Pain From Physical Activity

[smoothilly]

Hi all! I find if I do the slightest physical activity, I will pay for it for at least a week. For example, I am a teacher and had to bring some binders home to write reports and the next day my shoulder down to my fingers were so sore. Does anyone experience this?

[SnazzyD]

Hello,

I just have GCA but since being on Pred I pull or strain muscles with the slightest exertion compared to my life before Pred when I. Hold quite happily dig the garden for hours.

[smoothilly in reply to SnazzyD]

Thanks for your reply. I guess it has something to do with the pred. It’s so frustrating. I’m only 53 and can’t do anything physical anymore.

[Mary63 in reply to smoothilly]

I think for some people it’s because muscles are affected by the disease. Some people just cannot do much exercise without suffering a lot. Others can get away with more. Some can build up physical activity gradually. But that wouldn’t be of much use when you had to assemble lots of binders quickly

A lot of people are just too tired to even be able to work. Since more or less retiring I find I can manage some physical activity particularly if done earlier in the day. I wish you the very best.

[smoothilly in reply to Mary63]

Thank you Mary. I use to be a very active person so it is very frustrating. I’m only 53 and I can’t wait to be done with this disease!!

[SnazzyD in reply to smoothilly]

For now. Do try to rest as much as you can because your body is not being cured of this thing, it is just holding back the symptoms while you get better. I was 54 last year when I got GCA and I haven’t worked since; my job disappeared over night due to the side effects of the Pred. It is hard but getting better became my job because I want to get back to an active life again.

[smoothilly in reply to SnazzyD]

Thank you for your kind words. I have found I have had to say, “Sorry, I can’t do that.” to my coworkers and partner.

[SheffieldJane]

It’s to do with the PMR not the Pred. You need to get creative about the heavy lifting that goes with your job ( presumably you are surrounded by young strong people). I don’t know the age group you teach, but can homework be emailed to you.

This feeling like you’ve had a boxers’ work- out after a minor exertion will not last forever but in the meantime that symptom needs to be treated with respect. Your employers should be working with you to ensure that your job design supports you as much as possible. Good luck!

[smoothilly in reply to SheffieldJane]

Thank you so much. I work with kindergarteners so it is very physical. I now have a backpack that wheels to carry heavy loads. Fortunately, I have a great assistant who does any kind of heavy lifting. Some days I feel great and go to put down the kids cots for rest time and she stops me! I’m very thankful for her.

[PMRpro Ambassador]

Most of us probably. You are on pred to manage the inflammation - but that is only managing the symptom, it does nothing for the underlying autoimmune disorder that causes it. That continues to chug along in the background, attacking your body and causing the same sort of effect/feeling flu does. It makes your muscles intolerant of acute exercise and they do not tell you when you are doing too much for their current state and having abused them they take a lot longer to recover. Someone on another thread today said she notices it takes here far longer to get to the Day 3 feeling after exercise. You have to go back to the beginning and build up your training from a very low level. I couldn't carry more than one item from the car into the house when I'd been shopping in the pre-pred days. It is nothing to do with pred - it is the PMR.

"I’m only 53 and I can’t wait to be done with this disease!!" - whilst I fully understand your frustration, you will need to get your head around the fact that this isn't a short expedition. I was only 51 when my PMR first appeared and had been a daily visitor to my gym. I changed gym to one with a pool - and did aquafit instead for the next 5 years of PMR with no pred. That let me manage an adapted Pilates or yoga class - but "normal" gym stuff ceased to be part of my life them. I'm unusual - but 14 years later I still have PMR. The average duration is just under 6 years and the minimum is 2. Learning to live with PMR is the most important part of your future if you want to live well and happily. And yes, it is possible.

medpagetoday.com/rheumatolo...

healthunlocked.com/pmrgcauk......

[smoothilly in reply to PMRpro]

Thanks for your reply PMRpro. You gave me something to think about.

[Soraya_PMR]

I get where you’re coming from smoothilly . I remember feeling somewhat aggrieved at 56 (diagnosis at 56, but probably rumbling at least 6 months to a year prior). WHY? Why do I have this thing that is SUPPOSED to affect the older generation?

Two things....we are the older generation now! Yeah, our brains still think we’re in our 30’s and until PMR our bodies were playing along with that ruse

.....it’s the medical books that state that PMR average age is 70’s. It’s quite recent that the ‘medical age’ of onset has been reduced to 50. My belief is that this age will reduce overtime, but currently the medics are stuck at this obstacle. Although it’s not unheard of for people in their late 40’s to succumb. PMR does not necessarily wait for us to blow 50 candles out

I had given up work to care for a relative, and after their death I never managed to get back to work. I’m tentatively scanning the job lists now, but it’ll have to be something simple and without stress, unlike my previous job (Social Work). I maybe could manage 2 hours a day, providing those 2 hours don’t coincide with my unpredictable need to just stop everything and lie down! So I have immense admiration for those who can continue to work productively.

And yes to post ‘exercise’ pains. Simply carrying a shopping bag (I now divide to 2 small bags) can elicit ridiculous pains which last far longer than expected.

[smoothilly in reply to Soraya_PMR]

Thanks for your reply Soraya_PMR. I don’t feel so alone now.

[Soraya_PMR in reply to smoothilly]

You’re never alone on the forum. We ‘get it’, unlike the general populace who can’t imagine we’re poorly as we ‘look so well’ !!!!!!!!!!

[suzy1959]

Yes, smoothilly, I know that feeling. I was 52 when PMR hit and now, 6 years later, am finding that I can do less and less. I have decided to retire from counselling in the summer ,having cut down more than once in this time. Looking back, I wish I had take the problem more seriously at the beginning and stopped working then. I actually worked harder as my husband was made redundant( the probable trigger for the PMR) and I felt I had to play my part! I have been through so many stages of denial and am at the point , I hope , of acceptance finally. I now have OA in both knees and a hip to add to my problems and was in the most pain about a years ago as I was following many people's advice to try to exercise- even 3 minutes in the pool was giving me pain for the rest of the day. Once I stopped trying to exercise, my pain has become more manageable again, but I am still very limited in what I can do during the day. My body often tells me the next day that I have overdone it again!

[smoothilly in reply to suzy1959]

Thank you for your replySuzy1959. I think most people don’t understand what we are going through. I guess acceptance is important to finding your reality with this stinking disease. I’m just taking it one day at a time. Good luck to you!

[PMRpro Ambassador in reply to smoothilly]

It may also help if you try to put PMR into perspective. Yes it is a pain in the anatomy and does stop us doing a lot of things. Equally it also then allows us to stop and smell the roses.

But it does not maim, it does not kill, for 75% of us who have it will go into remission within 6 years or so. It didn't arrive until we were over 50 and had already had a life. On the right dose of pred you can have a pretty normal life for our age.

If you want to see what some other forms of autoimmune disease do to people go to the lupus or vasculitis forums. There you will meet people in their teens and twenties who cannot get out of the house and are in hospital a few times a year. Who have little chance of ever working or having a family and will probably die young after a lifetime of dealing with all sorts of unpleasant problems.

[DorsetLady PMRGCAuk volunteer]

Hi,

You have already received very good advice, but this may help you understand your illness a little better, and therefore how you need to manage it. (If you haven’t already seen it). That’s what we all have to learn, and when you are working it’s much more difficult.

Have answered your message as well.

healthunlocked.com/pmrgcauk...

[smoothilly]

Thank you! Great info.