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Question on rating your pain

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BrentE1961
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Joined : Jan 2009
Posts : 47
Posted 4/28/2009 10:21 AM (GMT -8)
One question I have for others is the whole "rate your pain" thing. I feel that I would have to step on a land mine to warrant a 10. When I say 3 or 4, I feel that the doc ought to know that means I am hurting and need relief, but he seems to think I mean it isn't very bad. Do most people use higher numbers? If you say you are at a 3 or 4, do you expect the doc to offer help or not? On most visits I say I am at a 2 or so.
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PAlady
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Posts : 6795
Posted 4/28/2009 10:41 AM (GMT -8)
Brent,
You raise an important point. You and your doctor have to be on the same page, literally, about this for it to be relevant for you. So you might want to ask your doctor what pain scale he/she uses (for an actual copy of it) so you know what "4" means, for example. Or you could use a pain scale, and take a copy in and give it to your doctor (might be a more reliably strategy) so your doctor knows what you mean. There is some debate about the usefulness of pain ratings because people rarely clarify what the number means, just as you're saying. And it can make all the difference in the world regarding how your pain is treated. But you also have to be honest with your doctor about just how much you're hurting, too!

Hope this helps.

PaLady
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Tony McGuire
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Joined : Feb 2009
Posts : 483
Posted 4/28/2009 10:45 AM (GMT -8)
7 or 8 is today. The whole bottom of my feet feel like my shoes are stuffed with hot lava.

10 is that a schedule of muscular guys has been set up. These guys rotate around with bats, beating the tar out of the bottoms of my feet. (Sorry, this happens with my feet so easy to describe.) At night, the schedule changes and the guys rotate with buckets of boiling water, pouring the water down my legs from the knee down to the feet. There may be moments where they aren't pouring or beating, but you don't have time to notice while laying sobbing from the pain.

10 is the above, and can be on one or more areas of the body. At least, that is my experience and what I describe to the doctors.
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Tony McGuire
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Posts : 483
Posted 4/28/2009 10:49 AM (GMT -8)
Yes, PAlady.

I find it funny that my doctors have yet to provide a pain scale even though I've asked each one for their scale. "Well, you know. Just divide up the worst to the least, and attach a number."


So I provide the 7 & 10 definitions, and let them deal with the tweeners.
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BrentE1961
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Posted 4/28/2009 10:51 AM (GMT -8)
Tony - that sounds awful. I hope you get relief from your meds!

My lower back always hurts - a dull ache that never goes away, and it is intense enough that I cannot simply block it out of my mind - it intrudes on every thought. That is my "2". When it gets bad it feels like somebody stuck a meat fork deep into my lower back, slightly left of center and just above the hipline, and keeps vigorously wiggling that fork. It is worse when standing or walking, and it will drive me off of my feet fairly quickly. That is my "4 or 5". When the disc first herniated and I had the fire running all the way down my leg and had to crawl to the bathroom (literally), I called that a "7 or 8", but that was before I was a CP patient (still under care of neurosurgeon and thought the surgery would fix everything - what a nice illusion).
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Becoming undone
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Posts : 927
Posted 4/28/2009 12:22 PM (GMT -8)
I use the wong-baker pain scale...they have it most ER's...those little faces can look like mine (it's cuz of the prednisone)...
www.mamc.amedd.army.mil/Clinical/standards/pain_pro.htm
I found another place that explains other pain scales...
www.tipna.org/info/documents/ComparativePainScale.htm
So I can see why the doc doesn't think it's that bad...a 2 is stated as"Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people react differently to this self-test." Personally, I think yours is way above a two...I hope this helps with better communication with your doc...
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PAlady
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Posts : 6795
Posted 4/28/2009 1:32 PM (GMT -8)
Becoming,
Thanks for providing the links. I was lazy and figured someone would come along and find some! LOL

Tony - love your description (not the fact you have to feel it, just the description). Sometimes I think if we wrote our own scale - keeping it within reason - it might more accurately tell the doctor what it's like. Reading your description, Tony, I get a good "feel" for it.

Also important to me is the notion of chronic or acute pain. Even a low level pain that never goes away can be worse than a sharp pain that come now and then. And I also remember when my doctor asks about my pain that I end up asking which pain - the pain in my lower back? buttock? SI joint? lower buttock? the pain that shoots down my right leg all the time? the pain that goes down my left leg some of the time? and then there are the pins and needles in both feet...it's so much more complicated than a number, isn't it? But a doctor will medicate based on a number. And Brent another piece is how it limits your activities. It's also important to tell a doctor the details there.

PaLady
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Pete trips again!
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Posts : 1899
Posted 4/28/2009 3:45 PM (GMT -8)
PA, Feeww! Somehow I got out of work today w/o killing anyone! I agree w/ you on this pain thing> Which pain are we talking about here? At any given time I may have 2's & 3's all over my body in different places if I concentrate on them even w/ my meds. Every dam thing is hurting all the time but thats me and I don't think things will ever change. But usually we are talking about the biggies! the ones that hit 5 and above fairly regularly. I'm sure I've had #10's in my life but I don't seem to remember them now. I do remember the 10 I had after my neck surgery when none of the meds the gave me helped at all. I like Tony's descripition of the red hot lava, yea, thats what it was like! Last night after I hurt my neck at work I was at about a 7 or 8 and it scared the hell out of me but right now it's back down to a 3 or 4 where it's been for a couple weeks now! I keep waiting for it to get better but like so many of you have told me, I'm not giving it a chance to heal properly. I guess the thought of being out of work scarres me more than the pain in my neck and thats wrong. I am thrying to change that attitude though. Geeze, sorry for getting off the pain scale thing. Yes, I believe one person's 9 may be another's 3 but how can we ever know. Until they invent some sort of pain meter which they probably will some day, our pain is what we say it is! 10>3>8>1 it's all relative! Drama kings like me surely exaggerate the numbers where I'm sure some of the worst sufferers here surely do not! So for now, good luck getting the right numbers across to your doc's! It's all we gots!
Pete
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modelmaker
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Posts : 168
Posted 4/28/2009 4:26 PM (GMT -8)
I had a discussion with my pain doc about the 0 to 10 thing. My point was that it is so subjective how could he relate to it. Two interesting comments from the doc.: First, he agrees that the number scale is highly subjective from person to person and also in the assumed definition of the numbers. The only one they can agree on is 10 beling "the worst pain you can imagine or have experienced." Like natural childbirth w/o meds, passing a kidney stone etc. For all the numbers from 1 to 9 the value seems to be in watching a trend. As long as 5 always means the same thing to YOU then the doc can judge your progress on a relative basis. Second, it matters not that your definition of a 5 or 7 or whatever is different from others. It matters if you go from 7 to 5 or 3 and he can relate that to medication change or some procedure.

In my experience, reported pain levels above a 5 and rising attract a whole lot more attention than a 3 or less. I'm not suggesting over-reporting your pain, just be fair and consistent. If you have to crawl to the bathroom that, in my view, is not a 5 or less!

Hope this helps a little since the 10 scale is going to be used forever.

Better days are ahead.

Modelmaker
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golitho
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Posts : 1670
Posted 4/28/2009 8:52 PM (GMT -8)
I always find it funny when a doctor compares pai n to childbirth. I had 3 kids, the first with a shot of pethidine but the second two au natural and I found the pain "good pain" and definately not a 10 because there's a child at the end of it. I was always able to breathe into it and because its in waves very manageable. Pain from injury is immediate very hard to breathe into and relax, dislocated shoulder quite sore. Infection like pneumonia hurts to breathe and you're so sick, coughing ...forget it. But CP pain is relentless, exhausting, ranges from one activity to another. I often can't get up if I bend down for something. Found myself laughing in pain, tears down my face at the stupidity of my situation, stranded on the floor until I can recover enough to roll up onto my knees or whatever. I find it impossible to rate the different types of pain but I'll look at that website.

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Tirzah
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Posted 4/28/2009 8:58 PM (GMT -8)
My PM does provide a Pain Scale for me to use. I can't find Andrea Mankowski's original web site, but her scale is referenced in numerous places, so anyone interested in more info can probably just google "Mankowski Pain Scale". I've posted the actual scale below.

If I am at a 5 or higher I expect my PM to do something. At a 7/8, he usually offers to do injections. At a 9 we re-visit my pain management plan & usually make some kind of changes to one or all of: PT, meds, injections, frequency of office visits, activity level, frequency/type/duration of massage appointments, alternative therapies.


Mankowski Pain Scale

0 Pain Free.

1 Very minor annoyance - occasional minor twinges.

2 Minor annoyance - occasional strong twinges.

3 Annoying enough to be distracting.

4 Can be ignored if you are really involved in your work, but still distracting.

5 Can't be ignored for more than 30 minutes.

6 Can't be ignored for any length of time, but you can still go to work and participate in social activities.

7 Makes it difficult to concentrate, interferes with sleep You can still function with effort.

8 Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 Unable to speak. Crying out or moaning uncontrollably - near delirium.

10 Unconscious. Pain makes you pass out.
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BrentE1961
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Joined : Jan 2009
Posts : 47
Posted 4/29/2009 7:23 AM (GMT -8)
Thank you everyone for the input. Looking at the Mankowski scale above, it is clear that I am under-reporting my pain. When I say "2" or "3" I should be saying "5" or "6" based on the inability to ignore the pain.

I guess I need to speak to my PM doc and show him the scale, and ask him if I should stick with my old way, or use the scale. One way or another I need to gently let him know that he has not offered any help when I am hurting.
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mom9mom
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Joined : Sep 2008
Posts : 489
Posted 5/1/2009 6:26 AM (GMT -8)
Brent I am also like you with the mankowski scale when I say it is a 3 or 4 with the scale above it is more of a 6 and when it is bad it is a 7 to 8.So I would like to thank frances very much for giving us the scale in words that we all can relate to.
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Chartreux
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Joined : Aug 2006
Posts : 9664
Posted 5/1/2009 10:31 AM (GMT -8)
I liked the way Pete said this..for me a 10+ was my tooth going bad last year and needed a root canal,
the pain was so bad from that it over shadowed everything..but my low back pain is usually 7 to 8, early it was an 8,
but I just got home from PT and it's more of a 7, but will be up again soon cause as the day wears on
so too does the pain....
Good luck in your quest Brent..
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Tony McGuire
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Joined : Feb 2009
Posts : 483
Posted 5/1/2009 3:48 PM (GMT -8)
Chart,

You bring up a root canal.

Well, I had mine WITHOUT pain killer...before or after. He drilled by hand until he hit nerve and I went through the roof, closed it and told me to 'come back next Friday'; 5 Fridays in a row.

But that was level 10 for a VERY short period compared with what I deal with now (back then, I left his office and bought a 12 pack, downed 4 coTylenols (not the same as pain killer injected into the gums) with a couple of cans of beer. At that point I began coming back from the pain, AFTER sleeping). Now, it would be ALL DAY if I didn't have my meds to rely on. I know, because WITH the meds I am at a 5-7 ALL DAY. I would also not likely sleep much or often without my pain meds. The two times I've been stuck where I couldn't take or didn't have meds, I simply laid and cried, sleeping in 15-20 minute 'breaks'.

So, while a slice in time might correlate between the two, life wouldn't.
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flower123
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Posts : 856
Posted 5/1/2009 5:07 PM (GMT -8)
Hi. I'm at a 7-8 all day long. When I go up to a 9, I have a lot of trouble breathing. I do moan a lot when my pain is that high.

But, Brent--I think that you should let your doctor know what your pain is because hopefully then he'll treat it! It's hard sometimes for me to be bluntly honest about my pain, but I know what I go through every single day and I know that it's important to be honest b/c I deserve to have somewhat of a functional life, as does everyone else in pain.

This was a great thread--very helpful b/c I think that there are pain patients that do underrate their pain.

Flower
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Pamela Neckpain
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Joined : May 2008
Posts : 1821
Posted 5/2/2009 11:51 AM (GMT -8)
Mankowski Pain Scale:

Thank you for posting that Frances.
I'm going to type it out and give it to my pain doctor so he can understand me
better.
I use a nine and ten occasionally and it is innacurate, but the rest of the time I've
reported my pain pretty much as she suggests. I'm usually in about 8. Terrible.
I've had it for so long I just think it's normal.

Pamela
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IronCladDaisy
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Joined : Jan 2008
Posts : 45
Posted 5/2/2009 7:01 PM (GMT -8)

Thanks so much for that pain scale Frances!

Like Brent, I find I really have a tendancy to underreport my pain. Generally I find doctors that give me this really vague "0 is no pain and 10 is the worst pain you can possibly imagine." I'm in a lot of pain, but I have a pretty darn vivid imagination! So I've been reporting something like a 4, even though according to the Mankowski Pain Scale I'm pretty consistantly at a 7.

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Chutz
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Posts : 9477
Posted 5/2/2009 9:13 PM (GMT -8)
Great bunch of ideas and links. This is a needed thread! A couple of ideas went through my foggy head. First, I think most ladies have an easier time rating their pain because they have a common point of reference...childbirth! lol I had my kids without anything...au natural! So that does give me a good feeling for what a 10 is. This is not to say that men don't have any idea of a 10, just that many women have this one sort of 'built in'.

Also, if you want a clear way of relating your pain on a daily basis, use a pain journal for a while....maybe a couple of months or so. Here's a link to a journal page you can copy for free...

http://www.painfoundation.org/Publications/TargetDailyLog.pdf

Make a copy for each day and fill them in before you go to bed. I stapled each week's worth together or you could punch them and put them in a binder. Whatever works for you. Then, each time you go to your primary doc and/or your pain doc take it along and ask them to read it. Not only will they get a clearer view of your pain level, but they will see you are very serious about getting respectful and productive treatment. It will also give you an idea of things that trigger your pain spikes.

Good luck and keep us posted,
Chutzie
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Pamela Neckpain
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Posts : 1821
Posted 5/3/2009 2:27 AM (GMT -8)
When I go to my pain doctor, I fix my hair carefully and do all the rest of that stuff. I get some
adrenalin whipped up and I am better. This act can go on for about three hours. I do the same
thing when I visit with my daughter and grandaughters. I did it when my husband when to the hospital
in the middle of the night.

So it seems that if I absolutely MUST put on a show, I can. It's difficult and I always wonder if I
can do it. The answer is yes, I can almost always do it.

I think it's important to look your best when you go to the doctor. If he thinks he's not making
progress with you as a patient, he could suggest that you go elsewhere and things could get much
worse.

I asked for a slight raise in my medication (This could have caused the itch) My doctor just said,
"Sure, it will help." I always fill out a questionnaire before I see the doctor. On the written
pages, he will find the true me and my true pain.

Pamela Neckitchy

Since I didn't have much pain giving birth, I can't call that a #10! I think a lighted cigarette held
against the skin would be a #10. I have never had a #10. I have had a #9 one time. (My shoulder)
I'm usually at #7 or #8 unless I have a strong distraction. It's almost impossible to find that much
distraction in all my waking hours.

Post Edited (Pamela Neckpain) : 5/3/2009 4:30:25 AM (GMT-6)

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straydog
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Posted 5/3/2009 11:03 AM (GMT -8)
Brent very good post. My old pain dr used the 1-10 which I thought was useless. However, my new pain dr is a retired neurosurgeon and she has typed up her very own pain scale with much detail that involves what you can do or not do on a daily basis, with or without help, what the papin is like with and with our pain meds and how they effect your pain. I stayed in the 8-9 area with the old dr but on her scale I am at a 4 now. When I first saw her my numberwas a 7 which is high on her scale. She says by using this type of info it tells her alot about the pain and I have to agree with her whole heartedly. She says sometimes you could be inbeteen on the numbes too. Every time you go in the nurse hands you the sheet to read and then you tell her what you are based on the previous week. Susie
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PAlady
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Posts : 6795
Posted 5/3/2009 11:37 AM (GMT -8)
Susie,
Your doc sounds like someone who really "gets" pain (shouldn't all pm docs??) and how it affects one's life. I'd love to see that pain scale; probably includes your pain's effect on ADL's (Activities of Daily Living) which can be important not only for medical but for legal purposes.

Also just wanted to add a reminder that not all of us women have been through childbirth!

PaLady
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White Beard
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Posts : 3740
Posted 5/3/2009 4:59 PM (GMT -8)
I know I am setting my self up for a lot of pain and who know what else, but with tongue in cheek I will say it anyway I was there when both my children were born, I didn't think it was so painful! smhair

One thing I do seriously want to comment on is the pain scale, I worked on the Oncology Unit and we often had Sickle Cell Anemia patients on our unit,they are probably one of the most difficult patients to assess for pain, as their pain changes minute by minute. Anyway we always used the 1 to 10 pain scale and also the faces, I hated the pain scale charts!  Patients often under rated their pain, and to me it just added to the confusion as to how the patient was really feeling! I personally liked to just sit and talk with them about their pain as I was doing my patient evaluation (assessment), I would watch them closely as they would move, was there guarding? ( being protective of and area)what about their facial expressions?, (grimacing or wincing even crying or laughing)asking them to describe their pain to me.( in deatail) I know that method takes time but in the end it is worth it, and after finding out what the patient is really feeling then talking  with the patient about the pain scale and together putting down a number that was accurate and was at least close to what their pain level is for that time. I myself  have a real hard time describing my pain level to my Doctor using the scale, I also often under rate my pain. I do wish Doctors and Nurses had more time to spend with their patients, so they could get a mor accurate picture of the patient they are treating. Treating us more like who we really are, a real person that is in pain, not just some patient in a file with number for their pain!


White Beard

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IronCladDaisy
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Joined : Jan 2008
Posts : 45
Posted 5/3/2009 5:40 PM (GMT -8)

Thanks for the pain log link too, Chutz! I've been looking for something like that.

This is defniitely an area I need improvement on, since I have a hard time describing my pain. And I tend to be pretty stoic, which I think makes it hard for people to take me seriously when I tell them I'm hurting. Drives me nuts when my doctor tells me he doesn't think I'm doing that badly because I look fine rolleyes   Sheesh.

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straydog
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Posted 5/3/2009 6:52 PM (GMT -8)

PaLady, yes her pain chart does question you about your ADL's as this issue is very important to my dr, she says it tells her alot about a patient. This chart was typed on an old typewriter and is covered in plastic of some sort to protect it and there is one in each room. I told her the 1st time I saw her and was given the chart to review to rate my pain that I was totally blown away with her pain scale. She laughed and said yes, its much better than the frowns and the smiley faces. It is so precise in each number. I told her for the 1st time I felt like someone really knew the extent of how much pain I was in and how pain had affected my life by looking at her chart. Just amazing. To answer your question, yes she does understand pain from every angle as far as I am concerned.

Last week was pump refill appt time and I got another increase in my pump which has helped. Our weather lately has been with so much rain and the barometer is jumping up & down like a mexican jumping bean which really affects our pain. Plus, I had done some other things that increased the pain and she said this is to be expected. She says as a person gets to feeling better they will do more and the pain will return and then we just do increases till we hit the magic number that holds the pain down for longer periods of time. Even with all the increases she has given me I am considered to be at a low dose.

After her nurse finished with my pump she came back and we were talking about how pain can destroy a person's life when not treated properly by the drs. She said "oh, I remember very well the shape you were in the first time you came to me". She said I look at you now and can tell such a change in your pain as it shows. I said well, not only can you and I tell but anyone thats been around me alot and knows me can tell a huge difference in how I feel. I told her how much my activity levels have increased and therefore because of that I get into trouble from overdoing and she said thats just human nature. She said that in time we will reach my magic number that will hold the pain down for longer lengths of time, but for now I am still considered on a very low dose and she knows this is important for me to know. She then asked me a question that really took me by surprise. She said well now that you are doing so much better what you think and feel about your prior PM dr. Of course she has an entire copy of his chart from his office on me. I said well, I truly thought I was a pump success because in the bginning the pain was less, however, over the past 2 yrs the pain was getting much worse and I was getting very few increases in my pump, which in turn left me with alot of pain. Some days I could deal with it half way and other days I couldn't. But, now thanks to you and your knowledge of pumps and medications yu have shown me how much I really did suffer. I said it would be very easy for me to become bitter about the 2 yrs of life I lost thanks to him not being a good dr when all along I thought he was. For this I do become mad, but I will not allow myself to dwell there very long because its not worth it to me. I have more important things to do with my life than go down that road. I told her one thing I had learned and I did learn it the hard way, was these anesthesiologists turned PM drs are not what its cracked up to be. There are far too many under-educated drs out there practicing pain mgt that don't have a clue. They can take a patient so far with treatment and then its like they run into a brick wall and cannot and will not go any further in helping the patient. Its my belief they are just not educated enough and I don't know what the fix is for that. My dr looked at me and smiled real big and simply said "I will not disagree with you one bit on that statement". She told me my very own dr many times called and consulted with her on his patients because he had hit that brick wall of not knowing what to do with a patient. She & I both knew ethically it would have been very unprofessional on her part to look at me and say I agree with you about these drs, but instead she handled it very well by agreeing with me the way she did. I had to laugh because she then said you understand that I did not disagree with you on your statement. When the nurse and her are finished with me she always stay in the room with me and we talk about various things, anywhere from the DEA on. She and I both know many of the same drs from when I worked. I told her about reading in the paper recently that they finally took away the license of an old dr here that was nothing but a pill pusher. All of his patients were cash paying and he doled out the script for any kind of a med they wanted, but you had to pay cash. She says the DEA is notorius for calling a drs office and acting like they are a patient. She said they will call and ask how much she charges for an office visit. Her staff always tells anyone calling that she does not accept cash payments from a patient.She then went on to tell me the biggest thing the DEA busts drs on is their recod keeping of prescriptions they write to their patients. I was floored by this. I hope everyone had a nice dry weekend. Mine has been wet & soggy....Susie

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