How many folks out there have heard from one doctor or another "you shouldn't be feeling this pain?" and you are REALLY in pain. How do
you get them to listen to you?
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 Unregistered(d) |
How to get your doctor to listen to you as a chronic pain patient? |
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Posts: 0 06/25/02 23:16
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Last Edited By: Sunshine56 07/15/07 15:07.
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Sunshine56 |
Re: pheriphal neuropathy and chronic pain from broken ankle | #1 | ||
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Posts: 41919 06/26/02 19:13
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Hi and welcome to Friends International. You are welcome to join us in our discussion we are having in our forum called Coping with healthproblems.
You are right, I think many of us have heard that....pain is nothing anybody can "see", prove or measure, it is a subjective feeling. Mosken
Last Edited By: Sunshine56 07/15/07 15:05.
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EBGirl |
Re: pheriphal neuropathy and chronic pain from broken ankle | #2 | ||
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Posts: 20143 06/27/02 07:29 Co-Founder |
Hi Redhead! Nice to have you here. We discuss this
subject quite often, hope you join us in the coping forum
found in the white box below, click on the
arrow.
I have suspected for a long time that my pain was more neural than muscular. I believe the muscle pain is a result of a much bigger picture, whether its viral, bacterial or neural. Kiturah our resident med advisor just posted some fairly new info about the recognition of our pain, and also the surgeon general of the US has made a public service announcement recognizing CFIDS as a legitimate dibilitating painful illness. We are getting there... I find arming myself with this info and handing it to my doc along with a timeline of my health problems and what I had to give up along the way [like job, sports, etc.] is helpful. It lets him know I am an informed person and he is the one who is not up to date. You get a little more respect that way. Sad but true. I also had to move on to 4 different docs to find one that listened. Had to do some homework on that too. |
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Cooners |
Re: pheriphal neuropathy and chronic pain from broken ankle | #3 | ||
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Posts: 3 07/03/02 04:12 |
Hi this is my first time here, my friend had put
you in my list of favorites and I thought it was time to
visit. This post caught my eye as I had broken my ankle,
torn the ligament and did something to my knee. Our rug
has several bumps in it and I truly don't remember
hitting one, or tripping, all I remember is the pain and
saying to my boyfriend, My God I think I broke my ankle.
Needless to say after surgery and contacting an attorney,
they told me I would not win my case as I have in
addition to Crohns Disease, the peripahal neuropathy was
"probably the cause" of my fall and
that they would not take the case. I guess I need to
vent. How the HECK would they know!! I know I did not
lose my balance, I know when I am going to lose it, I use
an arm, I cope. I don't know whether to look for another
lawyer or just accept the incredible medical bills that
came along with this. Not only did I have to have
surgery, the ankle was infected because they put a flex
cast on me and by the time I got to a good surgeon I had
blisters under the cast which delayed a much needed
surgery. The bills are sky high- I am not eligible for
medicad my spend down is too great. Do you think it would
be worth my time to pursue this legally? How can anyone
tell if it was me or the rug? Thanks for listening and a
great board I might add.
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kiturah |
Re: pheriphal neuropathy and chronic pain from broken ankle | #4 | ||
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Posts: 7034 07/13/02 09:30 Medical Consultant
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You're right, they say the silliest things.
The best way to get anyone to listen to you, doctor lawyer indian chief or lover, is to speak from the heart, but not defensively and unemotionallly. Be (force yourself) open to what the doc has to say, and you will have a better chance of getting him to hear you. Use reflective listening to verfiy that you heard his message. Don't however allow the conversation to be diverted from the main issue. i know this is very hard, but I have had some communication training and that is it. I'll make up a conversation to see if it would help. K is for Kit and d is for doctor. k: I'm having severe pain and need help managing it. d: I've examined you and you can't be in that much pain. k: I hear that your examination doesn't show the origin of my pain. I don't know the origin of my pain, but it keeps me from falling asleep at night, I wake with it every day, it makes it difficult for me to perform at work. My supervisor is unhappy with the amount of time I have called in sick, and the slowness with which I am completing tasks. I'm afraid I will lose my job because of how bad the pain is. When it is severe I just want to scream or cry, although that is so unacceptable that I don't do it except maybe behind a bedroom door at the very worst. d: I think this is just depression, and an antidepressant will fix you right up. k: If this is depression, what are the other signs of depression that I should have? d: Change in appetite, change iin interest in sex, trouble ssleeping or staying asleep, loss of joy in things. k: My appetite is the same. I hurt too much for sex, I can't falll asleep from teh pain but usually I stay asleep. Sometimes the pain wakes me, some of those I get back to sleep but usually not. I don't get much joy in anything when the pain is so bad. d: Do you feel better first thing in the morning or later in the day? k: first thing in the morning. The longer I'm up the worse the pain gets. d: Well this antidepressant is a potent pain medicine also. Try it first, if it doesn't work, we will do something more. k: how long will it take to kick in? d: one to three weeks. K:Then can we make a plan now for if I'm no better in three weeks? This is very hard to endure, and I can't spend more weeks waitng if this fails. d: allright, I see this is very bad. (he;s faintly listening now, because im listening, but he's not going to budge) Why don't we have you evaluated by a psychiatrist now to make sure he agrees with me. If not I will stop focussing on depression. But if so, I will let him manage your meds if this fails. k: Who do you recommend? d: Dr. So and so, Make an appointment with me for two months. (he thinks he is rid of me) k: May I please have some pain medicine to get me through the three weeks, and for breakthrough pain between nnow and three months. I will phone dr so and so today to make that appointment. I have got to keep my job and I'm not able to work this way. I've been taking 2 extra strength tylenol every four hours til I go to bed, and I'm afraid of what they have been doing to my liver. I take four Advil with each meal, but I just can't stand it. d; Well yu can have x. Don't takemore than x in one day, and I want you off taking it daily in two to three weeks. k: thank you very much. (And really meaning it. He'll feel that part before I pester him one more time. If the first appointment with him was incredibly hard to get and it is incredibly hard to get phone help, I would go on with  May I cal lyou back if Dr. so and so wn't see me in less than a month and
this med is not working, or make an appointment for three weeks which I will cancel if Dr. sos and so can see me by then or if the first antidepressant is
working?
d irritated beyond life by now YEsyes (thinking just go)
Last Edited By: Sunshine56 07/15/07 15:09.
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Unregistered(d) |
pain | #5 | ||
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Posts: 0 09/03/02 14:46
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I HAVE NEVER REALIZED HOW MANY PEOPLE HAVE PAIN.I
NEVER THOUGHT MUCH ABOUT IT UNTIL I WAS VISITING MY
SISTER AS USUAL.I ASKED IF SHE HAD ANYTHING FOR PAIN,YES
OF COURSE I BOUGHT THEM JUST FOR YOU TYLENOL,FOR YOU ARE
ALWAYS HAVING A HEADACHE.SHE WAS RIGHT I NEVER THOUGHT
ABOUT IT TILL SHE SAID THAT.FOR YEARS I TOOK ANYTHING I
COULD GET OVER THE COUNTER.IN DEC.OF 2001 I HAD ACUTE
RENAL FAILURE FROM THIS.I HAD SURGERY IN SEPT OF 99 I DID
NOT MENTION CFS@FS WRONG MOVE,THE OPERATION WAS PERFECT
TO MY DR.,WORLD REKNOWN NURO SURGEON .FOR NO ONE WOULD
BELEAVE THE PAIN I WAS IN,I WAS RELEASED FROM JHH IN A
RECLINING CHAIR BECAUSE I COULD NOT STAND UP OR SIT UP.AT
HOME I CALLED DR. HE SAID TO INHALE AND EXHALE.WITH IN 5
HRS. I WAS CALLING 911.ON ARRIVAL I WAS GONING INTO
CHF.AFTER 2MORE HOSPITALS AND DRS. SAYING IT WAS GONING
TO BE A PAIN MGT.PROMBLEM AND ADMISSION TO FIND OUT THE
PAIN THAT WAS ONLY IN MY HEAD ,WAS MY SPINAL CORD BEING
RAKED.THE WORLD REKNOWN DR. SAID HE NEVER SEEN ANY THING
LIKE IT IN ALL HIS YEARS OF PRATICE MORAL OF STORY,
ALWAYS TELL THEM OF CFS @ FS AS IT CAN CAUSE SERIOUS
PROMBLEMS.YOU TAKE LONGER TO HEAL,YOU GET SICK AND ARE IN
BED FOR A WEEK,ETC.I ALSO BECAME A DIEABETIC BECAUSE OF
80 MILAGRAMS OF PREDASONE A DAY FOR 7 DAYS.I HAD TO QUIT
MY JOB OF 20 YEARS BECAUSE I CAN NOT WORK 69 HRS A WEEK
ANY MORE NOR CAN I WORK AT ALL ANYMORE.SORRY I NEEDED TO
GET THIS OUT.IT WAS VERY TRAUMATIZING.EVERY WEEK AND
MONTH THERE IS SOMETHING NEW WRONG WITH ME.THANKS
MARTHA
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kiturah |
Re: pain | #6 | ||
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Posts: 7034 09/06/02 00:05 Medical Consultant
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Martha, you have been through a lot. no wonder you
needed to get things out.
If I were you, I would sure have a lot of resentment against the medical profession I think. And I would bbe very quick to yell for anything that bothered me now. Well, welcome to our friends. Nice to meet you. I hope things start going better for you. |
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Unregistered(d) |
pheripheral neuropathy and chronic severe pain from broken a | #7 | ||
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Posts: 0 09/11/02 01:06
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well today i went to the specialist again he is
sending me to a nerve damage specialist in Maryland and
then he hit me with this---"if the doctor in
Maryland can't help consider amputation" OH MY
GOD i would rather be addicted to some pain killer (which
no doctor has given me) rather than lose my foot -- you
kind people please respond thanks Lynne
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kiturah |
Re: pheripheral neuropathy and chronic severe pain from brok | #8 | ||
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Posts: 7034 09/11/02 01:46 Medical Consultant
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Lynne, I would have missed this in introduction if
Sunshiney Mosken hadn't pointed out this. You might move
over to coping where most people look.
This guy is an idiot, and deserves to be reminded of it. "You would amputate my leg before you would give me a trial of pain medicine? Isn't that malpractice?" Of course you are into hostility there, but he really deserves it, especially as amputation almost never works! Geez, what an idiot. I forget, why didn't they do nerve blocks? Or a spinal implant, if he is thinking of amputatoin. At any rate, it sounds like time to definitely be looking for a new doc if you can't communicate better with this one. If it is hard to get another doc, I would try that statement on him, along with something about JCAHO ruling that pain must be assessed and treated, and people losing malpractice cases for failing to treat pain. But as I said, that is because this guy is threatening to amputate you before he will give you pain medicine. Good grief. A high dose neuropathic medicine mixed with an opiate might help some. Plus adjunctives. But nerve blocks should absolutely have been considered, long before amputation. Oh, I am so mad at that man. I dont recommend expecting no pain to those in serious pain, just expecting manageable instead of unmanageable pain. Lynne, I am so sorry this is happening to you. |
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ponolops |
#9 | |||
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Posts: 1430 07/15/07 18:35 Quasimodo
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Reading all this and also having a dear friend in America, I can only say "thank heavens I live in England!" It must be dreadful to know you have to go to court to 'prove' you weren't responsible for a fall or accident, just so you can get medical insurance. Two years ago, I was walking in Totnes (a local town) with my husband and suddenly I was flat on my face on the pavement. I honestly don't know what happened. One minute I was walking, then slap!!!!!! I was full out, arms outstretched, feeling shocked and stupid. Passers-by were fantastic. Two men took over and when told by hubby that I had a chronic back condition, kept me flat and bit by bit, helped me move everything until it was obvious I was shaken, but OK. I staggered back to our car and hubby drove me home. I was stiff and sore next day but with no broken bones or visible bruises, I felt lucky indeed. Then, exactly a week later, my left knee, which had been operated on when I was 19 'exploded!' I don't know how else to explain it but it snapped, then went black, swelled to massive proportions and I couldn't move. The pain was excruciating. The be all and end all of this story is I was taken to hospital by ambulance, as I also hurt my back when my leg 'went' and had to spend the night as I was in so much pain, they didn't dare let me leave. I had strapping on which I had to leave for two weeks and I had to move around with crutches. When the strapping came off, my knee was a strange shape, as if a muscle or tendon had snapped and to this day I have a painful lump there. It still hurts. If I had been American, I would have had to try to blame the council for my trip but I knew it wasn't anybodies fault but my own. Clumsiness and accidents do happen and although I know the 'blame anyone but myself' culture is already here, I hope (pray) that we don't get any worse as it's a terrible way to live. Penny
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Mosken
California US
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