my whole body feels like it’s being attacked . Is this normal ? I’m new to PMR ! I’m fatigued all the time . Feel like I’m not alive inside !
By nature I’m busy , always on the go ! Even though I’m 62 . I feel like I’ve aged over night with this auto immune disease.
PMR is life changing. The mantra for PMR is rest, rest, rest. Remember you have an illness. Fatigue is one of the symptoms of auto-immune diseases.
Hi and welcome,
Maybe have a look at this link for a bit more info on what’s ahead -
healthunlocked.com/pmrgcauk...
- it is difficult to get your head around we all know that, but you do need to realise you have a serious illness and treat yourself accordingly - especially learning to pace yourself… that may help with fatigue
But more info on your bio would be nice - date of diagnosis, starting dose, how you have tapered, what particular issues you have..other than fatigue.
Thank you so much ! Appreciate your advice .
Dear Ted, yes, basically, totally ravage you. Don't let anyone tell you it's benign! Now i'm perfectly controlled on Pred. State I was at onset in my profile.
Exactly what Helen Twohig used as the title of her study on patient experiences
eprints.whiterose.ac.uk/85252/
sciencedirect.com/science/a...
You can't push through it - as with ME/CFS, if you do too much then you go backwards. You can't fight it - PMR will always win.
Acceptance and accommodation are the way to go - that isn't giving in, it is being realistic.
Thank you for that . Very much appreciated.
So true PMRpro… been a victim of ‘doing too much yesterday and today’ with a big dollop of stress from workmen … have been horizontal since afternoon! Acceptance is key …but it’s so frustrating when your head wants to do stuff and system screams at you NO NO NO!
I know it’s so annoying ! I have stuff that needs doing & weeks later still waiting to get more energy to achieve these chores !
Don’t worry -they will still be there when you are able to do them .., and it’s probably only you that are worrying about them,
Life’s too short to get hung up on chores…,
True 😊
I’m glad that I’m not alone in that! It can just wait! 😂
Yea, it can feel like your life as you knew it has ended. It’s not always like that. Listen to your body and you’ll get there in the end. I agree with all the other replies.
Thank you 😊
What is your Prednisone dose? On a dose of 20 mgs I felt like a new person. The depression lifted, I was euphoric to finally have a diagnosis, I could get out of a chair unaided, I could lift my arms above my head. The pain and stiffness had literally gone.Pred is all we have and it is a wonderful drug when you are feeling totally broken. The trick is not to respond too enthusiastically to the fake energy, you are still ill and you need to take great care and as everyone is telling you rest rest rest. Educate family and friends as I am, years on, currently still trying to do. They have had enough and so have I. You really have to limit what you are able to do. This is hard for people to grasp, pacing your activities, disappearing for a nap, being quiet and quite antisocial (me). Acceptance is key, yours and those you love. Eat and drink healthy things, only. 🪻
Great reply and comments ! Thank you so much . I was put initially put on 15mg of pred a day , when Gp suspected PMR . Within 24 hrs of taking it the symptoms vanished , that was in apr/may . Then I got symptoms of GCA . In hospital and given iv steroids . Then oral pred 40mg a day . I’m being weaned off at the moment . I could cry reading your response , because it’s exactly true with me! I disappear sleep for hours , unsociable - couldn’t make a wedding yesterday ! And I bought a lovely outfit. I have started to pace myself and do little at a time , which helps . What I can’t do , will have to wait . I’m finding life with PMR is unpredictable and can’t really plan anything !
My children are all grown up , 3 sons & a daughter . They are so sweet and understand I can’t do much and help where they can .
“Life with PMR is so unpredictable and you can’t plan anything”. Sadly you are so right, Ted, and I do find that I PLAN things in my head which seem perfectly do-able and then my brain and my body let me down. But as you come to terms with this condition and the medication does its thing you learn to cope with achieving your plans in other ways.
Family can be funny about PMR because there is so little to see, and because they don’t see a change in your appearance they assume all is well, forgetting that it is only well because you have managed your medication and your expectation. You have probably always been a superwoman, juggling all the balls as women do, for now you need to drop a few balls and let the young people pick them up. High dose pred will make you feel invincible, but don’t be deceived, you need to look after yourself and let your family look after you rather than you looking after them. Best wishes, Chrissie
A group from HU have recently created a Gardening group and I find just looking at the photos of lovely plants and people’s gardens really cheers me up for the day. facebook.com/groups/6288051...
great idea , I’ve been planting shrubs . Will post some 🌻🌸
Yes, suddenly 100 overnight is about it. Pred helps enormously. I found, and find when I reduce my pred, the mental side of the fatigue is almost worst ... I lose all interest, all engagement with life, and DONT REALISE I'M DOING IT. My head is just switched off.
I remember saying I felt so unwell I didn't know who I was anymore,I was so fatigued .
I think I found the most difficult part was the lack of enthusiasm and interest in anything. Everything became an effort. All through my life I had, what I call ‘burning interests’. That went overnight and it has taken time to have that energy of thought again. What with the balance of pred and ai. I think I could have managed everything so much better and the best thing you have done is join this site. Good luck to you. And I guess on the scale of things it is not so bad. I have close friends with dementia and Parkinson.
Love Maine Coon cats!
Really understand! I always have projects on the go ! Well did until recent couple years .
Then diagnosed in April this year with pmr .
Now no energy , enthusiasm or interest I. The things I so enjoyed .
Anyway I thought can’t stand this , so I’m knitting my great nephew a Spider-Man jumper ! But can only do a little at a time , as arms and shoulders get painful.
That’s the repetitive action - and yes only knit for short time. But as you get your PMR under better control it should improve.
oh yes my Maine Coon is named Ted ! He’s lovely
Mine is called Minnie. Minnie the Minx, Minnie the Moocher, Minnie the Mouser. She's all three. They're such characters aren't they?
How funny. I’m knitting now! Most turn out a bit odd with one sleeve longer than the other! But it is a good mix of short term concentration and creativity which can be put down and picked up depending on energy! Spider-Man jumper is serious ability!
Hi. I must be one of the 'lucky' ones. Although I had pain and felt a little more tired than usual I'm on the whole doing everything I did before. I think it affects everyone differently. If you are on steroids that should help but getting the dose right is the key. I am on a step down regime and had to increase when I got down to 6mg as I had pain again. I know others feel differently but try to remain as positive as you can. I feel good on the whole and I am perimenopausal too! Try to remain active but get plenty of rest too. It can disappear completely so fingers crossed for you.
'Ted', it does go eventually ! I 've had GCA (2019) and PMR (2020 -?) The high dose of Pred for GCA gave me almost all the side effects on the slip in the packet - except being psychotic. I suffered from anxiety, insomnia, moon face, loss of hair, hairy face etc. I slept for hours in afternoon, felt spaced out most of the day if not exhausted. It was a terrible shock that my active life seemed over but as the Pred dose decreased, so I felt better and my GCA symptoms never returned. Then I got PMR and could hardly move so back onto a higher Pred dose, I found the right dose fairly quickly - life began again, but my hips gave in and I ended in a wheel chair. Two hip replacements later, I'm on 4mg Pred and reducing very, very, slowly. I have absolutely no symptoms of either GCA or PMR, have spent hours getting the garden back, playing with my my grand children, walking in Devon on the lovely Coastal Path. I am 5 years older and in your 70's that's a big chunk, but I've learnt to respect my body, its ability to heal, to take its own time. I listen to it now, take a nap every day, accept what time has given me in the past. Journey hopefully, 'Ted'.
Hi
Thank you for your reply ! Sorry to hear about your experience with this illness ! Yes I’ve got moon Face and those symptoms you mentioned. Think I’ll be in a wheelchair soon ! My legs and hips aren’t too good . Have buckled and given way on occasions. Also legs & feet feel numb , walk with a cane for balance and safety . Which I will mention this week at hospital appointments with orthopaedics and vascular team .
Afraid that sounds normal to me Ted. The ‘wasted’ years ahead are on my mind too as a relative newbie and younger sufferer. That euphoria of initial steroid response is now offset by debilitating side effects but time is what we have been given and for that I am grateful. Not doing enough can also make fatigue feel worse - it’s important to keep fighting whilst being sensible at the same time !
In the beginning I found having PMR very difficult. It came on suddenly overnight and at first I just thought I’d done too much at the gym. After 5 months of no diagnosis I was in shock and feeling a whole range of emotions due to the increasing chronic pain and stiffness.
A diagnosis of PMR brought some mental relief (at least it wasn’t something more dire), but it was taking pred that was a true game changer for me. I felt physically better but sometimes learned the hard way about my new physical limitations.
As PMRPro has said acceptance and accommodation are the way to go. Living with PMR has gotten easier over time with adjustments in my lifestyle. Yes I live with uncertainty about how my body will feel day-to-day, but that hasn’t stopped me from making plans and living life, albeit with flexibility and patience. Recently I missed my twin grandson’s 3rd birthday party and although I was disappointed I knew that when I was feeling better I would see them and celebrate on my terms.
Learning what you can control, and what you can’t also really helps. I’ve learned I can’t control my PMR disease activity, if/when it will go into remission. What I can control is how much rest I get, what I eat, how active I am, who I get support from, who I share my diagnosis with, etc. Those things help combat feelings of helplessness. I also chose to talk with my therapist in the early months which proved helpful as I could let out all my feelings and fears in a genuine, authentic way with someone I trusted without feeling I was burdening someone with my health woes.
Of note, we too have a Maine Coon named Schenker (a tri-pod with only 3 legs), who continues to provide comfort and entertainment.
Please know you are not alone and we are so glad you found us via this forum. We “get it” more than others who don’t have PMR/GCA, and we are happy to share our wisdom.
Thank you so much . Really appreciate your comments here . Yes Maine Coons are such a comfort ! I wouldn’t be without Ted ! He cheers me up . Especially on days that’s are gloomy with PMR .
All of what everyone else has said. I was a very healthy 71.5 when PMR hit me in Jan. 2022 and 5 months prior undiagnosed. Now feeling my age. It is something to be fully embraced and almost a lifestyle. A roller-coaster ride for sure. Don't fight it. Listen to your body. Make it a habit to rest daily. Do one thing at a time even if it's from a sitting position. Try to keep moving, though don't overdo because your body will let you know it. Eat low carb. Don't get discouraged if your appearance changes. Have patience with yourself. Stay on your Pred. Stick with this forum because the docs know pitifully little about PMR/GCA.
All the best with this journey my friend ~ Deb
Thank you so much Deb
Great 👍🏼 help . We certainly need need , docs don’t know and understand! I’m learning to listen to my body & to say ‘No’ to people who want or need my help , as it’s a challenge looking after ourselves .
Take care
Thanks for posting this. I don't feel quite so alone now. I am newish to the group also and I am still finding it difficult to accept how utterly crap I feel most of the time. The fatigue kills me and I cry a lot of the time because I feel too fatigued and exhausted to do anything that might cheer me up.
That’s Okay ‘Gimme’
It’s a real game changer eh ?
And learning we can’t do things we use to or If we can , at a lot slower pace !
Yes it’s the energy levels that are so rubbish ! I need to get on and do things !!! But I’m beginning to take it easy and accept this disease . I use to knit and sew a lot . But not in recent couple years . I loved my hobbies & knitted for charity. So I’d thought I’d cheer myself up and set a couple of things to knit . Taking my time , even if it’ll take ages .
Hope you will be okay
Take care & all the best from Lesley
Thank you, hope you also find some relief soon. I'm finding this PMR journey a very lonely one.
sorry you are feeling like you are - you shouldn’t really be feeling so bad if your PMR is under control -and you can help yourself a bit with the fatigue.
Maybe have a look at this link -and in particular one of the links within it on pacing yourself -
healthunlocked.com/pmrgcauk...
If you have specific issues please ask, someone will help -and a bit more info about yourself on your bio would help -for example when diagnosed, starting dose, dose now etc and any other health issues you may have.
Thank you for taking the time to reply. Ha, well there are two possibilities that come to mind, first that my PMR is not controlled, or second, that the PMR is only part of the story, and I have suspected that from the beginning. It is emerging that there might also be a strong dietary element to my symptoms, though my pattern is fairly classic.
Thank you for the link. I was reading your article this morning and found it interesting. It kind of answered one of my questions about conflicting information. I am supposing that some of it is outdated. I'm not sure about the pacing though. If I paced myself any more than I am now, I would stay in bed all day. I struggle to do more than the absolute basics to stay alive. if I am washed and dressed before 2.00 pm, that is a really good day for me. I've just had a week away and only managed to leave the holiday cottage twice whilst I was there. I guess that holidays are going to be off the menu from now on.
I thought I had filled out my profile, But I noticed now that there is a bit that I missed and I will fill it out when I am feeling that I have the mental energy. I think it might be a bit of a saga though. It took a very young newly qualified Asian doctor to put it all together in November. I have had the PMR symptoms for almost 20 years on and off with repeated visits to the GP. I suspect that I was dismissed as a woman of "a certain age" and therefore menopausal and if PMR even crossed their minds, considered too young. Shocking that those attitudes still persist in the medical fraternity.
I don't want to hijack the OP's conversation, so I will update the bio and pose my own question, when I am feeling up to it. The last few days I have been feeling even more overwhelmed by life than ever.
Yrs you have filled in some of your profile /but the bio bit is where you can give a bit more info about yourself which is useful to other members when we reply to you.
When you feel up to it, if you select Update Profile you can go down past User Info to Bio -and edit that.
The fact that you have had PMR like symptoms for so long is not good news, so you may well be correct in that there are other things going on.
Just come back as and when you feel able -and hopefully we can provide help and support…🌸
Prednisone: The Steroid That Can Make You Feel Crazy
Can you just remind me learned PMR Comrades 
Can you develop PMR months after being diagnosed with GCA 
Some vacation, thank you PMR
You can recover 
