Crying

[Uglow]

I find myself so down at moment anyone else! I feel overwhelmed and so worried this is my life now. is this prednisone or me. I’m tired and feel so fed up not sure where to turn. Any advice.! I get up everyday not that early around 10 am but take pred at 8 I go out to have a brunch every few days. Even if I have to drag myself. I have 15 min walk, not every day but feel like I’m pushing through blurred mess. Im trying to keep things ok but I’m not ok

[Karenjaninaz]

I can really relate to that feeling. It’s just normal to be fed up with the whole thing which has taken over our lives for several years. It’s best to express it because then it loses its power over us and we can do constructive things to feel better. The thing about our group is that everyone understands. Earth people do not have PMR and cannot relate cannot possibly understand this journey.

[Uglow in reply to Karenjaninaz]

Earth people 😂😂😂😂😂😂

[Exhiker]

I sympathise with you glow and know how you feel, I get very down as well at times. Frustrated thinking on my old active self, but I look at the members on here who are further on or at the end of the pmr/gca journey and just hope and wait for that stage to come when I can look back and finally see how far I've come. Keep holding on in there glow, we're all with you. X

[Moxon1415]

Well done to keep going !!! It’s is hard to keep positive , we have 2 choices !! Either go down & fall into depression & we know where that leads !! I believe the stronger the pain , the stronger I need to be to distract myself to do something I enjoy !! Presently I’m isolated here , have different transport these days !! Travelling is difficult at the moment as paths are very bumpy & not many ramps for a smooth journey across roads !! Hopefully moving to better social area , cafe , supermarket , pub , club Gregg’s ( priority ) yeeeeeaaaahhhhhh !!!!

[jaycee444]

Hi Uglow - I can certainly relate to those feelings too. My life has had to change so much since I was diagnosed with PMR and of course taking Prednisolone has its own drawbacks even if it does ease the pain. From being a very active 74 year old who regularly walked 5 or 6 miles a day I became someone who could at times barely make it up the stairs and often felt like I could sleep standing up. This along with the restrictions and isolation that Covid has forced on us has made it a very stressful and for me depressing time of my life. I try to look on the positive side but sometimes its hard so I do feel your pain. I do hope that you get the support you need from this group of fellow sufferers..... they will certainly be there for you when needed.

[DorsetLady PMRGCAuk volunteer]

Unfortunately it’s part illness, part medication, but just keep doing what you are doing….taking each day as it comes ….you will get through it…and remember it’s okay not to be okay!

Ok

[HeronNS]

Am I right, having looked quickly at your profile, that you only started pred in February of this year? What is your current dose of pred? Have you been trying to taper too quickly, maybe?

[Mary63]

Might I suggest you think about some anti depressants? Even if it’s just temporary….to give you a bit of a lift. I would seriously consider it.

[Kendrew]

Hi Uglow.I felt so sad to read your post and could relate completely to what you were saying and feeling. It's a complete shock to the system when you're first diagnosed... both physically and psychologically. One day you're a 'normal', healthy person just going about your normal daily business and then suddenly it seems like you've been catapulted into this bewildering world of pain, confusion, uncertainty and ill health. Although this is obviously a perfectly normal reaction, it probably offers little consolation and right now you're probably feeling quite scared and overwhelmed.

I experienced all of this myself, as do most of us after diagnosis, but I promise you that things can, and indeed do improve. It does all feel a bit bleak at first but as you become more familiar with your condition & the medication you'll quickly learn how to better manage some of the symptoms and side effects.....there's much you can do to minimise many of these. The tiredness and fatigue is unfortunately all part of both the condition & the steroids, so it's important to recognise this, accept it and learn to 'pace' yourself.....as is accepting that life has indeed changed and will be a little different for a while.

I always try to remind myself that there are far worse things I could have been diagnosed with and I still have many blessings in my life. My garden and the outdoors are my 'happy place' and I find comfort and calm here. Like yourself, in the early days after my diagnosis, I made myself go out for a walk every day....even if I could only manage 5mins. It lifted my spirits and made me feel more connected to the real world instead of feeling like I was walking around in a kind of bubble.... detached from everyone else!

I'm just over 2yrs into my PMR journey and I still have periods where I begin to feel quite low, but I now know that although I can't control the condition, I can definitely 'manage' it reasonably effectively, and instead of focusing too much on what I can't do, I try and put what energy I have into focusing on all the things I can do.

This condition will always require a period of adjustment and for some, this will be more challenging than for others. Just remember though, we all understand exactly how you're feeling and are here to support you (and each other) through these more difficult moments. You will get through this and we're all here 'holding your hand' as you navigate your way along.

You're bound to have ups and downs and although the 'highs' and 'lows' come and go, the lows almost always eventually pass.

I think that although antidepressants may be a consideration, they should probably only be an absolute last resort....we're often already on a lot of medication and adding further to the list can often compound things further and cause new issues. I'm not saying rule them out entirely but just be mindful of the possible consequences of adding more medication to your list.

I hope you're able to feel some peace and calm soon and I think if you can accept your new 'norm' you'll be half way there to achieving this.

Sending you a hug.

[Minah]

Plz discuss with your gp ,may be you could get some advise from there also continue to talk about your condition and feelings here because its also help a lot to share your thought among those who are in similar situations. Have you tried talking therapy which could also help you.

[MrsNails]

Hi Uglow

So sorry to hear you are struggling, PMR can take some adapting to & also Prednisolone can impact on how you feel.

It’s worth a chat with your Doctor as you may need to consider an antidepressant.

However, in the meantime have a look at “Living With A Chronic Illness” in FAQ

healthunlocked.com/pmrgcauk...

We all need to adapt, l notice HeronNS asked you about what dose of Pred your are on now & wondered if you’ve tapered a bit too quickly, let us know as that could be contributing to how you feel.

Kind Regards

MrsN 🌺

[SheffieldJane]

I admire your brunches, These things are important and you are right to persevere. It won’t always feel this dreary. You have a job to do and it’s all about you getting fit and well again. With me, this thing had been brewing for a long time. Life was out of kilter and needed a major re-balance. Step one was acceptance, not defeat though. You really are not alone, as you can see from your replies. 🌻

[Coffeebeans in reply to SheffieldJane]

I agree with that comment about life being out of kilter. I'd ignored the warning signs for years.

[Arflane97G]

I found keeping a journal really helpful so I could track how far I had come and to keep a record of what made me feel better or worse and so I could look back at the good days when I had bad days. I used to get up early to take my pred (4am ish) and then go back to bed for a few hours. Breakfast, a warm bath and some stretches would help me feel better and I tried to concentrate on any minor improvements and would also treat myself to scented candles, bath salts etc. Guided meditation also really helped me. Look after yourself, best wishes

[Kendrew in reply to Arflane97G]

I keep a journal of my condition too. It's been of enormous help when I've wanted to refer back for various reasons. Without the journal, I wouldn't have realised that the the head pain I was experiencing... again!!....after 14mths since the last episode.......had re-emerged whilst on the same dose of steroid as last time!! Nor, would I have been able to tie up re-emergence of aches & pains with specific over-activity. ....and as already mentioned....it helps hilight the progress and improvement that otherwise might go unnoticed.

[Daffodilia]

May be try to develop some new interests to lift your spirits now Covid rules are easing- I am back to swimming this week and singing next

[HeronNS in reply to Daffodilia]

Oddly, I've found myself resistant to developing new interests or even pursuing the old ones. It's hard to find the motivation when you are tired and down. If this is how Uglow feels, I understand.

[Kendrew in reply to HeronNS]

Lack of motivation is often the problem isn't it! If I can get outside...even if it's only into the garden....it seems to help lift any cloud hanging over my head.

[Uglow in reply to Kendrew]

Hi Kendrew i go in my little garden but can’t do much so just boss my hubby around to do it 😂 I’m just doing what I can now. I can’t do new stuff no inspiration. Just working to feel half human first. 😂

My garden

[Kendrew in reply to Uglow]

Your garden looks so lovely. The colours are so vibrant and pretty. That in itself would give me joy.I can't do heavy digging or bend down to weed, but I get a stool and sit and dead-head my patio pots. I also have fat ball feeders for the birds and sprinkle dried mealworms on the grass and just love sitting and watching all the different birds and their antics!

I know eventually you'll get your mojo back and even if your energy levels limit what you can do, it's life's little triumphs that lead to greater things.

Just accept your limitations and do what you can. There's no law that says you have to be constantly inspired or motivated... to do anything new!!

Having been a regular visitor to the gym and very active and healthy prior to my diagnosis 2yrs ago, I felt very low and like it wasn't even worth making an effort as it wouldn't make any difference. However, that wasn't the person I wanted to be and with a little help from our friends here, I learnt more about my condition and meds and went from dragging myself out for a daily 5min walk at the beginning to now managing an hour long walk around the surrounding countryside ....all be it with 2 brief stops for a rest. I also do regular YouTube yoga for osteoporosis. I'd never have imagined any of thst possible, but it is. You have to be patient and learn to pace yourself, and the initial shock and despondency that comes with diagnosis will eventually subside.

[Uglow in reply to Kendrew]

Hi I can’t dig down so I have allPots I think

Pushing plants into

Pots makes my fractured vertebrae hurt more so I’m stopping that. I go on daily rides in countryside with my husband sometimes get out for a coffee and cake 😩 I have felt a true understanding from you thank you so much.

My garden is small but I love it

Garden

[Kendrew in reply to Uglow]

Oh wow! Your garden is such a beautiful space. How glorious.

[Uglow in reply to Kendrew]

Thanks

[HeronNS in reply to Uglow]

That is beautiful!

[Hidden]

Hi it sounds just like me at the same stage. It is dreadful I spent a lot of time in bed and took minimal excercise. I stuck with the tapering not to be confused with reduction. I tapered at a rate of 1 or 2 mgs a week. It does get better. You will recover love yourself believe that 6/7 months from now you will be free of pred the fuzz lifts the anxiety reduces and life improves have faith best wishes

[whitefishbay]

I found early on that if I met someone for coffee (and had made the effort to trudge there) that I felt better. Things will get better but it takes time. Give in to a bad day and then you might feel better the next day. My daughter (no pmr) believes in having a big cry once a month and she feels so much better. She watches The Notebook and sobs.

[Pixix]

I think the combination of pmr and Covid is tough! Everybody’s lives are affected adversely by covid...and then along comes polymyalgia just to top it off! Don’t be hard on yourself, we all feel down at times but I agree with others and think a call to your doctor would be good as it doesn’t sound like you are having any ‘up’ periods to balance the ‘down’ a bit! Hugs, S x

[Raewynne]

Hi I was feeling very depressed and generally pretty awful on top of everything to do with reducing Pred and I have just been told that I have a low iron count and it's been on a slippery slide for a number of months Had various tests and at the moment the Dr thinks medications are blocking my iron absorption which can cause tiredness, depression and all sorts of things.I have now had an iron infusion and I am not feeling quite so BAD but it can take a couple of weeks for full effect I've been told.

Anyway CHECK Your IRON levels if you're feeling depressed.

[Frewen1]

Hi Uglow, sorry to hear of your low spirits, there’s already been lots of good response here, just adding my sympathy and wanting to say you will surely get through it, as hopefully we all shall ... I find just being out of doors in any capacity makes me feel better

[Hiibilly]

Hi Uglow this time last year and many times since I have felt exactly like you do now and the lovely folk on this site gave their much needed advice and support. I am just about to have hip surgery and this time last year would never have anticipated that I would get down to 5mg of Prenisolone and not feeling the horrible shoulder, hip and other pain associated with PMR. The hip pain is very bad as it has become necrotic but knowing there is a solution for that makes it more bearable. It is the how long is a peice of string thing that it depressing but talking/writing it down helped me. I hope you feel better soon, be kind to yourself you will get there and regain some of the old you. Best wishes 🌷

[Jackoh]

You’ve done a few positive things:- got yourself out even when it’s hard, taken regular walks and posted on here. I would imagine many of us have felt the same as you on some parts of this journey. It does get better if only from the point of view of adjustment, looking at the positive aspects of slowing down and realising that we are actually ill and we need to pace and look after ourselves.

We do understand how you are feeling and do feel free to post how you are coping and feeling- we are interested.

If you do feel that things get dramatically worse for any reason do go and discuss with your GP.

The tablets can make you feel tired, disoriented and sometimes low and also the condition. That should get better as you start to reduce the pred.

What dose are you on at the moment? Xx💐

[Uglow in reply to Jackoh]

Hi I’m on 12.5 slowly decreasing

[Rugger]

The others have said everything. 💐 🌞 🚶‍♀️

[Coffeebeans]

So sorry you're feeling this way, I can categorically say you are not alone. I still get these periods of hopelessness and I have to keep reminding myself they do pass.

So keep going on the brunches, and remember these times will pass.

I wondered if you had considered contacting your local IAPT? They do sometimes run courses for living with chronic conditions. I attended one via zoom recently and whilst it won't solve anything it was really helpful for techniques and tricks to manage all-sorts of things from unhelpful cycles of thinking to assertiveness.

We are all with you in our virtual way x

[Hildalew]

Reply

I'm such an IT idiot. I have just managed to delete my first reply to you (and one to whitefish bay). In short, my reply to you said: Perhaps taking a look at your eating/patterns and, therefore, your blood sugar levels would be helpful.

But also take a look, somewhere on here, at one of Pred's side effects that randomly sparks insulin production and therefore irregular blood sugar level dips.

BUT I'm not dismissing the facts that having PMR can be a negative experience (to put it mildly!) and that we are surrounded by uncertainty, tragedy and loss, both worldwide and very close to home.

[Hildalew]

My equivalent to meeting for coffee (not as easy in present circumstances as it once was) is to ring one of two friends who (God bless them) understand it when I ask them just to talk to me for 10 minutes - about anything. Of course, it usually takes longer than 10 minutes but that's because they have interesting things to tell me. I try very hard NOT to tell them I am feeling miserable - partly because I can't really explain it and partly because I don't want them inwardly groaning the next time I call them!

I totally sign up to your daughter's principle. A 'good cry' releases all sorts of tensions that we don't even know we've got.

[ChrisinNam]

Hi Uglow. It has all been said, several times, but here's my contribution: Your post described me exactly. I found that Pred made me depressed, the illness made me depressed, being alone made me depressed. Rock and hard place were mild in comparison. So I had a phone consultation with a lovely Nurse Practitioner, and we both came to the conclusion that a mild anti-depressant could be tried. I've only been on it for a week, and it's giving me headaches, but it does seem to have calmed down some tearfulness already. And she did say I must phone her again towards the end of a month, to check how I'm doing. Talking to a person who understands and knows YOU, is the most helpful thing I've found. I hope you'll be feeling very much better, mentally, very soon. We're all thinking of you.

[Hidden]

I know what you mean about the blurred mess. I go out and feel quite fragile, one day I had to attend a hospital appointment and my legs were shaky at the end of the walk there. However, having had a tough time with the side effects from painkillers I am more than thankful for my steroids blocking the pain and enabling me to function pretty normally. I now only take some paracetamol for the occasional ache when I've overdone things. Yes, it's hard to be saddled with PMR, but there are far worse things out there and the illness will not last for ever. Try to adapt by finding out activities that give you pleasure without too much exertion, mine are occasional gardening, reading and painting. On the right steroids blocking the pain, I estimate that you should over time be able to judge how much you can do and can't do, without having to give up your favourite activities completely. I did a lot of gardening yesterday and thought I would suffer for it, but escaped unscathed.

You are far from being alone with PMR, so keep in touch and banish those blues.

[Noosat]

Unfortunately, I think a certain amount of depression comes with PMR and not being the same person as before. I try to socialize by volunteering where I can manage. Also go to book club and so on Had GP appointment yesterday and he pointedly asked me about my social activity. Sometimes have to literaly force myself to the park with Lily,dog, but always feel some better after I come home.=, social activities are important. I do hope you begin feeling better.

[nuigini]

Ah Uglow, I've been in your spot many times in my 7+ years of PMR, perhaps a little less in the past 1 or 2 years. I'm a slow learner and it's taken me a long time to fully accept my new life with PMR, which isn't that bad at all. Sure, I still get fed up and frustrated at times, but those times are usually short lived. I don't consider these dark, low moods as a depressive disorder. I've been offered anti-depressant medication on a regular basis since being first diagnosed in 2014 and have, and will continue to refuse them. As Kendrew says, only as a last resort.

That's not to say you shouldn't talk with your physician, but you may want to give yourself more time. Personally, I think you're dong pretty great with getting up and out, doing short walks and enjoying brunch every few days.

[carolpatriarco01]

Hi Uglow… I know how you are feeling as I’ve been there in feeling depressed etc.Anti depressant helped me so much…

Maybe give them a try?

I’ve been suffering with PMR for 4 hrs. Now and I’m down to 2 mg. Prednisone after starting at 20 mg.s

Hang in there🥰

[Sophiestree]

Hi Uglow. Sorry, I am a bit late in catching up on reading posts. I do sympathise with how you are feeling, this really is cr@ isn't it and can be all consuming, which really annoys me sometimes and just want to think about something else. I think Kendrew has said it all, in her usual empathetic way, and I would just add that you need to be kind to yourself. I think we find doing that quite hard as we always feel we should be getting on with things, and we really don't, most things can wait. Pain is so wearing, but it's great to hear you have such a lovely and supportive husband, that must make such a huge difference.

I know others have talked about antidepressants, and I am not the right person to talk about them to be honest, as I saw some pretty weird side effects when my husband was prescribed them, too many stories! But I know that amitriptyline can help with both sleep for pain and is also an antidepressant and have just been offered it for my hip stress fracture.

Arflane97G (and Kendrew) give good advice re the diary, it can really help see how things have changed for you. I actually wrote one when my husband was in hospital for the 4 weeks before his death and looking back there are things in there that I totally forgot. I also tell the children who call into Childline to do the same. Writing down how you feel can really help process things in a different light sometimes, or just get it off your chest and saying it out loud rather than in your head.

Your garden is lovely and must bring you joy just looking at it, even if you are not in a great place to work in it. I am a looker and not a doer that's for sure!

I do understand about having down days, they actually scare me to be honest, and I try not to let myself think about it too much as I witnessed my husband's depression over several years, and subsequent hospitalisation. But talking is definitely a huge help, and 'talking' here is just as good as seeing a counsellor if that isn't something that you want to consider at the moment. Have a look at Mindfulness Meditation. You can take free courses on FutureLearn with the Monash University that aren't too heavy and they have some very short meditations that start from one minute. It was actually started by someone who was in a lot of pain after a serious skiing accident which is why I looked into it due to back issues.

Sending you good thoughts and hoping for better weather to get out in that garden.

[Uglow in reply to Sophiestree]

Thank you for your in depth reply. I will definitely ponder on all you have said. I hope you journey is bearable. Xxx

[Sophiestree in reply to Uglow]

Oh dear, that was crazy long wasn't it. Apologies, clearly hit a spot for me. Note to self to sub next time 😂