Good morning. In addition to 'suspected' PMR I live with chronic fatigue syndrome which also flares up under stress. I am quite bad at listening or taking notice of advice, thinking I know best (I don't). I was an only child raised with material needs met but very little emotional input or interaction with others. As a result I am not very good at taking advice as my parents' advice was rules and regulations. I see so much good advice here that I need to listen to, having got myself to a point where I feel quite wretched this morning after failing physically to get to the local shop and having to come back without getting any milk. I don't want to have a pity party but a virtual hug would be very welcome.
Virtual hug needed : Good morning. In addition to... - PMRGCAuk
Virtual hug needed
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Groggrim
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Hugs aplenty here!! 🤗🤗🤗🤗
I don't think I have ever failed physically to get to a shop having set out - mainly because I have no compunction about getting the car out if I am feeling ropey before I leave! We have aids available to to us for those occasions - there is no shame in taking advantage of them when the distance to the shop is greater than the energy available. Especially for milk - when a cup of tea is what will make it look better.
Thanks, I no longer drive and the shop is only at the end of an alleyway opposite our house. That's what made it so depressing not being able to get to the end of an alleyway 🙁
Oh dear - yes, see the problem. Is there no-one around who could be delegated?
Of course, hubby already said he'd go (and ended up going anyway). But I just can't (or won't) give in 🙄
It is right not to give in - but learn to pick your battles!!!! You will be able to go tomorrow, or the day after. And there are things YOU can do in the house to give him the space to fetch the milk. Marriage is a joint enterprise and you can swap duties when things go downhill. You know stress does neither illness any good - and you get a double dose of fatigue anyway.
Absolutely, he already reminded me that I went to the shop very successfully on Tuesday. Since this illness I seem to see things as 'all or nothing'. I have lost the ability to rationalise things
All I hear is my mother's voice telling me to 'stop feeling sorry for yourself'. I'll be ok tomorrow. Thanks for listening
I recognize that voice all too well. I was taught illness was a weakness or self-indulgent and most likely could've been prevented if I'd been more careful. This was subsequently reinforced by my being in relationship's with men who exploited that insecurity. It's only as I've become older I've realised how skewed and damaging that has been. And how It was a problem with the person who held that belief and not me. It still nags at me but I can challenge it now. It's really depressing with CFS when exhaustion hits like a train and you're even too exhausted to hold a conversation or walk a few yards. Frightening too. But take to your bed, and make it a haven. I've a fluffy duvet, plush pillows. I listen to music and podcasts, have hot chocolate and buttered toast. And sleep, and sleep until my strength regains. I hope your exhaustion passes soon, Be kind to yourself.🤗🤞
I hear you. My 1st yr with pmr I could not say no. It took me a yr but I learned to say no I can't do it.No was not a word allowed growing up. You must always try. Did well in learning things and a work ethic but doesn't work when seriously ill.
Big hugs
So sorry that you are struggling today. One thing I have learnt the hard way is that nothing stays the same- everything is always changing. As a “survivor” of nearly 13 years with PMR, despite many ups and downs ( more downs!), I am still here and on holiday in Sri Lanka! Try to stay hopeful 🤗and life will go on.
Absolutely loved Sri Lanka when we holidayed there many years ago. Such lovely people, and likewise food.
Enjoy.
DorsetLadyPMRGCAuk volunteer
Hugs a plenty on their way 🤗🤗🤗… and you haven’t failed, you just struggled to get there… but other days you have done it, and in future will do it with no problem.
Today is just today, tomorrow it will be yesterday and forgotten. 🌸
Not failing
Thank you very much x
🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂🫂 you are doing amazingly well I think (for what that’s worth)X
Some days staying in bed with a good book seems the best option! hope you feel better soon.
🫂🫂🫂Lots of hugs - hope it helps to know people on here want to support and send their best wishes if that helps in some small way. Severe fatigue was the major symptom of my illness so I know what that feels like when you haven’t got the energy to walk even a few yards. 🤞 Pred seems to have solved the fatigue issues for me. Fortunately it never made me feel down but I was always sure to congratulate myself for the times I could do a bit more. Be kind to yourself - we face so many challenges and can only do our best. ❤️🩹
Thank you for the positive encouragement and hugs x
Hugs and bigger hugs to you❤️We all need them some days.Iam the same way that I will take on too much trying to help family.Sometimes it can make me tired.I was raised with 6 sibling s and was not shown any affection.So now I love hard with my family.Knowing that their love is strong and true.Hang in there !!!
Hugs aplenty dear fellow fatigue friend!
First of all congratulations for your honesty! The battle most of all I find is the emotional and mental acceptance of the way things are and to have the audacity to say with hope, this is now and tomorrow may be better!
Love all the ideas others have put forward. Of course you will swiftly see your own great strategies that will fit your unique circumstances.
The strong echoes of our parents live on but we can pick and choose what serves us well and those that don’t fit our current circumstances. Our parents hopefully did their best to pass on what they thought would serve us well in life, but little could they foresee the exact circumstances you are now faced with. Please accept our love and compassion and know that you deserve it! Perhaps finding your own strength to have a new message in your head and heart will be a rare gift from the challenges you live with? Much admiration to you!!!
Having experienced PMR, and my step daughter has CFS, I know a bit about both. With CFS, you have to pace yourself, even when you feel better. So I hope you access a CFS forum too. Hugs
Hi Groggrim, lots of hugs from me, I hope that you are feeling a little better soon. What you have is awful. Divert your frustration from yourself to the conditions that you have. They are the real bad guys. Ask yourself "What would my husband (and others who care about me) think if they knew how much I am suffering and didn't tell them or ask for help?" You know that they would do anything to help. Take care lovely lady. Well done for reaching out.
🫂🤗🫂 - sending plenty. We all need self care so maybe think of some things today that can fulfill that. Also think what you might say to someone else in your situation and apply that to yourself. I'm sure you wouldn't be your mother. On a better day you'll manage it. 🫂🤗🫂
A bid virtual hug for you Groggrim 🌹I’ve had Fibromyalgia for 28 years ….. similar to Chronic Fatigue and PMR for a few years , and I am still here !
It took me a few months to get my head around it , but eventually I accepted that I would have to follow a new path in life . I had to concentrate on myself , and do only the things I could cope with . I hope you too will be able to accept your new course in life . That is the key 😘
Red
Here's a really huge virtual hug!!!And I know as someone with Fibromyalgia and CRP, and with a daughter with M.E/ CFS that a virtual hug is something you need regularly, even if you have someone at hand to hug you because a real hug is often just too painful to receive.
Most of us have felt like you in many ways at the beginning of the PMR journey. We all found it hard to stop our regular routine or slow down as much as we should and paid the price. Most of us felt, or feel Fatigue that becomes Chronic creep in from time to time.
But unless you experience , M.E/ CFS , most people don't realise just how different to normal Fatigue it is .
I've written posts in the past about the difference between being Over Tired and having Fatigue. In those cases with Fatigue that is Chronic , we experience heavy pain , brain fog , feeling of walking through concrete and the urge to sleep , so similar feelings to what people with CFS have everyday.
But the difference is that with the chronic Fatigue most experience with PMR symptoms can be relieved and reversed slowly by keeping gently active , even if at first this gentle activity may be uncomfortable and painful, with M.E/ CFS if you try to push through the heavy curtain of Fatigue you flare up the conditions and make it worse.
Pushing through even at a very low intensity just isn't an option which can make all other health issues you struggle with harder , because unlike with M.E/ CFS, most other health problems require a balance of daily gentle physical exercise and better paced daily activity and get worse without it , so controlling M.E/ CFS alongside something like PMR becomes even harder.
I've seen my daughter struggle with this contradiction between health problems since she was diagnosed with M.E/ CFS on top of her other health issues. Trying to find the balance between getting a gentle active routine to help her pain related problems without flaring up the M.E/ CFS has been incredibly hard,
We both struggle from types of Fatigue , but were I know slowly managing to walk to the corner shop will help me get rid off those awful fatigue symptoms and it will get easier by keeping some movement in my day , she doesn't have the same option so walking to the shop will make it worse.
A walk to the shop during a CFS flare will cause the flare to get worse and might force a day in bed, where as a slow walk to the corner with PMR and Fatigue is what's more likely to help you stay out of bed . That's the big distinction and the trouble you need to juggle with.
Even driving to the shop isn't an option , as most people with M.E/ CFS can't cope with the pain of driving or concentrate enough behind the wheel on a flare up day . Driving can be worse than walking.
I added this description for other readers , as sadly you live with it, you understand this, but I wanted to share with others whom may not be aware of the difference between our Fatigue and M.E/ CFS or just what our members with both PMR / GCA and CFS have to battle with on top of the usual ills.
All of our advice about Pacing Yourself and accepting the "New Normal" changes you must make to daily activity to hold back flares of PMR is even more important to do if you already have M.E/ CFS . You may have already thought life was slow but it will require more slowness and rest to prevent one issue from flaring the other.
One thing that helped turn things around for my daughter was that the Chronic Pain Clinics and M.E/ CFS across the UK ( not just in England for once!) have begun new 8-12 week help programmes which you can be referred to via your GP. Consultant ( for any health issue) or in some cases even self refer too.
These are open and useful for anyone with a condition that causes Chronic Pain and types of Fatigue , so are good if you have long term PMR too.
The difference in the Chronic Pain Course is that you begin with an consultation with three professionals, a Specialist Pain Consultant, A Rheumatology Physiotherapist and a Clinical Psychologist,
After which you join a group and work together to learn how to cope with long term pain and fatigue , both physically and mentally , including being slowly taught his to exercise between flares and how to plan more restful schedules. The CBT section helps people to learn breathing techniques, and ways to retrain your brain to remain positive even during mental fatigue.
So as well as a hug , I thought I'd include this , so if you haven't been offered it , and when you feel ready, you could find one in your area and give it a try. It may just help you cope with the worst humps of your illnesses as they bash heads together,
One thing I will say though , is give yourself a pat on the back , because it's not getting to the shop that counts with M.E/ CFS , it's the fact that you tried at all which is a big step of success. Hope you found another way to get some milk as a reward though, take it slow and take care , Bee
Fabulous reply, thank you for explaining all those differences.
Let's hope there is a Chronic Pain Clinic near for Groggrim to attend. It may be life changing.
I agree there are differences between CFS and PMR fatigue but I have also had both and there were many occurrences with PMR where I hit a brick wall of fatigue while doing something that was just the same as the fatigue I had with CFS. The greater problem was that I had been able to set off feeling able to do it but if it was a no going back action, it was a sit down or fall down moment and there had been no warning even a few mins earlier. I agree that a long enough rest allowed a stagger to get home - but it meant a lot of knowing limits and planning ahead.
There is so much pacing and planning and learning what your limits are with each type of Fatigue , totally agree.As you say it's surprising how one moment you feel up to something in mind but as you start to do it in body the Fatigue symptoms whack you again without warning.
It takes a long time to learn your individual red flags and listen to your body's clues about it's limits. And your body will often send you a curve ball and decide a pattern that work for ages just won't do that day.
The Fatigue symptoms are definitely identical between Fatigue from another illness that is chronic, and M.E/ CFS as a fatigue health condition in its own right.
The differences are in how you can act to manage it.
They sadly require opposite forms of therapy , which I've seen, from watching my daughter can be really complicated to get a balance between.
All I can say is I never thought I'd be grateful for having Chronic Fatigue as part of my other illnesses , until I saw what M.E/ Chronic Fatigue Syndrome prevents you from doing to make pain and fatigue symptoms better.
My daughter had another INOCA episode a few weeks ago , and the way it's caused her CFS to flare is heartbreaking. She needs to move to help all of her other illnesses but she can't .
Sending you best wishes and hope tomorrow is a better day. I'm a fairly mild case of PMR but there are still some days when everything just seems too much. We just have to admit temporary, but not permanent, defeat on those days! Sun is actually shining where I am and the birds are singing.
Fairly regularly I notice when doing my washing that all it seems to be is nightshirts and bed socks and dressing gown which tells me I have spent more time in bed.Nothing wrong in that if that is what my body needs.
Tomorrow is always a new day with fresh hope that things will be better.
Big hugs to you from another who knows the journey been on and going on x
sending you hugs along with everyone else. One of the things I’ve had to learn is to swallow my pride. I now use sticks to walk with when necessary and also bought myself a collapsible motorbility scooter which has been a real boon. I can drive but you don’t need to be able to in order to drive a scooter. It’s great for nipping to the post box or local shops. It was also great to take on holiday to Scotland so that I didn’t miss out on walks around the lochs.
There are some quite cheap ones now and many available second hand. Mine sits in the garage most of the time but great for some occasions.
Sheila
Thanks Sheila, I had one back in 2004/5 when I was first ill with CFS. I got a bit self conscious when neighbours would stop me and ask why I was using one, so I sent it back and stopped going out. I think at the moment I wouldn't manage one because I would have to keep my arms up to drive it and I struggle to brush/wash my hair. Thanks for the thoughtful suggestion though. Maybe later in the spring 🙂
Might be worth looking at late models. I drive mine just with my hands and my arms resting either on my knees or the arm rests on the seat.
I have Nordic Walking Sticks . I needed them to help improve my stability and posture and preventing me from falling if I get dizzy from my Dysautonomia.They make a big difference in my confidence and help to improve how I breath as I walk so it helps with the exercise tolerance. My daughter, whom has M.E/ CFS , finds them invaluable as well.
I think you find success managing a long term health issue when you accept that it's not weak to use disability aids but it shows strength to accept what ever help you need. You end up improving your life quality and increase what stuff you get to do if you accept making changes and taking help.
Two Nordic Sticks as well as being better for stability and causing less pain than one stick are also used by people for exercise whom are generally healthy so you can feel less self conscious using them , people don't instantly think you've got a health problem and ask nosey questions when they see you using them.
In fact , most questions are positive and people ask where they can get some because they are so practical for walkers.
I got a reasonable pair in a nice plain black from Amazon.
Hey, I'm sending you major hugs and big thanks for being you.Love that you appreciate the advice from this beautiful forum, which you are such a valuable part of.
Aren't we so blessed!
However it's crap that we have this disease but together we can help and reach out knowing the fantastic volunteers and Ambassadors will stop us from drowning mentally and physically.
Bless us all.....Amen xox
So sorry you feel like this, it can be a very lonely feeling. I cant help about the milk but i do know how you are feeling. Sit for a while and then try again maybe ? If not i send a hug and tell you that you are not on your own. Hope things ease abit . Viv 🌹🌺🥀🏵️🌸
Hi Groggrim! I walked to the shop 100m away yesterday to get milk. Big mistake. Like others here I also have fibromyalgia (+PMRGCA). I am trying to keep active, as advised, but this is now limited to very gentle pottering around the house. I am very stubborn and independent, traits inherited from parents, which has its plus sides. But I have now resolved to ask neighbours for help with shopping, putting bins out, lifting, taking poor dog for walk. I haven't brushed my long hair for 3 months - simply too painful. It's dreadlocked and needs cutting off. So I am sending you many virtual hugs. It'll soon be springtime and we'll all feel better 🤗🤗
I have nothing to add to all this wonderful outpouring of support except how it illustrates that none of us are alone and can identify with how you are feeling. Sending another virtual hug to add to the rest. 🤗
I love the way this has turned into a group hug. I hope everyone has a good day today x
Big hugs to you Groggrim. I know that feeling of “failure to launch” which leaves me in my dressing gown till lunchtime several times a week. Luckily I have two dogs which love my lap and pin me to the sofa but also love their daily walk which finally gets me out.
One of the huge problems with PMR and CFS is that it is not visible to other people who seem to think if they see us out and about we are “better”. But here we understand that and know that it has taken huge reserves of energy to be out and about. If using a scooter gives you the freedom to go out then embrace it and use it as a reason to explain PMR and fatigue to your doubting neighbours. But first and foremost Look after yourself xx
my heart goes out to you, i know what you mean. Here’s a heartfelt hug. Please be as kind to yourself as you can manage xx
Can I have a hug as well please. On top of the PMR I have a bad back which meant I couldn’t fly to Florida in January & Friday the hospital found I have an inflamed bladder.! My cup runneth over!
🤗
As long as it is just a cup that runs over ...
😳
🫂🫂🫂🫂lots of hugs. What bad luck. Hope you are better soon❤️🩹
Your cup runneth over literally in a way 😆😆😆I'm so sorry , here's a big hug or two.
It's so depressing when you have to cancel something, especially a holiday , but just try to focus on the positive, you weren't ready to holiday now but you will improve and get there in the end.
Take care and keep warm , Bee
🤗🤗🤗🤗 as many as you like
🫂🫂🫂🫂🫂🫂🫂
Dear Groggrim,
You’re welcome to an enormous hug. If there are good days and bad days, do what you can on a good day and relax on a bad one. Don’t criticise yourself, it only makes things worse and is unnecessary. I try to remember this ! Don’t forget to praise yourself for the things you do well. Nobody is perfect. Illness doesn’t help, but hopefully you will have better times. When it’s a bad day relax and just go with the flow. (Advice from a friend). I try to remember this 👀 and it’s a good philosophy.
Everybody feels down sometimes for a number of reasons, you are not alone, you’ll be OK. It sounds as if you have loving people around you.
To quote George Harrison ....All Things Must Pass....and the way you feel today won't last forever. Many of us on this forum in UK will have been brought up by parents who grew up pre NHS when people often "just had to get on with it" but that doesn't mean you punish yourself...more pace yourself 🤗
Bless you sending you a huge virtual hug and thinking of you. I’m sure this took a lot for you to post this. Take care xx
Same. My Mum always made me feel guilty when I got sick. Tomorrow or Tuesday, is another day and you'll make the trip to the store. Today rest. Spoil yourself. The "other half" wants to help....let him. It will be a blessing for both of you. Soft hugs to you. 🫂
here is a virtual hug. Childhood traumas of lack of warmth and emotional regulation certainly come up for me in later life. So pleased you reached out for a virtual hug !! that's huge and here one for you from me - BIG HUG xx ps as people have said - the odd 'deliveroo' or asking a neighbour won't hurt. and you tried too - which is huge xx
viral hugs 🤗🤗🤗 sent to you ❤️
Oh what a lovely community this is. Sending a huge 🫂 to you and Claremont2023 .
Did myself a mischief walking to the postbox last week (100 m). One of those days. We are all in it one way or another. Thank you for reaching out, good call. X
Thank you.
Sending you a big virtual hugs 🫂🫂🫂. Today was rubbish for you but tomorrow’s another day and will be better, hang in there !🌸
I know how you feel. One virtual hug coming your way ❤️
sending big hugs your way, think we all know how hard this PMR journey is let alone CFS alongside. We seem to be stress bunnies and very hard on ourselves hence we cannot say I need to rest!
Tomorrow is another day, rest up, be kind to yourself!
🤗🤗🤗
virtual hugs here. Harsh words spoken over us as children always run deep & even though deep down we know they aren’t true they can haunt us as adults.
From my recent experience of this illness we have to be realistic about what we can achieve some days.
I’m a farmer & was forced to sell a flock of pure bred sheep that I’d bred for 16 generations. I had to come to terms with the fact that I was unable to care for myself last year, let alone 250 sheep.
Yesterday I spent most of the day doing a simple electrical job in one of the farm sheds that I’d have completed before the morning tea break a few years ago.
After dinner last night I was so tired I crawled into bed before 8pm & slept most of the night.
Despite me really not liking this I’ve had to adjust my expectations accordingly.
So don’t be hard on yourself & accept help when people with good intentions offer it.
If accusing voices from the past try to tell you you’re lazy, dismiss them for the lies they are. 👍
tons of hugs 💕
Hello Dear Groggrim. Living in the US I receive these notices behind many other forum members, but I imagine belated hugs will still be welcome. I'm sending you many big ones. 🤗🤗🤗♥️
Well, that sounds grim! Sending hug. on and another.
I know the lack of emotional input well.
I hope you have some friends you can call on to bring provisions on those occasions when you can't. I know how hard it can be to ask for help and i know that there are some people who love to help.
❤️
Lots of virtual hugs coming your way🙅♀️🙅♀️🙅🏻♀️🙅🏻♀️🙅🏻♀️🙅🏻♀️ from myself the lovely people on this site take care.❤❤
Virtual hugs incoming!!! 🫂🫂🫂It's so hard knowing when to rest and how much movement is needed to help the pmr without making the other illness worse...
I have long covid and pmr so totally understand needing to do something but not being able to do it. Count your spoons,(spoon theory if you don't know what that is please check it out, it's really helpful) can you get milk delivered?
Rest is definitely needed today and possible for a few days. Do you have any apps to track your energy? Sometimes I think I'm ok to push through but then see I'm at a 2 on visible and actually listen to the app and rest, whereas if I just listen to my body I don't listen and end up worse.. If it's a 3 (it's never 4 or 5 ) it's back to normal with lots of rest in-between.
I have the free version of visible which tells me I'm not doing great today so bed day it is.
More hugs.
The Spoon Theory link is in DL's welcome post as part of a link about Fatigue and Pacing.
Many virtual hugs sent to you🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰---as needed 😀----
I would like to encourage you to gently get in touch with your inner wisdom--- it is IN you--- waiting for you to listen----
nothing wrong with listening to others--- this what I used to do all the time---- over time I found that listening to my inner voice is very empowering---- it gives me a chance to know myself and my needs--- trusting that I will do what is right for me when I am ready and in my own time.
Many blessings to you as you hear your inner wisdom guiding you to healing and peace
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