What I wouldn't give to wake up on just one morning feeling like my old self. Full of energy and ready for a long days work,cycling the hills, working on the barns or making something . Not to have this constant pain, stiffness around the top of the pelvic girdle and the curved spine losing me 3" of height from contracting muscle. Down to 8mg pred. so looking forward soon to another round of uncertainty. What joy eh!!! 
Feeling Normal?: What I wouldn't give to wake up on... - PMRGCAuk
Feeling Normal?
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cycli
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I hear you completely! One day.🌈
one day indeed. Struggle on eh!!
Wouldn’t we all?!!💃🕺
If only people realised what these invisible conditions wring out of us all.
No they don’t, and in all honesty I doubt we did either, until we succumbed ourselves. It’s not being uncaring, it’s due to being unaware.
It’s the “but you look fine” syndrome…
So right and making people more aware can be so tedious and misunderstood.
Yes it can… so you have to decide - can I be bothered to explain, or just give a noncommittal answer if people ask or comment. 🤔
It's not as if you are asking for sympathy, just trying to explain what is almost impossible without experiencing it.
No I know you’re not seeking sympathy, but explaining to someone who can’t see anything is very difficult. A broken leg or a black eye they get, an invisible illness they don’t… fact of life!
Had to smile. Nearest neighbour and good friend, Yorkshire through and through, said I was looking much better as my face didn't look so puffy. I've been trying to lose weight and it must have shown in my cushing syndrome face. Sadly not around tummy bulge. How I hate the way I look. Hardly had an ounce of fat when cycling.
I hear you!!!! I’m in the exact same boat!!! So frustrating!
so many of us all feeling the same frustrations
No it is not sympathy we want, just reassurance that they don't think us wimps!!
We're none of us wimps but people can misinterpret our careful actions thinking we are just being overcautious. We are wary in case a simple knock tears skin, easily done, or we seriously bruise. Recovering from these takes an effort from our bodies which prior to pred hardly showed or needed repair. Our actions make people think we are scared to live and just get on making us wimps. It's something we have to accept and live with because trying to explain to people what it is all about isn't worth the effort.
I feel your pain! but you ARE heading down. How long has it all been. I am 2 weeks away from 6 years on prednisone. I thought it would be 2 tops. ugh. BUT I am still here and doing what I can. Hoping you are feeling better and better! It IS so frustrating. You may not feel like your old self again but your NEW self is a person to be reckoned with strong and fighting !!!
cheers. It's been 2.25yrs so far but you are right. The pred is reducing.
For what it’s worth, you’ve got a soulmate here…I suspect you’ve got a lot of soulmates on this forum. Just how we got here is a mystery to me, my doc says pmr “burns itself out.” I’m ready for the pail of water, been 7+ years, much to my and his chagrin. In the meantime, sending you a gentle hug from across the pond, as they say,
hug returned.7 yrs is such a bind.
We must have the same doctor 😜. Mine told me the same thing in early 2019!
It does for the vast majority of people…but nobody can tell you when….and 4 years is not that long - have patience.
However for Twopies 7 years is a bit longer than ‘expected’, but as we’ll know there’s a few good people on here who exceed that!
I'm really not complaining. I just think it's "funny" to hear that a lot of doctors (including mine) say it will burn itself out in 18 months or so and we actually believe them ......until we find out the hard way that those are the lucky ones. I'm down to 3 1/2 mg so I'm thrilled about that and I'm praying that I will make it all the way this time.
You will make it -but in PMR’s time ..and many doctors just quote what’s in the majority of the guidelines-and many of them are out of date!
Some enlightened Rheumy/GPs know it lasts longer -but they are often overridden by outdated information. Which obviously doesn’t help the patient…
Had an email from my Rheumy today with observations on recent tests and invite for FtF. There are some good ones.
Yes there are… and probably more than we are aware of, glad you’ve got one of them.
I've learned more from this group than I ever have from my two rheumatologists. I just wish I had found this site sooner and maybe I could have avoided the yo-yo scenario. I've learned that PMR is the boss and not the doctor. I've been taking Actemra for almost a year now so that has helped me reduce prednisone.
When I hit 5 mg of prednisone, I told the rheumy that I would only drop prednisone by 1/2 mg every 4-6 weeks (not 1mg every 4 weeks like he wanted me to). He very reluctantly agreed.
I do struggle with AI with each drop for the first week or two and then it improves some, but low energy is always there. I am willing to stretch it out to 6-8 weeks or longer at any time if I feel it's necessary, depending on how I feel. I figure that may be necessary especially during the holiday season. One day at a time.
BTW, a big thank you to all of the very helpful and very knowledgeable people on this list!!!!
Glad we have helped…why we are here… and agree the lower you are on Pred, the slower the better for many reasons… good luck.
DorsetLadyPMRGCAuk volunteer
You will one day…. 😊
can but hope.
Keep hoping. I know it’s not the same but would you manage / enjoy an electric bike ?
can't see myself buying one as it doesn't make you use your muscles as well, but may become inevitable. Long way off though unfortunately either way.
No you don’t use muscles as much…but you only need the ‘electrical assistance’ when it gets too tough.. might be worth it… just to get out and about ..
Your speaking to someone who had 13 bikes. Sold a few, loaned out my carbon road but still have 8. Don't think the wife would like me to spend 2000plus on another😂
Yes but this one’s slightly different, and if it gets you out of her hair for a while….she might agree….🤣😂
maybe, watch this space.
on a technical note, with the correct gear set up there is no need for powered assistance. What electric bikes allow is keeping up with colleagues who can cycle faster. If speed isn't a requisite then any hill can be ridden unaided.
Still depends on the state of your muscles.
It does maintain other parts of the anatomy! A man in Germany was on the waiting list for a heart transplant because of advancing heart failure. He tried an electric bike and found he could use it OK. After a year his heart failure was so improved he was taken off the transplant list.
It means even very depleted muscles can be exercised under lower and then increasing load. Don't dismiss it - it may be the way to get back to a "real" bike, Just like using a rollator is the way to keep walking and get back to less "support".
that's encouraging, however, see above.
We could start a go fund me type thing for members that would benefit from a health restoring item and simply rotate them on to other members as required. User collects, keep as found, honesty box sort of thing…. Recycling the cycle hey Cycli, what do you think?
Thinking of you and sending good wishes that an end may be in sight in the not too distant future. 🤗. Keep soldiering on .
Kind of you to say so. Shorter but still feisty :-)😂 Best wishes to you and everyone on this path.
If I had a penny for every time I have thought that I could probably afford to go private and buy a nice villa in the sun.
In fact , I woke one day in June and felt totally Normal. It shocked me so much I nearly put my hip out. Sad but true.
Made me smile Blearyeyed
I feel for you, Cycli, but is the pred not controlling your symptoms and is it right to be tapering with the condition being this bad?
You may be right. The Dr is trying to work out if the pain is bursitis, osteoarthritis, bent back and osteoporosis or something else. I've given up guessing .
You are not alone. The fatigue gets to me. And lack of stamina. And have daily question of whether knee and left shoulder pain are from flare or just age…as I reduce methylpred.
Thanks Merryfield
Lack of stamina is the perfect way to explain it!
it’s been over 15 years for me now, as I started with other problems before PMR. It would be my first, second & third wish if I could find a genie! But then too late as I’ve aged 15 years!
It's devastating isn't it Pixix. If it wasn't an aging thing before it has to be taken into account as time goes by.
6 years in for me and no crystal ball to tell me how much longer. So just decided there's only one way to deal with it all and that is don't look back to how I was previously. Look forward and make the best with this other PMR/GCA me. Big, big thanks again to everybody here: the humour, the advice the kindness. Great company on this long journey.
Nice to hear from you. Sorry you are experiencing these challenges, but it's really good you are down to 8mg. Adrenals may be fine - people have such different experiences.
You sound just like me. I’m a home remodeler, artist, potter, yogi, exercise nut and all around busy worker person. I used to go hard all day and I loved it! Now I have to pick which tasks I can manage each day because I’m wiped out by about 1pm. And I’ve got the puffy face, eyes, neck and stomach to boot! I’m finally down to 20mg from 35mg but it’s still a lot. It’s very hard for me to lose weight without doing all the cardio I used to do. So, I hear you and I’m in the same situation. Best of luck and health to you.
I feel for you Cycli, I think you need a treat to cheer you up, what would you choose that won’t hurt?
Thanks Stills. I fantasise about cycling as I used to. Maybe a publisher accepting my recent story. We'll see. This condition has spurred my writing
hope this raises a smile x
Autumnal trees
That’s amazing, cycli! Congrats!
cheers Merryfield. They'll probably say a load of tosh if anything at all
we seem to suffer because of our passions. Seems all wrong but there it is. Can't deny the results staring us in the face can we!!!
Trouble is I feel colder and older at this time of year, the transition from energising sunshine to short dark days is hard to bear, I' m sure we're meant to hibernate but have lost to ability somewhere along the long evolutionary path. SAD syndrome may be a mourning for the loss of our lovely long non-debilitating 'sleep' and it hits me every now and then BUT we're annoyingly primed to survive, and to remember our young selves.
Well, just some musing on a now completely dark evening at 5.30p.m.
8+ years after naming myself Slowdown little did I realise it was a prediction rather than a reminder to do just that...
Not much help to you Cycli, sorry .. got into rambling on mode, All the best
It is a journey for sure, unique to every individual but filled with common ground in our stories. Glad you are spurred on to write….our narratives, especially when documented and shared, validate our experience, and I believe is a healing practice. I empathize with you and hoping you can sort out the pain and get some effective treatment (and relief). Living with chronic pain certainly takes its toll on our body, mind, and spirit.
We experience loss of the life we had and eventually acceptance of the current life we are living. Life’s events are put into perspective of “before or after” the dreaded PMR/GCA.
I must admit that I miss being the grandma I could be, dancing and intimacy with my partner. Living with uncertainty and (at times) pain/stiffness has impacted me and my relationships with those around me.
We are masters of flexibility and making adjustments to adapt to our new reality. The quote below from “TheDisabledDivaBlog.com” has always resonated with me:
“Coping with a chronic illness and pain tends to involve short-term strategies that address immediate symptoms and problems. Adapting, on the other hand requires a more pronounced shift in perspective, recognizing how chronic illness and pain impact our lives on a long-term basis.”
I am ever grateful to have connected with all of the fine folks of this forum ensuring I am not alone on this journey. Thank you all!
Great response PMRCanada. I'm not fully adapted yet as that almost seems to accept not recovering. Mentally I need to keep the hope alive to regain lost muscle and stamina. That may be pie in the sky and if so I will take it and adapt. For now I still believe my body will wake up and take the course it always used to by flipping whatever switch got turned on to the off position.
And the fact that, most of us, put on weight and therefore look fuller in the face, we're always hot from the steroids, so we have rosy, round cheeks. "Dont you look WELL" is so hard to hear but I have trained myself to smile. Nobody except, other PMR's ers, understands so why bother?
Hubby says he knows where I am in a museum with stairs because he hears me huffing, puffing and groaning😵💫
😆I think we all tend to do this maybe a bit more than we should. I remember my father when he was watching me do something and when I made an effort he was grunting as if he was doing it. Very annoying then but so funny now. He didn't even realise he was doing it. Maybe we could all try a bit harder.
Good news. My cycling buddy has an electric bike which I can borrow when I am cycling again. That saves any arguments about more bikes. I've decided that however I feel I'm going to start using my turbo trainer from tomorrow, because the longer I delay the harder it will be to start again. I think I must be partially depressed and need to kick myself into action. Writing is fun and good for the brain but bad for the body.
slowly slowly
If I get any slower I'll meet myself coming back
harhar.
A bit of procrastination. starting tomorrow now. Been having issues with piles possibly. Not serious but I think the fragile skin issue is causing them to rupture. Have had bleeding last 8-10 days. Ok. Today. Seeing my GP on 20th so will discuss this along with hip x rays. Makes one a bit fed up all these ramifications.
Let's hope so Twopies. Not sure there's any solution until I stop the Pred. totally. Probably take another year for the skin to recover it's robustness. I'm either improving in patience or in training for when I'm pushing up daisies
Update. Saw GP and have to go for colonoscopy so hooray. One thing after another. Not looking forward to this. I'm going down to 7.5mg tomorrow. Slowly, slowly.
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