I consider myself as coping as I am getting to the point of acceptance of this disease after being diagnosed 12 weeks ago as a 57-year-old male but why do I have moments of absolute overwhelming sadness? I have never welled up to this extent and can even feel it coming on, which is very odd indeed.
I first thought it was a side effect of steroids ( I am currently on 9mg and reducing 1/4 every 10 days minimum) but, now I feel it may be PMR and its effect on my mental health. I have always been a very positive person in all aspects of my working life where I tutor students online in psychology and in my social life where I used to run every day and actively had a busy time socialising at weekends, but now I am not so sure if my mental health is suffering.
Basically, I feel very alone with this horrible disease and fed up with being worried about doing too much physically and not including myself in social events where crowds could be present and worried if people bump into me too hard etc.
I know I have to buck my ideas up and change the way I think in order to change the way I behave but it aint easy.
Thanks for listening to me, always good to get stuff off my chest.
Written by
Markandevie
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You don't have to "buck up your ideas"...but you maybe have to accept what you have - and the loss of your previous life, albeit temporarily- although your brain isn't telling you that at the moment.
Many describe a PMR or GCA diagnosis as being almost a bereavement - and like that, you have to go through different processes to get out the other side.
This link from FAQs was published during Covid - but it applies to any long term illness -
Why are you avoiding crowded situations? Is that a hangover from Covid? I don't specifically avoid crowds any more than I did pre-PMR but I don't actually like crowds and noise, never did. I flew to the UK and back last week - I wore an FFP2 mask for the flight but really I think in security at Manchester was the most chaotic place I spent time!
Maybe you would benefit from bereavement counselling? Would you be surprised at your reaction if it were a close family member or friend who had died? The loss of your former lifestyle is a bereavement and sometimes takes more getting used to than the loss of a spouse. In both cases you do it on your own and only those who have been there are able to really "get" it.
Most things can be got used to or adapted - running is perhaps most difficult but even that is possible if you listen to Skinnyjonny and it is something to aspire to. Choose your battles and you will surprised how many you can win.
“Buck your ideas up” ? I think you need to start being much kinder to yourself. This is a horrible, painful disease and you need all the TLC you can get. PMR often follows a period of prolonged, relentless stress. Something like a bereavement or on-going work stress, or family difficulties. If this is the case for you, maybe you feel sad because you finally broke. Alternatively you could feel the sadness because of what you perceive to be lost with this illness. Your busy fulfilling life with an interesting career and a busy social life, maybe.
PMR and GCA tend to be finite, they do eventually go into remission. That is something to be grateful for.
I think you answered your own question. You are feeling the sadness because you are on the road to acceptance and it is really painful for so many reasons.
I am glad you found us. This is a remarkable forum with a culture of real help, advice and shared experience. You will never be alone in your so common experience of it - the crowds, yes, the social demands yes, and many more difficulties. We are in this together, so please stick with us. The sadness will pass. X
Steroids have done the trick with controlling the PMR physical symptoms, but my emotions have been all over the place and I've not been at work since. It's been pretty dark.
After speaking with the doc I'm on anti-depressants, I have private wellbeing and physio therapists. This has all helped.
In Aug I could barely get out of bed and in the swimming pool lifting my arm out the water was impossible. A few months on I can swim, walk / run & cycle.
I don't know if this helps, but it does get better.
Thank you and really pleased you are back in some form of normal. I am back walking, well speed walking as I used to run up until July of this year over 50 miles a week. I was told running may be an issue but when I feel up to it I will try again. Yes, the emotions are crazy at times and yes those days a prediagnosis were horrible. The pain and stiffness were just incredibly debilitating and never do I want those to return. You are the youngest I have met. I am a mere 57 and glad to be acquainted and wish you all the very best . How are you doing with the tapering of prednisone?
I was just starting half-marathon training when it hit. It was such a shock, I’m treating it like recovery from a muscle or ligament problem - slowly and in small increments.
Tapering has bought its own problems. I’ve not reacted well to Pred or its reduction. Each drop creates a wobble, bit the last few have been easier and less severe. Not with pain, but more head fog, dizziness and fatigue. Things I never had before the steroids. Still I’m respectful of the advice given on the forum.
It seems that tapering is a real issue for everyone and different strategies are being taken on by us all. You mention fatigue.....my god , fatigue has taken on a different meaning. When it happens which is at least a day a week and for a few hours it is overwhelming to say the least. I too am respectful to the advice on the site and has helped me so much and continues to be.
I have found that it's now, soon to be 3 years in, that mood swings are happening.
At first I was immensely relieved that I had found out exactly what was wrong with me and that all scans and various tests had ruled out life-threatening things like cancer. The high dosage of Pred at the outset (40 mg) gave me an enormous energy boost and despite very poor sleep I was so pleased to be free of pain that life was good.
Now, on a much lower dose (2 mg) I have days of total lack of motivation, low mood, muscle weakness, feeling as if I'm living like a 90 year old, not 65. On other days (especially when the sun shines) I can walk for an hour and a half and go to Pilates and line dancing which really lift my mood.
Inviting friends round for dinner in the evening is becoming a thing of the past. Now we tend to do lunches and go to bed early. I also find gatherings of more than about 6 people hard to deal with. The crossed conversations and level of noise are too demanding and tiring.
I know, thanks to the people here, that there is an end to the condition at some point in the future, but the years are speeding past and we are getting no younger!
I completely sympathise and wish you all the best. You have found a community here who can empathise 🌸
I was 56 years old when I was diagnosed with PMR. Before the symptoms began, I was a runner, someone who had been running a minimum of 3x a week since the age of 14. I was getting ready to start training for another marathon.
Once the symptoms hit in early 2021, I was only walking my dog later in the day, which was a slow, short walk. Once I was put on Prednisone (40 mg after 5 months of pain in hips, groin, shoulders, upper arms, as well as a pounding in my head), I felt like I could run that marathon without training! However, I realized that I needed to stick with walking, and have been only walking for the last 2.5 years - I now walk twice a day, about 8-10 km total. (I say "only", but I know how lucky I am to be able to walk that much with PMR). I made the decision to not run for now as I don't want to stress my body out and don't want to get injured, with PMR affecting tendons. I am now down to 4.5 mg of Pred, hoping to start another taper to 4.25 mg or 4 mg in the new year.
I have been off work for the past 2.5 years and will be starting a gradual return to work in February or March. I have a wonderful psychologist who I speak with monthly - they have been a lifesaver for me.
I'm so grateful to my psychologist and the wonderful people on this forum who I found after I had a horrible appointment with my rheumatologist. They told me, among many things, that I was addicted to Prednisone, that it was like cocaine to me, that my pain was psychological, that I needed to be tougher, and that I probably had fibromyalgia as PMR couldn't last over 2 years. They also said that Prednisone doesn't help with pain. I responded that Prednisone deals with the daily inflammation that causes my pain. And when I mentioned several peer-reviewed medical journal articles about PMR, they said to me "Oh, you and your peer-reviewed articles!" I couldn't believe my ears as they were their peers, not mine! I did tell them that they were not treating me like an adult and that they were not being very respectful. I will never go back to that person again.
This article was just shared yesterday by Mrs. Nails, which I found to be very helpful as someone diagnosed with PMR in my 50s:
I thought those in the medical profession were there to help people. Furthermore, I thought they all had to take the hypocratic oath, of which my understanding is that the very first line is, "First do no harm!" Yet that rheumy was quite happy to see you harmed by their attitude and dismissive comments.
Before I retired, in my professional life I would never have spoken to any of my customers like that, and I'm amazed that the rheumy you saw felt that they could treat you so poorly. You've taken the right decision regarding that person.
By the way, I had just turned 59 when I started getting PMR, and I was nearly 60 by the time the specialist I saw was prepared to try me on steroids. He tried all sorts before admitting defeat and finally giving me 15mgs of Pred per day. The following day I felt like a teenager, no pain, no stiffness, but instead I got tinnitus, and I still have it 13 years later. So there was a price to pay for the life I got back. But as far as I'm concerned, I'll take the tinnitus any day rather than give up the QOL I now have through Pred.
Thank you so much for your message. Yes we are lucky to be walking so far, I managed around the same amount daily and it feels good. I love your positivity. All the best to you
Awe don’t be hard on yourself you for sure don’t need to buck your ideas up, having PMR is a rollercoaster experience, ups and downs in every shape and form!! I think mental health suffers because your life turns upside down for a while! Be kind to yourself it’s a long haul not a sprint you’ll get there! 😊there is some amazing people on here who will help and give you great advice and at least you’ll never feel alone in it all 😊
You're being too hard on yourself - coming to terms with PMR is not easy or quick. The low mood could come from the PMR, steroids or adrenal insufficiency too. Feelings (good or bad) do pass so it's a question of finding a survival strategy and if that involves retreating from everyone for a little while or sobbing on the sofa, then allow yourself to do it without guilt. It might help to talk to someone or try cognitive behavioural therapy but someone is always available on this forum for support. I find lots of people too overwhelming anyway but in the back of my mind is compromised immune system too
I know it's a matter of the old 'NHS post code lottery' but if you are seeing a consultant rheumatologist, it's worth raising your sadness and fears with them - for the loss of the life you had and the path you thought you were on.
My own rheumy, noticing my trepidation about making plans because 'I might not manage so perhaps I won't do at all', referred me to the hospital department psychology team. She rightly described getting a PMR diagnosis as a big shock - in my case, at the start of 23. Whilst I didn't think it was needful, discussions on 'pacing', personal values and how to get there surprisingly beneficial. Just like on this wonderful forum, 'they know' and can help.
OK, things aren't the same. Sometimes we reflect on the changes and feel down, wondering when and how it will end. At age 80, a bit more than a year into my PMR career, I suggest that it helps to try to something new, to change our orientation slightly. Try to paint, to draw, to write; to hike, to camp, to swim. If you haven't had one and can do it, get a pet. Focus elsewhere. Succeed in little things. Just my thoughts, not for everyone, I know.
AW! My Arthur's a Bedlington/Whippet/Jack Russell cross. I got him 7 years ago when I first experienced fibromyalgia-like symptoms (now recently confirmed as GCA FMR). It's just me and him in the house, and I can't imagine being without him. I'm having a weepy few days. So fatigued yet not sleeping well at night. Still on 40 Pred after 2 months. I just look forward to the prospect of recovery, inspired by this forum. I don't miss teaching, especially the marking, but I do feel redundant and useless from time to time. I have thrown myself into charity work - I can still do some good in this world! I knit and collect food for those in war-torn areas. Ukraine atm. Picturing kids in my garments and blankets cheers me up no end. Oh, and the feeling of "there but for the grace of God ..."
It's such an adjustment to make. But we'll get there!
What a nice message to read and know what you mean about couldn't be without your dog. Those days of overwhelming sadness are still with me but seem to come in waves and never know when!! Great to see you are doing so much for Ukraine. Its such a sad situation 😞. I work as a online teacher and find a few hours a day very helpful. All the best to you and hi from Evie my Bedlington to your pooch.
I don't post much anymore but felt compelled to respond here.
I've done a fair bit of patient involvement in various groups whilst having PMR and the one that stuck with me was a small focus group with a psychiatrist.
His opinion was that we don't recognise or tell people about the mental health impacts of taking steroids, even at our relative low dose. He talked about steroid psychosis being well known, but not the irritability, raging emotions over thinking etc etc.
Having PMR is a journey in itself but taking steroids add to this. You certainly don't need to buck up as everyone else has said, you need to give yourself a wee break.
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