Set back input | Arthritis Information

Share
 

Hi All!
I don't know if I have told you all, but I do catering part-time. This is
physically demanding work that requires standing all day, shopping,
lifting etc. I had a big job last week and aside from the heavy work, it was
the 1st time since diagnosisi I have worked so may hours and got less
sleep cause I was yp so early and the pred doesn't allow me to get to bed
early.

Oh, did I say my other job is as a social worker with a group of kids as
their advisor... the week before the kids and i painted a room.

When I finished the catering - totally exhausted - I had to ride 3 hours to
a family reunion & hack the next day.

Then this week my social work office is moving and although I tried not to
lift... well you know...

So today my neck is killing me and spreading back to my shoulders, I am
wiped out, and feel as bad as I have since starting on pred...

So someone give me some encouragement and tell me the pred can take
this back over and I will be feeling well again in a day or 2? Or is there
something I need to do like take tylenol to bridge the pain, or talk to the
doc about a 2 dy boost or what?

I am so discouraged!!! Ideas?
pgrHi pgr, I am so sorry you are having such a time, I can't imagine how you
were able to do all that. Talk to your doctor about a boost and a stronger
pain killer, I take a med called tramodol, which is better than tylenol. Can
you take some time off, several days to recover? My thoughts and prayers
are with you, I'll keep checking to see how you are doing. Libeth I  found that a few days rest and ordinary painkillers fixed it. Don't be discouraged, take the painkillers (remember pred is not a painkiller) and give it a good 3 days for your poor old muscles to settle back down, and don't do any lifting. ((((BIG HUGS)))). Pgr, sorry you have this.  It's so hard sometimes not to go bananas and overdo things.  Sometimes it's just not a happening thing to be able to sit back while others are doing the hard graft.

But you know you do have to learn to pace yourself, harder said than done, and I think that we all have do it the hard way.

We're a bit like the little girl with the little curl - when we're good we're very very good, and when we're bad we're horrid horrid horrid.

My doc gave me some good advice - he said if you feel like a million dollars, don't spend it all at once, or you will go broke.

He reckons on 20 minutes physical, then 20 minutes rest - no matter how good you feel.  Then repeat as much as you really need to, but once you start to tire or hurt, stop immediately.  This goes for housework, gardening, yardwork, or moving office, painting etc.  But absolutely no heavy lifting.

It's a hard lesson to learn, especially for an independent person, and I think the older we get the more stubborn we become Sometimes I can just stay in bed for most of the day (or two) and the gaping abyss of depression, fatigue and pain narrows a little.  Not everyone can do that, but it helps if you can.  I take darvocet during those times.  Unashamedly.  Whatever gets me through. Thank you all! You made me smile & giggle... yes Chico I was BAD! Not the
1st time I ahve been called a mad woman either! And kiwi... I can't tell you
how good it felt to hear my mothers words!!! I have VERY curly hair and grew
up with the "curl in the middle of the forehead" saying. Haven't thought
about it or heard it in years!
I will do NO lifting in the move today and try to take tomorrow off! I already
feel a little better after a good nights sleep.
What would we do without each other?
Thanks for the hugs!
pgr So glad you are feeling somewhat better.   Am still in wonder about all
that you are trying to do, amazing. Taught a sunday school class once, the
children were saying the Lord's prayer, and instead of "give us this day our
daily bread", they said 'give us this day our day in bed". So, take it!   
Never thought that I would have to do a high wire balancing act, the falling
off is the hard part. But I am getting better at it, those falls really get my
attention!   hugs, Libeth

Hope you're better now Phyl, I have to admit I was bad today! It is SOOO easy to get caught up in feeling good and overdoing it. It was sunny and lovely, so I exposed some skin for the sake of making Vitamin D, and pulled a few weeds out of the garden, but I felt so well and it was all going swimmingly, what with the birds singing and hubby whistling while he worked, and all the lovely new shoots springing up and the sun smiling on me.....anyhow, the end result is horrible muscle pain in my right upper arm (the arm I was working with), AND in the forearm muscle as well. I thought PMR didn't go down to lower limbs, but mine does.

PGR, I don't know how you can do all that?  My goodness!!!  I like Jeannes advice.  20 minutes physical then 20 minutes of rest.  It's been the only way I feel good consistently.  My doc said we need rest so our body can overcome this, that's why she also gave me some other medications to get by if I need them to get my rest.  I'm envious of Britch...I'd love to spend a whole day or couple of days and just close out the world, stay in bed, watch movies/tv/read or whatever with no responsiblities. One can dream can't they????  My family would be frantic if I did that. They'd most likely call or come over and ask me how I'm doing hour on hour which would ruin the whole thing. 

I hope you feel better after resting PGR?  I know when I feel it coming on from too much activity I can usually make it go away with rest as long as I have Pred.

Well, it's almost 1 am again and I've been up since 7 am so I need to try to get some rest. I don't know what I'm saying anymore.

Good nite dear friends!  I'm so glad you're here.

Kathy 

Thank you all for your well wishs... they worked! I slept 9 1/2 hours! Right
now I feel good, if draggy tired, and I intend to do NOTHING today!

Chico, I have heard there are some who get lower arm pain, but it is usually
later, after the upper arm stuff. Take the advise you gave me - rest and give
yourself a break - dare I say "Save the Spoons"?   

As far as what I do... I think this is what my doc doesn't get. Those of us this
young are use to a very active life - getting to no pain without activity is not
the same as getting our life back! I want my spoons!!! I am on he couch for
the day -
thinking of all of you
pgr Well, every time I got off the couch Friday I managed to get food into me
(was hungrier than usual) and then fell back onto the couch exhausted - has
anyone in this gang ever had mono? I did years ago and coined a term called
"monotized" for the exhausted feeling - that is how i felt Friday & today!
Slept 10 hours last night and again could barely get out of bed today! I am
ready to go back to sleep & hoping tomorrow will bring some energy! At
least there is no more pain, but my back is stiffening from so much bed
time!

What happened to the speed effect from the pred I had been living with? I
need the energy!
pgr

Hi PGR,

Maybe you just really need the rest.  Sometimes we just need to crash for a while.  Your body is probably screaming at you to slow down for a while so it can do some healing.

I had mono as a teenager.  I think the fatigue & depression that goes along with PMR resembles the mono symptoms.

I drink a lot of coffee to get going in the mornings.  I feel tired and wired at the same time, but at least the pain is now minimal.

You take care hun!

 

Well, yesterday I finally didn't feel dead. Still rested much of the day, then
went and bought shoes (only had to go to 1 store where my son works)
walked 4 blocks, and sat and watched an outdoor concert (only had to sit
there). I fell into bed ad slept 9 hours again - but think I will be ok today as
long as I don't try to overdo.
Thanks for all the support!
pgrPhyl, I thought of you today, as I read an article on PMR that said there are 3 sub-groups of PMR patients (with regard to severity of symptoms and response to pred) One of these groups has a poorer response to the usual low dose and needs a higher dose to start, then relapses more and has a longer duration of the illness. Sorry, that is not a cheerful thing to tell you, but I thought it might help you understand why you had so much trouble with your initial dosage and why you have set-backs like this. I hope it is not true for you, and that you soon settle into pain-free low-doses. I'll see if I can find the link and post it here. The article is on the UCLA Department of Medicine site, called Diagnosis and Treatment of Polymyalgia Rheumatica by Charles E. Keenan Jr., M.D.
quote: "Three subsets of patients have been described. The first group responds quickly to initial steroid therapy, without flares after tapering. Required course of steroids is short. The second group also responds well but has repeated flares and requires a longer course of steroids. The third group does not respond to initial steroid doses, and higher dosages are necessary. For such patients, more flares occur and a longer course of steroids will be needed."

I hope that won't happen to you, but it does show that there is variation in required dosages and response to the steroids.

My research on PMR with normal ESR all says that when the ESR is normal, it is a milder case of PMR, with less severity of pain and a shorter duration. And nost often in men, and in younger patients. However, it does not affect the pred dosage or the likelihood of flares. Well, if I'm having a mild case, I hate to imagine how you others feel, with your high ESRs. I have to admit, that severe pain has not been a problem for me, it has been more a case of nagging mild to moderate pain, but bad stiffness and terrible terrible fatigue and general unwell-ness. What a ghastly business! Thank you for the info, Chico. I will look at the article and maybe print it
for my rheumy. I thought I was going to be ok yesterday, but still couldn't
do much. I My body felt like it really needed to move before I really
stiffened and the came crept in, so we went for what was a SHORT bike
ride for us: 7 miles (we usually do a minimum of 12. Even at my worst
before pred we were riding miles... anyway, after the ride, I collapsed for
an hour. I went for a short trip to the grocery and made an easy dinner
and was back in bed by 8pm!!! Today is a full work day, so we'll see how
it goes; I'm having a ard time starting though.Ok so the GOOD news is NO
pain! I think this is an ok trade off for now! It brings me back to my
rheumy saying maybe the difference for younger patients is we expect
more than to be painfree in a chair all day!
Wishing everyone a great week.
pgr



Hi all,

I've been on Pred for about 3 weeks and although the pain is GREATLY reduced, it does seem like it's only the case if I "sit in a chair" all day like PGR states.

I helped my daughter on Monday in remodeling her bathroom.  Mostly I measured and showed her how to do things (remodeling used to be one of my favorite activities) but started feeling the pain after a couple of hours and then started getting bad cramps in my legs and hips and shoulders after only a few hours more of what I'd call very light work.

I've been reading the posts but haven't felt much like contributing....too depressed I guess.

Wishing everyone a good week!!!!

Kathy

 

 

 

Kathy,
I am so sorry, I know the frustration! I hope you are feeling better by the
time you read this. You didn't say what your pred dose is, my question is
whether it is high enough?

So here is my update...
I went to the rheumy today. I was having minor pain after a day of work
yesterday and told her about my weekend long exhaustion. She decided
to keep me at 20 mg because she was afraid I couldn't handle the
decrease right now without a real flare. She feels I can stay at this level
for another 2 weeks and says sometimes that is necessary. Then if I am
ok, we will lower to 17.5 mg.

There were several interesting & I guess very discouraging things, she
said. She also referred to 3 types of PMR as Chico did. However they were
slightly idfferent:
1) those who respond quickly & taper and that's it
2)Those who have a harder time responding and convert to other things -
RA, Lupus, GCA, etc... the bad news? She believes that may be the 50 yr
olds...
I don't remember the 3rd because I was focused on her really believing I
could be in that category... It fits with Chico's astute dx of me

Gee thanks Chico!

She also did a bunch of bloodwork. Looking at CRP, and an immune
panel. Says if it is something that will convert, we could find out early...

ok enough depression!!! Who can I sing Happy Birthday to?
pgr

Hi PGR,

I hope you're doing better now?  Did you get your bloodwork back yet? I'm on 10 mg's of Pred and told the doc I really don't want to take more.  I'd rather be careful with my activity.  I really over did in on Monday and paid for it for about 4 days.  I'm getting back to feeling better and will be more careful with projects requiring manual labor.

Take care, Kathy

 

Kathy
No test results back yet. Thank you for asking. I had another busy week, and
this will be another. I am very tired, but even after scrubbing my house
yesterday, the pain is minimal! Yipeeeeee!

Hope you are feeling better.
pgr
Copyright ArthritisInsight.com