Community Chat

[hyacinth003]

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@151949 wrote:

They need to come out with guidelines for doctors on how to assess pain.  Then the doctors would be able to differentiate the addicts from the patients who honestly have pain. That is the research they should be doing. Stop just making up rules to avoid litigation and start honestly helping people. 

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Isn't it the same - education and experience?  Please, no more rules or guidelines.

Those of us who are health care professionals rely on education and experience all day long.  There is no substitute for it.

There are a gazillion things written on pain assessment already.  At some point, you have to trust the doctor-patient relationship. 

I care less about addiction when I have a daughter whose young life is being taken, day by day, by pain that no one will help her with.  We would most like to know WHAT is causing it.  She isn't making it up.  She was vibrant, active, working hard, had goals, and now she is feeling hopeless.

Not saving one addict from themselves is WORTH what she has been through.

Hyacinth

[Noel7]

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@beckyb1012 wrote:

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@Noel7 wrote:

Brain Scan Offers First Objective Measure Of Pain

Using fMRI scans of the brain, US scientists have for the first time developed a method of "seeing" pain and suggest it may lead to reliable ways for doctors to quantify objectively how much pain patients are feeling. They also propose their study may open the route to using brain scans to measure anxiety, depression, and emotional states like anger.

http://www.medicalnewstoday.com/articles/259005.php

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I have for many years wished they could come up with something like that to see the pain I experience with my migraines.  My Dr. is wonderful and does not question me in fact he says I use my meds. to sparingly which is why I get into bad trouble with pain sometimes.  I started with a migraine just last night and took a pill and have had two more here at my desk since starting 7:30 a.m. this morning.  Due to the meds it is a "functioning" migraine and not full blown but I still have it.  My head is on fire and I will head home at four and right now I see #3 pain pill for the day in my future at home.  I have only done three pills one other time in my life in one day and I have suffered since a teenager.

I do not believe I am addicted but when I can be down for three days with a full blown migraine I cannot imagine doing it without the meds.

I would love to see how much I would register on a pain scale.

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@beckyb1012

I understand.  I get migraines, also, it's part of the lupus profile. 

I've read there are new medications for migraines that come at them in a different way.  I hope they find something to help you.

[Trinity11]

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@hyacinth003 wrote:

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@151949 wrote:

They need to come out with guidelines for doctors on how to assess pain.  Then the doctors would be able to differentiate the addicts from the patients who honestly have pain. That is the research they should be doing. Stop just making up rules to avoid litigation and start honestly helping people. 

---

Isn't it the same - education and experience?  Please, no more rules or guidelines.

Those of us who are health care professionals rely on education and experience all day long.  There is no substitute for it.

There are a gazillion things written on pain assessment already.  At some point, you have to trust the doctor-patient relationship. 

I care less about addiction when I have a daughter whose young life is being taken, day by day, by pain that no one will help her with.  We would most like to know WHAT is causing it.  She isn't making it up.  She was vibrant, active, working hard, had goals, and now she is feeling hopeless.

Not saving one addict from themselves is WORTH what she has been through.

Hyacinth

---

@hyacinth003, has she had genetic testing done? I recently went to Ancestory.com and then downloaded the results to Promethease. com. I received a lot of information about my genetic background and what I didn't realize was that I had every gene in the book for cardiac disease....that and a host of genes for other illnesses that I have suffered from all of my life. There was even information about a gene that made taking certain meds being dangerous for me. Since having had a recent heart attack, the testing is helping to guide my physicians. Maybe if something comes up for your daughter, her doctors may be better able to help her. Something will be found out of the ordinary causing her pain.

I am just so sorry this is happening to your family. You are such a good mom and I truly hope you can get your daughter the help she needs. There is nothing harder than watching our children suffer. My heart goes out to you.

[beckyb1012]

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@Noel7 wrote:

---

@beckyb1012 wrote:

---

@Noel7 wrote:

Brain Scan Offers First Objective Measure Of Pain

Using fMRI scans of the brain, US scientists have for the first time developed a method of "seeing" pain and suggest it may lead to reliable ways for doctors to quantify objectively how much pain patients are feeling. They also propose their study may open the route to using brain scans to measure anxiety, depression, and emotional states like anger.

http://www.medicalnewstoday.com/articles/259005.php

---

I have for many years wished they could come up with something like that to see the pain I experience with my migraines.  My Dr. is wonderful and does not question me in fact he says I use my meds. to sparingly which is why I get into bad trouble with pain sometimes.  I started with a migraine just last night and took a pill and have had two more here at my desk since starting 7:30 a.m. this morning.  Due to the meds it is a "functioning" migraine and not full blown but I still have it.  My head is on fire and I will head home at four and right now I see #3 pain pill for the day in my future at home.  I have only done three pills one other time in my life in one day and I have suffered since a teenager.

I do not believe I am addicted but when I can be down for three days with a full blown migraine I cannot imagine doing it without the meds.

I would love to see how much I would register on a pain scale.

---

********************************

@beckyb1012

I understand.  I get migraines, also, it's part of the lupus profile. 

I've read there are new medications for migraines that come at them in a different way.  I hope they find something to help you.

---

Yes I remember you suffer from that.  My Mom had her migraines with her Lupus and Nephritis for all those decades.  But about three years before her death in 2013 (from lung cancer of all things) she stopped getting them she was 70.  Lupus and Nephritis since her early 20's.  My first memory ever was seeing her being taken out of our home on a stretcher in an ambulance.  She was addicted to Darvon.  I was the one who had to tell her it was being taken off the shelf and she had been on it daily for over 45 years.  Talk about her shocked and upset face when I told her the news.  They put her on Hydrocone (not sure of the spelling) for the last couple of years.  But watching her dependence on that drug (and I know she needed it) still has kept me so safe with myself.

[Noel7]

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@beckyb1012 wrote:

---

@Noel7 wrote:

---

@beckyb1012 wrote:

---

@Noel7 wrote:

Brain Scan Offers First Objective Measure Of Pain

Using fMRI scans of the brain, US scientists have for the first time developed a method of "seeing" pain and suggest it may lead to reliable ways for doctors to quantify objectively how much pain patients are feeling. They also propose their study may open the route to using brain scans to measure anxiety, depression, and emotional states like anger.

http://www.medicalnewstoday.com/articles/259005.php

---

I have for many years wished they could come up with something like that to see the pain I experience with my migraines.  My Dr. is wonderful and does not question me in fact he says I use my meds. to sparingly which is why I get into bad trouble with pain sometimes.  I started with a migraine just last night and took a pill and have had two more here at my desk since starting 7:30 a.m. this morning.  Due to the meds it is a "functioning" migraine and not full blown but I still have it.  My head is on fire and I will head home at four and right now I see #3 pain pill for the day in my future at home.  I have only done three pills one other time in my life in one day and I have suffered since a teenager.

I do not believe I am addicted but when I can be down for three days with a full blown migraine I cannot imagine doing it without the meds.

I would love to see how much I would register on a pain scale.

---

********************************

@beckyb1012

I understand.  I get migraines, also, it's part of the lupus profile. 

I've read there are new medications for migraines that come at them in a different way.  I hope they find something to help you.

---

Yes I remember you suffer from that.  My Mom had her migraines with her Lupus and Nephritis for all those decades.  But about three years before her death in 2013 (from lung cancer of all things) she stopped getting them she was 70.  Lupus and Nephritis since her early 20's.  My first memory ever was seeing her being taken out of our home on a stretcher in an ambulance.  She was addicted to Darvon.  I was the one who had to tell her it was being taken off the shelf and she had been on it daily for over 45 years.  Talk about her shocked and upset face when I told her the news.  They put her on Hydrocone (not sure of the spelling) for the last couple of years.  But watching her dependence on that drug (and I know she needed it) still has kept me so safe with myself.

---

*******************************

Hi again Becky, what a horrible situation for your mother!  They never have done much for lupus, but to put her on pain pills for that long and then just take them away... that had to have been so hard for her.

I remember what a help you were to her, and I know how hard it is on the family.

[hyacinth003]

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@Trinity11 wrote:

---

@hyacinth003 wrote:

---

@151949 wrote:

They need to come out with guidelines for doctors on how to assess pain.  Then the doctors would be able to differentiate the addicts from the patients who honestly have pain. That is the research they should be doing. Stop just making up rules to avoid litigation and start honestly helping people. 

---

Isn't it the same - education and experience?  Please, no more rules or guidelines.

Those of us who are health care professionals rely on education and experience all day long.  There is no substitute for it.

There are a gazillion things written on pain assessment already.  At some point, you have to trust the doctor-patient relationship. 

I care less about addiction when I have a daughter whose young life is being taken, day by day, by pain that no one will help her with.  We would most like to know WHAT is causing it.  She isn't making it up.  She was vibrant, active, working hard, had goals, and now she is feeling hopeless.

Not saving one addict from themselves is WORTH what she has been through.

Hyacinth

---

@hyacinth003, has she had genetic testing done? I recently went to Ancestory.com and then downloaded the results to Promethease. com. I received a lot of information about my genetic background and what I didn't realize was that I had every gene in the book for cardiac disease....that and a host of genes for other illnesses that I have suffered from all of my life. There was even information about a gene that made taking certain meds being dangerous for me. Since having had a recent heart attack, the testing is helping to guide my physicians. Maybe if something comes up for your daughter, her doctors may be better able to help her. Something will be found out of the ordinary causing her pain.

I am just so sorry this is happening to your family. You are such a good mom and I truly hope you can get your daughter the help she needs. There is nothing harder than watching our children suffer. My heart goes out to you.

---

I would trade places with her in a heartbeat!

She had some genetic testing done when she was being worked up for what turned out to be an ASD (autism spectrum disorder), but nothing generalized.

The pain is coming from something, but no one has found it yet.  My brain nags at me for MS (since my mother had it), but a complete neuro workup says not.  May go back to the rheumatologist (since her father has rheumatoid arthritis) and look there again.  With her being on Medicaid, it is so hard to find all the doctors you need to see for all the systems.  I wouldn't even mind a second opinion in neurology.  There are lots of doctors in my area, but they don't take Medicaid.  I can't express how frustrating it has been.  You just never want to see your child hurting.

Hyacinth

[Noel7]

@hyacinth003

Is the pain in her joints?

Maybe going back to the RA is a good idea.  Mine has said MS and RA, and others in that category, can indicate another auto-immune illness in the family.

I really wish you the best of luck finding out what's going on with her.  Have they tested for Lupus, Lyme disease?

[bri20]

@hyacinth003, I am so sorry.  My heart breaks for you and your daughter.   I hope you find some answers soon 

[Trinity11]

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@hyacinth003 wrote:

---

@Trinity11 wrote:

---

@hyacinth003 wrote:

---

@151949 wrote:

They need to come out with guidelines for doctors on how to assess pain.  Then the doctors would be able to differentiate the addicts from the patients who honestly have pain. That is the research they should be doing. Stop just making up rules to avoid litigation and start honestly helping people. 

---

Isn't it the same - education and experience?  Please, no more rules or guidelines.

Those of us who are health care professionals rely on education and experience all day long.  There is no substitute for it.

There are a gazillion things written on pain assessment already.  At some point, you have to trust the doctor-patient relationship. 

I care less about addiction when I have a daughter whose young life is being taken, day by day, by pain that no one will help her with.  We would most like to know WHAT is causing it.  She isn't making it up.  She was vibrant, active, working hard, had goals, and now she is feeling hopeless.

Not saving one addict from themselves is WORTH what she has been through.

Hyacinth

---

@hyacinth003, has she had genetic testing done? I recently went to Ancestory.com and then downloaded the results to Promethease. com. I received a lot of information about my genetic background and what I didn't realize was that I had every gene in the book for cardiac disease....that and a host of genes for other illnesses that I have suffered from all of my life. There was even information about a gene that made taking certain meds being dangerous for me. Since having had a recent heart attack, the testing is helping to guide my physicians. Maybe if something comes up for your daughter, her doctors may be better able to help her. Something will be found out of the ordinary causing her pain.

I am just so sorry this is happening to your family. You are such a good mom and I truly hope you can get your daughter the help she needs. There is nothing harder than watching our children suffer. My heart goes out to you.

---

I would trade places with her in a heartbeat!

She had some genetic testing done when she was being worked up for what turned out to be an ASD (autism spectrum disorder), but nothing generalized.

The pain is coming from something, but no one has found it yet.  My brain nags at me for MS (since my mother had it), but a complete neuro workup says not.  May go back to the rheumatologist (since her father has rheumatoid arthritis) and look there again.  With her being on Medicaid, it is so hard to find all the doctors you need to see for all the systems.  I wouldn't even mind a second opinion in neurology.  There are lots of doctors in my area, but they don't take Medicaid.  I can't express how frustrating it has been.  You just never want to see your child hurting.

Hyacinth

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@hyacinth003I hope and pray that you will be able to find a really good diagnostician. I do know that when it comes to autoimmune disease a timely diagnosis often takes awhile to receive....so hang in there. Please keep us updated. This has to be very difficult for your entire family. I lived it many years ago with one of my children, so I completely understand how hard this is for you.

[hyacinth003]

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@Noel7 wrote:

@hyacinth003

Is the pain in her joints?

Maybe going back to the RA is a good idea.  Mine has said MS and RA, and others in that category, can indicate another auto-immune illness in the family.

I really wish you the best of luck finding out what's going on with her.  Have they tested for Lupus, Lyme disease?

---

She describes the pain as in her knees and ankles, but then she says it also is in "her femurs."  So her whole lower body hurts.  She's fine elsewhere.  My mother had similar descriptions before we knew she had MS.  She's had a brain MRI as well as cervical, thoracic and lumbosacral spine.  She has had x-rays and MRI of her hands, x-rays of her knees and ankles.  She had an EMG.  She describes weakness in her legs, and I see her having trouble walking up stairs and she holds her arms out as if to balance herself.  She is having trouble driving longer distances now due to pain.

She has been worked up for lupus, RA, and Lyme.  My husband was negative for RA factor for a few years.  But, he not only had joint pain, he developed swelling too.  Rheumatologist mentioned fibromyalgia, but he didn't feel it strongly.  Her upper body is fine.

We're going to put her on "Mystery Diagnosis" if we ever figure it out!

Hyacinth