Sorry to be monopolising things but I'm so frustrated. My stamina is limited because I am not sufficiently active but if I am active then I start to hurt. It's such a lovely sunny afternoon and I decided to go for a short walk. We live in an area with a lot of hills so It is difficult to avoid them. I didn't get very far although it was nice to be out. I used to walk for miles with my little dog along the canal and through the woods. I miss it, and him. Our son called round at lunch time, hubby is taking me out tomorrow and the family are coming up at the weekend. My daughter sent me a video of my 19 month old grandson 'dancing' and all I want to do is curl up and cry 😢 What on earth is this thing and what is it doing to me? Come to think of it I remember the term 'emotional lability' was mentioned when I was diagnosed with CFS. That's what it feels like now.
Frustration: Sorry to be monopolising things but I... - PMRGCAuk
Frustration
What on earth is this thing and what is it doing to me?
At your current dose would say the majority of your mental issues as well as your stamina are adrenal related.
As you feel so bad then you need medical input - as you replied to somebody else on another thread just sitting in the sunshine (even if it’s only in the garden) is therapeutic.. so do that -and reach out for professional help. Please!
Thank you Dorset Lady, I will, I promise. I am in touch with my endocrinologist by email and my GP is quite helpful.
It is much the same - and is more common if you aren't managing the inflammation of the PMR well. And I think we have concluded you aren't on enough pred. You have also been flitting from one thing to another, changing dose, changing how you taper, worrying at it like a dog with a bone, and your body is totally unsettled. You need to spend some time at one dose - say 7mg for more than a month, get used to it, used to how YOUR PMR works, what you can or can't do within the confines of it and your other disorders. Don't blame them, accept them and learn to live with YOUR gorilla
healthunlocked.com/pmrgcauk......
I know it is difficult, but acceptance is the key to living well with PMR - and it IS possible. Things have changed - just as they changed when you got married, had a baby, all the life-events you have adjusted to in the past. Now the change is that you have developed another chronic illness to go with the thyroid problems and CFS. The illnesses impose changes on HOW you can manage to do things. I can't walk as far as I used to - but I can walk further if I plot the walk to include a park bench or a cafe or somewhere else I can sit for a while. We used to walk to a restaurant outside the village - quite a long walk with a steep uphill section at the end. But having got there we would sit for a couple of hours having a leisurely lunch before walking back down the hill and home. I couldn't do the same distance in one - but with a good rest in the middle it was OK. I can't do it at all now - I could catch a bus to the bottom of the hill but I doubt I could manage it. So I would have to drive. I use the car or the bus to do the difficult bits - and find a walk on the flat that I can manage.
I remember a long discussion on LupusUK - a young woman couldn't walk far because of the fatigue and couldn't keep up with her friends but they wanted her to go on holiday with them. She was afraid she'd just spend the whole time in her hotel room. Her rheumy was dead set against the use of a mobility scooter - use it or lose it she insisted. But you can use a scooter to take you somewhere - and THEN do the amount you can manage before using the scooter to get home. You can still walk as much - just you see a different set of scenery. And instead of being able to walk only half a mile from your front door, you move the start of that walk so you include a disco, or a museum, or a restaurant, or garden centre. I get so angry when the "use it or lose it" mantra is used to actually limit what people are able to do.
It is all about looking for work-arounds. And they are there - you just have to find them and put your pride away and accept the change.
I know, I'm trying to 'fix' myself to please everyone. I've got my approach to this all wrong. I am going to seek out help. It's not fair on you and the others x
You won't "fix" yourself - you have to let pred do its part by taking enough as a start. And then YOU can start to work on the other bits. But it won't happen overnight,
You have to learn to be kind to yourself. Stop looking back and remembering what you used to do. Think about going forward. Small steps (very small steps), literally! I've been playing the game for several years and am now hovering between half a mg and 1 mg every couple of days or so. When your family come round at the weekend Do Nothing. Your days of the Hostess of the year are over. Relax and let them look after you!! And Smile!!! It's not easy but how delighted everybody (especially you) will be when you can get some control over your body. You can do it ..................
Thank you for your lovely words. These messages are wonderful birthday gifts x
Happy Birthday! I can empathise with what you're experiencing. I've had a really bad week. Mostly spent in bed or in sofa. Struggling to stay awake longer than few hours. Concentration poor. Brain fog. In pain Forgetful. Live alone too, so do get quite down about it all. Am on 7 mg at present. Think I pushed myself too hard last week helping my sons' empty their late father's house. All very emotional too as was the family home. If no improvement by Friday, resting I'm going to up Pred 1mg for couple days and see if that helps. Having multiple health issues is a difficult thing to deal with particularly if one was used to being active. I've also contacted the Wren project who support people with autoimmune disorders and they are providing talking therapy support. First session Friday. It will be good to have safe space as it were to offload.
Well said PMRpro 👍
It’s kind of what I’m trying to do. I’ve been fortunate enough to get a blue badge and find things work out exactly as you say. I can’t drive due to macular degeneration so my husband or daughter (usually) drive me to a destination where with luck we park in a blue badge space. I can walk a few hundred yards tops and in this way recently we’ve been able to get to a cinema, garden centre, theatre and shops.
Good luck everyone and many thanks for the support on here xx
It does broaden horizons a lot doesn't it?
It does x
I am the same, have been asked out by an old friend who would be very understanding because everyone has to park near where we go to, my legs have collapsed on me a couple of times, no-one has given me the reason why! Did you find it relatively easy to apply for the blue badge? My family keep telling me to apply, so housebound might make life easier! We keep plodding on together!
I applied for a blue badge for my husband on line and it was approved very quickly. Just make sure you’ve got the relevant documents.
They can only say no - so ask. One criterion is how far you can walk - you can't even walk out of the house to GET to the car! And it is how you are on the WORST day.
Hi Longtimer 😊
I took a deep breath before applying, read the AgeUK guidance and got all my evidence ready in advance. Then filled in the form online, which was quite easy. The main thing is ro stress how your disability affects mobility, obviously not just to list your conditions.
I also contacted my GP for support. She didn’t write a letter or anything, but did provide the GP practice summary of my conditions, which may have helped.
It was quite quick to do and really worth the effort.
Good luck if you decide to apply ☘️xx
PMR is life changing. You have an illness and have got to admit to yourself that you cannot carry on like you did before, you need to rest, rest, rest. It is good to take exercise but look after yourself as well.
Thank you for the reminder, piglette. I needed to read that today. I was just sitting here pondering to myself, how on earth am I ever going to get myself well again and feeling a bit sorry for myself. A zen like "going with the flow" seems to be the main requirement.
Are you interested in gardening? A Facebook page was started recently by this group for people with PMR/GCA, which has some lovely photos. facebook.com/groups/6288051...
Even PMRpro has joined - I have no garden but it is nice seeing what others get up to!
What about a pot plant!! I agree it is lovely to see people’s gardens. I love flowers and plants.
They die ... I get one every year from the Seniors Club for my birthday. Occasionally I get one that is left over. Often cyclamens and they don't like my flat!! Part of the problem is they have been overwatered at the nursery I suspect.
We have a small garden but my husband has learned a lot over the years and works hard to keep it nice. It is his happy place. I've watched him from the kitchen window and he is in another world
I know it's hard to accept but I truly think most of us have had to accept new limitations.Especially aft we age.I used to walk for miles a couple years ago.Now Iam lucky if I can walk in the grocery store.I do still try to do things but differently.Iam going to Niagara Falls for 2 nights with my husband.We live close only a 45 min.drive.I know I may just be able to go for a dinner and look out the window but it's still enjoyable.Ps I have pain too💕It makes me feel good anyways.
oh gosh yes, food shopping is exhausting. I usually need a nap afterwards.
Can you not get supermarket home delivery? This is what we do, worth £1 a week delivery charge
I could have a delivery, but supermarket shopping is the only exercise I get atm, and I enjoy the act of wandering around and selecting what I am going to eat for the week. I like to be able choose my own fresh fruit and veg. It is also one of only a couple of occasions each week when I interact with other human beings, so it is probably better for my mental health too.
Unfortunately I can no longer drive and hubby is out a lot. We do go to the local supermarket but have the big main weekly order delivered, especially when familiy are coming as our son and grandchildren like 'Grandma treats' Sadly I am not up to my usual baking bonanza this week but next time..........
There is only me, so it's a lot more straightforward. Sounds like that is the best thing for your circumstances.
My position too Groggrim - I’d be lost without my weekly delivery. It gives me a sense of influence over our diet - and I love getting in the specials for the grandchildren! x
it sounds as though you are really having a time of it and I’m so sorry to hear it. My “affliction” is much different to PMR but what I would suggest is that, having read these forums, Pred seems to affect people in a wide variety of ways and that what our experts here have said, your mental state is being affected (which is a know side effect of course).
When I started (I’m a total newbie), my blood pressure was all over the place - so much so I had to go to urgent care it was so high. Then so low I was also frightened. It simply turned out my body had to get used to the dosage and once it did, everything evened out. Again, reading here, I know to not rush things and am going slow with the taper, despite my doctor wanting to rush
I hope you feel better soon!
Hugs and Best wishes and I don’t think you should apologise for monopolising. Frustration is probably the word I’ve used most in describing how I’ve felt since getting this illness. I never imagined I would ever sign up to a forum but it’s great to know you’re not alone and people will willingly share a few wise words or just offer their support and encouragement Whilst a few kind words can’t ease the pain or replace the energy you lack hopefully it helps in some way. Enjoy the sunshine, celebrate the good days when you can do a bit more even if it’s some light exercise sitting in the garden. You’ve clearly got a family that cares about you but you have to accept that some days nothing is enough to lift the spirits and you must never feel guilty about that. It just happens to some people. Fortunately not me so far, but it might at some point and sadly I have witnessed my daughter who for no reason can wake up feeling really miserable and can’t shift it for days despite knowing she has so many blessings in her life. You have reason to feel frustrated and down at times as this illness and the meds will undoubtedly affect our mental well-being as well especially when having to adjust to new limitations of what we can and can’t do. I hope you soon feel much better but in the meantime there are a lot of us here if you need a bit of company
Thank you for the kindness you have offered x
hi thank you so much for this post and PMRpro for his reply. Everything you both said resonated so much with how I think and feel….and helped me reading it. Keep sharing that way newbies like me learn from replies!
I see my GPA consultant tomorrow to discuss my theory that my GPA is in remission and what I have is active PMR. I’ve followed pMRpro advice on steroid dosing to the letter (5mg x 5 days then 2mg every day) I’m a month in and so far virtually pain free. Previously I was fiddling up and down or none at all - hopeless.
My mood has improved dramatically - I was in a very glum place for months. So I’m sure this is PMR as it responds so well to the dosing. Such a difference to the last 2 years of boom and bust going on and off steroids as fast as a ferret down a rabbit hole, getting more and more down and getting nowhere at all!
Accepting long term meds against my DNA BUT needs must and I just want to be pain free. As for accepting reduction in physical ability that’s still work in progress, I still dream of running again but suspect it won’t ever be possible so determined to get my bike out instead - something my grumpy 2024/2023 head wouldn’t do, even if it’s only a pootle for a mile!
All the best with your struggles and I hope you find a path that works for you.
Er - PMRpro is very definitely female!!!! 😇
Yep!
sooooo sorry!!! Not sure why I had assumed you were a chap, what an idiot I am #redface
Always best to check profile - especially when name is gender neutral - as is yours ..😊 ...so I double checked... just in case you were a male footie fan or ex sailor .. of course you may still be an fan or ex services... I'll stop digging the hole now.. 😂🤣
You are right, this illness is so damned frustrating, and you have every right to feel fed up about. But never feel embarrassed to seek support here. We've all been there at some stage or other with this illness and we understand how it can drag you down. I could have written a lot of what you have written, and I have been on pred for 2 years now. Your diagnosis is comparatively recent, and I well remember all the physical, mental and emotional adjustments that I had to make. It's an ongoing process unfortunately, so don't beat yourself up about it when you are struggling. Pro is absolutely right about working within your limitations. Try to create moments that give you pleasure, even if they don't quite involve the challenges and adventures that you once took for granted. On some level, it is still possible to enjoy life, just at a much more sedate level. There are times when you will feel quite justly peed off by it all, but in between it is possible to have some happiness, which will help you to better cope with the difficult times. I don't know if you know about the PMR/GCA gardening group on facebook? Quite a few of us get a lot of pleasure from our gardens.
Reading your post and Pro's reply reminded me of something that happened to me a couple of weeks ago on holiday. I visited a national trust property at Cragside and they had closed the level path from the car park to the toilets due to works, necessitating a steep walk down hill and then back up, a distance of about 2 or 300 yards. I then realised that I was stranded and unable to get back to my car. I just couldn't make it and had a complete meltdown in the cafe, so they had to radio for a vehicle to take me back to my car. I felt such a fool at the time, though I can laugh about it now. Another lesson earned. I did manage a nice flat walk around the lake a bit later on, after I had had a good rest.
Dear Groggim, please don’t be sorry for about writing on here again. We are blessed to have this forum and be able to support each other when we feel everything is too much. I too get frustrated not being able to garden so much so now we have a gardener. I continue to sing in my choral society and play in my local concert band but sometimes the next day I’m shattered. So sometimes I go for half the evening rehearsals which helps and I always try to rest the next day. Take heart you will adjust and enjoy what you do knowing how brave and strong you are to cope. Many blessings.
Hi, I can’t add to the great advice and support you have been given but just to say that you are not alone and many of us are having the same issues and can sympathise with you. We will eventually 🤞come to terms with this illness and fighting it just makes us feel worse.
Enjoy the weekend with your family. Sending you a virtual hug, 🌸
I find a rest during the day makes a lot of difference, even 20 minutes sleep after lunch and I feel so much better. A friend with ME says when she felt she could hardly move, she would crochet and it occupied her mind and felt positive and creative, shes made (and sold) some lovely things. One of the difficult things for me was accepting I sometimes just couldnt do things I said I would do, and not feeling guilty about cancelling. Hope you have a lovely day today 💐
Hello from Canada ! I appreciate your exploration and all the replies . I am assuming I am on early days ( diagnosed quickly in November 24 in the emergency room ) . Yesterday I was back there with a round of diverticulitis. It’s is a difficult change to learn whatI can do , should do , want to do and not really trusting myself . I find it useful in some quiet moments to check in and find myself . Happy Birthday and feel the support coming across the ocean .
Hi. I'm going to be 75 (a young 75 in my mind), on Saturday and so glad to see it. I've a lot going on heathwise and not "only PMR". I guess all I can say is accept where you are right now. You may never be the same old you, but maybe re-invent "you". PMR kinda of forces us to do just that. I'm toying with the idea of a scooter. Plan on taking breaks when you do almost anything, dishes, cleaning, cooking. But do it. A wonderful sense of success when we accomplish one thing we set out to, as long as that might take. Whatever you CAN do, do it. Don't focus on what you can't or used to do. That chapter is done. 🌺🫂
Big Birthday Wishes to Groggrim and others who will hopefully be celebrating soon. Just keep voicing your concerns here as it especially often hits a nerve with others on this great forum.I too go down the rabbit warren oh woe is me, my life is rubbish now with PMR, look at all the things I now can't manage that once upon a time was a piece of cake.
This disease sucks and it it weren't for the fabo support and encouragement given here to each and everyone of us we'd probably be in dire straights as most people/ family/ friends don't get it...nor do they have to!! But a big, loud shout out to all members, Ambassadors and volunteers.
Please never leave us 🙏
Hi Groggrim,
I so relate to your post today and I can almost hear the frustration in your voice. I was diagnosed in 2022 and am now 66 and have been on less than 7mg of Prednisone for the majority this time having started at 15mg.
I have tried Methotrexate, Hydroxychloroquine and Lefluminide one after the other for a number of months each and simply could not tolerate any of them without becoming violently ill each time.
Now I am on 5mg. of Prednisone with strict instructions to taper one mg. a month going forward until I am off of steroids. My rheumatologist has only prescribed one last supply of 5’s and a limited supply of 1’s after this.
So in addition to feeling like I will go crazy with every second day being spent on my couch resting, I now am being treated like I am having weekly prednisone parties and should feel guilty that I am still on 5mg. at the 2 year mark since common literature states that PMR burns itself out by around 2 years. Every day has been a guessing game as to what level of medication to take, what pain killers can I supplement with and what invitations can I accept from friends and family that I will actually be able to attend?
Like you I apologize for this rant but some days you really wish the medical professionals you rely on to help you had a clue when you are told to wean yourself off of Prednisone in a very short timeline cold turkey and insist you won’t have any repercussions or side effects in doing so!!
I feel like my life is being completely dictated by PMR and I am just a innocent bystander.
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