Hi all,
Apologies for the bizarre
heading.
Diagnosed pmr 2016, only reduced pred to 9mg then had to increase to 10.
I thought I was improving and able to do more. .
wrong.
I have also been diagnosed with copd and osteoporosis, So I thought walking
was with my young pup
would improve mobility.
I walk a mile a day, Thursday and Friday last week I walked a little further and
felt fine until Saturday,
Could hardly move, dreadful pain and feeling of total despair.
I have been in and out of
bed ever since.
My question is, why don't I get any warning that I am doing too much, I have increased pred by 1 mg today, shall I go back to 10.
There are so many of you worse than me, but today I feel at my wits end, I
wonder if the mental
havoc this illness causes is sometimes as bad as the
physical pain.
Hate to moan, any advise would be much
appreciated.
I hope you are all as well
as you can be.
Julia
If it is muscle pain from doing too much, it should go away in couple of days. It is not necessary to increase the dose for that. How do you know you are doing too much? Since feedback takes couple of days, by the time pain comes, it is too late. Best is to pace yourself. Start your walks short and don't change distance or speed for a week and see if you can handle it. Then GRADUALLY increase distance, best not to extand your walks more then 5 min at the time. Slow progress is the only way to make any progress, otherwise you will be hurting yourself and restarting all over every time.
julia85224, if it was me I would go
back to 10 mg. See if you are PMR
pain free, if you are stay day few
days. Then drop back to your lower
dose. What is your lower dose?
After my flare I walked 1/6 mile rested
10 minutes and did another 1/6 mile.
Now I can walk over 7 miles a day,
about half in am then half in PM.
But I have reduced my meds, if I have
any PMR pain. The walking should
be good for your bones. Plus there
are meds to help. Good luck, I would
try to get PMR pain free, move on
from there! 🙂
yup .... the trick is to make things stable, then slowly change one thing. It takes quite a while to work out what can and can't be done.
At one stage I couldn't walk to the end of the street (less than km) without having to have a couple of days off. So I did half a street and found I could repeat that every day. Then slowly increased the distance until I found the limit.
Same with just about everything I do.
Julian, have you been pain
free? And at what dose?
" why don't I get any warning that I am doing too much"
Because that is the nature of the beast I'm afraid and something I warn about regularly. Despite the pred relieving the SYMPTOMS which are due to inflammation, it does nothing to the underlying autoimmune cause which is the real illness. PMR is just the name given to the symptoms. The real illness chunters along in the background making your muscles intolerant of acute exercise and unable to signal that your are asking them to do too much.
As Nick has already explained very well - you can "train" and get back up to higher levels of exercise, but you must do it very slowly - starting with maybe 5-10 mins at a time. Often you can do this amount several times in a day - providing you rest appropriately between . I couldn't walk for 45 mins - but I COULD walk half an hour, have lunch and then walk home. At the beginning of the ski season I could ski 3 short runs one after the other with only the rest on the lift between - but I couldn't ski a run that was double the length, I couldn't do that for a month or two even though in the meantime I had built up to 10-15 runs on the shorter runs.
By just building up a few minutes extra at a time you see very quickly what you can or can't manage. It sounds boring and slow - but, like reduction using the DSNS approach, it isn't slow when it works! Overdo it badly and, as you've seen, you may be incapacitated for a week or more and have to start at the beginning again.
Hi,
Thanks for you're reply.
I will take you're advise and increase distance
slowly ( so hate that
word ).
I added an extra 25 mins in distance and never
gave it a thought, was a
lovely sunny day, so pup and I kept walking.
Won't do that again a
hurry.
Hope you are well.
Hi,
Thank you for you're reply.
7miles you put me to
shame.
Here I am moaning I walked an extra twenty-five mins.
I will start a shorter distance and build up.
Hope you are well.
Hi,
Good to hear from you,
I just didn't give the
additional distance a
thought, plus went and
did it again the next day.
I thought after 12 mths of being in denial 're this illness, I had wised up to what I can and can't do.
Obviously not.
Shorter walks for now, pup wont be happy, bless him.
I hope you are well.
But he can have a few more per day - and if you walk for half an hour to a place you know you can have a rest (cafe, park bench) then you will manage back too. It is the rest that is key - however you manage to arrange it.
Hi,
That makes perfect sense, wished I had thought of it before.
I was so pleased I
could walk any
distance to be
honest as 12 mths ago I couldn't.
I got the pup,( which my daughter's
thought was
madness), not only
to give me a focus
but to build up
exercise.
Shorter regular
walks is definitely
the order of the day.Well hopefully
tomorrow.
Take care
julia85224, now yes, but if you saw
me 4 months ago you would not
believe it was the same person.
Just a little bit each day. Little long
in either time or distance.
And with a smile on your face.
🙂🙂
Hi,
Always with a smile on my face, this
illness will not stop
that.
Have to admit, I do "growl" some days.
Take care
julia85224, what kind of
a dog did you get?
We have Long-haired Mini
Dachshund, lots of fun. If
you sit to watch TV you
will always have company.
Keep smiling! 🙂
Hi,
He is a black Labrador and he makes my day, everyday.
Take care
When we lived at the ocean
our daughter had a Black
Lab, we walk the beach and
would throw a tennis ball
into the surf, she would
jump in swim out and return
the ball for another throw.
The Dachshunds would enjoy
but never too far out. Have
always loved dogs all types.
🙂They can bring a smile
to your face!
sorry, missed the question about "pain free".
Yes. But not always. Or at least "pmr pain free".
It varies quite a lot, even when I think of it as stable. Three weeks ago I came home from a two month trip ready to reduce the pred (from 3 to 2.5). Then I did some heavy work replacing suspension bits on my truck. Now I'l have to wait a couple of weeks for twingy pain to subside.
A long time ago, at least 18 months, something changed. I was able to bushwalk/hike up and down hills. The pain was from exercise not pmr. Magic.
I've had pain in various forms all my life so the concept of managing pain is not new to me.
I find if I'm reasonably fit physically I can get over the mental bumps more easily. I nearly said tolerate more pain, but that's not quite it. Just more energy to manage it I suspect.
I have weimaraner that helped me get back in activity at the start of PMR. He needs 3 walks a day. They are high energy dogs that need to spend it somewhere. Every day we walk, rain or shine about 3-4 miles, sometimes more.
Julian, I am a very active
individual, rode a bicycle
up and down NM mountain
road 3000 to 4000 miles a
year, work as ski instructor
in the winter. Now I have balance
issues. But PMR, has set
me back, now walking, but
I will not reduce the Pred
if I have any PMR pain. So
far I have able to distinguish
between PMR pain and pain.
I PMR pain has been very
localized in groin and shoulders.
When the PMR hits I can do
nothing. Pain free reducing
DSNS taper, walking with 5
lb weights in am with a smile
on my face. Trying to get in
shape for this ski season!
🙂🙂
nick67069, you are never
alone if you are with your
dog. Great company! 🙂