When is too much, tooo much( physically)
Posted , 9 users are following.
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
1 like, 29 replies
nick67069 julia85224
Posted
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.
julian. nick67069
Posted
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.
Michdonn julian.
Posted
free? And at what dose?
julia85224 nick67069
Posted
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.
julian. Michdonn
Posted
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.
Michdonn julian.
Posted
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!
🙂🙂
EileenH julian.
Posted
"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 think it works both ways feeling fit makes dealing with other things more straightforward, and mental processes not being impaired in any way makes facing up to pain easier. Don't think I've put that very well ...
Michdonn julia85224
Posted
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! 🙂
julia85224 Michdonn
Posted
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.
Michdonn julia85224
Posted
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.
🙂🙂
julia85224 Michdonn
Posted
Hi,
Always with a smile on my face, this
illness will not stop
that.
Have to admit, I do "growl" some days.
Take care
EileenH julia85224
Posted
" 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.
julia85224 EileenH
Posted
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.
EileenH julia85224
Posted
julia85224 EileenH
Posted
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
Michdonn julia85224
Posted
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! 🙂
julia85224 Michdonn
Posted
He is a black Labrador and he makes my day, everyday.
Take care
Michdonn julia85224
Posted
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!
nick67069 Michdonn
Posted
Michdonn nick67069
Posted
nick67069, you are never
alone if you are with your
dog. Great company! 🙂
Anhaga julia85224
Posted
Exactly. I am now able to have a fairly long walk (measured in steps, not actual distance) but I do better if I have two or even three shorter walks a day. My best workout is my trip to the physiotherapist. I walk close to fifteen minutes to catch a ferry. I sit on the ferry for nearly fiteen minutes. The walk to the physiotherapist is also about fifteen minutes, sometimes if I'm early I walk a bit further. Then half an hour to forty five minutes relaxing with various forms of physiotherapy, followed usually with a cup of coffee and snack at a local cafe so I can recover from all the exertion. Then return trip. Usually I use my walking poles for this adventure. And that's it for the day! But I'll have walked about four miles quite painlessly. If I try to walk a similar or even slightly shorter distance (using the poles) all in one go I'm struggling by the end of the expedition.
julia85224 Anhaga
Posted
Hi,
Thank you for you're reply, and encouragement.
I had a shorter walk with pup yesterday and today felt much better.
It is a case of walk and rest, I think.
Hope you are well.
Michdonn julia85224
Posted
julia85224 believe me, short walk-rest, short walk-rest. I started that back in April, one walk in morning and one in the evening. I tried to increase a little bit each week, never tried to over do it. I had a great place to walk a little pond mid town 1/6 mile one time around. One time around sit and rest, one more time sit and rest then to the car. The next week three times around the pond in am a few days then both morning and evening. I steady increased a little bit at a time. I know it can be done, I just did it. Hell in April I was in a wheelchair. Put that smile on your face and go for it, a little bit at a time! SMILING 🙂
EileenH julia85224
Posted
"It is a case of walk and rest, I think."
Absolutely - as Mich describes, you can build it up. I was almost immobile and on crutches and could barely get to the village, maybe 200m. I did that and back for a few weeks, then went a bit further and back - and built up a bit extra every week, first the shortest round walk, then the next and having achieved the longest which took about 3/4 hour at first, I worked on speed, now it takes well under 1/2 hour. But it took me 5 or 6 months to get to that. Rome wasn't built in a day!!!!
julia85224 Michdonn
Posted
Hi,
Apologies for late reply.
Bless you, after reading you're comment feel quite inspired.
Didn't walk as far today, felt very tired, we went to the field nearby which as a brook running through it, so pup had lots of fun.
I am biased but I don't think you can beat an British sunny afternoon in the country.
Takecare.
julia85224 EileenH
Posted
Hi,
Apologies late reply,
Thank you as always for you're wise words.
Shorter walks with a rest is definitely the order of the day, for the next week or two.
Hope you are well.
Michdonn julia85224
Posted
Good for you listening to your body julia85224, don't over do it. Set a goal, put a smile on, grab the pup and go for it. Any sign of pain stop rest let the pup play, then when comfortable resume your activity. This journey can be as difficult as hell, so let's take smart way and get there as PMR pain free as possible, with a smile.🙂