I know we all are bored and tired of this disease but I cannot believe how this has affected me. I am 57 and was extremely active with running and socially very active but now!!!! Yes, I walk my dog and get to chat socially with other dog walkers but my life is so boring. I am worried about crowds as the last and only time I did mix was once over Xmas and I caught such a bad virus that I am put off by doing it again. I am very fatigued at times and fluctuate between some pain some days to none to talk about, but the weakness in my body still stays. The steroids make me an emotional wreck at times, tearful, sad and feeling sorry for myself. I know I have to find things I can do and not what I did do but that is harder than it sounds. My worry at the moment is being left out as I don't see the people I once did as travelling too far from where I live is not an option. So, I sit here with my dog and watch her contentment and sleep while my groundhog day begins and ends the same.
Everyone wants this disease to go, I appreciate that and I know that I must get to a positive place but my god it is hard and harder than I thought it would be.
Thanks group, just writing this has been therapeutic in itself. Have a good day everyone.
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Markandevie
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Sorry to hear this.. but you have to concentrate on what you can do rather than what you cannot.
You can still do some exercise at home - and thus is link to recent booklet from the charity - it may not seem much to a previously very active personal, but its a start - see here - to download or order -
Not sure if you are a member of charity but if you are you should have received a copy of last Newswire which had a article on mood - and this was posted recently -
Finally, do please seek help - I know it difficult to a. make the first move, [but you've done that by writing this post] and b. to get a GP appointment to start the ball rolling, but there is help out there.
Thank you for your prompt reply. I am aware of what I need to do but it is so hard as when I do start to exercise it sometimes causes me pain in my shoulders and so worried about a flare up. I will check on the links you kindly sent and may talk to my Gp but pills I am not taking. I take too many already . Thank you as always
You don't always need pills... my late hubby had a course of CBT [following heart and cancer problems]- very sceptical about it beforehand - roughie, toughie outdoor countryman, ex military . But it helped him. Actually what he did say to me was, the therapist only really confirmed what I knew I could do, and had to do, but gave me the confidence to do it. And normally he was a very confident man [as I'm sure you are] - but sometimes that hides from you when you are feeling down - quite normal - just needs a little nudge to reappear.
As I said there are solutions.. for example if you are a handyman does your local area have a mensheds group - although you don't have to be, its just a place to talk -
You are not alone 😘! I think most of us are nostalgic for the life we had before this condition hit, and the more years that go by before remission, the older we grow and the further away the perspective of getting back to pre-illness form appears.
I find that my world has shrunk considerably, but not just because of GCA/PMR. Covid restrictions have left their mark and driving miles to a cultural event or going to evenings out doesn't come naturally any more. Maybe it's just a lack of get up and go induced by the illness.
Anyway, you are in the right place here to rant and rave about the miseries of Pred and the days of low mood, stiffness and fatigue. There's always a compassionate ear out there to sound off to!
So pleased to have you all here. Having a sad moment but will snap out of it soon I hope. Damn this illness. Thank you so much
Hello Markandevie🙂🏵I'm sorry to hear your struggles and sadness.
I understand.
I too was physically active: never very good at it but loved to jog round parkrun, or my husband and I would go out together running somewhere in the week.
I loved cycling to work too and that has all stopped.
I have all these memories (which is great) and when I see places I used to run or cycle it would make me feel a bit sad because I've lost what I loved doing.
It is okay to feel sorrow for losing what we once had.
Its okay to to feel sad when we struggle with our limitations.
All I can recommend is persevering and pred and acceptance.
Persevere with your walks. Walking came before running. I'm quite sure in time you will manage a little jog and then a little further.
I tried on Saturday and only did it for a couple of minutes max and was in more pain and more fatigue later that afternoon and cont days after. But it was wonderful while I did it.😊
Next time I will try less and hope to get the balance right. I joined the local gym and went two or three times a week to a class with folk who have limited mobility or strength. This was great for me as I need to see people as well as wanting to build up my weak muscles. I now go to aquafit which is one of my highlights of the week.
Perhaps try your local parkrun to walk it with Fido or volunteer. It's a fantastic boost to be there (if you can manage getting moving so early...I have done 3 this year) and you will meet lovely people.
Pred. Keep taking it and be mindful of when to taper. Don't taper like you would the Finish line at a 10km race. This isn't a race. Look back to how you were before pred and see how far you have come.
Acceptance is the key to moving on mentally and I think less pressure on yourself will make life easier and better. Acceptance is a daily thing. I write in a journal and read/listen a lot to health and well being books and programmes. I try and use the tools available to improve my health.
These are just a few thoughts that popped into my head as I read your post.
I'm not what I want to be; I'm not what I used to be; but I'm not how I was before taking pred.
I have to encourage myself daily in these things and I find so much help on this forum and from people like yourself sharing their experiences.
I hope I've not said anything to dishearten or discourage you.
All of your words ring true and although I am a weepy steroid induced person today I had to smile where you added, "I tried on Saturday and only did it for a couple of minutes max and was in more pain and more fatigue later that afternoon and cont days after. But it was wonderful while I did it.😊" as I can absolutely verify that on, My god, it felt god at the time!!
Yep! Pace yourself. My physiotherapist years ago (he guessed quite quickly I push myself too much) advised me to do whatever it was but halve the time.It's not how far or how long or how quick but getting out and trying it. Slowly build on what you can do.
Possibly chat to your gp if the pred is making you too down or sad perhaps he can reassure you its normal.
Do look at what you can do and not at the past. We can't go backwards only forwards.
Sorry you feel so left out - but look at what you CAN still do and seek other options. The one thing I have never been since I developed PMR is bored - but maybe that came from a childhood where mentioning the word bored was likely to result in something to get on with! Even Covid and my husband's final illness 4 years ago that limited everything we had done didn't leave me bored.
I think you would benefit greatly from some bereavement counselling - you have suffered as great a bereavement as anyone losing a partner, you have lost the way of life you had known for years and, to a great extent, depended on. It is the currently preferred first line approach to such problems rather than pills. Though don't diss pills - they have their place and often mean you can maintain a lifestyle you couldn't without them
Exercise really isn't a be-all and end-all - there are many other things to occupy you that don't require you to pound the pavements. You are young - but not as young as I was when PMR came along to play at 51 and it was over 5 years before I was offered a trial of pred. I continued to do aquafit, at MY level, not anyone else's though I did improve. Pilates and Iyengha yoga with the same proviso and only after an aquafit class when I could move more. I also continued to ski - building up far more slowly than Brits usually do on holiday but I lived here for most of the winter anyway.
Do seek some help - make an appointment with the GP now.
Sorry you’re having a rough time. I was like you previously - very active.
I try and walk every day and I do keep away from indoor crowds during the winter months. I have joined a local walking group - meet up once a week. You meet other people and it’s outside. I go at my own pace and find others are willing to walk with me at a slower pace. These are just gentle walks - nothing too much. I swim once a week but early in the morning when the pool is not too full - and keep away from other swimmers!
Yes, swimming is good exercise, even if you're not a good swimmer, and it's easier to move freely when the water is taking some of your weight. Particularly in a heated pool!
Also, if I'm out of energy but want to keep awake, I admit to doing online jigsaw puzzles. Every day😬. If you choose your subject carefully, you can tell yourself it's educational.
Online jigsaw puzzles! Thank you for that. I am learning so much from this forum. Will commence today - enforced rest after tooth extraction yesterday ...
I think your dear dog is trying to teach you about living in the moment and acceptance. Have you ever noticed how quickly they get over set backs and change and how their joy is just there waiting to be expressed?
Everyone here knows the frustration that you are feeling right now and how easy it is to fall into despondency. If you think you are getting properly depressed then the doctor could help and or a therapist to help you navigate this massive change in your life.
Have you explored your creativity? We all have it and very active, social people might neglect that aspect of their personality.
If you pace yourself carefully you can still socialise, even if it means a day in bed afterwards. I was amazed at what I could do on a recent trip to Australia to see my daughters and grandchildren. Bobbing about on a lilo in a peaceful, warm, shallow lagoon, with family doing their thing all around. I explained that I would disappear without warning for a rest now and then. I heard the children shushing each other as they passed my room. It can be done, it is not all or nothing at all Markandevie.
Thank you. I don't feel I am depressed as I manage my mental health well and am aware of the signs but just have these overwhelming feelings of sadness and loss such as today. I will pace myself as you say and take solace from all of the lovely people on here. Thank you
Ha, I have called it fakebook for years! So true. Gardening has helped me deal with thinking I cannot really travel the globe at high speed anymore. I did go on a cruise and just rested more than before.
I echo all that has been said. Read my bio and you'll see that most here share your frustration and sadness. It's taken me over 2 years to accept and adapt. It's easy to say, but the more active you are the harder it is. You are also young so the downside is it hits harder but the upside is you will still have many good years when you go into remission. Good luck on your journey.
most welcome. Believe me we understand. I still well up if I focus on what I have lost. Fortunately I like writing and poetry. still not the same as cycling the mountains like the Dolomites or Paris Nice.
I started this year , my seventh with PMR, determined to add more activities into my life. I had to give up my horses after thirty years because I was struggling to care for them and enjoy them to my high standards, so I bought a puppy who takes a lot of looking after but gives me back so much pleasure. On a miserable day like today I cannot get away with being lazy about letting him outside, picking up after him and braving the weather for a walk.
I have also joined three crafting groups, learning about glass fusing, completing an unfinished rug for a friend, and finding good ideas for non recyclables. Do you have any tasks you could turn your hand to, or any projects you have put off doing. A book you have not read yet, a podcast to listen to. YouTube has all the Zoe podcasts and there is so much to learn about science and nutrition.
That said I do spend a lot of time watching TV, but I try to choose programmes I might learn from, like Abandoned Engineering. Maybe this is the time in your life to extend your knowledge and experience. Best wishes Chrissie
Thank you. Yes. I read a lot and tutor from home for an online college so busy for a couple of hours a day but I suppose I just want what I had before and patience is not my strong point. You are right when you say I need to extend my knowledge in different areas so will have a look thank you. So pleased I have my dog as she is such company. All the best to you and again, thank you
You might want to look at the new online WI Learning hub. You don't have to be a WI member to join the activities and online events. There is lots to choose from,talks, crafts, family history and more; some are free, others very reasonably priced. Some courses are just an hour long. Live events often can be accessed for several days afterwards, which is great if you don't feel up to watching after you have booked.
It sounds as though you think you will never get back to where you were before, but that is absolutely possible! I was a keen triathlete when I was diagnosed, and all the advice I could find seemed to be telling me to do nothing - I thought I might never run or swim again. After a month or so of treatment and bringing the symptoms under control I was still quite stiff and weak, but just very slowly started training again. My range of movement, strength and stamina steadily came back, and of course there are times when I made my hips and shoulders more sore, but it would settle and I'd go again. Over the next 6 months or so, still on prednisolone but tapering at a pretty normal rate, I was almost back to my "off-season" fitness. By a year, I was essentially back to normal., though still on treatment. The most striking thing had been that running seemed to have no bounce at all, and it took longer for that to feel OK. Cycling, on the other hand, sometimes even made my hips feel looser, so you could try that once the weather starts to improve.
So, it's not all gloom and doom. I hope this helps a bit and wish you all the best.
What an amazing story. I too ran marathons and am frustrated by it all but you have made me think more positively now. I will get my bike out first and have a gentle ride and see how it goes and maybe a jog to break up my walking and see how that goes too. Yes, I will be steady and who knows. I may even get my 2 hour 51 min pace again...... in time eh. Thanks again. Made me feel good
That's certainly where I will be starting from. In my case the baseline appears to be the bottom of a well hoping for a bucket line to grab hold on to start climbing out.
I'm just back from a holiday- very much adjusted for PMR- and am fighting the disappointment that I'm not as competent as I used to be. I think it's hard that this illness not visible, so it can look like incompetence or clumsiness, rather than genuine difficulty. Pain is more or less invisible to other people. But we have some skills by this age and can operate around it- pacing, accepting help etc and can make plans according to what is possible, and there are things that are still possible. And spring is coming.
Thanks for sharing your story. I’m 52 and diagnosed 6 months ago, I had just started my latest half marathon training and bang!
I’ve been able to slowly build up my fitness and just before Xmas managed a 10k run. It can be done.
Like you I’ve really struggled with the mental side, mood swings. I found a therapist, who really helps me explore my feelings and rationalises some of these awful experiences. I also started on anti-depressants, something I’m really opposed to. I have to say they do help.
I’m nowhere near being who I was and this journey is really, really tough mentally & physically.
Hang in there fella, you’re not alone and you will get better
Most people with an autoimmune disease already had it before Covid existed. SOME are probably a fallout from Covid but only because any infection has the potnetial to trigger an immune system meltdown in people who have the genetic propensity for it to happen.
Your post really spoke to me, the way you describe feeling is so similar to how I'm sure a lot of us feel or have felt throughout this journey. For myself it took a number of years to be finally diagnosed and its been a long journey since then. At one point I thought I would have to give up working and I did end up been on sick leave for 5 months, I work for the NHS and thankfully they were really supportive and although I have changed roles I'm still working full time with them. It has taken a long time to really come to terms with the fact that I just cant do as much as I used too, what I have learned is that i can do most of the same things just in smaller doses or for a shorter length of time. You will get there .... When it comes to our mood and emotional well being its really important that we pay attention to those feelings as depression can creep in even with the strongest of people. I'm blessed with an amazing GP who has been with me for the whole of my PMR journey , she has seen me cry, shout and rant and rave on many occasions. On one of my monthly appointments she commented that I was not my usual cheery sarcastic self, I replied that I was fine , but she pointed out things that I didn't want to admit too and I had to agree that I was feeling flat. Anyway she talked to me and I agreed to try a low dose of sertraline, not that I thought I needed it or that it would do anything for me except up my pill count but within a very short space of time I felt better, lighter within myself and much more positive. Still got PMR and still on the steroids but Im ok and getting on with life. Stay strong and stay positive Markandevie
’my god it’s hard and harder than I thought it would be’
I was initially told by the doc who assessed me in A & E that the treatment for GCA was brutal. I knew the steroids were grim as I’d had them in 2016 for another AI condition. I remember looking at the 60mg pred and saying ‘oh no the devil’s drug’. He insisted I take them immediately and I recall saying ‘I’ll need help for this’. The guy’s quick diagnosis based on symptoms and sky high inflammation markers saved my sight.
Yes, it’s so boring and harder than I thought. I’ve had many ups and downs like you and I’ve not always sought help when needed, such as experiencing depression. I got there in the end but still grieve for the things I used to do, trying not to be envious of my friends’ energy levels and concentrate on what I can do and join in with - it’s not easy.
Stick with the folks on this site. They are such a help, whether responding to a rant, explaining about meds, tapering or blood test queries - PmrPro’s knowledge is second to none when I’ve whittled about mine.
I was initially told by the doc who assessed me in A & E that the treatment for GCA was brutal. I
But not as brutal as losing one’s sight.., I do wonder where some of these doctors get their ideas from. Have to say I never found Pred brutal -unpleasant at times, yes - but brutal, no!
I did find it brutal, he was spot on for me but as you say, better than sight loss. I don’t think I helped in initially not wanting to take the steroids. To be fair I sensed stress, if not panic in his case. I wondered whether he’d been involved in a patient who had lost sight in the past - I had gone to Eye Casualty. I have thought of him often. He was kind, suspected the diagnosis without further tests and I was treated quickly. He spent a long time with me on a phone call a week later when I rang up with a query. He told me he was glad I called him. I actually wrote to thank him a month later when I fully realised how close I was to losing my sight.
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..... and now the next thing comes along !!
Hi everyone.....
And So It Goes...
Does anyone have experience of having to stop Actemra after being on it for several months and the effects of that?
Was I lucky today to have PMR?
