Tomorrow I am going for an initial workup with Physical Therapy. I've just completed the initial paperwork they want me to bring. Part of it includes diagrams of a human, back, front, sides, with the instruction to indicate the areas that are painful.
My rheumatologist just dismisses pain as fibromyalgia. I checked last week and the places where my upper arms hurt are NOT fibro tender points, also my hips. The fibro points hurt as well, but not as much.
Their way of asking doesn't allow me to say, "Well, my knees hurt about a 4. My back hurts at 7 or 8 until the Prednisone kicks in, and then it drops back to a 5. The back of my neck starts to hurt in the evening, moving from 5 to 7 or 8 by bedtime. Occasionally my medial interphalangeal joint on the left middle finger hurts like the dickens. My left split sesamoid bone hurts a lot, for an hour or two, once a week. I use an inflatable ring to sit on, because some bones hurt in my butt, but I don't know what they are. It's an asymmetrical pain."
On the other hand, my elbows are pretty good. If I take enough Prednisone my wrists are okay. But nobody allows me to say that I'm in pain, so I don't say so.
Who do I tell? What do I tell them? What does it matter if I tell? Tylenol does NOTHING. For twenty five years all I've wanted is a steady supply of methadone. I ran into a colleague about ten years ago, just as the semester started and I was back from abroad (Israel, nice dry climate). I said, "I'd forgotten -- referring to the weather -- what it was like to hurt all the time." He said, "You mean there's a place you can go where your body doesn't hurt?" And I remembered: He has sickle cell disease, with one or two crises a year.
So, maybe I don't hurt so much, after all. I wouldn't send this to my current doctors, because they would think I wanted drugs. I don't. I want the pain to stop. I want to keep thinking clearly. Prednisone is good. Prednisone is good.
Thinking about something else sometimes works.
OK I sound like that TV ad "Unless you have migraines, you don't know P-a-i-n."
Everybody, have a painless night's sleep,
Soycoffee
soycoffee, I do not know if it has changed now but back in 1986 I was told that the Doctors only got 1/2 credit hour of training in pain management. Most seem to have little understanding of pain, the meaning of its location, and what can be done to reduce its levels.
The 1/2 credit hour course that I took in college was just an introduction course on magic. I learned a few misdirections and slight of hand. It barely touched the surface of the topic.
It sounds to me like you have some RA pain along with pain from several other sources. Most doctors seem to believe you are seeking drugs if you know what works to manage your pain or know to many medical terms.
There is a variety of options that you can use to manage your pain that is beyond the scope of medical doctors. RA- Boswellia / Dark Cherries, magnesium salicylic acid (I have had trouble finding this), breathing, Reflexology, Reiki, massage, etc.
I hope you find something that works for you. PM me if you want some more ideas.
I was also given that silly diagram. After much thought and consideration in the waiting room, I just circled the whole darn picture. Done. And accurate. (unfortunately)
Good luck!
KellyG
I once told a person that having sjogrens felt like one of those Harry Potter Dementors was floating over my head sucking the life out of me. That's the best way I can describe it ....
I cant think of how to describe it to people, except to say 'My everything hurts, like a dull ache in some places, sharp pains in other places and weakness everywhere else - just 'my everything'.
Cant think of any other way to describe it and I have gone past caring if they understand or believe me but I did say to one person that tried to belittle it, 'When you next complain of bad period pain, how about I call you a liar'.
I just say that I feel like I have the flu all the time, and that some days are worse than others.
Kellyg, you made me laugh! I hate those little pictures of bodies we have to fill out. They drive me nutty. And I'm always thinking, do they really want all your ages and pains, or just the part I'm seeing him about. I should try your trick next time.
;D ;D ;D
Joe, Check out Vitacost.com for the Boswellia.
Vitacost has a great selection & competitive prices. (Also, you can read other's comments about the supplement you are considering)
Kelly G made me laugh out loud also! Sometime I minimize some pains...so I don't sound crazy! Oh and when I turn this way...this happens. And sometimes I have electric shock on this side...but then it changes to the other side .... And sometimes my jaw.... All the while they are looking at you ...and the first thing out of their mouth is ...."So...how long have you been on Prozac?" LOL.. BUT FINALLY Thank Goodness I have a very understanding Rheumy!
Arsty..."So...how long have you been on Prozac?"....I always say "Yeah, it was prescribed for overwhelming fatigue. And my hair falling out...go figure?"
RE: Doctors I keep a chart diary on Word
Jan Pain/Rate Time/Area Notes Other
10 0 clear headed
2 5pm/rt-t night driving took 25mg
0 really tired bed 8pm 25mg
then I have a key: I rate pain 0-5 / this chart is for headaches so rt-t = right temple/ rt-eye = right eye, etc.
My Dr. told me to keep a diary and I don't see how a chart of one day's pain (since it changes intensity and moves) tells anything.
I am glad I made a few people laugh! (Doxie and Artsy) ;)
We have to keep our sense of humor to keep from going crazy, right? To keep the docs from thinking I am a nutty patient, I have actually tracked my symptoms over time, before and after new meds, then graphed them into fancy charts and diagrams. Impressing the docs isn't easy, but you have to get their attention!!
Take care, Hugs to all,
KellyG
I loved your pain description! It is so spot on to what we deal with daily.
You have inspired me to blog about that topic sometime ;D
I don't know how or why I missed all these wonderful responses. Thank you. You have shown me that "laughter is the best medicine." Norman Cousins once deliberately laughted his way well, after a serious illness. His 1979
ANATOMY OF AN ILLNESS (more recently 2005) is described on its Amazon page as
"a classic book by on combating life-threatening illness through humor and patient participation in care." His autoimmune illness was ankylosing spondylitis.
Thank you,
Joe S., for quantifying the amount of training most doctors have in pain management (1/2 credit). I've thought of going to the Pain Management Clinic, but brushed it off, thinking "Surely my doctor will respond to this if I approach it in a better way." Most of my life I thought that Doctors overtreated pain and I've struggled to get less, not more. So, thanks, Joe. That helps.
Thank you,
KellyG, for your laugh-out-loud treatment (!) of the inane body charts. I recently had to fill one in for PT. I did heavy pencil shading in some parts, and then different pen colors for other parts. Circling each view would be easier.
Thank you,
Liz Petillo for your comparison of Sjögren's to the Dementors, sucking your life out of the top of your head -- and some other parts I can think of, too.
Corella's imagination comes up with a poetic way of decribing autoimmune pain:
Quote from: Corella on January 09, 2012, 08:04:22 AM'My everything hurts, like a dull ache in some places, sharp pains in other places and weakness everywhere else - just 'my everything'.
Then
Corella adds this put down to those who don't get it:
QuoteI did say to one person that tried to belittle it, 'When you next complain of bad period pain, how about I call you a liar'.
Perfect!
Quote from: A66eyroad on January 09, 2012, 08:13:45 AM
I just say that I feel like I have the flu all the time, and that some days are worse than others.
Thank you,
A66ey, that expresses it briefly, without needing any further comeback!
Then, from
DoxieQuote from: Doxie on January 10, 2012, 07:19:20 PMKelly, you made me laugh! I hate those little pictures of bodies we have to fill out. They drive me nutty. And I'm always thinking, do they really want all your ages and pains, or just the part I'm seeing him about. I should try your trick next time.
Oh yes! What are they thinking? What do they want to know? How will this help them (and me)? And then they never talk about the chart! I wonder if there's ever a chart review in the hospital.
I have this fantasy in my head about University of Pennsylvania Hospital (HUP) getting into the Top Ten. They were already great, with mostly great docs. In order to go that extra mile, they put pain diagrams in every chart, and reviewers came and looked at the charts, and gave the hospital an A+ because every patient's chart had a pain diagram!
In my fantasy,the other thing that HUP into top 10 was to pay someone to go through ALL their examination gowns, and sort them into "keepers," "menders," and "tossers," according to whether the gowns had TIES! Since HUP got Top Ten honors from
U.S. News and World Report, I haven't seen a single gown that has missing ties! Puts Penn way up there!!
Quote from: artsyamerican on January 11, 2012, 10:30:44 AM
Kelly G made me laugh out loud also! Sometime I minimize some pains...so I don't sound crazy! Oh and when I turn this way...this happens. And sometimes I have electric shock on this side...but then it changes to the other side .... And sometimes my jaw.... All the while they are looking at you ...and the first thing out of their mouth is ...."So...how long have you been on Prozac?" LOL.. BUT FINALLY Thank Goodness I have a very understanding Rheumy!
Thank you,
artsy. Nevermind Prozac, should we be taking Haldol?
Then
quiet dynamics picked up on
Quote from: quietdynamics on January 11, 2012, 11:02:06 AM
Artsy's exchange, above "So...how long have you been on Prozac?"....I always say "Yeah, it was prescribed for overwhelming fatigue. And my hair falling out...go figure?"
;D Nice comeback. Thanks.
Quote from: KellyG999 on January 11, 2012, 12:39:05 PM
We have to keep our sense of humor to keep from going crazy, right? To keep the docs from thinking I am a nutty patient, I have actually tracked my symptoms over time, before and after new meds, then graphed them into fancy charts and diagrams. Impressing the docs isn't easy, but you have to get their attention!!
It may not be wonderful to be one of us alone, but together, what a lively approach to fate and pain.
Love,
Soycoffee
And on other ways to deal with pain, SjoDry, of the blog by the same name, replied to Joe S's recommendation:
Quote from: SjoDry on January 11, 2012, 09:32:10 AM
Joe, Check out Vitacost.com for the Boswellia.
Vitacost has a great selection & competitive prices. (Also, you can read other's comments about the supplement you are considering)
I want to add that iHerb.com has a similar great selection, better shipping rates, and prices that are also competitive. To get a $5 discount on your
first order, you can use the coupon code SIG531.
iHerb does not have "house brands," and I found the VitaCost house brands to be ineffective. iHerb of course carries non-house brand labels that are, in my opinion, not effective. This comparison is based on my experience with two mail-order companies.
-------
Quote from: SjoDry on January 16, 2012, 06:01:52 AM
I loved your pain description! It is so spot on to what we deal with daily.
You have inspired me to blog about that topic sometime ;D
And give each of us and Sjögren's World credit, if you post -- The school teacher in me pops out.
I've looked at your blog, I love the title, and we all wish you luck.
Much success,
Soycoffee