Chronic pain - Let's talk

Posted by leh09 @leh09, Mar 23, 2016

Are there any discussions for chronic pain?

Liked by SpineAZ, bob815c

@jvivian

I’ve been diagnosed with pulmonary fibrosis with extreme pain due to my psoriatic arthritis. Methotrexate has calcified my lymph nodes and I feel hopeless. My pain is not under control due to the fact that it’s against hospital policy to administer any pain relief in my life. Nobody cares. I hate the thought of my remaining years suffering. HELP ME PLEASE or HELP ME DIE!!!!!!!!!!!!!

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Hi @jvivian,
You are not alone.
I moved your messages to this discussion “Chronic Pain – Let’s Talk” so that you can connect with others like @briansr @19lin @seanbeck @leh09 @ladyjane85 @sharonmay7 @salena54 who know what it is like to live with constant and often extreme pain.

Talk to us. We’re here.

Liked by Ali Skahan

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@jvivian

I’ve been diagnosed with pulmonary fibrosis with extreme pain due to my psoriatic arthritis. Methotrexate has calcified my lymph nodes and I feel hopeless. My pain is not under control due to the fact that it’s against hospital policy to administer any pain relief in my life. Nobody cares. I hate the thought of my remaining years suffering. HELP ME PLEASE or HELP ME DIE!!!!!!!!!!!!!

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@jvivian Sorry for your situation Pain is very difficult and when mine is at its worst I can not do anything.

You can check with right to die groups, but first you need to write to your elected officials to tell them what is happening. This could help U as well as all the rest of us.

In the news I have already read of many deaths due to the new policy of no opioids. These were from people cut off by official sources who went on the black market and got bad pain medicine that killed them.

The best thing is to go to another town or state and seek help. Also talk to pain doctor about hospice or the use of another non narcotic drug used to help additics come off opioids. This can also help with pain I am told. Called methadone or something else can’t think of the name right now.

One person I talked to told me it helped her with her pain, but her doctors did not tell her about it right away because they did not make as much money from it.

If all else fails there are end of life groups on the internet. Most do not want this, but it may become the real way if they do not do something about the pain.

One article on Oregon law say that many who are eligible get the end of life pills then never use them. Just knowing they are there and they can take them immediately if the pain get to bad helps them get through until nature (God) take them naturally.

I can give you more info if you can contact me on my web site, but the controller here will not let me put it on here. If allowed I can give you information on end of life and I will try to find the name of medicine this other person told me that helped her. Good Luck. 19lin

Sent from Windows Mail

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@jvivian

Anyone out there ? I’m losing hope…

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Hi @jvivian,

I know and fully understand what you’re going through. Chronic pain is a serious matter and you should be taken seriously. I also know what it’s like to lose hope, years ago I suffered from the same battle, but beat through it one day at a time.

Are you taking any over the counter meds?

I too suffer from Psoriasis and other chronic illnesses. I find Aleve to be the best to relieve the inflammation the pain does to your body. Aleve will also help to relieve the swelling for the lymph nodes. Mine are also hard as a rock and not fun to deal with.

I would also get a Aloe plant, break off a branch and rub it on the affected areas of skin. This will help to sooth the areas of your body that feel like they’re burning.

Have you admitted yourself to the hospital for thoughts of suicide? You’re not alone in this fight. By admitting yourself because you have thoughts of wanting to die due to massive pain, you might have a better chance to see a pain specialist while they help you with the mental battle of chronic pain.

I find meditating helps to ease the mind and control my thoughts. Sleep doesn’t seem to help since pain just wakes me up anyways.

Have you anyone you can speak with? A friend? A family member? Speaking to someone close to you is important to help release these thoughts that you have.

I hope this helps! You’re not alone.

Regards,
Martin

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@jvivian

I’ve been diagnosed with pulmonary fibrosis with extreme pain due to my psoriatic arthritis. Methotrexate has calcified my lymph nodes and I feel hopeless. My pain is not under control due to the fact that it’s against hospital policy to administer any pain relief in my life. Nobody cares. I hate the thought of my remaining years suffering. HELP ME PLEASE or HELP ME DIE!!!!!!!!!!!!!

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@19lin to contact another member privately and safely, feel free to use the private message function on Connect. Simple click a member’s @username and then click the envelope icon.

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@jvivian

I’ve been diagnosed with pulmonary fibrosis with extreme pain due to my psoriatic arthritis. Methotrexate has calcified my lymph nodes and I feel hopeless. My pain is not under control due to the fact that it’s against hospital policy to administer any pain relief in my life. Nobody cares. I hate the thought of my remaining years suffering. HELP ME PLEASE or HELP ME DIE!!!!!!!!!!!!!

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Jvivian, sorry for your pain. I understand how it feels and how depressing it can be. I hope you find the answers u r looking for. I will keep you in my prayers!!! Here is hoping your night is better then last. Yours, sharonmay7

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This is briansr to Jvivian, this year brings me to my 33rd anniversary and
there’s no happy involved!. Spent all of the past 30+ hrs with no sleep,
120 mile round trip to Dr, then a 4 hour wait to not see my own Dr. He was
too busy hopping from surgery sweet to another so he could play. He’s an
anesthesiologist wanna be surgeon but he owns the hospital. Four hr wait,
2 minute visit with s different Dr, and my list of questions will have to
wait. Wasn’t like this 4 yrs ago so I will be looking for more personal and
pallatative care. NO MORE SURGERIES, NINE AND THERE AFTER ME AGAIN. I’M 60
YRS OLD AND WOULD LIKE TO ENJOY WHATS LEFT. And with all the problems plus
alot more, I just can’t take much more. This place is turning into a
factory, ESP. for Medicaid, which I don’t have. Today I got word of a pain
Dr I had 25 yrs ago and am going to look him up. Wish me luck!!! brian SR.

Liked by salena54

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@briansr

This is briansr to Jvivian, this year brings me to my 33rd anniversary and
there’s no happy involved!. Spent all of the past 30+ hrs with no sleep,
120 mile round trip to Dr, then a 4 hour wait to not see my own Dr. He was
too busy hopping from surgery sweet to another so he could play. He’s an
anesthesiologist wanna be surgeon but he owns the hospital. Four hr wait,
2 minute visit with s different Dr, and my list of questions will have to
wait. Wasn’t like this 4 yrs ago so I will be looking for more personal and
pallatative care. NO MORE SURGERIES, NINE AND THERE AFTER ME AGAIN. I’M 60
YRS OLD AND WOULD LIKE TO ENJOY WHATS LEFT. And with all the problems plus
alot more, I just can’t take much more. This place is turning into a
factory, ESP. for Medicaid, which I don’t have. Today I got word of a pain
Dr I had 25 yrs ago and am going to look him up. Wish me luck!!! brian SR.

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Good luck briansr – I am a young looking 85, but the severe pain in
back for over 25 years is too much. Cannot tolerate meds. The 4th pain
management dr I saw a couple weeks ago said there was nothing more
they can do for me. Yes, have had too many surgeries and procedures
with nothing that worked…..@ladyjane85

Liked by salena54

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@briansr

This is briansr to Jvivian, this year brings me to my 33rd anniversary and
there’s no happy involved!. Spent all of the past 30+ hrs with no sleep,
120 mile round trip to Dr, then a 4 hour wait to not see my own Dr. He was
too busy hopping from surgery sweet to another so he could play. He’s an
anesthesiologist wanna be surgeon but he owns the hospital. Four hr wait,
2 minute visit with s different Dr, and my list of questions will have to
wait. Wasn’t like this 4 yrs ago so I will be looking for more personal and
pallatative care. NO MORE SURGERIES, NINE AND THERE AFTER ME AGAIN. I’M 60
YRS OLD AND WOULD LIKE TO ENJOY WHATS LEFT. And with all the problems plus
alot more, I just can’t take much more. This place is turning into a
factory, ESP. for Medicaid, which I don’t have. Today I got word of a pain
Dr I had 25 yrs ago and am going to look him up. Wish me luck!!! brian SR.

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I am 60 but most people think I look 45. DR’s say your still young, well my
mind is 25 but my body feels 95. And the one big problem, and I’m sure most
can attest to, there isn’t any possible way to tell anyone what you go
through 24/7 as is the same when someone tells you how they feel. I always
know that there is someone in a lot worse shape than I am, and there are
millions. I’ve been wanting to write a book for a long time. It’s something
that I need to get out into print, I just can’t seem to start. When I do,
AND I WILL, I won’t be able to write as fast as I think. But I’ve got to
get it out, I hope before I pass. briansr.

Liked by salena54

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Thank you, and God bless all people in pain, physical and or mental, young
and old!

Liked by salena54

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I have Chronic Migraines and just been diagnosed with Chronic Neck pain also. My recent Neuro has given me two boot shots in 6-months for migraines but not all that effective. I do have “preventive” rx’s but I’m still suffering from them. PLEASE, can anyone suggest anything else I can try? I have done accupuncture, hyperbaric chamber that helped at first then stopped working. Imitrex caused a heart attack and I also tried epidurals and that stopped working.

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Hi @diamond22, and welcome to Connect. I’m glad you’ve reached out through Connect for suggestions on relieving your neck pain. I moved your post to the Chronic Pain – Let’s Talk discussion as there are many members who are discussing this topic and experiencing similar pain symptoms.

I’m also tagging @leh09 who has also received epidurals for pain, and @seanbeck and @sharonmay7.

@diamond22, how are you currently managing the pain?

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@alysebrunella

Hi @diamond22, and welcome to Connect. I’m glad you’ve reached out through Connect for suggestions on relieving your neck pain. I moved your post to the Chronic Pain – Let’s Talk discussion as there are many members who are discussing this topic and experiencing similar pain symptoms.

I’m also tagging @leh09 who has also received epidurals for pain, and @seanbeck and @sharonmay7.

@diamond22, how are you currently managing the pain?

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As mentioned, my Neuro gave me the 2nd dose of Botox this month and I’m on
preventive medicines. I even used the Cefaly but that stopped working
too. Right now, nothing is working.

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Hi everyone,

The discussion around chronic pain in this thread and other threads has grown to such a point that we, the community moderators, thought that it was time to open a new group dedicated to this topic.

Welcome to the new Chronic Pain group. Feel free to browse the topics or start a new one here https://connect.mayoclinic.org/group/pain/.

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@alysebrunella

Hi @diamond22, and welcome to Connect. I’m glad you’ve reached out through Connect for suggestions on relieving your neck pain. I moved your post to the Chronic Pain – Let’s Talk discussion as there are many members who are discussing this topic and experiencing similar pain symptoms.

I’m also tagging @leh09 who has also received epidurals for pain, and @seanbeck and @sharonmay7.

@diamond22, how are you currently managing the pain?

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I have had every epidural but they do not work either on my 25+ yrs of
pain. The body isn’t fooled anymore , I guess, but I respond badly to
all pain meds. The implanted stimulator gave me more problems….

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When I made my first post to the Let’s Talk, Chronic Pain, I knew there was a need but never imagined we would get our very own thread. I have suffered chronic pain for “only” 5 years but it feels like a lifetime already. The struggles that this group faces is unique that it has no measurable indicator. Pain is subjective. What is a 7 to me might be a 5 for someone else or vice a versa. It’s difficult for others to understand because we look so normal on the outside. For some of us there is a defining injury; a missing limb, bulging or ruptured discs, or a known pain producing illness. There are others of us that have no definable reason for our pain and yet we are in agony. We have been told that we need psychological counseling or that we must have a low pain tolerance (my personal favorite). I’m so happy that we now have a place that we can come together to listen to each other’s stories without fear of judgement. Let’s keep this discussion alive and going for us and for those that will inevitably walk the same painful path.

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