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.

@gingerw

@guga Just as we were setting up to move to this new state/area, it became clear I was entering into yet another serious health issue. I actually reached out to someone here on Mayo Connect, whom I did not know, but did realize this person was "in the area" of my new residence. And was able to connect with a wonderful specialist, who also connected me to my other great specialist. This person gave me their opinion as to health options around [it's pretty much a medical desert here], which were confirmed by some other residents. I was fortunate to find a good FNP [family nurse practioner] as my primary care.
Ginger

Jump to this post

@gingerw I saw where winter is upon the Northern states . Hope you have a snowblower or tractor with plow your going to need it or shovel at least .

REPLY
@1prettymess

It’s 9/29/19 as I read your post. I hope your still around cos I genuinely would like to know how your doing.

I’m literally on the verge of tears as I read your message. I suffered a broken back.

I was in a car wreck when I was 17 way back in 1977…
They did the thing where they used park of my hip bone to fuse and put Harrington rods in my back. From what I remember I think it was L5 location.

3 months after my surgery I told one of the surgeons my back was hurting and bless his heart he said Vicki I’m sorry darling your going to have some back pain the rest of your life.

I never dreamed I’d be where I am today 😞

Approximately 22-24 years ago my back just started to progressively get worse over a few month time period…from pretty darn bad to almost intolerable…I’ll never forget that day.

My husband came in and I was mopping the kitchen floor crying. I told him how bad I was hurting and he took me to an urgent care type of place.

I had went to my general practitioner a few months earlier and she diagnosed me without doing an X-ray with fibromyalgia.

Back then I had never heard of fibromyalgia. Not many people had.

The day I was mopping the dr at urgent care was flabbergasted when he saw the X-ray… the bolts ard screws were about 2-5 inches ABOVE the rods…and just kinda tossed about my back.

That started a series of doctors.

Some were stunned some acted like I was complaining to get pain meds.

ONE of the surgeons that worked on me that I went to see literally laughed at me and said I should not have pain because of the area where the rods were!

He was one of the first Drs I went to and he said to take Tylenol! LOL

Is It terrible I hope he suffers the same pain I do one day and they don’t relieve his pain either? 😞🤭😱

I hate to say that. For over 20 years I’ve never been so heinously nasty as i have been lately. I have pain and definitely emotional issues this past few months ranging from bad to worse.

In the past 20 years I’ve had on and off pain with some relief here and there.

Tonight is a bad night… I’ve not been able to sleep due to about a level 8 pain but I also have nausea which I read somewhere years ago because the rods can corrode over time and cause nausea.

Also when my pain gets really bad I get nauseous.

I was on the “ oh so dreadful “ Fentanyl patch for 14-15 years up until 4 months ago but due to the opioid crisis and because the patch kept peeling off of me (I’ve already tried everything trust me) but I also have this very mild all over body moist type of sweat that happens to me…plus I’ve lost about 150ish pounds in the past 3-4 years ( at one time I was almost 280ish pounds. I now weigh 116-120…so besides getting older and having that crepe skin…now I have lose skin from losing so much weight…the patches would literally just curl up around the edges and eventually fall off😞

Which meant when I put them back on they only relieved my pain about 20% as effectively as they did when they just stayed on like they should…

Thank God…they did work pretty well for 14-15 years.

And I was able to work from home 90% of the time… I was blessed.

Don’t get me wrong I had some miserable days thru the years but compared to the level of pain I was in when they put me on the fentanyl patch and where I am today? Oh heavens I could ride a race horse! 😇

But now I’m on the Belbuca patches. You put them in your jawl and let them dissolve.

I’ve never been below a level 6-7 pain in the past 4-5 months 😞

My pain management doctor of 13 years weaned me off the fentanyl. I was only on the 75 strength patch. Which helped me pretty well. But weaning off the patch to go on to Belbuca was hard…my pain level ranged from 4-8…but I lived.

I’ve just started to really research info about broken rods and chronic pain the past few months.

I’ve lied about my pain levels since I was literally 17 years old. I never wanted to aeem like a cry baby..

Like you… I didn’t want to stop working. I didn’t and DON’T want to be on a limited income.

I am still working.

A few years ago I started to have seizures when I was in withdrawals because the patches were coming off and yes…I’ll be honest I would put a new patch on earlier than I was supposed to. But I always did it thinking I could stretch the remaining patches out here and there.

You would just NEVER EVER know the sheer terror of sitting there looking at a new patch…and your in so much pain you feel nauseous, your light headed and your family is due to come over for dinner the next day and you want to make your homemade spaghetti and meatballs with lemon icebox pie.. sweet tea…and homemade chicken nuggets for the grandkids…BUT you can’t because your low back hurts from one side to the other…your neck and shoulders hurt so bad…it’s like you can literally feel the bones inside your body … I can FEEL the curves of my shoulders and the actual joints…and they just have this horrible achey feeling but I can’t say it’s a dull ache because they just hurt AND burn so bad even if I rub them that hurts too the touch…my low back hurts and burns BUT it’s like the muscles in and around the low back and hip bone area aches and burns SO terribly bad I think it’s causing me stress because my upper shoulder and neck also aches and burns.

I’m just trying to really give a good description of what my stupid body feels like at this very moment…

😞

I am SO sorry to say all this …now I’m even thinking about deleting this because I absolutely don’t want to take away your hope…
Cos for 40 plus years hope has kept me going…

When I had pain I would just tell myself one day they will be able to find something to fix me…

That was back in 1979 when I had to redo senior year because of back pain…

I’ve recently been tweeting about chronic pain patients…the fact that I didn’t get my Fentanyl from China I got mine from the local Pharmacy… I pointed out that I never failed a urine test patch count and I’ve been with the same pain management doctor for 13 years and same pharmacy for 12 years…

I post pics of my X-rays whenever and wherever I can…

I so wish this site allowed uploading pictures…

I just wonder how you are doing?

I think the ONLY thing worse than being a 58 year old woman with broken rods would be a young man like yourself with a wife and child that you WANT to support….

I really hate to admit this but I never thought about a man having this problem! 😞

I have felt horrible enough not being able to do my woman-ly chores for my family but to have a family and WANT to care and provide for them and the thought that I may not be able to?!?!

My gosh sweetheart… I hope you know I truly am sorry you have to go thru that…

I don’t even know what I am writing and tweeting for…
But someone has just GOT to help us…NOT just broken Harrington rod people BUT anyone with chronic pain.

I don’t know if I want them to just give us whatever type of medication that relieve our pain…whether its for a minute or a lifetime…

I mean they are worried about us being addicted and I always read the concerns that opioids give us a sense of euphoria?!?!

I mean really?!?!

Isn’t that what antidepressants do? And when you have pain so bad you dread taking a shower because your afraid you’ll get lightheaded and pass out…then your hair will clog the drain and you will drown…and your family will find you like that???

What the heck is wrong with a little euphoria?!?!

😱
When you have to go to bed in pain and wake up in pain…AND you wake up several times a night because when you roll a certain way it feels like you rolled a certain way and it felt like you rolled onto a grapefruit that was about 450degrees hot… and its stabbing pain in your hip area …then you look at the clock and you’ve only been asleep 45 minutes….

What do you do?

What?
I truly am open to suggestions…

Whether you have broken rods to or you have some other type of chronic pain and you’v developed some tactics to make it fhru another day….share on what you are doing and/or thinking to make it another day….

I know this…your post gave me the strength and stamina to keep tweeting and talking to anyone that will listen …that can and WILL help us…

Doctors government celebrates…i say celebs because there are no charities organizations for chronic pain issues….but maybe if Kim Kardashian speaks up for us…someone will do SOMETHING for us…

I don’t even know what could help us…more research on how to fix broken rods? Or just let us have strong pain medication until they can figure out how to remove these rods ?

I mean geez if I don’t have an idea who WILL?!?! 😱

I’m truly sorry for this long pathetic post…

I won’t even go into the several reasons I’v been up and down all night long… and started to research broken Harrington rods again 🤔😓⏰

But please share your experience good or bad…please if you have an idea or thought…SHARE it….

And to the young father and husband I’m replying to let us know how your doing….gosh I so hate what your going thru but your post gave me the boost I really needed to keep speaking out…

I have photos of my back X-ray on you tube and my name is change for a nickel if you care to see them.

High hopes for those of us suffering needlessly from this terrible experience
XOXO 😚

Jump to this post

@1prettymess Welcome to Mayo Connect. We are glad you are here, and have shared your experiences. I cannot relate to the pain you have suffered with all these years, but my hope is there is someone also reading your post who may be able to help you. Have you considered medical marijuana as an alternative pain management tool?
Ginger

REPLY
@lioness

@gingerw I saw where winter is upon the Northern states . Hope you have a snowblower or tractor with plow your going to need it or shovel at least .

Jump to this post

@lioness Where we moved to doesn't get very much snow. But there are several places on the nearby interstate that will require chains in certain conditions. Whenever possible I will stay home those days.
Ginger

REPLY
@1prettymess

It’s 9/29/19 as I read your post. I hope your still around cos I genuinely would like to know how your doing.

I’m literally on the verge of tears as I read your message. I suffered a broken back.

I was in a car wreck when I was 17 way back in 1977…
They did the thing where they used park of my hip bone to fuse and put Harrington rods in my back. From what I remember I think it was L5 location.

3 months after my surgery I told one of the surgeons my back was hurting and bless his heart he said Vicki I’m sorry darling your going to have some back pain the rest of your life.

I never dreamed I’d be where I am today 😞

Approximately 22-24 years ago my back just started to progressively get worse over a few month time period…from pretty darn bad to almost intolerable…I’ll never forget that day.

My husband came in and I was mopping the kitchen floor crying. I told him how bad I was hurting and he took me to an urgent care type of place.

I had went to my general practitioner a few months earlier and she diagnosed me without doing an X-ray with fibromyalgia.

Back then I had never heard of fibromyalgia. Not many people had.

The day I was mopping the dr at urgent care was flabbergasted when he saw the X-ray… the bolts ard screws were about 2-5 inches ABOVE the rods…and just kinda tossed about my back.

That started a series of doctors.

Some were stunned some acted like I was complaining to get pain meds.

ONE of the surgeons that worked on me that I went to see literally laughed at me and said I should not have pain because of the area where the rods were!

He was one of the first Drs I went to and he said to take Tylenol! LOL

Is It terrible I hope he suffers the same pain I do one day and they don’t relieve his pain either? 😞🤭😱

I hate to say that. For over 20 years I’ve never been so heinously nasty as i have been lately. I have pain and definitely emotional issues this past few months ranging from bad to worse.

In the past 20 years I’ve had on and off pain with some relief here and there.

Tonight is a bad night… I’ve not been able to sleep due to about a level 8 pain but I also have nausea which I read somewhere years ago because the rods can corrode over time and cause nausea.

Also when my pain gets really bad I get nauseous.

I was on the “ oh so dreadful “ Fentanyl patch for 14-15 years up until 4 months ago but due to the opioid crisis and because the patch kept peeling off of me (I’ve already tried everything trust me) but I also have this very mild all over body moist type of sweat that happens to me…plus I’ve lost about 150ish pounds in the past 3-4 years ( at one time I was almost 280ish pounds. I now weigh 116-120…so besides getting older and having that crepe skin…now I have lose skin from losing so much weight…the patches would literally just curl up around the edges and eventually fall off😞

Which meant when I put them back on they only relieved my pain about 20% as effectively as they did when they just stayed on like they should…

Thank God…they did work pretty well for 14-15 years.

And I was able to work from home 90% of the time… I was blessed.

Don’t get me wrong I had some miserable days thru the years but compared to the level of pain I was in when they put me on the fentanyl patch and where I am today? Oh heavens I could ride a race horse! 😇

But now I’m on the Belbuca patches. You put them in your jawl and let them dissolve.

I’ve never been below a level 6-7 pain in the past 4-5 months 😞

My pain management doctor of 13 years weaned me off the fentanyl. I was only on the 75 strength patch. Which helped me pretty well. But weaning off the patch to go on to Belbuca was hard…my pain level ranged from 4-8…but I lived.

I’ve just started to really research info about broken rods and chronic pain the past few months.

I’ve lied about my pain levels since I was literally 17 years old. I never wanted to aeem like a cry baby..

Like you… I didn’t want to stop working. I didn’t and DON’T want to be on a limited income.

I am still working.

A few years ago I started to have seizures when I was in withdrawals because the patches were coming off and yes…I’ll be honest I would put a new patch on earlier than I was supposed to. But I always did it thinking I could stretch the remaining patches out here and there.

You would just NEVER EVER know the sheer terror of sitting there looking at a new patch…and your in so much pain you feel nauseous, your light headed and your family is due to come over for dinner the next day and you want to make your homemade spaghetti and meatballs with lemon icebox pie.. sweet tea…and homemade chicken nuggets for the grandkids…BUT you can’t because your low back hurts from one side to the other…your neck and shoulders hurt so bad…it’s like you can literally feel the bones inside your body … I can FEEL the curves of my shoulders and the actual joints…and they just have this horrible achey feeling but I can’t say it’s a dull ache because they just hurt AND burn so bad even if I rub them that hurts too the touch…my low back hurts and burns BUT it’s like the muscles in and around the low back and hip bone area aches and burns SO terribly bad I think it’s causing me stress because my upper shoulder and neck also aches and burns.

I’m just trying to really give a good description of what my stupid body feels like at this very moment…

😞

I am SO sorry to say all this …now I’m even thinking about deleting this because I absolutely don’t want to take away your hope…
Cos for 40 plus years hope has kept me going…

When I had pain I would just tell myself one day they will be able to find something to fix me…

That was back in 1979 when I had to redo senior year because of back pain…

I’ve recently been tweeting about chronic pain patients…the fact that I didn’t get my Fentanyl from China I got mine from the local Pharmacy… I pointed out that I never failed a urine test patch count and I’ve been with the same pain management doctor for 13 years and same pharmacy for 12 years…

I post pics of my X-rays whenever and wherever I can…

I so wish this site allowed uploading pictures…

I just wonder how you are doing?

I think the ONLY thing worse than being a 58 year old woman with broken rods would be a young man like yourself with a wife and child that you WANT to support….

I really hate to admit this but I never thought about a man having this problem! 😞

I have felt horrible enough not being able to do my woman-ly chores for my family but to have a family and WANT to care and provide for them and the thought that I may not be able to?!?!

My gosh sweetheart… I hope you know I truly am sorry you have to go thru that…

I don’t even know what I am writing and tweeting for…
But someone has just GOT to help us…NOT just broken Harrington rod people BUT anyone with chronic pain.

I don’t know if I want them to just give us whatever type of medication that relieve our pain…whether its for a minute or a lifetime…

I mean they are worried about us being addicted and I always read the concerns that opioids give us a sense of euphoria?!?!

I mean really?!?!

Isn’t that what antidepressants do? And when you have pain so bad you dread taking a shower because your afraid you’ll get lightheaded and pass out…then your hair will clog the drain and you will drown…and your family will find you like that???

What the heck is wrong with a little euphoria?!?!

😱
When you have to go to bed in pain and wake up in pain…AND you wake up several times a night because when you roll a certain way it feels like you rolled a certain way and it felt like you rolled onto a grapefruit that was about 450degrees hot… and its stabbing pain in your hip area …then you look at the clock and you’ve only been asleep 45 minutes….

What do you do?

What?
I truly am open to suggestions…

Whether you have broken rods to or you have some other type of chronic pain and you’v developed some tactics to make it fhru another day….share on what you are doing and/or thinking to make it another day….

I know this…your post gave me the strength and stamina to keep tweeting and talking to anyone that will listen …that can and WILL help us…

Doctors government celebrates…i say celebs because there are no charities organizations for chronic pain issues….but maybe if Kim Kardashian speaks up for us…someone will do SOMETHING for us…

I don’t even know what could help us…more research on how to fix broken rods? Or just let us have strong pain medication until they can figure out how to remove these rods ?

I mean geez if I don’t have an idea who WILL?!?! 😱

I’m truly sorry for this long pathetic post…

I won’t even go into the several reasons I’v been up and down all night long… and started to research broken Harrington rods again 🤔😓⏰

But please share your experience good or bad…please if you have an idea or thought…SHARE it….

And to the young father and husband I’m replying to let us know how your doing….gosh I so hate what your going thru but your post gave me the boost I really needed to keep speaking out…

I have photos of my back X-ray on you tube and my name is change for a nickel if you care to see them.

High hopes for those of us suffering needlessly from this terrible experience
XOXO 😚

Jump to this post

I'm 72 and have had multiple surgeries, with16 implants, but last year and
a half is the worst. A simple arthritic hip turned into 8 hip
replacements, 6 surgical suite bacterial infections blood poisoning a
surgical fracture of the femur and ultimately removal of my right hip. How
to manage without it is my big problem. Suggestions accepted!

REPLY
@moemoe

I'm 72 and have had multiple surgeries, with16 implants, but last year and
a half is the worst. A simple arthritic hip turned into 8 hip
replacements, 6 surgical suite bacterial infections blood poisoning a
surgical fracture of the femur and ultimately removal of my right hip. How
to manage without it is my big problem. Suggestions accepted!

Jump to this post

@moemoe

Your surgery center must know you well. Too bad we can't get frequent flyer discounts.

Do you have a caregiver? I can't imagine what a challenge it is to do the most day to day activities. I suppose by now you have a wheelchair.

In your writing I see someone who is a survivor, with a positive attitude. I encourage you to hold on to that mentality.

Jim

REPLY
@gingerw

@lioness Where we moved to doesn't get very much snow. But there are several places on the nearby interstate that will require chains in certain conditions. Whenever possible I will stay home those days.
Ginger

Jump to this post

@gingerw I would too that's what I use to di in winter altho we had both in fact 2 snowblowers since we had 3 acres the one was from the sidewalk just to the garage . I saw where a lot of snow fell in Oregon,Wyoming and Montana so was hoping your not isolated without a way to get out

REPLY
@1prettymess

It’s 9/29/19 as I read your post. I hope your still around cos I genuinely would like to know how your doing.

I’m literally on the verge of tears as I read your message. I suffered a broken back.

I was in a car wreck when I was 17 way back in 1977…
They did the thing where they used park of my hip bone to fuse and put Harrington rods in my back. From what I remember I think it was L5 location.

3 months after my surgery I told one of the surgeons my back was hurting and bless his heart he said Vicki I’m sorry darling your going to have some back pain the rest of your life.

I never dreamed I’d be where I am today 😞

Approximately 22-24 years ago my back just started to progressively get worse over a few month time period…from pretty darn bad to almost intolerable…I’ll never forget that day.

My husband came in and I was mopping the kitchen floor crying. I told him how bad I was hurting and he took me to an urgent care type of place.

I had went to my general practitioner a few months earlier and she diagnosed me without doing an X-ray with fibromyalgia.

Back then I had never heard of fibromyalgia. Not many people had.

The day I was mopping the dr at urgent care was flabbergasted when he saw the X-ray… the bolts ard screws were about 2-5 inches ABOVE the rods…and just kinda tossed about my back.

That started a series of doctors.

Some were stunned some acted like I was complaining to get pain meds.

ONE of the surgeons that worked on me that I went to see literally laughed at me and said I should not have pain because of the area where the rods were!

He was one of the first Drs I went to and he said to take Tylenol! LOL

Is It terrible I hope he suffers the same pain I do one day and they don’t relieve his pain either? 😞🤭😱

I hate to say that. For over 20 years I’ve never been so heinously nasty as i have been lately. I have pain and definitely emotional issues this past few months ranging from bad to worse.

In the past 20 years I’ve had on and off pain with some relief here and there.

Tonight is a bad night… I’ve not been able to sleep due to about a level 8 pain but I also have nausea which I read somewhere years ago because the rods can corrode over time and cause nausea.

Also when my pain gets really bad I get nauseous.

I was on the “ oh so dreadful “ Fentanyl patch for 14-15 years up until 4 months ago but due to the opioid crisis and because the patch kept peeling off of me (I’ve already tried everything trust me) but I also have this very mild all over body moist type of sweat that happens to me…plus I’ve lost about 150ish pounds in the past 3-4 years ( at one time I was almost 280ish pounds. I now weigh 116-120…so besides getting older and having that crepe skin…now I have lose skin from losing so much weight…the patches would literally just curl up around the edges and eventually fall off😞

Which meant when I put them back on they only relieved my pain about 20% as effectively as they did when they just stayed on like they should…

Thank God…they did work pretty well for 14-15 years.

And I was able to work from home 90% of the time… I was blessed.

Don’t get me wrong I had some miserable days thru the years but compared to the level of pain I was in when they put me on the fentanyl patch and where I am today? Oh heavens I could ride a race horse! 😇

But now I’m on the Belbuca patches. You put them in your jawl and let them dissolve.

I’ve never been below a level 6-7 pain in the past 4-5 months 😞

My pain management doctor of 13 years weaned me off the fentanyl. I was only on the 75 strength patch. Which helped me pretty well. But weaning off the patch to go on to Belbuca was hard…my pain level ranged from 4-8…but I lived.

I’ve just started to really research info about broken rods and chronic pain the past few months.

I’ve lied about my pain levels since I was literally 17 years old. I never wanted to aeem like a cry baby..

Like you… I didn’t want to stop working. I didn’t and DON’T want to be on a limited income.

I am still working.

A few years ago I started to have seizures when I was in withdrawals because the patches were coming off and yes…I’ll be honest I would put a new patch on earlier than I was supposed to. But I always did it thinking I could stretch the remaining patches out here and there.

You would just NEVER EVER know the sheer terror of sitting there looking at a new patch…and your in so much pain you feel nauseous, your light headed and your family is due to come over for dinner the next day and you want to make your homemade spaghetti and meatballs with lemon icebox pie.. sweet tea…and homemade chicken nuggets for the grandkids…BUT you can’t because your low back hurts from one side to the other…your neck and shoulders hurt so bad…it’s like you can literally feel the bones inside your body … I can FEEL the curves of my shoulders and the actual joints…and they just have this horrible achey feeling but I can’t say it’s a dull ache because they just hurt AND burn so bad even if I rub them that hurts too the touch…my low back hurts and burns BUT it’s like the muscles in and around the low back and hip bone area aches and burns SO terribly bad I think it’s causing me stress because my upper shoulder and neck also aches and burns.

I’m just trying to really give a good description of what my stupid body feels like at this very moment…

😞

I am SO sorry to say all this …now I’m even thinking about deleting this because I absolutely don’t want to take away your hope…
Cos for 40 plus years hope has kept me going…

When I had pain I would just tell myself one day they will be able to find something to fix me…

That was back in 1979 when I had to redo senior year because of back pain…

I’ve recently been tweeting about chronic pain patients…the fact that I didn’t get my Fentanyl from China I got mine from the local Pharmacy… I pointed out that I never failed a urine test patch count and I’ve been with the same pain management doctor for 13 years and same pharmacy for 12 years…

I post pics of my X-rays whenever and wherever I can…

I so wish this site allowed uploading pictures…

I just wonder how you are doing?

I think the ONLY thing worse than being a 58 year old woman with broken rods would be a young man like yourself with a wife and child that you WANT to support….

I really hate to admit this but I never thought about a man having this problem! 😞

I have felt horrible enough not being able to do my woman-ly chores for my family but to have a family and WANT to care and provide for them and the thought that I may not be able to?!?!

My gosh sweetheart… I hope you know I truly am sorry you have to go thru that…

I don’t even know what I am writing and tweeting for…
But someone has just GOT to help us…NOT just broken Harrington rod people BUT anyone with chronic pain.

I don’t know if I want them to just give us whatever type of medication that relieve our pain…whether its for a minute or a lifetime…

I mean they are worried about us being addicted and I always read the concerns that opioids give us a sense of euphoria?!?!

I mean really?!?!

Isn’t that what antidepressants do? And when you have pain so bad you dread taking a shower because your afraid you’ll get lightheaded and pass out…then your hair will clog the drain and you will drown…and your family will find you like that???

What the heck is wrong with a little euphoria?!?!

😱
When you have to go to bed in pain and wake up in pain…AND you wake up several times a night because when you roll a certain way it feels like you rolled a certain way and it felt like you rolled onto a grapefruit that was about 450degrees hot… and its stabbing pain in your hip area …then you look at the clock and you’ve only been asleep 45 minutes….

What do you do?

What?
I truly am open to suggestions…

Whether you have broken rods to or you have some other type of chronic pain and you’v developed some tactics to make it fhru another day….share on what you are doing and/or thinking to make it another day….

I know this…your post gave me the strength and stamina to keep tweeting and talking to anyone that will listen …that can and WILL help us…

Doctors government celebrates…i say celebs because there are no charities organizations for chronic pain issues….but maybe if Kim Kardashian speaks up for us…someone will do SOMETHING for us…

I don’t even know what could help us…more research on how to fix broken rods? Or just let us have strong pain medication until they can figure out how to remove these rods ?

I mean geez if I don’t have an idea who WILL?!?! 😱

I’m truly sorry for this long pathetic post…

I won’t even go into the several reasons I’v been up and down all night long… and started to research broken Harrington rods again 🤔😓⏰

But please share your experience good or bad…please if you have an idea or thought…SHARE it….

And to the young father and husband I’m replying to let us know how your doing….gosh I so hate what your going thru but your post gave me the boost I really needed to keep speaking out…

I have photos of my back X-ray on you tube and my name is change for a nickel if you care to see them.

High hopes for those of us suffering needlessly from this terrible experience
XOXO 😚

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@1prettymess I cant even imagine the pain your in. I do have a lot of back problems ,2 fractures but to have lose screws in and the rods I cant imaging how much you are suffering. Have you gone to another Orthopedic Dr. Not just one but try them all till you find someone that will help. In the meantime do you have a pain management Dr? I go to mine for injections and it does help I get 3 months relieve. Although I still have pain but it is less. With this last fracture the Dr told me to use ice 20 minutes the heat 20 minutes rest of course which I did for a whole week before I started to do a little bit of light exercise. I'm so sorry for all you are going through. Probably working isn't such a good idea but I understand . Have you looked into disability ? Social security can give you answers if you have one in your area Look into a neurosurgeon also . Don't give up you are a warrior , like all of us who have pain. Advocate for yourself fire your Dr if you don't get answers ,keep searching

Liked by rwinney

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@gingerw

@1prettymess Welcome to Mayo Connect. We are glad you are here, and have shared your experiences. I cannot relate to the pain you have suffered with all these years, but my hope is there is someone also reading your post who may be able to help you. Have you considered medical marijuana as an alternative pain management tool?
Ginger

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@1prettymess, I have read your post and shuddered at the complexity of your medical condition. I can understand how difficult every day is for you.

As Ginger mentioned, medical cannabis may be a healthy and successful option for you. Just so you know, I take no opioids or other pain medications for my small fiber neuropathy (SFN).

I have experimented with, tested and evaluated many cannabis options in the last few years. I now have a regimen that works well for me. My pain is controlled without the high of psychoactive components. My other issues, e.g. numbness and anxiety have taken a back seat for now.

May you be safe and protected today. Chris

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@lioness

@1prettymess I cant even imagine the pain your in. I do have a lot of back problems ,2 fractures but to have lose screws in and the rods I cant imaging how much you are suffering. Have you gone to another Orthopedic Dr. Not just one but try them all till you find someone that will help. In the meantime do you have a pain management Dr? I go to mine for injections and it does help I get 3 months relieve. Although I still have pain but it is less. With this last fracture the Dr told me to use ice 20 minutes the heat 20 minutes rest of course which I did for a whole week before I started to do a little bit of light exercise. I'm so sorry for all you are going through. Probably working isn't such a good idea but I understand . Have you looked into disability ? Social security can give you answers if you have one in your area Look into a neurosurgeon also . Don't give up you are a warrior , like all of us who have pain. Advocate for yourself fire your Dr if you don't get answers ,keep searching

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I second this…
@1prettymess ! ! !

No doubt you are a warrior, inspiration and full of perseverance. As a result, you may be your own worst enemy.

I fought quite hard before consenting to try partial disability. I was so concerned about letting my employer and employees down, my husband and children down, losing income/benefits, missing my customers, my routine…the only way of life I had ever known. I completely failed to realize that I was allowing myself to be let down by constant pain, confusion, anxiety. depression and fear.

Reality was that I wasn't performing up to par in any aspect of my life so, essentially I was letting others down. Unable to perform up to my potential as a worker, a wife, a mother and it frustrated the crap out of me. Now throw pain in the mix!

My plan was to figure out my health, fix it and live happily ever after. Didn't work out that way and me being the control freak I was thought I had all the answers. NOT.

Don't want to make this about me because it's about you and I truly hope you will cut yourself some slack. No-one in your position who is suffering in this way should have so much looming over them. Pain and not knowing what comes next is bad enough.

Keep reaching out for support and help. Its ok to do so and own the fact
that you need it and deserve it.

All my good wishes to a very strong woman. Keep the faith and if nothing more, we are hear to listen.

Rachel

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@moemoe

I'm 72 and have had multiple surgeries, with16 implants, but last year and
a half is the worst. A simple arthritic hip turned into 8 hip
replacements, 6 surgical suite bacterial infections blood poisoning a
surgical fracture of the femur and ultimately removal of my right hip. How
to manage without it is my big problem. Suggestions accepted!

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Hello @moemoe

I agree with @jimhd, you do deserve a frequent patient discount!

You were asking how you can manage without a hip. We have a discussion on Mayo Connect where Members have posted who have no hip. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/?pg=9#comment-254624

How long ago was your right hip removed? Has any physical therapy been suggested for you?

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@hopeful33250

Hello @moemoe

I agree with @jimhd, you do deserve a frequent patient discount!

You were asking how you can manage without a hip. We have a discussion on Mayo Connect where Members have posted who have no hip. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/?pg=9#comment-254624

How long ago was your right hip removed? Has any physical therapy been suggested for you?

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Aug2019. No physical therapy. There is a lot of push for a quality of life hip replacement, but given the penchant for infection, I'm reluctant

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@1prettymess

It’s 9/29/19 as I read your post. I hope your still around cos I genuinely would like to know how your doing.

I’m literally on the verge of tears as I read your message. I suffered a broken back.

I was in a car wreck when I was 17 way back in 1977…
They did the thing where they used park of my hip bone to fuse and put Harrington rods in my back. From what I remember I think it was L5 location.

3 months after my surgery I told one of the surgeons my back was hurting and bless his heart he said Vicki I’m sorry darling your going to have some back pain the rest of your life.

I never dreamed I’d be where I am today 😞

Approximately 22-24 years ago my back just started to progressively get worse over a few month time period…from pretty darn bad to almost intolerable…I’ll never forget that day.

My husband came in and I was mopping the kitchen floor crying. I told him how bad I was hurting and he took me to an urgent care type of place.

I had went to my general practitioner a few months earlier and she diagnosed me without doing an X-ray with fibromyalgia.

Back then I had never heard of fibromyalgia. Not many people had.

The day I was mopping the dr at urgent care was flabbergasted when he saw the X-ray… the bolts ard screws were about 2-5 inches ABOVE the rods…and just kinda tossed about my back.

That started a series of doctors.

Some were stunned some acted like I was complaining to get pain meds.

ONE of the surgeons that worked on me that I went to see literally laughed at me and said I should not have pain because of the area where the rods were!

He was one of the first Drs I went to and he said to take Tylenol! LOL

Is It terrible I hope he suffers the same pain I do one day and they don’t relieve his pain either? 😞🤭😱

I hate to say that. For over 20 years I’ve never been so heinously nasty as i have been lately. I have pain and definitely emotional issues this past few months ranging from bad to worse.

In the past 20 years I’ve had on and off pain with some relief here and there.

Tonight is a bad night… I’ve not been able to sleep due to about a level 8 pain but I also have nausea which I read somewhere years ago because the rods can corrode over time and cause nausea.

Also when my pain gets really bad I get nauseous.

I was on the “ oh so dreadful “ Fentanyl patch for 14-15 years up until 4 months ago but due to the opioid crisis and because the patch kept peeling off of me (I’ve already tried everything trust me) but I also have this very mild all over body moist type of sweat that happens to me…plus I’ve lost about 150ish pounds in the past 3-4 years ( at one time I was almost 280ish pounds. I now weigh 116-120…so besides getting older and having that crepe skin…now I have lose skin from losing so much weight…the patches would literally just curl up around the edges and eventually fall off😞

Which meant when I put them back on they only relieved my pain about 20% as effectively as they did when they just stayed on like they should…

Thank God…they did work pretty well for 14-15 years.

And I was able to work from home 90% of the time… I was blessed.

Don’t get me wrong I had some miserable days thru the years but compared to the level of pain I was in when they put me on the fentanyl patch and where I am today? Oh heavens I could ride a race horse! 😇

But now I’m on the Belbuca patches. You put them in your jawl and let them dissolve.

I’ve never been below a level 6-7 pain in the past 4-5 months 😞

My pain management doctor of 13 years weaned me off the fentanyl. I was only on the 75 strength patch. Which helped me pretty well. But weaning off the patch to go on to Belbuca was hard…my pain level ranged from 4-8…but I lived.

I’ve just started to really research info about broken rods and chronic pain the past few months.

I’ve lied about my pain levels since I was literally 17 years old. I never wanted to aeem like a cry baby..

Like you… I didn’t want to stop working. I didn’t and DON’T want to be on a limited income.

I am still working.

A few years ago I started to have seizures when I was in withdrawals because the patches were coming off and yes…I’ll be honest I would put a new patch on earlier than I was supposed to. But I always did it thinking I could stretch the remaining patches out here and there.

You would just NEVER EVER know the sheer terror of sitting there looking at a new patch…and your in so much pain you feel nauseous, your light headed and your family is due to come over for dinner the next day and you want to make your homemade spaghetti and meatballs with lemon icebox pie.. sweet tea…and homemade chicken nuggets for the grandkids…BUT you can’t because your low back hurts from one side to the other…your neck and shoulders hurt so bad…it’s like you can literally feel the bones inside your body … I can FEEL the curves of my shoulders and the actual joints…and they just have this horrible achey feeling but I can’t say it’s a dull ache because they just hurt AND burn so bad even if I rub them that hurts too the touch…my low back hurts and burns BUT it’s like the muscles in and around the low back and hip bone area aches and burns SO terribly bad I think it’s causing me stress because my upper shoulder and neck also aches and burns.

I’m just trying to really give a good description of what my stupid body feels like at this very moment…

😞

I am SO sorry to say all this …now I’m even thinking about deleting this because I absolutely don’t want to take away your hope…
Cos for 40 plus years hope has kept me going…

When I had pain I would just tell myself one day they will be able to find something to fix me…

That was back in 1979 when I had to redo senior year because of back pain…

I’ve recently been tweeting about chronic pain patients…the fact that I didn’t get my Fentanyl from China I got mine from the local Pharmacy… I pointed out that I never failed a urine test patch count and I’ve been with the same pain management doctor for 13 years and same pharmacy for 12 years…

I post pics of my X-rays whenever and wherever I can…

I so wish this site allowed uploading pictures…

I just wonder how you are doing?

I think the ONLY thing worse than being a 58 year old woman with broken rods would be a young man like yourself with a wife and child that you WANT to support….

I really hate to admit this but I never thought about a man having this problem! 😞

I have felt horrible enough not being able to do my woman-ly chores for my family but to have a family and WANT to care and provide for them and the thought that I may not be able to?!?!

My gosh sweetheart… I hope you know I truly am sorry you have to go thru that…

I don’t even know what I am writing and tweeting for…
But someone has just GOT to help us…NOT just broken Harrington rod people BUT anyone with chronic pain.

I don’t know if I want them to just give us whatever type of medication that relieve our pain…whether its for a minute or a lifetime…

I mean they are worried about us being addicted and I always read the concerns that opioids give us a sense of euphoria?!?!

I mean really?!?!

Isn’t that what antidepressants do? And when you have pain so bad you dread taking a shower because your afraid you’ll get lightheaded and pass out…then your hair will clog the drain and you will drown…and your family will find you like that???

What the heck is wrong with a little euphoria?!?!

😱
When you have to go to bed in pain and wake up in pain…AND you wake up several times a night because when you roll a certain way it feels like you rolled a certain way and it felt like you rolled onto a grapefruit that was about 450degrees hot… and its stabbing pain in your hip area …then you look at the clock and you’ve only been asleep 45 minutes….

What do you do?

What?
I truly am open to suggestions…

Whether you have broken rods to or you have some other type of chronic pain and you’v developed some tactics to make it fhru another day….share on what you are doing and/or thinking to make it another day….

I know this…your post gave me the strength and stamina to keep tweeting and talking to anyone that will listen …that can and WILL help us…

Doctors government celebrates…i say celebs because there are no charities organizations for chronic pain issues….but maybe if Kim Kardashian speaks up for us…someone will do SOMETHING for us…

I don’t even know what could help us…more research on how to fix broken rods? Or just let us have strong pain medication until they can figure out how to remove these rods ?

I mean geez if I don’t have an idea who WILL?!?! 😱

I’m truly sorry for this long pathetic post…

I won’t even go into the several reasons I’v been up and down all night long… and started to research broken Harrington rods again 🤔😓⏰

But please share your experience good or bad…please if you have an idea or thought…SHARE it….

And to the young father and husband I’m replying to let us know how your doing….gosh I so hate what your going thru but your post gave me the boost I really needed to keep speaking out…

I have photos of my back X-ray on you tube and my name is change for a nickel if you care to see them.

High hopes for those of us suffering needlessly from this terrible experience
XOXO 😚

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@1prettymess I read all of your long post. I am crying. I thankyou for sharing such an honest, heartfelt post. I too, suffer with neuropathic pain. It is up and down, but is relentless. I cannot tell you how much your post touched my heart. I feel God awful for you. I do not know what pain patients do. I feel like there is really nothing very good. Some things, but not a lot. I just wanted to say thanks for sharing, and as one human to another, my heart goes out. Sometimes I wish my heart did not feel what it does. I can feel people suffering. Your post put me close to you. Thank you. Lori Renee

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@lorirenee1

@1prettymess I read all of your long post. I am crying. I thankyou for sharing such an honest, heartfelt post. I too, suffer with neuropathic pain. It is up and down, but is relentless. I cannot tell you how much your post touched my heart. I feel God awful for you. I do not know what pain patients do. I feel like there is really nothing very good. Some things, but not a lot. I just wanted to say thanks for sharing, and as one human to another, my heart goes out. Sometimes I wish my heart did not feel what it does. I can feel people suffering. Your post put me close to you. Thank you. Lori Renee

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Thank you Lori as I know you feel the pain that we all go through. You Are Not Alone, but the problem is is that the right people aren't listening and therefore we have to fend for ourselves. Don't listen to the all the doctors have to say because they're limited and they're worried about liability. We aren't and therefore we can do what the hell we want to to save our life and our emotions along with our pain. Love you and don't forget that. Don

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@rwinney

I second this…
@1prettymess ! ! !

No doubt you are a warrior, inspiration and full of perseverance. As a result, you may be your own worst enemy.

I fought quite hard before consenting to try partial disability. I was so concerned about letting my employer and employees down, my husband and children down, losing income/benefits, missing my customers, my routine…the only way of life I had ever known. I completely failed to realize that I was allowing myself to be let down by constant pain, confusion, anxiety. depression and fear.

Reality was that I wasn't performing up to par in any aspect of my life so, essentially I was letting others down. Unable to perform up to my potential as a worker, a wife, a mother and it frustrated the crap out of me. Now throw pain in the mix!

My plan was to figure out my health, fix it and live happily ever after. Didn't work out that way and me being the control freak I was thought I had all the answers. NOT.

Don't want to make this about me because it's about you and I truly hope you will cut yourself some slack. No-one in your position who is suffering in this way should have so much looming over them. Pain and not knowing what comes next is bad enough.

Keep reaching out for support and help. Its ok to do so and own the fact
that you need it and deserve it.

All my good wishes to a very strong woman. Keep the faith and if nothing more, we are hear to listen.

Rachel

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@rwinney

Rachel, I went through a similar process of figuring out that I was non functional and taking the step of retiring, and 10 years sooner than I thought. At 55, I was fortunate to get Medicare and SS disability. We would have had no income, otherwise. Even so, we're certainly not getting rich.

Jim

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@jimhd

@rwinney

Rachel, I went through a similar process of figuring out that I was non functional and taking the step of retiring, and 10 years sooner than I thought. At 55, I was fortunate to get Medicare and SS disability. We would have had no income, otherwise. Even so, we're certainly not getting rich.

Jim

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Here, here Jim. I can relate. Preparing for Medicare and choosing my supplemental insurance for the first of the year. New territory.
Rachel

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