Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

Jump to this post

Selan54 It is hard to evaluate pain which is why I push for some objective method of measuring pain. As I understand it there is no FDA approved method of measuring pain, but they do measure pain for research purposes. I heard of a person living near me who died of bone cancer, but they did not even know they had the cancer until 3 weeks before they died. I always heard that bone cancer was very painful and yet this person did not know they had it until just 3 weeks before they died? They kept working until they found the cancer. People experience pain differently. 19lin

Sent from Windows Mail

REPLY

Hi 19lin. I’m to the point that I can’t take this much pain. Surgery or
pills are a waste of time. I’ve always said , no offense to people that are
suffering with cancer, but after 33 yrs of this I’m backing in to a corner
with no way out. This is like cancer but no dr can tell me how long I have.
I’m now looking into marijuana use in my state. The govener is
decriminalized as of Jan. 2017 and there is a large push to make it legal
for medical use. I want to try it but if my dr tested me I will lose him,
we’ve had that discussion. I just don’t know if it would help, so I’ll wait
and see what happens in November when the people in this state will be
given a chance to vote for or against medical use. Both bills won’t make it
until Jan. The federal government. has all the the Drs scared because of
the misuse of narcotics. To many people pretend to be in pain just to sell
there medicine, I’ve seen it add 4 to 500 to there monthly income. This
puts narcotics in the wrong hands. Excuse me for rambling I’m just lost and
don’t know which way to turn. briansr

REPLY
@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

Jump to this post

Already trying. But if you put your name out there you can lose your Dr.
The feds are getting crazy and we are the ones who suffer. To many people
are selling there meds an they get in the wrong hands and people die. My
Drs office is looking like a factory for people to get drugs and I’m
getting worried that they will be shut down. Still lost and trying!! briansr

REPLY

@leh09, my grandfather died with bone cancer. He didnt have much pain till close to the end. I’ll never forget when the cancer ate through his hip bone, it sounded like a gun went off ( a shot gun ). He never came home after that. Us kids were still school age when that happened, today I would hope science can find ways to ease the suffering on the lives of so many people. I dont recall seing my grandfather really being sickly with his cancer, he was always happy and fishing.

Liked by kathymeyers

REPLY
@frank1

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don’t have pain in the sense of “hurt”, but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks–there’s nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I’ve said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

Jump to this post

Frank1, Warren, wear your goggles with your head held high and with a smile. Being diffren isnt something to be ashamed of, some people are just afraid of things they dont understand, thats why you hear the comments. Thats why its good not to judge anyone because we dont know what they are going through, are what sicknesses people are suffering from. A smile and a kind word goes a long way. Have a very blesses day!! salena54

Liked by raven

REPLY
@frank1

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don’t have pain in the sense of “hurt”, but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks–there’s nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I’ve said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

Jump to this post

Hi Warren, my name is briansr. Your symptoms sound like Sjogrens syndrome
an autoimmune disease. I was diagnosed with this, sarcoidosis, EMGUS,
fibromyalgia by a very good rheumatologist years ago. My mom had rheumatoid
arthritis, lupus, and Sjogrens syndrome. Find a good rheumatologist, he is
she might help.

REPLY
@frank1

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don’t have pain in the sense of “hurt”, but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks–there’s nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I’ve said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

Jump to this post

Dear Salena54: Thanks for your encouragement about the goggles! Best,
Warren.

Liked by salena54, raven

REPLY
@briansr

Hi 19lin. I’m to the point that I can’t take this much pain. Surgery or
pills are a waste of time. I’ve always said , no offense to people that are
suffering with cancer, but after 33 yrs of this I’m backing in to a corner
with no way out. This is like cancer but no dr can tell me how long I have.
I’m now looking into marijuana use in my state. The govener is
decriminalized as of Jan. 2017 and there is a large push to make it legal
for medical use. I want to try it but if my dr tested me I will lose him,
we’ve had that discussion. I just don’t know if it would help, so I’ll wait
and see what happens in November when the people in this state will be
given a chance to vote for or against medical use. Both bills won’t make it
until Jan. The federal government. has all the the Drs scared because of
the misuse of narcotics. To many people pretend to be in pain just to sell
there medicine, I’ve seen it add 4 to 500 to there monthly income. This
puts narcotics in the wrong hands. Excuse me for rambling I’m just lost and
don’t know which way to turn. briansr

Jump to this post

Hello; there are different forms of Canibus mess ask your Dr. About cannibinoids, they don’t contain the Thc, but still have the beneficial effects of reducing the pain in the same way that opioids do, without the addiction side effects. Ask your Dr. about these, stay strong man, I understand

REPLY
@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

Jump to this post

Good info 19lin! Thanks I will also send letters to some reps. Thank you! Sharonmay7

REPLY
@briansr

Hi 19lin. I’m to the point that I can’t take this much pain. Surgery or
pills are a waste of time. I’ve always said , no offense to people that are
suffering with cancer, but after 33 yrs of this I’m backing in to a corner
with no way out. This is like cancer but no dr can tell me how long I have.
I’m now looking into marijuana use in my state. The govener is
decriminalized as of Jan. 2017 and there is a large push to make it legal
for medical use. I want to try it but if my dr tested me I will lose him,
we’ve had that discussion. I just don’t know if it would help, so I’ll wait
and see what happens in November when the people in this state will be
given a chance to vote for or against medical use. Both bills won’t make it
until Jan. The federal government. has all the the Drs scared because of
the misuse of narcotics. To many people pretend to be in pain just to sell
there medicine, I’ve seen it add 4 to 500 to there monthly income. This
puts narcotics in the wrong hands. Excuse me for rambling I’m just lost and
don’t know which way to turn. briansr

Jump to this post

The problem I have is I already brought up this to my doc. I asked him six
months ago that if they legalize marijuana what he thought about it. He
basically said HELL NO, NO WAY, period…. briansr

REPLY
@briansr

Hi 19lin. I’m to the point that I can’t take this much pain. Surgery or
pills are a waste of time. I’ve always said , no offense to people that are
suffering with cancer, but after 33 yrs of this I’m backing in to a corner
with no way out. This is like cancer but no dr can tell me how long I have.
I’m now looking into marijuana use in my state. The govener is
decriminalized as of Jan. 2017 and there is a large push to make it legal
for medical use. I want to try it but if my dr tested me I will lose him,
we’ve had that discussion. I just don’t know if it would help, so I’ll wait
and see what happens in November when the people in this state will be
given a chance to vote for or against medical use. Both bills won’t make it
until Jan. The federal government. has all the the Drs scared because of
the misuse of narcotics. To many people pretend to be in pain just to sell
there medicine, I’ve seen it add 4 to 500 to there monthly income. This
puts narcotics in the wrong hands. Excuse me for rambling I’m just lost and
don’t know which way to turn. briansr

Jump to this post

Brainsr I know what u mean!! I’ve seen people in real pain kicked out of the Drs. Office because there pee test came out bad. But how can this be league It seems that if a good dr. Is giving u heavy duty pain pills how can they just stop them??? If I stoped I would get sick. I think I would sue if they just stopped!!! The way I understand it is that if I stop I would go through withdrawal. Is that true. I’m on fentenol 75 mg. and oxyconde 10 three times a day. Sharon.

REPLY
@briansr

Hi 19lin. I’m to the point that I can’t take this much pain. Surgery or
pills are a waste of time. I’ve always said , no offense to people that are
suffering with cancer, but after 33 yrs of this I’m backing in to a corner
with no way out. This is like cancer but no dr can tell me how long I have.
I’m now looking into marijuana use in my state. The govener is
decriminalized as of Jan. 2017 and there is a large push to make it legal
for medical use. I want to try it but if my dr tested me I will lose him,
we’ve had that discussion. I just don’t know if it would help, so I’ll wait
and see what happens in November when the people in this state will be
given a chance to vote for or against medical use. Both bills won’t make it
until Jan. The federal government. has all the the Drs scared because of
the misuse of narcotics. To many people pretend to be in pain just to sell
there medicine, I’ve seen it add 4 to 500 to there monthly income. This
puts narcotics in the wrong hands. Excuse me for rambling I’m just lost and
don’t know which way to turn. briansr

Jump to this post

Brainsr I believe you are right, not only could you get sick but in some cases it could cause permanent damage or even death. 19lin

Sent from Windows Mail

REPLY
@tompet

Hi, my name is Tommy and I have several chronic diseases. I am not living in the US and am moving from Singapore back to my home country Sweden. I was first sick in 2001 in Sweden and got wrong diagnose and disability pension in 2004. In 2005 I moved to Singapore and the climate made it a lot better so I started working and cancelled my disability pension. But it got worse and I haven’t been able to work for some years and I got help from the health care system here after ending up in the emergency.

It has taken time and the first diagnose was that my knees was worn out and that I had multiple polyarthritis and was put in a wheelchair. I got physiotherapy in warm water and it has helped me a lot. Now I am diagnosed with fibromyalgia, arthritis, chronic sinusitis and chronic pelvic pain syndrome as my prostate and urine bladder gives me problems. On top of that my left lung is collapsing, I have Meckel’s Diverticulum (a pocket on the colon) and when they examined that, colonoscopy, they found the beginning to colon cancer. At this time it was benign but they could not see the whole colon clearly and want it to be done again in Sweden. Like that wasn’t enough I also had a heart attack 26 August last year with following surgery and in the middle of November I was back to hospital with heart problems. My heart was beating to slow and irregular. Tomorrow I will be admitted for a sleep study as I suffer a lot from insomnia.

I also have an abusive marriage and starved so I lost 25 kg and was diagnosed with malnutrition. Thankfully I got help from the social welfare so I could at least eat one meal a day. I am very thankful for the help I have got here in Singapore; they have done a lot for me. After several years of struggle in court I finally got help from legal aid and am getting a divorce from my wife and can return to my home country. I have tried to leave before but my wife has stopped me and now I have to leave because I will lose my PR because of the divorce.

But I have nowhere to go. I am going back to a place I have lived before but because of the refugee situation in Sweden there is no housing available. Even the health care system is trying to make it hard for me to come there. I have a daughter and grandchildren there and my daughter is helping me but fighting with the bureaucrats is horrible. I just have to go there and just hope they will help me otherwise I will end up on the street without health care. The catch 22 is that I can’t stay with my daughter because then they will say I don’t need help. The Swedish system is for refuges not for helping returning citizens. And they misdiagnosed me before. I hope I at least can refill my medications as I am not allowed to take everything with me into the country and I so badly need a wheelchair. Hope I can get help with it.

Sorry for writing so long but I am in a lot of pain and the situation is desperate so I need all the input I can get. Thank you.

Jump to this post

Believe it things will be better. God is with you. He isn’t doing these
things never blame God. Man men do these things. Men also help you . Have
faith in God he will send someone your way. You don’t know what God will do
or who he will send. Believe that he will have faith. I will pray for you.
If I were there I’d help you that’s why I know someone there will help you.
Reach out to everyone there until you get help. God bless you Sue Breen

REPLY
@briansr

Hi 19lin. I’m to the point that I can’t take this much pain. Surgery or
pills are a waste of time. I’ve always said , no offense to people that are
suffering with cancer, but after 33 yrs of this I’m backing in to a corner
with no way out. This is like cancer but no dr can tell me how long I have.
I’m now looking into marijuana use in my state. The govener is
decriminalized as of Jan. 2017 and there is a large push to make it legal
for medical use. I want to try it but if my dr tested me I will lose him,
we’ve had that discussion. I just don’t know if it would help, so I’ll wait
and see what happens in November when the people in this state will be
given a chance to vote for or against medical use. Both bills won’t make it
until Jan. The federal government. has all the the Drs scared because of
the misuse of narcotics. To many people pretend to be in pain just to sell
there medicine, I’ve seen it add 4 to 500 to there monthly income. This
puts narcotics in the wrong hands. Excuse me for rambling I’m just lost and
don’t know which way to turn. briansr

Jump to this post

Medicinal marijuana is very costly from what I have seen on TV when
they show the growers. I am in 7 to 9 pain and can take no meds, so I
would welcome even a brownie laced with canaibus. has nothing….
ladyjane85

REPLY

I am lucky my doctor seems strick but fair he keeps a close eye on me and has me consider the disadvantages as well as advantages of the meds. But he works in a clinic run by the Catholics and they can force him to make changes. I have read of others who said either their insurance or the doctor made them stop. From what I have read this is bad news, not only for pain suffers, but for everyone. Already I have read about people going to the black market for pain medicine and dying because the drugs were bad. Also studies in pain research show that chronic pain suffers have a higher suicide rate than average. If saving lives is the goal this is not the way to do it. 19lin

Sent from Windows Mail

REPLY
Please login or register to post a reply.