Chronic pain - Let's talk

Posted by leh09 @leh09, Mar 23, 2016
@bob815c

Hello Sharonmay7,

Thanks for your reply! I apologize for getting back to you so late — its
9:28 PM and my day (night) is just starting. I’ve been asleep almost all
day since 6:30 AM when I tried to start today. Yes the pain is really bad
today. I’ve had to resort to taking the prescribed narcotics to try to
ease the pain, and one of their several side effects is that I sleep all
the time.

Although I have a B.S. in telecommunications, I can’t find a job because I
always have to take a nap during the normal workday. Additionally, no
company wants to take a chance on me because I am too much of a liability.
If I fall on the job, they all think I will sue the company. Even though I
have offered to sign a waiver stating I would never sue any company that
interviewed me, I have still been rejected. Yes it’s really tough trying
to live on a fixed income. Sometimes I get so mad at the politicians who
always seem to find a “loop hole” so there is rarely a real COLA on my SSDI
check, but really that doesn’t help. I have finally realized that a bad
attitude doesn’t help the pain at all.

I have tried just about every “latest cure” for the arthritis, but nothing
has truly worked. My last attempt was to buy Dr. Ho’s pain therapy system
— but it barely helps. It’s a TENS unit that is pretty strong and has 7
modes or treatment options. The real problem though is that for it to
really work, I need to attach 16 TENS pads to my whole body, and then run
it all day long. Additionally, it does nothing for the constant migraines
I suffer from.

I too joined this site in hope that I might be able to find something that
will help me. So it was really nice to hear from you. I have tried and
tried to help my family (brother and sister-in-law and their grown
children) to understand why I rarely make any of the family get togethers,
but honestly, they have no clue. Although I wouldn’t wish this on my worst
enemy, it wasn’t until my brother hurt his knee and couldn’t walk without
limping, that he finally caught an idea of what it’s like to have constant
pain all the time. Fortunately, a shot of cortisone eliminated his knee
pain so of course, he told me to make sure I should see his doctor so I
could get cortisone shot in every area that causes the pain. I kept his
request to myself because I would need at least 30 or more shots of
cortisone if it were to help, and there is no guarantee that it would
help. Oh well…

Thanks so much for listening Sharonmay7! I really appreciate being able to
talk or chat with someone about this hell I live in. I think the hardest
point for me is that I watch my body falling apart while my mind is still
active. Unfortunately another side effect of the narcotics is that I can’t
seem to remember much of anything. My short term and long term memory is
fading, and if I don’t write most everything down and make notes for
myself, I forget what I am doing.

I hope you don’t mind, but I added your name to my prayer list, and truly,
I pray that things will improve for you. If you don’t mind, and please
know I am not a ‘stalker,’ what state are you located in? Thanks, I live
in Arizona — actually I live in Tucson, Arizona. Thank you again for
the good thoughts and your wish for better nights for me. I do hope to
hear back from you as well.

Best Wishes,

Bob815c

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HI I miss most family get togethers. It depends if I had a epidural
lately. My sister is coming to town and will be staying with my so who has
4 children. I’ll try to come over one night to watch a family movie.last
4th of July they all came here and made a camp fire and lite different
sperkler products. .Then they went to the fireworks. I make it to
thanksgiving, Christmas, Easter, you know. Once I get to my sons I don’t
do a lot. I’m there a few hours and they live close. However on a daily
basis everyone has to come to my house. I live alone with my cat and dog. I
don’t feel well enough to have my grandchildren over that much and they
are the best thing to make me happy. It’s important that we are in this
together. It’s never just you. I have gotten better mentally but there are
always those downs. Knowing I can talk here is great. I thought you might
like to know someone else who doesn’t go do a lot. It was a problem
when I was married. Turns out I married the wrong person. I hope this
let’s talk is helpful to you.

REPLY

Your so right! You are never alone as long as you reach out. But when I don’t feel well, sometimes I just want to be left alone in a dark, quite, room. But that is cause I get migraines! But it is hard to enjoy company when your in pain of any kind!! As I’m sure u know what I mean! Thank god I have a great man to love me through it. Sometimes I feel bad for him! It seems like he is always taking care of me! It helps to have someone who at least tries to understand how i feel, When I’m in bad pain.
When u feel lonely you can almost always find someone who is up! Just pop into this site and send off a few words!! I will be checking for you. Hope today is better then your yesterday!! Yours. Sharonmay7

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@sharonmay7

Your so right! You are never alone as long as you reach out. But when I don’t feel well, sometimes I just want to be left alone in a dark, quite, room. But that is cause I get migraines! But it is hard to enjoy company when your in pain of any kind!! As I’m sure u know what I mean! Thank god I have a great man to love me through it. Sometimes I feel bad for him! It seems like he is always taking care of me! It helps to have someone who at least tries to understand how i feel, When I’m in bad pain.
When u feel lonely you can almost always find someone who is up! Just pop into this site and send off a few words!! I will be checking for you. Hope today is better then your yesterday!! Yours. Sharonmay7

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You are very fortunate to have a wonderful man in your life. My husband
of 23 years couldn’t do it. He became abusive, I should say more abusive.
When I wasn’t disabled I ignored it. When I was I depended on him. I
couldn’t work and he wasn’t having any of it. It turns out to be for the
best of course, wish I had left him from the beginning.

I’m having my epidural may 5th so I’m hoping I can do more this summer.

It’s really nice to hear about good men. As good as talking to people who
experience pain because other people don’t understand pain the way we do.

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@sharonmay7

Your so right! You are never alone as long as you reach out. But when I don’t feel well, sometimes I just want to be left alone in a dark, quite, room. But that is cause I get migraines! But it is hard to enjoy company when your in pain of any kind!! As I’m sure u know what I mean! Thank god I have a great man to love me through it. Sometimes I feel bad for him! It seems like he is always taking care of me! It helps to have someone who at least tries to understand how i feel, When I’m in bad pain.
When u feel lonely you can almost always find someone who is up! Just pop into this site and send off a few words!! I will be checking for you. Hope today is better then your yesterday!! Yours. Sharonmay7

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Suebreen55, Yes they don’t come around very often kind a like a unicorn!!! He’s not a angel but better then most. He loves to cook!!!!! And likes to do the grocery shopping! You don’t find them around to much for sure!!!at least he tries!!! I got lucky the second time. Maybe u will too. Now days I don’t go out much. But I’m doing a lot better then I was last year. So I am very great full for that!!! Now if I could get him and my son not to hate each other I would b in great shape!!!! My so lives up stairs. And has some medical and mental problems. They don’t often get along. Just like pain is hard to understand mental illness is another one many do not understand ….. Well I hope ur feeling well to day. Sharonmay7

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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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Anyone out there ? I’m losing hope…

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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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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.

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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

REPLY
@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!!!!!!!!!!!!!

Jump to this post

@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.

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