MYTHS OF CHRONIC PAIN--do they think I see it that way and myths of my danged brain!

Chronic Pain's Common Myths

Approximately 50 people with chronic pain were asked what they thought were some myths about chronic pain. Here are some of their answers, sorted into categories. I've added a few that I have heard others express over the years.

1. Where it is

• It's all in your head
• It's purely physical.

2. Doctors

• Medical science can cure anything. If they can put a man on the moon, they can fix my pain.
• If you are not getting a cure, someone is holding out on you.
• The doctors don't care, or else they must have missed something. Maybe both
• If the doctors won't explain something properly, they are hiding something
• You have to know exactly what is wrong medically to get better
• Doctors have all the answers.
• The doctor is always right.
• The doctor is never right.

3. Handling pain

• Better not do things that hurt
• I just have to push myself harder all the time. No pain, no gain.

4. Work

• You can't work if you have chronic pain.
• Besides, no one would hire you.

5. You and others

• No one ever felt as bad as you. No one could understand.
• If you don't get better you are either faking or else you enjoy pain somehow.
• You deserve the pain because of something bad you did.
• You look so good! How can you have chronic pain?
• You can't have a good laugh if you are hurting
• No one is as badly off as you are
• I should blame myself for getting hurt. Pain is my punishment for making a mistake.
• I can't do what I did before, so I must be useless
• I should look miserable so that people will know I'm hurting

6. What helps

• It will get better if you ignore it.
• Pain medicine will definitely help chronic pain.
• Nothing I do can affect my pain, it's too late.

7. What pain means

• If it hurts, it is damaging you even more.
• If you have pain, you can never be happy.
• All pain is the same.

8. Insurance

• You must live your whole life in fear of being cut off. Don't let anyone see you doing something active.
• If you can do an activity once, you can do it for a living
• You should be paranoid of the insurance company
• Being off work because of pain is a holiday
• You'll get big bucks if you hurt yourself

9. Medications

• Narcotic medications are the only solution.
• Narcotic medications have no side-effects.
• Reducing narcotics will increase your pain
• Pain killers kill pain
• If I hurt, I should take a pill
• You need to be crazy to take an antidepressant.
• You will get addicted if you take narcotic medication.
• Taking medication would mean I'm weak. I'm not a "pill person".
• Medications are all the same, and all useless.

10. Exercis

• All exercises and physiotherapy are the same
• All exercise makes pain worse
• All exercises are equally effective / ineffective.
• If it hurts to exercise at the start, it always will

11. Pain management

• Don't pace yourself. Work on and on and push yourself harder through the pain
• The pain is someone else's fault; let them do something about it
• If you manage your pain, it disappears
• Pain management can't help
• There is always someone who knows better than you what you should do
• Pain is stronger than my will

LISTEN TO YOUR BODY

LET PAIN BE YOUR GUIDE-

-NOT YOUR BOSS!!!

If the doctor doesn't believe you:

A picture is worth a thousand words...and a video is worth a million more.  Keep it short--their attention span is.. as lengthy as...ahem, never mind.

Doctors seem to think that I live with the delusion that I will ever be "pain free."  I would have to be put under anesthesia and put in the ICU for the rest of my life....and to some degree, even in a coma, I woulld feel a large amount of pain: so I have to find ways to live with it or I will be a miserabble bitch until the day I die?

Not for me!!!!

i don't want nerve blocks because the high degree of causing a spread, and they've only effective maybe 50% of the time.  I don't know if pumps are a solution at my age.  I want to get back into the pool--so desperately it hurts, ironically.

What I want the doc to remember is

there's a FACE BEHIND THE PAIN,

and the diagnosis of RSD/CRPS

                 I KNOW PAIN--I LIVE PAIN.

             




WHAT WAS HEALTHY?


I am not sure I really remember--my pain started when I was 8 years old.

I hid it because I feared my borderline mother.  That is on me.

But I was a CHILD!!!  I didn't know better and now I do.

I know I can get there....I

just NEED A HOME: CUZ

COME JUNE--I AM ON THE


STREETS



Newly diagnosed = grieving:

DENIAL

BARGAINING

ACCEPTANCE

DEPRESSION

ISOLATION

BUT I NEED TO 


HAVE HEALTHY

PEOPLE HELPING ME MAKE THE 

RIGHT DECISIONS!!!!


MORE THAN THAT---I NEED


A PLACE TO STAY IS A GOOD START


TO BE ON MY WAY....

Myths of Chronic Pain-uh, duh, REALLY???

Chronic Pain's Common Myths

Approximately 50 people with chronic pain were asked what they thought were some myths about chronic pain. Here are some of their answers, sorted into categories. I've added a few that I have heard others express over the years.

1. Where it is

• It's all in your head
• It's purely physical.

2. Doctors

• Medical science can cure anything. If they can put a man on the moon, they can fix my pain.
• If you are not getting a cure, someone is holding out on you.
• The doctors don't care, or else they must have missed something. Maybe both
• If the doctors won't explain something properly, they are hiding something
• You have to know exactly what is wrong medically to get better
• Doctors have all the answers.
• The doctor is always right.
• The doctor is never right.

3. Handling pain

• Better not do things that hurt
• I just have to push myself harder all the time. No pain, no gain.

4. Work

• You can't work if you have chronic pain.
• Besides, no one would hire you.

5. You and others

• No one ever felt as bad as you. No one could understand.
• If you don't get better you are either faking or else you enjoy pain somehow.
• You deserve the pain because of something bad you did.
• You look so good! How can you have chronic pain?
• You can't have a good laugh if you are hurting
• No one is as badly off as you are
• I should blame myself for getting hurt. Pain is my punishment for making a mistake.
• I can't do what I did before, so I must be useless
• I should look miserable so that people will know I'm hurting

6. What helps

• It will get better if you ignore it.
• Pain medicine will definitely help chronic pain.
• Nothing I do can affect my pain, it's too late.

7. What pain means

• If it hurts, it is damaging you even more.
• If you have pain, you can never be happy.
• All pain is the same.

8. Insurance

• You must live your whole life in fear of being cut off. Don't let anyone see you doing something active.
• If you can do an activity once, you can do it for a living
• You should be paranoid of the insurance company
• Being off work because of pain is a holiday
• You'll get big bucks if you hurt yourself

9. Medications

• Narcotic medications are the only solution.
• Narcotic medications have no side-effects.
• Reducing narcotics will increase your pain
• Pain killers kill pain
• If I hurt, I should take a pill
• You need to be crazy to take an antidepressant.
• You will get addicted if you take narcotic medication.
• Taking medication would mean I'm weak. I'm not a "pill person".
• Medications are all the same, and all useless.

10. Exercis

• All exercises and physiotherapy are the same
• All exercise makes pain worse
• All exercises are equally effective / ineffective.
• If it hurts to exercise at the start, it always will

11. Pain management

• Don't pace yourself. Work on and on and push yourself harder through the pain
• The pain is someone else's fault; let them do something about it
• If you manage your pain, it disappears
• Pain management can't help
• There is always someone who knows better than you what you should do
• Pain is stronger than my will

LISTEN TO YOUR BODY

LET PAIN BE YOUR GUIDE-

-NOT YOUR BOSS!!!

If the doctor doesn't believe you:

A picture is worth a thousand words...and a video is worth a million more.  Keep it short--their attention span is.. as lengthy as...ahem, never mind.

Doctors seem to think that I live with the delusion that I will ever be "pain free."  I would have to be put under anesthesia and put in the ICU for the rest of my life....and to some degree, even in a coma, I woulld feel a large amount of pain: so I have to find ways to live with it or I will be a miserabble bitch until the day I die?

Not for me!!!!

i don't want nerve blocks because the high degree of causing a spread, and they've only effective maybe 50% of the time.  I don't know if pumps are a solution at my age.  I want to get back into the pool--so desperately it hurts, ironically.

What I want the doc to remember is

there's a FACE BEHIND THE PAIN,

and the diagnosis of RSD/CRPS

                 I KNOW PAIN--I LIVE PAIN.

             




WHAT WAS HEALTHY?


I am not sure I really remember--my pain started when I was 8 years old.

I hid it because I feared my borderline mother.  That is on me.

But I was a CHILD!!!  I didn't know better and now I do.

I know I can get there....I

just NEED A HOME: CUZ

COME JUNE--I AM ON THE


STREETS



Newly diagnosed = grieving:

DENIAL

BARGAINING

ACCEPTANCE

DEPRESSION

ISOLATION

BUT I NEED TO 


HAVE HEALTHY

PEOPLE HELPING ME MAKE THE 

RIGHT DECISIONS!!!!


MORE THAN THAT---I NEED


A PLACE TO STAY IS A GOOD START


TO BE ON MY WAY....

P4P and the 6 D's, and let's have a G and an L, an M....

And a bunch of people who can't throw in an "A" which means "Adult" and "Act like it!"

Dish it out but ya can't take it???  You're in such gawd-awful ill-health and so much pain, but you can dick around 18-20 hours a day online acting like children, hurtling insults, or dragging newcomers' names through the mud because they might be someone who did exactly what to you?

Do you think it might be NOTHING????

Food for thought.....

1.  DOWN

2.  DIRTY

3.  DISGUSTING

4.  DELUSIONAL
5.  D-bra
6.  David

 

And give me a G (or whatever the fuck her name is-when she gets HONEST while she crows about being picked on and that everyone is after her-who, what, where, when, why and WTF???), and a S (arah) and a T (anya) and "Bluebird Sher" and all them fucking bitches that have DISAPPEARED since said "P4P" folded.

It's fucking days of our lives in that joint.  I am sick to death of the bullshit, hypocrisy that goes on there....

Whoever the fuck she is-G/K, just as d-bra and Linda and any of the stupid crap who probably got cut oooff from her as passably as the next person, lengthy emails and total BULLSHIT.  She calls herself a "bonafide CRPS" patient, and she showed me the 

I have seen her hand, and it looked like this:

A FUCKING NORMAL 

DAMNED HAND:

No swelling


No deformity

No damned dystonia/spasm

No color changes.

Very little else to indicate 

                                                                             RSD/CRPS.

And now a "Code of Ethics" written by one person who IS of the ones who need to develop a personal one; to treat people at least with some respect, and instead, she posts Doc C's personal business in a smear campaign when he cannot even be there to defend himself-what a height of maturity, and oh, such a wonderful job of of a smear campaign for what purpose?  

To develop a "Code of Ethics" for anywhere, a couple points to be made:

1. It's the job of the site administrator--whether they do it or not
2. If you feel they are not enforcing their rules:  go somewhere else!!!
3. This is not the time nor the place for it because you have to be an ethical person to develop a code of ethics.

Try stopping things like sending private messages that say, "Thanks for your article on hospital protocol for RSD--if it wasn't so painful; I would tattoo it on my forehead."  Sarcasm and non-constructive feedback has no place in the leadership role you  desperately seek.

And by smearing Doc C's personal/professional business across p4p, what had you hoped when he was not here to defend himself?  But if you look at what they did when "Doc C" burned his membership card:  They smeared his personal life across the CRPS portion of the page as such:

http://www.semmelweissociety3.net /patientdoctortogetherwhentheadministratorplacesthepatientsatriskwhattodo/id326.html

http://abclocal.go.com/wabc/story?section=news/local&id=5950501 

 ,
 

Dear Collegues,

 

My "Disruptive Physician" Corrective Action Hearing began April 28, 2009, and is scheduled to continue on May 18, 2009. There are no quality of care issues that form the basis for the review. The primary issues to be discussed are my "interpersonal relationships" with two ICU nurses, one ICU Physician Assistant, and one ICU pulmonologist. These "interpersonal relationship" issues were founded in my complaints about poor quality of care in the ICU of Mercy Hospital in Rockville Centre, New York. Complaints that the Hospital Administration was ignoring for over two years and led to patient deaths. The most serious complaints were about a Hospital Physician Assistant who was performing invasive procedures (central lines, chest tubes, Swan-Ganz catheters, hemodialysis catheters, and pacemakers) without proper training and supervision. The Hospital is attempting to terminate me in retaliation for my complaints despite the fact that the Department of Health and the Joint Commission identified that my complaints were credible, accurate and required "immediate" attention. That P.A. no longer works at the Hospital (2005 - 2008). I've been on staff at Mercy Hospital for 16 years (since 1993).

 

I'd like to keep you informed about the progress of this process in the hopes that it might create an interest in your Medical Staff Organization and maybe you'll be able to prevent this from happening at your institution.

 

My suggestion is that we begin by adopting a National Standard for Medical Staff Bylaws and we try to standardize how those Bylaws are treated in the courts of law of every State in the Union. This will take years to accomplish but I think we need to get started now before the private practice of medicine has "arrested beyond any reversible state." My idea is that Bylaws incorporate the US Constitution (Federal funds are used daily in the Hospital) and are legally accepted as a Contract between physicians and the Hospital. Please let me know your thoughts and ideas.

 

Secondly, we must revise the Health Care Quality Improvement Act (HCQIA) because it is unconstitutional in its treatment of physicians. It removes all of our rights. In the interim, we must somehow get State and Federal judges to properly interpret HCQIA. Again, please let me know your thoughts and ideas.

 

Please see below for my most recent communication to the Chairperson of the Ad Hoc Committee that will be judging my behavior at Mercy Hospital. We keep digging our own graves and we keep stabbing each other in the back. Maybe if we all learned to work together and help one another, we wouldn't be in the situation that we are in right now and maybe private practice would be flourishing instead of dying. Patient care would certainly improve because we would not fear retaliation when reporting our concerns.

 

Please forward this to all of your physician contacts.

 

Invite me to speak to your Medical Staff, Medical Society, or Specialty Society. The talk is free, the content priceless.

 

Sincerely,

 

Anthony Colantonio, MD, FACS

 

-------------------------------------------------------------------------------------------------------------------------------------------------------------------

Their complaint?  He hadn't, during that time, their complaint was that he had been basically paying enough attention to THEM--it (WAS, anyhow) a WEBSITE!!!!  He'd been "remiss" in his duties to them as site administrator (and physician offering of FREE advice?)

He had no legal duty of care to them whatsoever!  He chose to put his patient's lives before and above all else.  Good for him.

What did they accomplish?  Driving him off?  Souring him after he busted ass for them out of the goodness of his heart?  Shows that their hearts are tiny and their hands are BIG.

• Make themselves smell like fucking roses?
• Trash the good work Doc C had done on that site--take apart the videos he labored to make for our benefit?
• What, do tell did this man DO to your sorry ass to deserve that kindness from your sorry ass?
• He had been busting his ass to save dying patients all around him, yet you claim he failed his duty to you?  I have a bit of bad news: he owes you-legally-nothing.  This is a website!  Now the patients sitting in his office, and dying in the ICU he works in = different story.  But now his name has been smeared around here

Grow the hell up, people!!!!!

I am tired, worn out, battered and bruised: by RSD!!!  And the medical system in ge

So why FROM A PLACE WHERE I'M SUPPOSED TO BE SUPPORTED?

I'll pass--I take enough abuse from my family.  Don't need it from strangers, digging up my life and  re-posting in all over the web!!!  And not even getting the story straight!!!!

THANK GOD IT'S DONE AND OVER WITH!!

We can do that "moving on" everyone has been talking about....but not doing.

YAYAYAYAYAY!!!!!

 
God, nasty messages haven't stopped, she hasn't stopped, none of it ever will.  She is pushing 70, borderline, and is never going to change: not ever.  So until then, whether RSD kills me first, or she gives herself another heart attack (and as bitchy as she is, what doc would WANT TO take her seriously?????)

Geography helps, contrary to what some say.  I BELIEVE

IS THE SNOW MY PRISON OR MY BODY?

This is sucking worse by the day:


Now my whole damned joint is throbbing...but nothing grew, so it doesn't hurt, and nothing is wrong.  Your house isn't a wreck, and it doesn't feel like a beaver is gnawing on your ankle when you put it in the dependent position.  What a joke.  I don't need help, I could say things that I want to, but my mother at least taught me not to be TOO rude this publically.  Here's some more fun (BTW: Neighbor took the photos of the snow, in case you were going there!)  Oh, and no pain clinic has called me!!!

 

 I am not "irritable and angry and bitter" because some idiot thinks I have "Chronic Pain Syndrome, and yes, I DO know it's a MENTAL diagnosis, but I don't believe that "depression causes my pain," because as Dr. Hooshmand, MD, a now retired neurologist who treated RSD for 40+ years,  said, "RSD causes the emotional disturbance, not the other way around."


And because the motor and especially the sensory neurons terminate in the limbic system: responsible for emotional disturbances, as you call it, I would AGREE!!


I am not the "crazy one."

And I know when it hurts before anyone else does.  PERIOD.

And yeah, right now, I AM pissed off!  Blame my limbic system

PRODUCTS OF DAILY SOAKS IN EPSOM SALTS & DRESSING CHANGES-AS ADVISED

 January 14, 2012 are days  after visit to Emily

January 16, 2012--------------------------------------------------------------------------------------------------------

I still sorta thought it might be healing, but starting to smell.
Throbs into my ankle joint  esp when I get up and foot is in dependent position.
Nauseated more than normal & severe heartburn--not resolving

<--------------still January 16
------------------------------------------------------------------------------------------------------------

January 17, 2012

pain 100% off the charts:

in the knee, 

hips,

lower leg........

 Temperatures between 100.1-102.3 F
Severe sweating
Causing severe irritability....
Hardly able to make it to the bathroom
When I do--pain is so bad, I am often initially unable to urinate.




On the Right photo,, the smell andouter edges have me concerned... but the odor is very concerninng!!!!!

My bipolar is in remission--- 

•   I am in major pain
• constantly nauseated
• I have RSD, not insanity

I just need some help at home just until this heals some more

RIGHT NOW, I HAVE A LOT OF PAIN, NOT ANY HELP.

Pissing and Moaning (sorry about it)....

Had some trouble today uploading videos....look like shit anyhow, and because I had trouble uploading today; I am shooting for audio....might need to turn up your audio.....

Good news though; got in to see a pain doc who actually is familiar with RSD, takes both my insurances and hopefully will be helpful.  I am tired of my, basically a continuation of Christmas Day...... "D-Day." (Dystonia Day!)

I am just plain old exhausted is more like it!

Exhausted, tired, and wiped out. 

I don't sound like myself.  Sorry.  Here's the photo (Christmas?):

Been this way most of the day--but Kat's electric blanket to the rescue:  on a low setting, I wrapped myself in it, and bam, it worked: again: God bless Kat; and pray  for her guys--

She lost her own daughter just my age like 2 weeks after my birthday:

Jennifer Shea McGee "Shea" (1974-2011)

Not a perfect angel here; now with the angels--is an angel now.

"There but for the grace of God go I."