chronic pain

March 8, 2008

am cross posting this as I found it valuable

I really can relate.... have been told many times there is nothing wrong etc etc etc.... all in the mind etc etc etc.....

The Impact of Not Being Believed

http://chronicfatigue.about.com/b/2008/03/03/41.htm

"I just wish someone would believe me!"

How often have you said or thought that? Disbelief or skepticism about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) is something most of us are all too familiar with, and if you've experienced it yourself, you don't need a study to tell you how painful it can be.

Wouldn't it be great, though, if someone would tell your doctors how detrimental it is for them to dismiss your pain? I was delighted to see a chronic pain study out of Wales that does tell them. (While this study was only on chronic pain, I don't think it's a stretch to say the findings would apply to fatigue and other "invisible" symptoms.)

Of a group of 8 people in the study, only 2 said they had no problem getting health-care workers to accept their word on pain, and those two people also had visible disabilities. Stories from the other 6 included doctors denying pain medication, shouting at them for taking more pain killers than prescribed, and even blatantly saying, "I don't believe you," and walking out.

Those actions left them with feelings that (no surprise to us!) included anger frustration, isolation, depression and thoughts of suicide.

The study concludes that doctors and other health professionals just need to believe what their patients say when it comes to pain, bringing up a definition of pain coined 40 years ago by Margo McCaffery, a chronic-pain nursing consultant: "Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does." The logic is simple, but the implications to our treatment would be profound.

The final paragraph sums up what practitioners can do to avoid all these problems:

These simple means are: active listening; being non-judgemental; accepting the pain experience as credible as recounted by patients; and thus showing to patients that the relationship is based on caring and empathy. While these may be considered mundane and accepted practice, it is vitally important not to overlook the impact they have on patients with chronic pain.

Personally, I've been very fortunate. While I've seen several doctors who had no clue what was wrong with me, the only ones who've discounted my pain have been an ER nurse and a dentist. What have you experienced? How have you dealt with it? Have you found any solutions? Please share your stories by leaving a comment here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum.

http://chronicfatigue.about.com/mpboards.htm

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March 8, 2008

At 04:17 AM 3/8/2008, you wrote:

First, I must say, that while I know the problem is real, the size of the

study is awfully small - 8 people, come on. That's not a study, that's

talking to people.. Part of the problem is that too many people go to

doctors to get pain medication when there is nothing wrong with them. All

they want are the drugs. I've suffered with chronic pain for many

years. I've seen a pain specialist for more than 10 years - on

different ends of the country. One GP I went to, though, said he would

never give me the medication I was getting from the pain doc. I told him,

that's why I wouldn't ask him, nor would I be coming back to him. On the

one hand, you have people with valid complaints, on the other, people who

do not. If anyone here suffers with chronic pain, I would recommend you

going to a pain specialist, if at all possible. With things like

fibromyalgia, a neurologist is often good. However, even the pain

specialists have a difficult time treating the pain of that disease. Many

things that work for other causes of pain, don't work for that.

Something else people need to keep in mind - there is the constant hue

and cry about medication and, particularly, addictive medications, which

are usually the type one needs for chronic and/or severe pain. Doctors

become afraid to prescribe certain things, because of their potential for

abuse. And, of how popular they have become with recreational drug users.

Things get taken off the market for the same reasons. Some of the best

medications for pain can rarely, if ever, be gotten anymore. The next

time you see press about a certain medication that is " killing "

people, or being abused, valid users of these drugs need to speak up, or

another effective drug will be taken off the market. Sure, these drugs

can be addictive, and one's body builds up a tolerance with continued

use. But, studies show and those who work with patients know, people in

pain don't get addicted in the same way as people who use those drugs

recreationally do. Those who have a real, valid need for such medications

shouldn't be punished because people who don't need them abuse

them

Pain is very subjective: what causes intense pain in one, can be barely

an itch to another. Plus, there are a number of conditions where the

cause of pain is unknown. After having been on very strong pain

medication for some time, the day after back surgery, some nurse decided

I was getting to much pain medication, and drastically reduced the amount

I was getting. She had not bothered to even check my chart, in

which my pain doctor had written the orders. Nor had she noticed, I had

been taking a morphine-like medication for several years, with the result

that what may have worked for someone else, had no effect on me. After

frantic calls to my DH and the doctor, the issue was resolved in about a

half a day. However, I essentially went with out any pain medication for

that time - the day after back surgery. It should never have happened,

and she not only got transferred to a different unit on a different

floor, but almost lost her job because of her actions. Pain is now one of

the criteria every hospital must address - just like whether you have a

temperature, your blood pressure is too high, etc. If they don't, they

run the risk of losing Federal funding.

Lynn

am cross

posting this as I found it valuable

I really can relate.... have been told many times

there is nothing wrong etc etc etc.... all in the mind etc etc

etc.....

The Impact of Not Being Believed

http://chronicfatigue.about.com/b/2008/03/03/41.htm

" I just wish someone would believe me! "

How often have you said or thought that? Disbelief or skepticism about

fibromyalgia (FMS) and

chronic fatigue syndrome (CFS or

ME/CFS) is something most of us are all too familiar with, and if

you've experienced it yourself, you don't need a study to tell you how

painful it can be.

Wouldn't it be great, though, if someone would tell your doctors

how detrimental it is for them to dismiss your pain? I was delighted to

see a chronic pain study out of Wales that does tell them. (While

this study was only on chronic pain, I don't think it's a stretch to say

the findings would apply to fatigue and other " invisible "

symptoms.)

Of a group of 8 people in the study, only 2 said they had no problem

getting health-care workers to accept their word on pain, and those two

people also had visible disabilities. Stories from the other 6

included doctors denying pain medication, shouting at them for taking

more pain killers than prescribed, and even blatantly saying, " I

don't believe you, " and walking out.

Those actions left them with feelings that (no surprise to us!) included

anger frustration, isolation, depression and thoughts of suicide.

The study concludes that doctors and other health professionals just need

to believe what their patients say when it comes to pain, bringing up a

definition of pain coined 40 years ago by Margo McCaffery, a chronic-pain

nursing consultant: " Pain is whatever the experiencing person says

it is, existing whenever the experiencing person says it does. " The

logic is simple, but the implications to our treatment would be profound.

The final paragraph sums up what practitioners can do to avoid all these

problems:

These simple means are: active listening; being non-judgemental;

accepting the pain experience as credible as recounted by patients; and

thus showing to patients that the relationship is based on caring and

empathy. While these may be considered mundane and accepted practice, it

is vitally important not to overlook the impact they have on patients

with chronic pain.

Personally, I've been very fortunate. While I've seen several

doctors who had no clue what was wrong with me, the only ones who've

discounted my pain have been an ER nurse and a dentist. What have you

experienced? How have you dealt with it? Have you found any solutions?

Please share your stories by leaving a comment here or in About.com's

Fibromyalgia &

Chronic Fatigue Syndrome forum.

http://chronicfatigue.about.com/mpboards.htm

March 8, 2008

Look up the website Deflame.com and see what the explanation for inflammation is.

Also, fibromyalgics should probably be on vitamin D at a higher dose. Cut out grains

per the website advice, and try the supplements or some that are equivalent. Might

be helpful. Also, FIR saunas.

jp

At 04:17 AM 3/8/2008, you wrote:First, I must say, that while I know the problem is real, the size of the study is awfully small - 8 people, come on. That's not a study, that's talking to people.. Part of the problem is that too many people go to doctors to get pain medication when there is nothing wrong with them. All they want are the drugs. I've suffered with chronic pain for many years. I've seen a pain specialist for more than 10 years - on different ends of the country. One GP I went to, though, said he would never give me the medication I was getting from the pain doc. I told him, that's why I wouldn't ask him, nor would I be coming back to him. On the one hand, you have people with valid complaints, on the other, people who do not. If anyone here suffers with chronic pain, I would recommend you going to a pain specialist, if at all possible. With things like fibromyalgia, a neurologist is often good. However, even the pain specialists have a difficult time treating the pain of that disease. Many things that work for other causes of pain, don't work for that.Something else people need to keep in mind - there is the constant hue and cry about medication and, particularly, addictive medications, which are usually the type one needs for chronic and/or severe pain. Doctors become afraid to prescribe certain things, because of their potential for abuse. And, of how popular they have become with recreational drug users. Things get taken off the market for the same reasons. Some of the best medications for pain can rarely, if ever, be gotten anymore. The next time you see press about a certain medication that is "killing" people, or being abused, valid users of these drugs need to speak up, or another effective drug will be taken off the market. Sure, these drugs can be addictive, and one's body builds up a tolerance with continued use. But, studies show and those who work with patients know, people in pain don't get addicted in the same way as people who use those drugs recreationally do. Those who have a real, valid need for such medications shouldn't be punished because people who don't need them abuse themPain is very subjective: what causes intense pain in one, can be barely an itch to another. Plus, there are a number of conditions where the cause of pain is unknown. After having been on very strong pain medication for some time, the day after back surgery, some nurse decided I was getting to much pain medication, and drastically reduced the amount I was getting. She had not bothered to even check my chart, in which my pain doctor had written the orders. Nor had she noticed, I had been taking a morphine-like medication for several years, with the result that what may have worked for someone else, had no effect on me. After frantic calls to my DH and the doctor, the issue was resolved in about a half a day. However, I essentially went with out any pain medication for that time - the day after back surgery. It should never have happened, and she not only got transferred to a different unit on a different floor, but almost lost her job because of her actions. Pain is now one of the criteria every hospital must address - just like whether you have a temperature, your blood pressure is too high, etc. If they don't, they run the risk of losing Federal funding.Lynn

am cross posting this as I found it valuable I really can relate.... have been told many times there is nothing wrong etc etc etc.... all in the mind etc etc etc..... The Impact of Not Being Believedhttp://chronicfatigue.about.com/b/2008/03/03/41.htm"I just wish someone would believe me!" How often have you said or thought that? Disbelief or skepticism about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) is something most of us are all too familiar with, and if you've experienced it yourself, you don't need a study to tell you how painful it can be. Wouldn't it be great, though, if someone would tell your doctors how detrimental it is for them to dismiss your pain? I was delighted to see a chronic pain study out of Wales that does tell them. (While this study was only on chronic pain, I don't think it's a stretch to say the findings would apply to fatigue and other "invisible" symptoms.) Of a group of 8 people in the study, only 2 said they had no problem getting health-care workers to accept their word on pain, and those two people also had visible disabilities. Stories from the other 6 included doctors denying pain medication, shouting at them for taking more pain killers than prescribed, and even blatantly saying, "I don't believe you," and walking out. Those actions left them with feelings that (no surprise to us!) included anger frustration, isolation, depression and thoughts of suicide. The study concludes that doctors and other health professionals just need to believe what their patients say when it comes to pain, bringing up a definition of pain coined 40 years ago by Margo McCaffery, a chronic-pain nursing consultant: "Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does." The logic is simple, but the implications to our treatment would be profound. The final paragraph sums up what practitioners can do to avoid all these problems:

These simple means are: active listening; being non-judgemental; accepting the pain experience as credible as recounted by patients; and thus showing to patients that the relationship is based on caring and empathy. While these may be considered mundane and accepted practice, it is vitally important not to overlook the impact they have on patients with chronic pain.Personally, I've been very fortunate. While I've seen several doctors who had no clue what was wrong with me, the only ones who've discounted my pain have been an ER nurse and a dentist. What have you experienced? How have you dealt with it? Have you found any solutions? Please share your stories by leaving a comment here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum. http://chronicfatigue.about.com/mpboards.htm

Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.7/1319 - Release 3/8/2008 10:14 AM

March 8, 2008

At 12:35 PM 3/8/2008, you wrote:

Thanks for the info, but I don't have fibromyalgia - I think some of the

people on the group do, though. I've got MS (multiple sclerosis,

degenerative disk disease, and a couple of failed back surgeries. Had I

known then what I know now, I doubt if I would have had the surgeries.

Then again, desperate people do desperate things. The chronic pain comes

from all three of the above. Unfortunatley, unless I'm unconscious, I've

never had anything that takes the pain away - just makes it

bearable.

Lynn

Look up the website Deflame.com and see what

the explanation for inflammation is.

Also, fibromyalgics should probably be on vitamin D at a higher

dose. Cut out grains

per the website advice, and try the supplements or some that are

equivalent. Might

be helpful. Also, FIR saunas.

jp

At 04:17 AM 3/8/2008, you wrote:

First, I must say, that while I know the problem is real, the size of

the study is awfully small - 8 people, come on. That's not a study,

that's talking to people.. Part of the problem is that too many people go

to doctors to get pain medication when there is nothing wrong with them.

All they want are the drugs. I've suffered with chronic pain for many