ladyjane85 I am sorry you have so much pain, I think all of us here suffer a lot and it seems they (the rulers) are trying to make it more. I have lost count of the surgeries I have had and I have decided to not have any more if at all possible. I am 68 and have had chronic pain since I was 20 so I think it is time to stop prolonging things and let God make the decisions for me. I hope things go well for you and that if you have this surgery it will be the one to make things better for you. I have talked to my doctor about things and he suggested a hospice? I need to explore that more with him. God Be With You. 19lin
19lin Are you able to dress yourself and do a bit each day? I went into a continuing care community where I have my own apartment, with light housekeeping done, and a dining room for meals (or can be sent up on a tray). When I get worse I will go to assisted living – the they he nursing and rehab on campus, and a memory care building. Or there are living facilities where you start off in assisted living. I cannot believe dr suggested hospice unless you are near death’s door. Please look into other facilities where if money runs out you will be helped by medicaid.. The very best to you. ladyjane85 I am now 86, can often go up o 10 pain level in back, but can still drive to drs.
@briansr I agree, enough with surgeries. Are you living in a facility where you are put either in Independent Living or Assisted Living? If you are living alone one must look into a facility where you can be helped. I am in a Continuing Care place in an Independent Living apartment. It is expensive to get into but they can never throw you out, you just move up to more assisted parts. Even a spouse can live with one. Do not give up – my very best, ladyjane85
ladyjane85 I am sorry you have so much pain, I think all of us here suffer a lot and it seems they (the rulers) are trying to make it more. I have lost count of the surgeries I have had and I have decided to not have any more if at all possible. I am 68 and have had chronic pain since I was 20 so I think it is time to stop prolonging things and let God make the decisions for me. I hope things go well for you and that if you have this surgery it will be the one to make things better for you. I have talked to my doctor about things and he suggested a hospice? I need to explore that more with him. God Be With You. 19lin
@19lin I’m glad that you have a doctor that you can speak frankly with about life decisions. I was reviewing your posts to remind myself of your health issues and I see that you have helped so many people on Connect. Thank you.
This is a wonderful discussion. So many pain sufferers need to know how pain affects people differently. Managing pain is more of an art form than science, but the two go hand in hand.
The four biggest areas of pain management I always look at for myself are:
1) Brain receptors
2) Targeted pain on areas of the body
3) Stress relief
4) Diet and exercise
I mean when it comes to the “science” of pain, we could simply take medications that disrupt pain receptors in the brain limiting neurons from firing, but in my experience (i.e. opiates, and the like) also have a negative affect on the quality of life, giving pain patients what is known as “brain fog”, loss of memory, sleep disorder and so on.
On the flip side, attacking the areas of pain alone is sometimes not enough. So I’m constantly asking people, what’s their “perfect” mix of the two. Being unbalanced with either one can label you as an opiate user, abuser of the system, but not taking the right combination can play a huge role in the quality of life that you have and your mental state as a hole.
Then there’s the debate about over-the-counter vs. prescribed medications. Which ones do you chose when your pain meds don’t work? Is it appropriate to go out and add Tylenol, Aspirin and Aleve to the mix? When is it acceptable behavior or not? What affect will it have on your system, especially your stomach and the increase of acids.
Now one of my favorites and often overlooked is more natural ways to conquer pain, specifically meditation. Since pain is all but managed through the brain, then in my opinion meditation is the method underutilized to “clean up” the junk in the mind that’s coming in. Or another way to put it, when you meditate, it’s like “cleaning up” your computers hard-drive so that the computer itself goes much faster afterwards.
Daily medication doesn’t mean sitting in some spiritual room with candles and scented incense. No, for your it could mean having some quiet time with tea in the morning reflecting on your day, outlining your goals for the day (as the pain allows, or as others would call “the # of spoons), and allowing your mind to filter out the stuff that increases your stress in order to tackle the pain coming in.
Stress I find goes hand in hand with pain as well. Finding “me time” is so important to decrease pain on a daily basis. Less stress = more active, better sleep, and easier to manage pain. Do whatever you need to relax your mind and body on a daily basis (I understand hard to do while in pain, but daily rituals will help eventually).
Most people are shocked when they hear that i’m in chronic pain. I rarely show it to people around me. Sometimes it’s hard not to show it, which can be exhausting depending on the level of pain you have and what’s affected.
Over the last 20 years, I’ve survived multiple blood clots throughout my body. I’ve had massive open wounds for 10 years straight, my legs are constantly wrapped with bandages and compression bandages. Rarely does anyone see me with shorts so I don’t have to explain to them what it is and what they’re for. But over time, I’ve found that by hiding my pain only increases my stress and doesn’t allow my brain to release it, talk about it, or be ok with asking for help.
I hope this peaks more discussions on “daily tips” or “rituals” that you do which helps to decrease pain. I think it’s obvious here that we all have experience with meds and our own pain management, but I’m really interested to hear what else I can try from your own experiences!! 🙂
I completely agree with you that exercise needs to be a part of my pain management regime. At this point right now it is not part of my morning “to do list” because I am at a point where I had to stop for a brief period. I have seen a physical therapist at my pain clinic and I am hoping and praying that after this months recheck visit I can go back and resume that part of my care. Exercise is what keeps my joints moving and loose and I make sure to drink at least 5 glasses of water (I have a large glass I drink from) to help my joints too. Stretching and exercise go hand in hand for me too. I stretch out the areas I need to exercise before I do my PT exercises and I feel amazing afterwards!!
I pour a big glass of Dr Pepper to get my caffeine buzz. It’s a guilty pleasure for me. I have never liked coffee. ❤️
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.
Bob, you were talking about not being able to keep a job because needing to take naps. I have a Pain Pump with Hydromorphone, Fentanyl and Bupivicaine that pumps these Opiiods into my system all day long plus I take up to 4 Hydrocodone 10/325 tablets a day plus 300 mg of Lyrica. I got where I was going to sleep at stop lights, or be driving and all of a sudden realize that I was somewhere I had not intended on going
, just sort of woke up and was there with no memory of going there. My doctor put me on 500 mg of Nuvigil and that hjas solved the problem. Hope this helps you.
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.
Hi all! Though holiday weekends are something to look forward to, we know they can also be full of activities which can be hard on those with chronic pain. How was everyone’s long weekend? Were you able to manage the pain and enjoy some fun and relaxation? Wishing you all the best!
Success101 I have got so much pain from Foot injury went to knee after falling and in hip. I struggle to get things done. Like shop and household chores. No one has suggested pain meds,but At this point I could chew on leather. Have been to orthopedics Pt. Now, chiorpractor. Anyone,have suggestions. Start over with clean slate or Go to Rochester Success 101. I don’t like to rely on family,as,i am caretaker for husband.
Hi all! Though holiday weekends are something to look forward to, we know they can also be full of activities which can be hard on those with chronic pain. How was everyone’s long weekend? Were you able to manage the pain and enjoy some fun and relaxation? Wishing you all the best!
Usually, if I stay really busy, my pain recedes in my mind. However, that is not always possible, so I am always on Gabapentin and Nortriptlin. Still not much help relieving my pain, though. Northrip helps me sleep, however.
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19lin Are you able to dress yourself and do a bit each day? I went into
a continuing care community where I have
my own apartment, with light housekeeping done, and a dining room for
meals (or can be sent up on a tray). When
I get worse I will go to assisted living – the they he nursing and rehab
on campus, and a memory care building. Or
there are living facilities where you start off in assisted living. I
cannot believe dr suggested hospice unless you are
near death’s door. Please look into other facilities where if money runs
out you will be helped by medicaid.. The very best to you.
ladyjane85 I am now 86, can often go up o 10 pain level in back, but can
still drive to drs.
@briansr I agree, enough with surgeries. Are you living in a facility
where you are put either in Independent Living or
Assisted Living? If you are living alone one must look into a facility
where you can be helped. I am in a Continuing Care
place in an Independent Living apartment. It is expensive to get into but
they can never throw you out, you just move up
to more assisted parts. Even a spouse can live with one. Do not give up –
my very best, ladyjane85
@19lin I’m glad that you have a doctor that you can speak frankly with about life decisions. I was reviewing your posts to remind myself of your health issues and I see that you have helped so many people on Connect. Thank you.
As you may be considering hospice, perhaps you’d like to share on this discussion thread https://connect.mayoclinic.org/discussion/colleenyoung-as-you-know-through-my-posts-ive-had-epilepsy-migraines-in/ where Kay asks: “At what point do I bring Hospice into the picture?”
@success101
I completely agree with you that exercise needs to be a part of my pain management regime. At this point right now it is not part of my morning “to do list” because I am at a point where I had to stop for a brief period. I have seen a physical therapist at my pain clinic and I am hoping and praying that after this months recheck visit I can go back and resume that part of my care. Exercise is what keeps my joints moving and loose and I make sure to drink at least 5 glasses of water (I have a large glass I drink from) to help my joints too. Stretching and exercise go hand in hand for me too. I stretch out the areas I need to exercise before I do my PT exercises and I feel amazing afterwards!!
I pour a big glass of Dr Pepper to get my caffeine buzz. It’s a guilty pleasure for me. I have never liked coffee. ❤️
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1 Reaction@bekie.
I love it,keep doing what your doing.
Success101
Bob, you were talking about not being able to keep a job because needing to take naps. I have a Pain Pump with Hydromorphone, Fentanyl and Bupivicaine that pumps these Opiiods into my system all day long plus I take up to 4 Hydrocodone 10/325 tablets a day plus 300 mg of Lyrica. I got where I was going to sleep at stop lights, or be driving and all of a sudden realize that I was somewhere I had not intended on going
, just sort of woke up and was there with no memory of going there. My doctor put me on 500 mg of Nuvigil and that hjas solved the problem. Hope this helps you.
What is Nuvigil?
Hi all! Though holiday weekends are something to look forward to, we know they can also be full of activities which can be hard on those with chronic pain. How was everyone’s long weekend? Were you able to manage the pain and enjoy some fun and relaxation? Wishing you all the best!
@suebreen54, @briansr, @19lin, @leh09, @ladyjane85, @seanbeck, @mlemieux
it is another name for fibromyalgia…they are starting to use that term more now.
Success101
I have got so much pain from
Foot injury went to knee after falling
and in hip. I struggle to get things done.
Like shop and household chores.
No one has suggested pain meds,but
At this point I could chew on leather.
Have been to orthopedics
Pt. Now, chiorpractor.
Anyone,have suggestions.
Start over with clean slate or
Go to Rochester
Success 101.
I don’t like to rely on family,as,i am caretaker for husband.
Usually,I’ll only take 2 Tylenol pm @ night.Or a tramadol,if I’ve a migraine.but,I’m sure others’re having trouble coping with their pain 2.Huh?Thx!
Usually, if I stay really busy, my pain recedes in my mind. However, that is not always possible, so I am always on Gabapentin and Nortriptlin. Still not much help relieving my pain, though. Northrip helps me sleep, however.