like polkadotcom I don't compromise: I take the amount of pred I need to feel as good as I can. And I'll say yes to everything else pdc said.

I do have a pretty decent lifestyle. But I was a freelance translator - staggered from bed to computer. Didn't even have to get dressed if I couldn't. Though, to be fair to me, I did go to an aquafit class every day Mon-Fri during the 5 years I dealt with PMR without pred. It did help mobility.

But like most of us who are old-ish - I bow before anyone who continues to work at anything more energetic than I did in my 50s.

It isn't depression, it isn't anxiety - it is an autoimmune disorder and both of those are part of autoimmune disease. Ask your husband to imagine what it is like to feel you are just recovering from flu, real flu, not a bad cold. That's what it is like living with autoimmune illness. Taking enough pred to get to the best you can feel is only fair. And if there are longterm consequences - I'll take jam today. I will be a long time dead and without pred I might just as well be dead now.

[Zacsmimi]

You and I seem very similar in a lot of ways. My pain is under control. My extreme fatigue and malaise are my primary complaints most of the time. More prednisone makes me more irritable, jumpy, unable to sleep, and I eat everything not nailed down. In my case, it IS also depression and anxiety. My life is COMPLETELY different. What helps me is focusing on how much worse it could be... it isn't terminal... quit putting things before me I can't do. I had to quit work. Very very hard on me. I try to do what I can, one day at a time. Counseling is helping, I think. ❤️

[Mary63]

Bonnymom I so identify with what you say. I also feel CRUMMY...nearly all of the time. Diagnosed Jan 2016. On 20 mg at that stage...managed a trip of a lifetime to Australia and felt well. Maybe relief at being pain free but very little fatigue on 20 mg pred despite jet lag. Reduced to15mg 6 weeks in and (I think) still felt fine. Reductions never resulted in return of any pain so continued slow reduction until 9.5 in December, and on reflection realised that fatigue, insomnia and night sweats had increased massively ...still no pain. Increased to 12.5...no better. Increased to 13...no better. Increased to 14mg ...a lot of improvement. Then went to South Africa on holiday. Felt OK ish there (only a 2 hour time change) . Been back home now for 4 days and feel grim.

My assessment of how this disease has affected my life is as follows. Used to work full time. Now working 30%. Used to play loads of sport. Now worried about how much, how often, pacing etc. Used to socialise and entertain. Now have to cancel arrangements. Had to cut out voluntary stuff.

I am fed up! Maybe I should retire? I don't want to.

I so understand your question Bonnymom. 'Can my pain be controlled OK. But I put up with feeling lousy all the time, or will more pred take away the feeling lousy?'

Zacsmimi your response is helpful as are those from PMR pro and polkadotcom. (As they always are. Thank you so much for your info and opinions)

Maybe I should consider some counselling or therapy to enable me to cope with this change of lifestyle. Or maybe I should up the pred again? But I feel I will be in trouble with the docs if I do that.

Any answers anyone?

[bunnymom in reply to Mary63]

I am going to retire next year at the end of May. I will be 62. My life has become work rest repeat

I love what I do but there is more to life than what I have now . Maybe I will get well sooner

[Hidden in reply to bunnymom]

I have Stills JRA. Covid brought redundancy and at 59 I decided ok I will now retire. I’m loving it, baking and reading and can’t imagine returning to a high pressured media sales job. My health is unchanged except for a reduction in migraine and tension headaches. Hubby was also made redundant, he’s 60 and we are now planning so much that we couldn’t do while working. 😊

[bunnymom]

I am going to increase pred a bit and see if it helps.

[Mary63]

Please let me know how things go for you..

[bunnymom in reply to Mary63]

Will do.

[Carrot1]

I also identify completely with all the above comments. Having come up against problems reducing from 10 to 9, my rheumatologist has suggested I up my dose from 10 to 12.5 to try and improve the 'malaise', then subsequently to 15 then to 17.5 if no improvement. I thought I detected a marginal improvement when I went up to 15 but nothing at 17.5. I was hoping the fatigue could be helped by more Pred but from what I've just read that's impossible so it sounds as if quality of life has gone out of the window. Quite a depressing thought. I find myself wondering if I really have this disease - surely the Pred should work better than this? Could it be something else? If so, how on earth do they find out what? I had no raised inflammation markers to prove it one way or the other. I feel like asking to be taken off Pred to find out what my body will do but don't think I dare really. I'm sure the next suggestion will be for me to go on Methotrexate but I really don't want to. From what I have read, it is not a proven successful treatment and there are so many side effects. And to add to all this discomfort and misery, people keep saying how well I look!! As PMRPro would say "grrrr".

[bunnymom in reply to Carrot1]

I feel the same way about the steroid sparers. My rhemetologist wanted me at 10 by months end and I am going from 12 back to 12.5 or 13 if need be.

[bunnymom]

I am stunned that a Dr actually told you to increase your preds. Sounds like he really heard what you said.

[TooSore]

I ran across the word malaise I think in conjunction with prednisone withdrawal but possibly prednisone itself or PMR. I remember thinking that it described what I was feeling perfectly and I hadn't seen it outside of a romance novel! At the time I had a doctor who was not listening and I was tapering too fast.

I started going to cranial sacral therapy and found I felt better, more like myself again. It is deeply relaxing. If you don't have anyone near you who's trained, maybe try meditation. I also soon found a new doctor who changed my dose, the weather improved and I didn't feel that "I'm ill and I can't quite tell you what's wrong, but it's more than the pain/stiffness/fatigue" feeling.

Hope things improve for you, soon

[bunnymom in reply to TooSore]

I love the romance novel comment. Too true?

[bunnymom in reply to bunnymom]

Too true!

[PiersC]

I was trying too hard to get off the pred - I hate the side effects (loved the comments about eating everything not nailed down!) I had a shocker of a Christmas with two really good (bad) flares. The second one - on my scale of 0-10, was back at 8 which is close to unable to move and I had to up the dosage. This time I recognised that I had to calm the inflammation - so I stayed on a higher dose under the pain was under control, then stayed on that for another 10 days so I really knew it was under control. Much better now - back to the dead slow reduction and my Rheumy (visited today) was happy with the plan. He has said a maximum of 1mg per month reduction - but follow the pain - don't push it - and I won't be either. There is no need to live with that pain and it does not make you stronger, it may even be a retrograde step. So, more pred it is, to reduce to zero - when ready!!

BTW - I have been getting into the meditation, there is an excellent app on the web called Headspace - run by a Brit called Andy Puddicombe that is very easy to follow and really helps me with the pred-head thing. Just an after thought.

[bunnymom in reply to PiersC]

Glad to hear you are doing well!

[Rugger]

'General Malaise' - it sounds like we all know him well!

[bunnymom in reply to Rugger]

I like that. Made me laugh. Hope that the General soon retires...