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peleroja
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I have 16 hats, all the same style!

« on: February 05, 2009, 04:35:47 PM »

For about a month or so I've had a pain deep in my right butt cheek, so I visited the doc and she said it might be sciatica and prescribed ibuprofen (what the heck, the kidneys are shot already, right?).  Then she had me do a blood test for erythrocyte sedimentation rate which turns out to be 83 and should be 0-30.  Doc now says I may have polymyalgia rheumatica, which is an inflammatory disorder that causes widespread muscle aching and stiffness, primarily in your neck, shoulders, upper arms, thighs and hips, and has referred me to a rheumatologist.  She says the treatment is long term steroid use (as if I don't have enough problems already!!!)  Anyone have this?  Heard of it?  Know anything about it?
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pelagia
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« Reply #1 on: February 05, 2009, 04:48:13 PM »

My father was diagnosed with polymyalgia (not sure about the rheumatica part).  My sister (an LPN) says it's one of those diagnoses they give when they can't figure out what's wrong.  My dad went on steroids and that made him feel great.  They eventually tapered him off and he felt better than he did before the steroids.  But, he seems to have "episodes" and has been back on smaller doses of steroids a few times over the last year.  He's in his late 70s and has also been plagued by arthritis and gout for many years.

Any chance that the pain is associated with all the exercise you've been getting?
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
monrein
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Might as well smile

« Reply #2 on: February 05, 2009, 04:50:26 PM »

A good friend of mine has also had polymyalgia, did the steroids, tapered off slowly after a while and is fine right now.  She is addicted to walking and cycling and is very active.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
jessup
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« Reply #3 on: February 06, 2009, 04:04:54 PM »

Yep - got it in mid 1980's
I couldn't walk or even lift my arms
The pain was excruitiating - I cried heaps
Was very scared and young (17 yrs old - very unusual- normally older people 50's +)
Thought I would not walk again
Then suffered in my hands from using the weelchair
Was in hospital for a couple of months while they tried to figure out what was going on

Did the steroids and other anti inflammatory drugs
I "suffered" for months and months but with the meds there was much relief
As the years have gone by I have improved immensley
Am walking, running, typing, writing etc

However I still get bouts  when the weather changes or I don't keep up exercise or maybe it's in my head

Sounds crazy I know but I have found that I need to exercise to keep the positive attitude
Don't take roids anymore but do use pain relief
And of course there are consequences taking the meds for too long

Hang in there mate
You will get better
I am proof
 :cuddle;
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twirl
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« Reply #4 on: February 12, 2009, 01:39:02 PM »

I do not know a thing about it but I can say I hope you feel better
wish you could go buy another hat
that might make you feel better for a little while
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peleroja
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I have 16 hats, all the same style!

« Reply #5 on: February 12, 2009, 04:49:02 PM »

Thanks, twirl, but I suspect my hat buying days are pretty much over.  When money is needed for mortgage, gas, electric, food, etc., hats kind of get pushed to the back of the mind.  I suspect a lot of us are in the same boat.
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Romona
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« Reply #6 on: February 12, 2009, 06:14:44 PM »

I would give you a kiss to make it better, butt :rofl; I draw the line there!


Seriously, I hope that you get a good treatment to feel better. :grouphug;
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #7 on: February 13, 2009, 06:27:21 AM »

I know about sciatica.  I had it occasionally in my twenties, and then a huge attack in my first trimester of pregnancy.  I could hardly walk.   It does affect me for a day or two every now and then.  I know nothing of the other thing.   But my caring thoughts are with you. :cuddle;
How are you today?
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
peleroja
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I have 16 hats, all the same style!

« Reply #8 on: February 13, 2009, 07:50:32 AM »

Well, bajanne, I feel kind of like I have bipolar disorder.  Some days it hurts like crazy and other days nothing.  I see the rheumatologist on Tuesday, so will have more info later.
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thegrammalady
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« Reply #9 on: February 13, 2009, 11:17:58 AM »


Sounds crazy I know but I have found that I need to exercise to keep the positive attitude



not crazy, i knew a guy years ago who was a mail man. he walked miles every day. his doctor told him his arthritis was so bad it was amazing that he could walk at all and he needed to keep walking to be able to keep moving at all.

peleroja, hope you feel better soon and the doctor you see has some good answers for you.
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s
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
peleroja
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I have 16 hats, all the same style!

« Reply #10 on: February 21, 2009, 09:12:14 AM »

Oops, I forgot to update folks.  The doc says i do not have polymyalgia rheumatica; what I have is plain old arthritis.  Phew, I really didn't want to take steroids.
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pelagia
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« Reply #11 on: February 21, 2009, 09:39:14 AM »

well, that's good news and less than great news mixed together.  :cuddle;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
paris
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« Reply #12 on: February 21, 2009, 02:03:20 PM »

Good about the steroids,  But "plain old arthritis" is very painful and somedays can be crippling.  Take care of yourself and I hope you have more pain free days than painful days.   :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
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