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.

@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

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Brainsr you are right to many are making it hard for those with real pain, that is why I lobby for research to develop an approved objective measure for pain. Such a devise should so who has real pain and who is faking. Of course it will not be easy but it needs to be done for everyone’s benefit. Too many good people are suffering needlessly because of a few who are trying to get rich quick.

I am sure you have tried many alternative pain control methods as have I, most are not effective but you need to try. I still have not tried hypnosis to see if that would work. At Mayo’s a few years ago they tried ECT on me and it did stop my phantom pain for awhile, but not the sciatic nerve pain. I tried it a few times but it had some negative side effects so I stopped it. Some find acupressure helpful.

There is a good article in the June issue of Consumer Reports on pain and the methods used to stop pain. It just came out so you can probably find it at your library. They review the various pain treatment methods and how effective they have been found to be. Good Luck 19lin

Sent from Windows Mail

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To sharonmay7 . with the strength of the meds your taking, stopping
suddenly would make you so sick you do not want to go through that ever. I
have many times and it took me to the floor.

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@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.

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Thank you for your support. It warms my heart that people care. I am 55 years old and I would like to be able to do things for 10 – 15 years more even if I have to sit in a wheelchair. I am quite capable of doing and solving things so I think I will find a way forward. But I struggle a lot with my self-worth as I was raised to take care of my siblings and when I needed help from them they was not able to help me. I know that I have to take better care of myself, eat better and a lot of other things but I feel so guilty when I do things for myself.

I have two small parrots, Lovebirds, and they mean everything to me as they are my children right now. They are very important to my mental health and I take them with me when I move but some people think I am crazy for loving them so much and it is quite costly to get them with me. But the same people wouldn’t question if it was a dog. It makes me feel guilty but at the same time I know that I wouldn’t go without them.

I just came back from a hospital where I have spent the night for a sleep study. I have no idea of the result, all I know is that I was awake until 4 am and still need more sleep.

I struggle a lot with my diseases, some weeks are so bad so everything is pain and the only thing to do is to rest. I have to go and shop myself and for every day out I need at least 2 – 3 days rest. The problem is that the big pain does not come right away; it comes after 20 – 30 minutes and then is too late to do something about it. Worst is when the hip is aching because then it get so hard to walk. The hips are x-rayed and the joints seem to be ok, it is the fibromyalgia in the big leg muscle that is giving me the pain.

Even when I have all this pain I think it is important to focus on something else than my pain. I don’t want to sit and feel sorry about myself all the time. I am educated about child abuse and have worked with it in the past. Then I also voluntarily worked with abuse against men and from men. It is my goal to be able to go around and talk about abuse against men as I have knowledge and experience about it that can be important to share. In Sweden I was doing research about bullying about 20 years ago and when I left there has not been any more research done. And it is much needed. But first I have to find ways to take care of and improve myself.

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@briansr

To sharonmay7 . with the strength of the meds your taking, stopping
suddenly would make you so sick you do not want to go through that ever. I
have many times and it took me to the floor.

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Brainier. That dosnt sound like fun. And I hope that never happens to me!!!! But like some Hav said,it can happen. I hope the government gets there shit together. Without meds I would spend most of my life in bed!!! It is so hard to Hav others do for me, when I was always the one doing for others! This is the hardest thing for me to deal with! Hope this finds u on a good day. Yours Sharonmay7

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I agree if we could get off some of the pain pills and b able to replace them with that, would b nice!! Anything with out side affects would b nice to try!! I think some people who Hav never had pain thinks we r fracking it!!!! Or we just can’t handle pain!!! But of course that is not true. I’ve been afraid to ask my pain dr. About it. Sharonmay7

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@briansr

To sharonmay7 . with the strength of the meds your taking, stopping
suddenly would make you so sick you do not want to go through that ever. I
have many times and it took me to the floor.

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Thank you sharonmay7. Have to see my GP today and we’re going to have a
talk. I’m real tired of this 2 to 3 hrs of sleep a night. I understand how
you feel. My spine has been crumbling for 33 yrs an is in my thoratic
region. Pretty soon everything will meet together around T-7. I used to
go fishing and camping every year but it’s been 4 yrs since I’ve been
fishing and around 15 yrs since camping. I miss those. My wife walked out
on me 4 yrs ago after 37 yrs for a new guy that can get around better. That
one still hurts but now her back is all messed up. So now she gets to
visit my world LOL!!! We still get along great and talk alot. I’m only 60
and would love just have some companionship by someone who understands me.
Maybe we need to set up a Chronic Pain Dating Site? Call it Park Bench
Dating, the dating site for people in chronic pain and meet at parks just
to sit because that’s about all most of us can do…..LOL Have a good day
and let’s all say a prayer for our group!!!!

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@sharonmay7

I agree if we could get off some of the pain pills and b able to replace them with that, would b nice!! Anything with out side affects would b nice to try!! I think some people who Hav never had pain thinks we r fracking it!!!! Or we just can’t handle pain!!! But of course that is not true. I’ve been afraid to ask my pain dr. About it. Sharonmay7

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I can empathize. To look at me I look pretty normal except for a cane. But
inside my body is screaming. briansr

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@sharonmay7

I agree if we could get off some of the pain pills and b able to replace them with that, would b nice!! Anything with out side affects would b nice to try!! I think some people who Hav never had pain thinks we r fracking it!!!! Or we just can’t handle pain!!! But of course that is not true. I’ve been afraid to ask my pain dr. About it. Sharonmay7

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Yes the know what you mean
I have been having a hard week, and also have to take care of my mom who
has Alzheimer’s, and RA. My sister came directly from Texas, and Four of my
five brothers. I had them all come to see what I have to do for her and to
understand how much I needed there help and support, especially when I’m
when we I’m having flair ups. Just because I have learned to live with my
pain and discomfort with walking and getting up don’t mean there’s no
suffering going on. They seemed to understand and said they would help me,
and try to understand that see don’t mean to be so unkind, she thinks we
are trying to take her freedom, she thinks she’s bath and it’s hard to make
her understand. Everyone one of us has to understand she remember, are use
her mind like she us to. I know I have a problem that might one day cause
me to never walk again. So, because I look alright when they see me they
think I’m fine, now my sister has seen me on my worst, so she understands.
I pray every day but know my bodies wore out but let me keep my right mind.
Our good Lord has keep my. I still work with my husband in the ministry and
do my counciling. But, if the pain is in unbearable I stay in bed, where my
husband put shelves for my books and chairs and a tv-vcr so my six
grandchildren stay with me and watch cartoons are a princes movie. And if
Miss church my pastor records the services account I get to hear. I’m lucky
so far, I haven’t had to be on antidepressants, sometimes it feels like I
could be, I just call for my grandkids and it seems to work. I hope All of
our friends that are on this site stay strong and courageous on these
journeys we are on and I pray that we all have peace of mind and that we
can minister to others by our experiences. Love an Prayers salena54

salena

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Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer’s families that help find patient sitters to relieve you when you need it. Check on the internet for other support.

Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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@19lin

Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer’s families that help find patient sitters to relieve you when you need it. Check on the internet for other support.

Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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Thank lin19 for your help. I will look into the group for Alzheimer’s. I’m
so sorry for your loss. I lost my dad to heart disease, he had heart
surgery and never recovered. That was 15 years ago and I said miss him, he
was my best friend. I have a sister-in-law with fibromyalgia and see how
she suffers from pain and depression. When I was diagnosed with Lupus my
Doctor gave me a lot of information to study and my husband and call to
study, fibromyalgia is a cousin to lupus. They don’t understand these
diseases, they are called diseases because there is no known cures for it.
Know they do have better treatment and it’s no longer a death sentence as
long as you take care of yourself and keep a positive attitude. It’s a hard
disease to find, you almost have to be in a flair up for it to be found.
Thank you for posting me back and have a blessed day.

salena

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@19lin

Selna I can emphasis with your situation. My father had Alzheimers and I have no brothers or sisters plus my Mom passed a few years before from Cancer. Luckily my wife was willing to help. My Dad was not as bad as it could have been, he stayed mobile and able to care for most of his body functions , unlike his sister who was in a nursing home the last few years of her life with Alzheimer’s. I was able to hire people to stay with Dad when one of us could not be there. Also, for good or bad, I was diagnosis with fibromyalgia a year or so before and was able to file for disability retirement from my job so I had time free to help him. If you can set up with a local group of support for Alzheimer’s families that help find patient sitters to relieve you when you need it. Check on the internet for other support.

Now the bad news I heard on the new that the feds are requiring all doctors who give opioids to take special training course to use those meds. This is just going to make it harder for all of us. Any day I expect to hear from my Doc that he will no longer be able to prescribe meds either because of fed regulations or his clinic’s refusal to give them out. Good luck 19lin

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HI in regards to worrying about using opposes there’s is nothing wrong with
going to a pain specialist and doing what you have to in order to get them.
They are the best Dr to go to because they are going to make sure you are
taking it safely. Overdosing and dieing from drinking or using other
drugs will lead to death. A pain specialist will keep you from dieing. I
think that’s more important than keeping your Dr.

Liked by faysie

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Suebreen hi I’m sharonmay7. I totally agree with you!!!! I have been with my pain dr. For 20+years. And the only time he gives me a hard Time is if he finds other meds in you pee sample. I’ve taken a different pain pill a few times cause I was not home and was having a hard time. But like he said you should ALWAYS be aware what u put in your system!!! A different drug could up set your balance. That is how people end up dead. It took me years to learn how to use the medicine properly. I use the fentenol patch. And u forget sometimes cause it is always working. Once I left it on while working in my flower garden the next day when I woke up I was a mess. I did not understand that if your body temp. Warms up then the patch will down load all of the medicines at one time!!! Has anyone else out there who had this problem with the patch??? Thanks

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@sharonmay7

Suebreen hi I’m sharonmay7. I totally agree with you!!!! I have been with my pain dr. For 20+years. And the only time he gives me a hard Time is if he finds other meds in you pee sample. I’ve taken a different pain pill a few times cause I was not home and was having a hard time. But like he said you should ALWAYS be aware what u put in your system!!! A different drug could up set your balance. That is how people end up dead. It took me years to learn how to use the medicine properly. I use the fentenol patch. And u forget sometimes cause it is always working. Once I left it on while working in my flower garden the next day when I woke up I was a mess. I did not understand that if your body temp. Warms up then the patch will down load all of the medicines at one time!!! Has anyone else out there who had this problem with the patch??? Thanks

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Suebreen I use fentenol and I found out if they get too warm before using them they are useless. I have no experience with them unloading meds too soon in heat. That sounds dangerous they should warn you about it. 19lin

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@sharonmay7

Suebreen hi I’m sharonmay7. I totally agree with you!!!! I have been with my pain dr. For 20+years. And the only time he gives me a hard Time is if he finds other meds in you pee sample. I’ve taken a different pain pill a few times cause I was not home and was having a hard time. But like he said you should ALWAYS be aware what u put in your system!!! A different drug could up set your balance. That is how people end up dead. It took me years to learn how to use the medicine properly. I use the fentenol patch. And u forget sometimes cause it is always working. Once I left it on while working in my flower garden the next day when I woke up I was a mess. I did not understand that if your body temp. Warms up then the patch will down load all of the medicines at one time!!! Has anyone else out there who had this problem with the patch??? Thanks

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What you say is true. Read the insert inside each box and it describes the
dos & don’ts and excessive heat external, heating pad etc, and external,
fever, hot tub, working hard. On and on. Personally I don’t think it will
kill you but I AM NOT A DOCTER!!

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Hello group! I’m almost 34 years old and suffer from Chronic pain. I have had 16 surgeries and have been a patient at the Mayo Clinic in Scottsdale for almost 3 years now but I live in Idaho and have to travel down to Arizona every three months for a month or so of treatment and testing and Doctor appointments and just even thinking of packing and flying down makes me hurt even more. But in all seriousness I do struggle with the long trip down to Scottsdale and then making it to all of my appointments and giving hundreds of vials of blood and doing all the test and my existence is just painful all the time 24/7! I have a pain Doctor in Boise but they make everyone at their clinic only take extremely low doses of pain medication a day and DONT GET ME WRONG I WOULD KILL TO NEVER HAVE TO EVEN LOOK AT A NARCOTIC PAINKILLER AGAIN BUT I DONT EVEN GET TO A 5-6 ON THE PAIN SCALE!

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