Share this:
Kelsey Mohring
@kelseydm

Posts: 300
Joined: Feb 24, 2015

Chronic Pain members - Welcome, please introduce yourself

Posted by @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.

REPLY

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.

@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

Thank you Colleen, It’s easy for me because I don’t think I have it as bad
as the others even though at times it would feel like it, until I read the
posts. I would love to take it all away for them but I can’t. So if we can
be there for each other, it might give a little comfort are some purpose in
their self in helping one another.

salena

@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

It’s an honor to find a group of people that have been, and are still going
through, what we all face 24/7. I’m getting worse but a lot of this startup
group have alot more problems than myself. Let’s try to grow this group
into one large enough to let our “FRIENDS” in Washington know that we are
indeed human beings and could use some representatives in D.C. to open
their minds and hearts to the millions that suffer daily with very little
to look forward to. I want to write, a novel, book, articles to whoever we
can reach. I just need some ideas. Do you suppose there is a pain monthly
magazine. LOL briansr

@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

I do agree!!! It would be great to see them do what is right for those who
are in need of their assistants.

salena

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

@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

Colleen thanks for pointing us in the right direction !!! It helps to gather all the info we can. And by the way since they burned of my nerve endings March 15th. I Hav only had a few 3 day headaches. Around a 5. and only on the left side. I’m very thankful that I tried this and so far it is the only thing that worked Thanks, Sharonmay7

Hi, my name is Allan, I have been diagnosed with ilionguinal neuropathy from hernia surgery. I am in constant pain, the only relief, is the medication which only reduces the level of pain. No one seems to understand what this pain is doing to my activities of daily living. If someone knows if there is any clinicle studies on this I would appreciate any information. I would also like some help in assessing the Ama guide to impairment in relation to this problem.
Thank you

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

@user_chc48c0aa

Hi, my name is Allan, I have been diagnosed with ilionguinal neuropathy from hernia surgery. I am in constant pain, the only relief, is the medication which only reduces the level of pain. No one seems to understand what this pain is doing to my activities of daily living. If someone knows if there is any clinicle studies on this I would appreciate any information. I would also like some help in assessing the Ama guide to impairment in relation to this problem.
Thank you

Jump to this post

Welcome Allan,
You may also be interested in joining the conversation about neuropathy happening here https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/ Members sharing on this discussion thread may have clinical trial suggestions and tips about the AMA guide.

Liked by diana11

@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

Warren, hi I’m Sharon. My mom has Ben dealing with eye issues for a few years. She was on blood thinners for her heart, sometimes this causes blood to pool in your eye. That’s a tough one cause u use your eyes anytime you are awake! That can’t be pleasent !! Glad u found our group keep us posted. Welcome. sharonmay7

Liked by diana11, salena54

@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

Warren did you ever have any problem with that eye? Your pain almost sounds like phantom pain which is one of the kinds of pain I have. But my understanding of this type of pain you should have had some type of problem with your eye, not necessarily a loss, but something? 19lin

Sent from Windows Mail

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.

Liked by salena54, emmur16

@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

Hi tommy welcome to our pain group. We r a friendly bunch! So to here of your problems!!! Maybe someone here will b able to point u in the right direction. I myself no little about your country. But I worry for you and hope and pray that you find relief!!! Sound like your in a spot!! Keep in touch and let us know what’s new. Hope this finds u on a better day!! Welcome Sharon

@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

How to get attention of higher ups? They want their money saved, so follow the money. I just sent email to my Congressional Representative about HR4063 which will be a law to stop opioids in VA medical facilities except for cancer and short term use. There is a vote coming on this bill so I am doing all I can to oppose it. Also write to the letters to the editor of your newspaper especially if you see an article that is negative toward opioids and pain.

I usually agree opioids are not good, but it is all we have that works right now. I usually push for funding for an objective method of measuring an individuals pain and for something to replace opioids that works. Also write to state officials. Check on web internet to find out about new laws or regulations being proposed. Any new federal regulation is suppose to have a period for comment from interested parties which is your chance to give your views.

Remember you are an expert at pain and you have knowledge that doctors and others do not have usually. Good luck and get involved. 19lin

Sent from Windows Mail

@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

Brainsr; good idea to start web site for pain suffers. It is hard to find a site to just talk and exchange ideas on. WebMD has a site but it started to turn a little sour as some were less than supportive. They did not have monitors who could monitor the site on a regular basis and that makes a big difference. You have good ideas and we need to let our leaders know there is another side to the pain coin. Many times you just see negative stuff in the press and no one brings the other side of the suffer. 19lin

Sent from Windows Mail

Please login or register to post a reply.