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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@guga

You're right I was treated as a criminal and a drug abuser at a pain clinic at a mistake CVS made not of my own doing. there is basically not much of a relief for me unless I do that some type of pain medication the problem is who will prescribe it with clinics popping up for methadone everywhere it's easier to receive methadone than it is to receive a Tylenol with codeine or Tylenol with whatever and I tell you that I am in so much pain that I cry out every single day and have no relief. I refuse the injections after the last one that cause pain throughout my body so badly that I could not move for 3 days so the pain specialists the other one that they sent me two would not deal with me because I will not have another injection and refused so he refused to treat me so now what do I do now I'm looking for home remedies such as marijuana tea leaves and try to see if that will help the only thing it is illegal in the state of South Carolina even medical marijuana is illegal here they would rather you use CBD which is not regulated and no one knows what exactly is in it and as you see a lot of people are getting sick from it and dieing.

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I have even gotten cactus fruit and made juice as well as other home remedies to try to relieve some of the pain in my body swelling etc nothing is working so our use the emergency room as a step towards relief because it is the only place that I can go to that will service me as a patient in pain and they will only service this for 5 days and then after the 5 days I have a little bit of relief for maybe a day or so until all the medication wears off and I start all over again in tears from the pain right now I can't walk my left ankle is so swollen as well as my knee and the pain is going from my back down my back of my legs on my buttocks all the way down to the bottom I also have numbness on the right leg and I still have to work this way and just teeter from one leg to the other

REPLY
@guga

I have even gotten cactus fruit and made juice as well as other home remedies to try to relieve some of the pain in my body swelling etc nothing is working so our use the emergency room as a step towards relief because it is the only place that I can go to that will service me as a patient in pain and they will only service this for 5 days and then after the 5 days I have a little bit of relief for maybe a day or so until all the medication wears off and I start all over again in tears from the pain right now I can't walk my left ankle is so swollen as well as my knee and the pain is going from my back down my back of my legs on my buttocks all the way down to the bottom I also have numbness on the right leg and I still have to work this way and just teeter from one leg to the other

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I've had this pain maybe not as severe as you are now but it's somewhere for the middle of the back around the L2 on down and I finally found out what was causing my pain. Look up what I just told you about that condition AA we call it and go on this chat connection I look up that condition I told you about that I have and you might get a war inside maybe you have what we have. Unless you get an MRI with contrast on your pelvic you will never know but this condition is caused by injections and bad surgery or injury and doctors do not want to find it because they think they could be liable due to their procedures on you over the years. That's why this disease is so rare and no research and nobody wants to touch a bit or or talk about it. Male only wants to give me a stimulator which is not a good thing with this condition. I am off opioids I have gone to this doctor information who candles this disease and is really help me with the medication ideas as well as the vitamins and exercise that I'm doing. I'm off of ibuprofen no pain medication except when needed and every third day maybe. Sleeping all night without waking up every 2 hours which I've done for 2 years. I'm not saying you have it but go to that condition on this connection.
ARACHOIDITIS. This conditions is compared to being diagnosed with terminal cancer and I hate to be so dramatic, but it doesn't have to be that way and that's what I'm fighting for.

REPLY
@guga

I have even gotten cactus fruit and made juice as well as other home remedies to try to relieve some of the pain in my body swelling etc nothing is working so our use the emergency room as a step towards relief because it is the only place that I can go to that will service me as a patient in pain and they will only service this for 5 days and then after the 5 days I have a little bit of relief for maybe a day or so until all the medication wears off and I start all over again in tears from the pain right now I can't walk my left ankle is so swollen as well as my knee and the pain is going from my back down my back of my legs on my buttocks all the way down to the bottom I also have numbness on the right leg and I still have to work this way and just teeter from one leg to the other

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I didn't hear you say what is causing all this. You've got to think out of the box for a solution and there are doctors out there as you got to do your research and you can't say no for an answer. It wasn't for my perseverance after my surgery and complaints on the portal to my doctor's with nobody listening. I had to go and get the appointments myself and plead for the MRIs that I demanded and sure enough it showed up. I had to read a radiology report and look up the condition and find out what it is. Look it up and you'll see how bad this could be I stopped as do not want to diagnose it or treat it cuz they are really could be liable for the surgeries and injections that they're giving that causes this disease. I'm not saying you have it but it's worth looking into at least and dr. Forest Tennant from California as he has a website. He also helps other conditions and maybe yours. It's working for me and I am so pleased. I pray for you I pray for all of us with pain.

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I have like many you you multiple sources of pain. I have GI problems and have had many abdominal surgeries to fix. The last was open.. they had to crack one rib and cut another.. incision (they cut through muscle) is from between breast bone up to back of my left shoulder. They had to stretch my left arm out of the way and in doing so I have a tear in the labrum of the shoulder joint (this is my worst pain most of the time). I also have osteoarthritis.. the worst throughout my spine.

With all the stomach surgeries I do not process nor absorb nutrients well. The absorption has gotten a little better with time. A check of my vitamin D level one time revealed I had none in my body. Vitamin D is actually a hormone, but it helps us absorb other nutrients. Without Vitamin D you can have more pain.. especially joint and muscle. Magnesium is another one that if you are low on you can have a lot of pain. These should be checked at your yearly or six month check up along with Vitamin b12.

I went off of my statin last year. My triglycerides were back in line. I did notice a bit of less pain. I will accept even a minute bit of less pain.

Gentle exercise helps me too.

I hope something might be helpful in this for others.

ZeeGee

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@frankjr

Hello, just found the site while looking for others who are living with broken Harrington rods in there back. After looking I decided to join up. I fractured my l3 l4 in an auto accident in 2001. I had many other injuries that I have recovered from quite well. My back went 10 years without any major problems after my L5 thru S1 fusion. However now it appears I have fractured the rods in 3 places and have screws that are no longer attached. I started experiencing pain about 6 or 7 years ago, it has progressed to needing to take morophine every few hours now to cope. I still work full time 50+ hours a week. I found out the rods were fractured March of last year when my primary asked for a set of xrays after I started complaining my back was hurting more and more and I felt I needed more medication to help. That's when we found the rods were fractured in multiple places. I was told to stop working immediately, no lifting, no bending, twisting, reaching basically do nothing. I being stubborn have kept working and going as normal since. I feel now that my back is becoming worse every day and I don't know how much longer I will be able to get out of bed in the morning. I'm trying to get insurance currently so I can possibly get my rods removed, however I'm beyond scared to lose my job and not an able to support my wife and daughter while I recover, if it can be corrected. I'd love to know how other have delt with similar problems and how it has worked out for them. Every day seems to be harder and harder to get up and get going. I'm 36 and feel like I'm 86.

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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 😚

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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My heart goes out to you. ❤

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@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

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@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

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@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

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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 😚

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
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