People on here mostly post about physical symptoms but what about mental/emotional? Pain consumes a lot of energy. When you have a very limited window of opportunity to get things done, because issues related to PMR have taken your energy and mental stamina, what can you do? It seems like I have been suffering from inertia and brain fog since around the time I was diagnosed, almost 6 years ago. If I were to measure my productivity levels from before PMR there would be a sharp contrast. This is a form of grief. I have many unfinished projects, along with decision fatigue and guilt.
In addition to PMR I also have a rotator cuff tear (in both shoulders but only pain and discomfort in my left currently). A year ago the rotator cuff tear in my right shoulder was so bad that I couldn’t do my hair. I also have what appears to be osteoarthritis in my right knee (ultrasound and MRI needed to define it more clearly).
Because of both conditions, brain fog and inertia have increased even more.
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Curious1411
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People do write about it but it isn't a massive problem for most once they are reasonably well managed with pred. We do often recommended to people they should consider counselling because of the bereavement aspect relating to loss of their previous normal lifestyle
Yes, and on that note. I think there are categories for where people are at in terms of coping with PMR.
1) Those who haven’t yet been diagnosed or were misdiagnosed with another condition so their symptoms are not managed and are self-managing with little support.
2) Those who are newly diagnosed with PMR. Their symptoms are under control because they were give prednisone to help them. Still, they may have fears because of the side effects of prednisone. They may also have bouts of fatigue (I know I did- prednisone didn’t do anything for my energy). They are relieved though because they are able to get a good night sleep, do more physically without being in pain.
3) Those who have been on prednisone for 1 to 4 years. Symptoms managed well because of prednisone but new aches and pains because of tapering.
4) Long term users of prednisone-5 years and beyond. Prednisone has helped manage their symptoms but they have encountered challenges because they developed secondary conditions to PMR such as excessive weight gain, diabetes, osteoporosis or osteoarthritis, RA and other conditions.
5) Those in remission. They have gotten off of prednisone but because their adrenals need to rebuild they are struggling with low energy which could take up to a year. Those in remission could have additional health challenges or may not.
I hear what you’re saying! I do suffer from sadness about my overall health and abilities (with occasional short bursts of grief), and have too many unfinished projects to count. Like you I have shoulder problems which limit me a lot - I’ve just been referred to an orthopaedic surgeon for a possible shoulder replacement.
I do from time to time try to pull myself together. I joined a choir recently, which I enjoy, although I can’t stand for long enough to sing. Life is a roller coaster really. I try to enjoy every opportunity I have, and generally succeed. But I’d say the mental and emotional aspects of PMRGCA are massive.
Life definitely is a rollercoaster with pmr/pred and the mental aspects are part of the illness.I was offered anti depressants twice during my 5 years of pmr.I was referred to 'Time to Talk' which was like a group therapy.I would say it was more for people who were stressed at work.I didn't really 'talk' there.I didn't know who I was with pmr or if it was the pred giving me a pred head.I was working full time,long hours in a stressful job for 2years out of the 5,so that didn't help my mind at all.
Honestly I don’t know how people work with PMR, although of course it depends on the type of work and on other stresses in life, as well as the disease itself. In my case, I do wonder whether some form of appropriate employment would actually help me, in that (as you mention), it might help me to remember who I am…..🤷♀️
I think it’s unfortunate for many of us that PMR often coincides with retirement, and recently of course the onset of the disease was during the pandemic. The upset and distress can be due to personal and social factors like these, with PMR and GCA, as well as other things like arthritis, making it ever harder to adapt.
But hey, we keep going, don’t we? I do my best to remember what makes me and try to be true to myself. Not always an easy task….
I have slowed down considerably in terms of work and work very part time. The fatigue, inertia and overwhelm is so bad that I have to really push myself even to get basic self-care done. When I engage in something productive it also seems to take everything out of me.
Going to an appointment and the rest of the day usually ends up being toast.
”I didn’t know who I was” totally resonates with me. I have changed and often don’t recognise myself. It’s a bereavement - I’ve lost “me” and the hopes and dreams I had for me. But dropping down to lower doses I now have periods of the old me. I am able to be far more positive.
I resonate with the ‘lower doses and feeling more positive’. However am back up to 14 mg and look forward to being at a lower dose again and GSOH and upbeat mood again… although the last 16 months has been challenging with eye diagnosis and treatment.
Spring,, Sunshine, Bird Song, and Summer Time are very uplifting to one too. 🌺🌷🕶️☀️🪺
I joined a mental health support group in my 3rd year of PMR but it didn’t help much. It gave me some structure for 1 day of the week and there was also “homework.” It was supposed to be a group for women suffering from various health conditions and also had anxiety and depression, but there was nobody in the group who had PMR/GCA. It was also mixed in terms of ages. Women in their 20’s and 30’s. A few were middle aged or older.
Very similar to how I feel Nextoneplease. I look back at 2021 a year after I was diagnosed with PMR and how I am now… and I feel very weary and careworn… people say I look well (externally!) but it’s quite different on the inside! xx
You truly are not alone in these feelings. As PMRPro says seek help if it’s all getting a bit much. Reading and audio books are a great solace to me. Almost 8 years and counting. My brain fog is ridiculous, I can barely hold a conversation- all my proper nouns go. As for inertia, just give yourself permission to be ill and to rest, these are significant, systemic diseases. Try to get out in nature now the better weather is here, it is uplifting. X
Such a comfort to read your response. I too can lose my words mid-conversation, feels like the brain cells are falling off. Mostly happens when conversation is dull and I am using energy to push it along. X
Hi Curious1411!I'm sorry you are struggling with pmr and it's getting you down. It's a horrible thing to manage and then all these other problems too. I think you have a lot to manage💐
It's been a big upset to me too. I cried quite a lot and grieved over my physical loss. I love being active. I'm also concerned about my ability to return to work doing a physical job. I don't know how I can do it.One of my upsets is not being able to run with my hubby. It was about enjoying it together.
But I'm trying hard to be positive and take each day as it comes.
My house and garden needs a lot of time spent on it. The weeds are thriving 😮
This forum has been a huge help and I hope it is to you too.
I’m a completely changed person since I was diagnosed in 2021 with PMR.
I’m currently (as I type) sitting at the hospital waiting to go in for my six monthly rheumatologist appointment. I can’t even begin to tell you the stress and anxiety I’ve experienced just at the thought of driving here. I arrived an hour early just to make sure!
I never used to be like this. I suffer dreadful debilitating anxiety and I get tearful over nothing and worry unnecessarily about stuff that may never happen. I can’t watch the news anymore. I don’t feel depressed (except when the pain is unbearable). I’m absolutely convinced it’s all down to the uncertainty of this condition and the steroids because I was nothing like this before it all started. I was confident, laid back and took everything in my stride. I don’t even recognise who I am anymore and I’ve no clue how to deal with it.
I’m going to speak to the rheumatologist when I’m called in.
Unfortunately my appointment was taken up with the knee and shoulder issues, being in more pain, not getting a good night sleep. She did physical tests, blood pressure etc. Shoulder issue is not frozen shoulder based on the tests. PMR was kind of a side note. She did say she was wondering why I am still on the prednisone, and haven’t been able to wean off yet (in my 6th year) . I have not tapered much since last appointment.
I have brought up energy issues in the past and she didn’t address them.
As for my knee, at the beginning of the appointment she said ultrasounds aren’t all that helpful for the knee and at the end of the appointment she asked me if I wanted to book an ultrasound.
Hugs to you. I believe we all go through a grieving period, for our former selves. I had never heard of PMR, GCA or the like, nor is it genetic. I used to walk about 5 km. daily. Can no longer do this (at least for now). This began in May 2021 with the first Pfizer vax and escalated from there (nutshell version). It is a roller coaster ride for sure!
I was diagnosed finally in Jan 2022 and have been on Prednisone ever since. I had never been truly "sick" in my life. I have worked for the most part, full time during the last 1.5 years, except during a few months before my diagnosis when I could do not much of anything at all. There were times of tears in the morning shower, because at that time I could not get into the tub. My life has left me many scars, but also made me extremely resilient. Mostly abusive marriages, one which nearly killed me.
Returned to work Feb. 2022 after being on Pred. for 1.5 months. I had a GCA scare in January of this year and was upped to 60 mg Pred. Now trying to taper off that dose. Had to lay off work again, because I could not concentrate. Right now I'm down to 32.5 mg. Pred. Rheumy wants me to taper 5 mg. bi-weekly. Finding this too quick. So last night only went down 2.5 mg.
We shall see how today goes. How today goes is up to my attitude toward it. Today is another chance at life. I have never layed in bed since the onset, even though the pain made it nearly impossible to even get out of bed. I have moon face out to my ears, my glasses leave ridges in my head and a donut neck which looks like it's supporting it, BUT I get up, have a bath, get dressed, put my eyebrows on because they are silver grey and you can't see them and any other war paint that makes me look somewhat like "me". I still feel like me, but then there's that mirror.
I live alone and I'm 73. I do what I can in the form of housework even if I have to sit to do it. I cook a meal every night, even though my low back (either sciatica or bursitis) aches like hell. When I do get to the stores (almost daily), I walk. I can do about 2 stores, 3 on an exceptional day. Come home and crash for awhile (rest is key and sometimes I feel a bit guilty about it). I love to read, but sometimes lack of concentration doesn't help. I can no longer drive, because of my neck. If I do, the next day I pay for it.
Try to focus on what you can do now, not on what you did prior to PMR. Make a small plan to do one thing. Some days easier said than done. Perhaps get some counselling from someone who's been through this or even grief counselling.
Whatever you can do - do it. Life as we know it has changed, as life does. One thing accomplished, is a success! I'm grateful for this. This post, although way too long, is not "tooting my own horn". I hope it gives you more a sense of life is not over and "you got this".
The other thing - had I not had this amazing support group, I would have been a ship out of water as I have no GP and my Rheumy is totally impossible to reach out to. My support system is this forum and a wonderful daughter.
Thanks for this candid post. The challenge is to work out which might be PMR /Pred/ and age related. I’ve clocked up four years of PMR and reducing from 6-5.5mg v slowly after flares in the past.
Many on the forum describe having to change work environments, cutting down or even leaving. I’ve managed to stay in academia but it’s been a struggle with bouts of brain fog, stress and exhaustion that has affected my confidence and working relationships. Mostly it’s been a chronic drop in energy and ensuing motivation.
I try to walk 3-4 miles a day with my dog which most of the time I enjoy,. And can paradoxically give me more energy. But when combined with work deadlines it can become a huge challenge. I’m just hanging on to the fact (and inspired by DorsetLady and other post Pred members) that our brain cells might be restored at some point!!
I used to walk dogs and I enjoyed it, but even 3 years ago it was the same. Not much room for anything else. Add to the stress I have to cook dinner. My husband doesn’t cook. He has PD, but he also hasn’t been much of a cook before. That becomes a witching hour for me. I would rather work out at the gym during that time or do yoga. I have difficulty squeezing yoga into my day.
Thank you for writing your posts! I'm in the same boat as you all are. It's so sad to suddenly go from active, healthy, physically fit and strong, mentally alert and sharp, to hardly being able to walk or stand up for long, use my arms, exercise, think clearly, or talk with words I can't seem to find. I too have a torn shoulder. Plus the issues of how the medications that keep us going affect our bodies. I've aged 15 years in 9 months. I'm 63 and always felt full of energy and spunk. Now I'm afraid of my own body. I can't depend on my health anymore to be stable. I've been dealing with GCA and PMR flares this past month, probably from reducing prednisone too quickly. So back up to 20mg, plus Actemra, hoping that works. I wonder what the future will be. I got a lot of Low and High markings on my bloodwork yesterday and worry what else is going on in my body.
All I want is to retire to a warm island and be in the water and sit on the sand everyday.
I'm so grateful to you all. Hearing that you go through the same things helps so much.
Strange - absence of aldolase is considered normal so it can't be too low!!!!
Cholesterol goes up with pred - and even more with Actemra! Mine did.
A/G ratio - not that simple, what are the albumin and globulin levels and HOW high is it but up to 2,5 is usually considered normal:
"In general, an albumin/globulin ratio between 1.1 and 2.5 is considered normal, although this can vary depending on the laboratory performing the test [4]. Your blood usually contains a little more albumin than globulin, which is why a normal ratio is slightly higher than 1 "
If the lab sets 2.4 as the top of the range the computer will automatically say it is high though it is negligible.
MCH of up to 33 is considered normal - again, case of "computer says high" I suspect.
I'm not the person to ask about statins - I can't take them, they made me ill twice so no longer on the list! I was put on ezetimibe - brought it down some and no adverse effects I can identify. Costs more than statins I imagine!
Oh, great to hear your feedback. I was scared about the low Aldolase. How is the ezetimibe working for you? Any side effects? I think I need to get the cholesterol lower.
Well that's great to know! I'll ask my doctor about it. I have heard people say they had bad reactions to statins, so great to know there is another way. Thank you so much!
Good to know. I'm going to try a red yeast rice supplement that is supposed to help. If that doesn't work quickly, I'm going to have to go on one of these medications. I appreciate your help. Thank you
Red yeast supplements contain the identical substance to lovastatin except it isn't monitored closely and dosed as accurately because it is classed as a supplement. It may well do the job - but not as safely and is likely to have the same side effects as a statin.
Ok, good to know. I checked with my doctor and she said I could try it for 3-4 months, so I'm going to give it a go. I appreciate your knowledge!!!! Thank you so much. I'll look up the side effects of statins. xx
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