Haven't posted for awhile. Feeling fatigue and pain (never had such fatigue before but think that's what it's called), getting better slowly from 3rd flare in about 1 1/2 years, just added pmr as dx, sjogrens kicked up since down to 10 mg prednisone. Been on tcz for 8 months with no bad side effects. But not sure it's helping either. Haven't been able to repair left knee miniscus tear or right ankle cartilage damage from old fracture. Couldn't do surgery on these first due to high dose (80 mg) prednisone & now covid risk. MRIs showed significant multiple back issues. Gastro issues better than a year ago. Okay, my original question was going to be, "what else can I do to feel better & stronger?" Maybe just too many things to heal this 66 yr old little body. I eat properly (limited due to special diet), I walk some on treadmill but knee effects that. Haven't seen most of family for 6 months especially concerned (hopeful but sad) about our Grandson now several months into chemo & just started radiation. Maybe just needed to once again enumerate all that's going on. No easy answers in life. I'm better than I was 6 months ago and year+ ago. But somedays seem like I'm spinning tires in sand and not going anywhere. I have very good primary, rheumatologist, ophthalmologist, Physical therapist. They encourage me and say basically that we're in this with you for the long haul. What else can I do?
Tired of gca, pmr, osteoporosis, back issues - PMRGCAuk
Tired of gca, pmr, osteoporosis, back issues
I am sorry that you have the draining anxiety of your grandson’s Chemotherapy. It must undo all the good work you do for yourself. I pray that he makes a complete recovery.
I am also on Tocilizumab, I have easily dropped down from 40 mgs to 9 mgs. Like you I have swooning fatigue and my walking has deteriorated. I do not feel the definite signs that I have tapered too far. The Tocilizumab must take care of that. No recognisable pains but feel pretty viral. In fact I may have something acute. My nose is infected and my chest feels cold all the time. I want to sleep often. My family think that I should go out more, perhaps in the Peaks, to keep my muscles working. They are right. I can’t curl up in a ball forever and nether can you. Use it or lose it they say.
Yes, thanks SheffieldJane. Trying to walk on treadmill but doggone knee & ankle kick up if I do too much. Might need new brace for knee?? Our grandsons illness has certainly taken wind out of our sails. Think just a downer day for me, just need to appreciate what I have, and progress I've made. Keep on keepin on. The whole world seems so crazy right now.🤔
You’ve got that right! X
Sounds like you are dealing with multitude of health challenges. Hope you feel better and better.
Spanky, I feel so sorry for you. The stress of having your grandson going through such a health challenge must be causing you so much anxiety which is not good for our condition! I have just looked after my nearly one year old grandson today and he wasn't well - feverish and not himself but at least we could cuddle him........
But we must be thankful for small mercies and picking out from your post, you are better than you were 6 months ago and you have a good medical team. Stay with those positive thoughts and I extend my faith and my heart to your grandson.
Thank you Louisa1840. Sorry to hear your little grandson was not well. They're so precious. Once in awhile I get into a pity party with myself someimes, but it's true I'm doing more than a year ago. Best wishes to you.
Sometimes you just have to accept that this is where you are, whether you like it or not, and things may not change too much any time soon. Possibly even seeking support in the form of counselling - it is a bereavement as much as a death of a close family member.
These things happen relatively suddenly - my husband wasn't exactly athletic last year after being ill in January which lasted on and off through to May but he had recovered to a great extent. This year he was in hospital most of January and just as he should have been having rehab, along came Covid which delayed that and meant his physical condition went down even further. He can't walk more than into the village and that not alone and he needs a rollator to do so. He isn't driving. That leaves everything to me - by which time I haven't the motivation to go for the walk I know I need. After New Year I had started walking but that woke up my achilles tendonitis so I wasn't so much walking as hobbling to visit him in hospital! That calmed down over lockdown - and when I tried again it was the trochanteric bursitis that protested! I was flaring after reducing the pred to have PET-CT scan - which I don't think showed anything but I haven't had the follow-up rheumy appointment because of Covid. Having got below 10mg for the first time for a few years - now I can't even get to 10mg without fatigue that means I can't function as a carer.
Believe me - I have railed against the injustice! The change in a lifetime's vacation possibilites has meant selling our camper van, Hotels won't be an option. Even without Covid - would I get the holiday I crave this year? Last year it was only a trip to the UK - not an option this year at all. It is what it is - and it is unlikely to get much better for a long time. I'm not looking for sympathy - but wanting you to know you are not alone in the situation.
You have a support network of good healthcare professionals - work with them and accept their encouragement. They may be able to offer a bit more if you open up to them as you have here.
You’ve had such a trying time and I know as you said you’re not writing this for sympathy but I would like to just acknowledge and celebrate the fact that you give so much help to others under very difficult personal circumstances. Thank you. X💐
Thinking of you, PMRPro. You've been such a help to me over the last 3+ years, and to so many others, you deserve all the good fortune you could get. But I suppose we all need to be accepting of our circumstances. It is helpful to know that none of us is alone.
Sending you my very best wishes.
Hi Spanky, so sorry to hear you have so much to deal with. I have a couple of practical suggestions.
I had an ACL surgery last year in March and have found an elliptical trainer godsend since running was off the menu. It also meant that during the lockdown I could get some indoor cardio which was and is great.
I have also enrolled in several online courses which you can do wherever you are; one of them is an interactive language course with other students which makes it more sociable.
Online book clubs may be an option? (Maybe we should set up one on this forum? )
I find that no matter what is going on maintaining an interest that takes you out of yourself is always a welcome distraction. I hope you find the way forward that fills you with hope.
Thank you so much. Yes, a book club is something I think I'd like. I'll check into this. I know I need to line up some activities r winter will be a nightmare. Stay safe!
Yes - book club = excellent, as it prompts you to read stuff you might never have considered. Sometimes a good idea . . . .
Yuval Noah Harari's 'Sapiens' is worth considering. Puts things in perspective. And I'm atm reading Roy Scranton's 'Learning to Die in the Anthropocene', which is different but, if you can cope with it, also good for putting things in perspective. 
Wishing you, and your grandson, well.
Sorry to hear this. I can only speak from my own experience but I understand where you are coming from. The big change for me was when I accepted that my now 58 year old body was in for the long haul. Took about 18 months in before I accepted that for now this would be my new normal. With acceptance came a better ability to cope mentally. Changing my view from what I used to be able to do to what I can do now. Keeping my expectations low and not setting unrealistic deadlines for myself. Treating myself gently is the key.
As PMR is such a fluctuating condition I now only plan for the day or two. This was difficult for me as previously I ran my own business and knew what I was doing for the next 12 months! I was certainly a bit of a control freak. Now I only have plans for 24 hours or so and my friends in my bubble know that I may have to change arrangements if I have a bad day. It's not easy but it works for me.
One of the things I have done is to try doing s few new things. A lot of the activities I did pre-pmr were things like golf, cycling, dancing, going to the gym and I haven't been able to keep doing those. I have instead tried a few new things like playing an instrument (recorders), crocheting birds nests for our wildlife rescue, learning to make pasta, photography and trying out videography. Most of these things haven't cost me a lot as I already had cameras etc. I sold my push bike and have now got an electric bike which I feel more confident to go for short rides on. Walking is painful for me as in addition to PMR I have osteoarthritis in shoulders, spine and knees. Cycling gives me a sense of freedom and is more comfortable than walking.
Pacing is important too. If I need to rest, I rest and if I have an active day then try to have a quieter day or two to follow it. I don't put pressure on myself or berate myself for being unable to do stuff.
When I've had side effects and other things crop up I've accepted them and I've dealt with them as and when. I am a depressive so can get very low at times but I've found I am getting better at dealing with this too.
I guess I am saying that I've accepted that I am in for the long haul. This is the body I have so need to work with it. Hope this helps, do what you can, when you can xxx
Thank you. Still not good at accepting that I ll pay the price if I do too much. About time I learn this and do it. Hope you have a good day.
So sorry to hear about your grandson and praying for a good recovery.
There have been a few suggestions on here for activities to replace the ones that previously we had been able to do. It’s all about readjusting isn’t it which is far easier to say than to do, accepting our limitations and being thankful for the things that are going right or are ok. It’s taking on a new mindset isn’t it and I feel , not trying to remember and grieving for the things I used to do because as PMRpro said that is in many ways a bereavement.
Pleased that you have a good supportive medical team that makes such a difference! Best wishes Jackie 💐
Many good suggestions, and it is time for adjustment. I keep going back to the idea I'll be doing all the things I used to do. I also never really like to factor in the changes that happen as we age. Thank you. Hope you have a good day.
I’m sorry you feel so lousy, I hope things get better for you and I’ll pray that your grandson makes a full recovery🙏🏼🙏🏼🙏🏼
Thank you so much. Yes, we'll be happy when he completes all treatment in December. We all need a new start, a new year. Be safe!
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