Unmanaged Pain

Posted by annie2 @annie2, Mar 26, 2021

Hi all, so, I have been in pain for two years now. Started as unresponsive Gerd. Recently the pain has been an 8-9. Pain mgt is giving me gabapentin as well as noritriptyline. I have also been given anti-depressants for pain and anxiety as well. Nothing is working. No suggestions from Doctor.Thoughts?

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

@annie2

So sorry you had to go through that. I can't tell you how angry I get with some of these arrogant doctors. They are not gods and do not know everything. If they did, we would not be in so much pain. Pain is a serious issue. It affects every part of our lives. Sadly, not all dr's have compassion. I say a prayer for all who go through this. Be well.

Jump to this post

@annie2, @lacy2 Hello, Annie and Lacy…..After reading both your messages I decided I had to share with you some of my experiences with my own chronic pain, often unmanaged, and my son's pain from dystonia.

He's been in excruciating nerve pain for 17+ years with not one moment of pain freedom. He's had a dilaudid pump for the last several years. With that and botox shots he's surviving, but has horrid PTSD and is still in constant pain. He's finally getting emotional help, but it's far too long coming and he will probably never have the pain controlled.

I've had pain from osteoporosis since age 35, fibromyalgia age 35, sarcoid age 40, abdominal surgery for large benign tumor age 45, other issues along the way all seeming to cause pain. Now, I'm in constant and often serious pain from severe arthritis, especially in my feet, hands, wrists, lower back and cervical vert.

So, a lot of things for a lot of years have caused a lot of pain.

Today, I'm much better due the help of Mayo doctors I've seen for the last several years. I began with neurology after 12 years of misdiagnosis w/MS. I've received caring, kind, extremely thorough and knowledgeable care since the first visit. I haven't agreed with nor liked all the docs, but 95% have been wonderful to me and helped me beyond belief.

Today, thanks to this hard work with them and by me, I'm a much better and different person. No more bad docs! No more 'poor me'! I'm in charge of myself, not the doctor or nurse nor anyone other than me. I make the choices every day that determine how my day and the next day go. I choose to be emotionally well, healthy, or I choose to allow myself to feel sorry for myself. Sometimes, I give a day or two to have a pity party. Then, buck up and move ahead…..

When I work to be emotionally healthy, to be positive and reduce negative in my life, I feel better, I hurt less or don't notice or dwell on it…..I'm walking now, not a lot or a long way, but walking with my hot pink walker and stand straight and as tall as I can….it hurts and when it's too unpleasant, I slow down and/or stop. I don't go anywhere but Mayo, PT, PCP, drive-through for meds. Been that way for years since before Covid due to my own illnesses and pain levels.

No more soap-box, but ladies, so much of it is in our control. For real. Pray. Think good thoughts about yourself. About others. Be kind to yourself and others. Be a realistic 'Polyanna'! I do good things just for me just because I deserve good things!

Ck out @becsbuddy, Let's go for a walk….or @artscaping on Chronic Pain or Quality of life…. and the other angels who have lifted up so many. Connect has probably done more to help me in this walk than anything other than prayer! They've given me hope. You can have hope. Listen to what they've experienced. I've learned from them, about all this, treatments that work, new ideas…. Amazing how much all this has helped me. I've been helped and healed by this and by prayer….

So, enjoy this journey. This is it…..no do over, so now I'm making the most of each day, every person.
Blessings to you both and all who are hurting. Life is yucky sometimes! But, it's life and that's good….elizabeth

REPLY
@ess77

@annie2, @lacy2 Hello, Annie and Lacy…..After reading both your messages I decided I had to share with you some of my experiences with my own chronic pain, often unmanaged, and my son's pain from dystonia.

He's been in excruciating nerve pain for 17+ years with not one moment of pain freedom. He's had a dilaudid pump for the last several years. With that and botox shots he's surviving, but has horrid PTSD and is still in constant pain. He's finally getting emotional help, but it's far too long coming and he will probably never have the pain controlled.

I've had pain from osteoporosis since age 35, fibromyalgia age 35, sarcoid age 40, abdominal surgery for large benign tumor age 45, other issues along the way all seeming to cause pain. Now, I'm in constant and often serious pain from severe arthritis, especially in my feet, hands, wrists, lower back and cervical vert.

So, a lot of things for a lot of years have caused a lot of pain.

Today, I'm much better due the help of Mayo doctors I've seen for the last several years. I began with neurology after 12 years of misdiagnosis w/MS. I've received caring, kind, extremely thorough and knowledgeable care since the first visit. I haven't agreed with nor liked all the docs, but 95% have been wonderful to me and helped me beyond belief.

Today, thanks to this hard work with them and by me, I'm a much better and different person. No more bad docs! No more 'poor me'! I'm in charge of myself, not the doctor or nurse nor anyone other than me. I make the choices every day that determine how my day and the next day go. I choose to be emotionally well, healthy, or I choose to allow myself to feel sorry for myself. Sometimes, I give a day or two to have a pity party. Then, buck up and move ahead…..

When I work to be emotionally healthy, to be positive and reduce negative in my life, I feel better, I hurt less or don't notice or dwell on it…..I'm walking now, not a lot or a long way, but walking with my hot pink walker and stand straight and as tall as I can….it hurts and when it's too unpleasant, I slow down and/or stop. I don't go anywhere but Mayo, PT, PCP, drive-through for meds. Been that way for years since before Covid due to my own illnesses and pain levels.

No more soap-box, but ladies, so much of it is in our control. For real. Pray. Think good thoughts about yourself. About others. Be kind to yourself and others. Be a realistic 'Polyanna'! I do good things just for me just because I deserve good things!

Ck out @becsbuddy, Let's go for a walk….or @artscaping on Chronic Pain or Quality of life…. and the other angels who have lifted up so many. Connect has probably done more to help me in this walk than anything other than prayer! They've given me hope. You can have hope. Listen to what they've experienced. I've learned from them, about all this, treatments that work, new ideas…. Amazing how much all this has helped me. I've been helped and healed by this and by prayer….

So, enjoy this journey. This is it…..no do over, so now I'm making the most of each day, every person.
Blessings to you both and all who are hurting. Life is yucky sometimes! But, it's life and that's good….elizabeth

Jump to this post

@ess77 Sorry you and your son have been through so much; and I admire you for, basically, what you have done to help yourself. It puts me to shame although years ago I did fight the good fight but circumstances now my get up and go got up and went. It's difficult for others to understand: my one daughter gets how I feel and my limitations; my other one feels I should make more effort….. and my husband is there for me as a rock but does not get into physical/mental health suggestions etc., plus he just had triple heart surgery and is a diabetic and has also had cancer. I truly wish I could be more like you but its impossible … perhaps if I had beren fortunate enough to go to Mayo or a teaching hospital in Toronto but the doctors in this northern Ontario town except for a few are not really ———, I started to travel to see specialist re glaucoma but when got c.diff and then fecal incontinence travel out of the question. Also, have few friends and within 2 years 4 died including my brother in UK. Year before Mum and nephew in UK..oculd not go to funerals…. .. so as well as depression , extreme sorrow. Thanks for your suggestions and will re-read and see if I can implement some, but so far have not achieves. Hugs.

REPLY

…. just want to add … is it true that, as well as the fact we all handle pain differently, that some actdually have less pain tolerance than others…… my spouse and I could have exactly the same thing yet he can "handle" the pain which I cannot…. I have always had a low pain tolerance and wonder if its different bodies; how we were raised; emotional connection? I also need verification of my suffering, not necessarily sypathy (sorry but true) yet he keeps quiet about it….. just curious…. J.

REPLY
@lacy2

@ess77 Sorry you and your son have been through so much; and I admire you for, basically, what you have done to help yourself. It puts me to shame although years ago I did fight the good fight but circumstances now my get up and go got up and went. It's difficult for others to understand: my one daughter gets how I feel and my limitations; my other one feels I should make more effort….. and my husband is there for me as a rock but does not get into physical/mental health suggestions etc., plus he just had triple heart surgery and is a diabetic and has also had cancer. I truly wish I could be more like you but its impossible … perhaps if I had beren fortunate enough to go to Mayo or a teaching hospital in Toronto but the doctors in this northern Ontario town except for a few are not really ———, I started to travel to see specialist re glaucoma but when got c.diff and then fecal incontinence travel out of the question. Also, have few friends and within 2 years 4 died including my brother in UK. Year before Mum and nephew in UK..oculd not go to funerals…. .. so as well as depression , extreme sorrow. Thanks for your suggestions and will re-read and see if I can implement some, but so far have not achieves. Hugs.

Jump to this post

@lacy2 Hello, Lacy. I am indeed extremely fortunate I live in the area I can get to the Mayo Clinic Florida easily. I have 'easy access' to the expertise and care of these folks. I had quite a fight through the years it took to get me there, but I am so blessed and I know it every day. You have tough issues to face. Sometimes it is a lonely, uphill climb trying to keep above water, put that one foot in front of the other, but it can be done……one tiny, iddy, biddy step at a time, with lots of steps backwards.

I guess I realized I truly was better when the backward steps began being smaller and fewer, the steps toward acceptance of my physical situation…..and that's a really hard one, acceptance, 'cause we don't like or want to be where we are with our health! When I didn't want gray hair, I went back to the first choice and colored it black, smiled and felt good. I made a decision, I took control. Last year, I decided, made a choice to let it be it's natural self, gray. So, I accepted my age, my self as I am and felt so liberated. You know, that may have been my awakening to the reality of my life, the acceptance of life.

So, my friend, deep breath, please. Another deep breath. Now, move one foot forward, just a bit. You did it and still standing. Another deep breath……then rest…and begin again. That's it. You're on your way. 'Gotta remember to breath.

I remember years ago, I was told 'No one promised you a rose garden!'. Nope. They didn't, but I expected one and fought and screamed inside until I finally realized…..roses are so lovely, but they sure have thorns. Yep. We're feeling those nasty thorns. But, you're in control of yourself! Take that control, strip off those thorns and get moving!

Blessings, Lacy in every day and all you do. You are in charge of you….no one else. I think when this revelation began, I first realized I had that ability to live my life through my own choices. Wow, what a day…..elizabeth

REPLY

…am very happy for you Elizabeth, notwithstanding I feel for your illnesses, J.

REPLY
@lacy2

…. just want to add … is it true that, as well as the fact we all handle pain differently, that some actdually have less pain tolerance than others…… my spouse and I could have exactly the same thing yet he can "handle" the pain which I cannot…. I have always had a low pain tolerance and wonder if its different bodies; how we were raised; emotional connection? I also need verification of my suffering, not necessarily sypathy (sorry but true) yet he keeps quiet about it….. just curious…. J.

Jump to this post

@lacy2 Oh, my have you hit on some important areas re pain and those pesky relationships.

I know we each have different mental, emotional, physiological reactions to pain of all types. For me, if I'm tired from staying up too late, like I did last night, the next day's pain may be tougher, either more or more difficult to handle. Seems logical. My choice had consequences. Took me a life-time to learn.

Also, I don't think we can ever compare one person's pain to another. Lacy, I have fibromyalgia. Medicine now knows this illness actually increases pain sensations, so even stumped toes are felt differently.

It's wonderful you found Mayo Connect. Here we meet folks who understand what we're feeling. They are or have been where we are and know, want to support us – Chris @artscaping or Sue @sueinmn or Ginger @gingerw or Becky @becsbuddy and so many others. They have helped me with all these issues, given me the support I never had or never felt I had…..they understand. Most important to me and my growth along this journey is this caring support. I hit a rough patch, shared and they were right there with me. I'll never forget that feeling. It was the beginning of my healing.

I'm not alone. NOT ALONE. Wow! That all by itself is healing.

Blessings. elizabeth

REPLY
@lacy2

…. just want to add … is it true that, as well as the fact we all handle pain differently, that some actdually have less pain tolerance than others…… my spouse and I could have exactly the same thing yet he can "handle" the pain which I cannot…. I have always had a low pain tolerance and wonder if its different bodies; how we were raised; emotional connection? I also need verification of my suffering, not necessarily sypathy (sorry but true) yet he keeps quiet about it….. just curious…. J.

Jump to this post

@lacy2 It is indeed true that we all handle pain differently. While it could be a factor of environment, how our bodies each talk to our communication center has a play in pain acknowledgment. We each are a miracle of cooperation in how our bodies work, but we are not cookie cutter! My husband has a hard time acknowledging my physical issues [let alone emotional/mental!], but that is a product of him and his past.

@ess77 has eloquently phrased some of my thoughts! I don't live near any Mayo campus, and have taken my medical providers under my wing to help them be the best they can be, for me. You have to consciously choose each day, to be your best, and not focus on the pain. Doing something that lets you put aside, or lessen your discomfort, even for a little while, proves to yourself you have that power, and it is empowering! It can make you want to do more or try other things to ease that discomfort. Start small. Five minutes of feeling better, then aim for ten.

By the way, it is not selfish to want to ease your discomfort. Don't let anyone tell you otherwise.
Ginger

REPLY
@gingerw

@lacy2 It is indeed true that we all handle pain differently. While it could be a factor of environment, how our bodies each talk to our communication center has a play in pain acknowledgment. We each are a miracle of cooperation in how our bodies work, but we are not cookie cutter! My husband has a hard time acknowledging my physical issues [let alone emotional/mental!], but that is a product of him and his past.

@ess77 has eloquently phrased some of my thoughts! I don't live near any Mayo campus, and have taken my medical providers under my wing to help them be the best they can be, for me. You have to consciously choose each day, to be your best, and not focus on the pain. Doing something that lets you put aside, or lessen your discomfort, even for a little while, proves to yourself you have that power, and it is empowering! It can make you want to do more or try other things to ease that discomfort. Start small. Five minutes of feeling better, then aim for ten.

By the way, it is not selfish to want to ease your discomfort. Don't let anyone tell you otherwise.
Ginger

Jump to this post

@gingerw Ginger, You have a wonderful ability of expression. Thank you. you are a huge help. Blessings, elizabeth

REPLY
@ess77

@lacy2 Hello, Lacy. I am indeed extremely fortunate I live in the area I can get to the Mayo Clinic Florida easily. I have 'easy access' to the expertise and care of these folks. I had quite a fight through the years it took to get me there, but I am so blessed and I know it every day. You have tough issues to face. Sometimes it is a lonely, uphill climb trying to keep above water, put that one foot in front of the other, but it can be done……one tiny, iddy, biddy step at a time, with lots of steps backwards.

I guess I realized I truly was better when the backward steps began being smaller and fewer, the steps toward acceptance of my physical situation…..and that's a really hard one, acceptance, 'cause we don't like or want to be where we are with our health! When I didn't want gray hair, I went back to the first choice and colored it black, smiled and felt good. I made a decision, I took control. Last year, I decided, made a choice to let it be it's natural self, gray. So, I accepted my age, my self as I am and felt so liberated. You know, that may have been my awakening to the reality of my life, the acceptance of life.

So, my friend, deep breath, please. Another deep breath. Now, move one foot forward, just a bit. You did it and still standing. Another deep breath……then rest…and begin again. That's it. You're on your way. 'Gotta remember to breath.

I remember years ago, I was told 'No one promised you a rose garden!'. Nope. They didn't, but I expected one and fought and screamed inside until I finally realized…..roses are so lovely, but they sure have thorns. Yep. We're feeling those nasty thorns. But, you're in control of yourself! Take that control, strip off those thorns and get moving!

Blessings, Lacy in every day and all you do. You are in charge of you….no one else. I think when this revelation began, I first realized I had that ability to live my life through my own choices. Wow, what a day…..elizabeth

Jump to this post

I haven’t heard that phrase…..”.No one promised you a rose garden” in ages. Thanks for reminding me. Accceptance of chronic pain and limited activity is so very difficult, Accepting aging and the progression of medical conditions is even tougher, Hang in there, Treat yourself to music…….a virtual tour of Italy……a long catch up phone call with your high school friend, Fill your time with healthy distractions. We do better when we know how to do better, And yes, we are here to help you stand strong,

May you be open to joy today.
Chris

REPLY
@artscaping

I haven’t heard that phrase…..”.No one promised you a rose garden” in ages. Thanks for reminding me. Accceptance of chronic pain and limited activity is so very difficult, Accepting aging and the progression of medical conditions is even tougher, Hang in there, Treat yourself to music…….a virtual tour of Italy……a long catch up phone call with your high school friend, Fill your time with healthy distractions. We do better when we know how to do better, And yes, we are here to help you stand strong,

May you be open to joy today.
Chris

Jump to this post

@artscaping Funny thing, I just sent email reply to one of my best HS friends in Macon, Ga. She's quite a gal. She began a lunch bunch group of HS friends, years ago, and it's still going along. With a lot of organization and work on her part. I went to Macon to visit, stayed w/her, for our 50th reunion. Fun, horrid reminder of life long gone, good memories, didn't recognize one person…..we all had our HS pics on name badges-only way we knew anyone.

Now, she has Zoom meetings once monthly, instead of restaurant meetings. Great idea. Missed them all mostly due to Mayo appts!!!!! but now appts are much less, I'm much better, and they're continuing both, in person and Zoom. So, I get to see everyone next Thursday! Feels a bit like life is coming back?

Love my gray hair now. Actually, funny thing, sleep dept found I have iron deficiency, probably had it a long time. Years…..so, I take Vitron +C, iron, and now, ferrous is up and white/silver hair is salt and pepper again!!!! Did you know the iron is turning my gray hair back to original color, some…..now that I've adjusted to the silver! Love the irony.

Heading across the street to my son's home. He called to spend some time together for Easter. Only last few years have I not gotten him, he's 52, Easter egg basket with candy, goodies, a book or whatever. Even sent to law school and after he opened his practice. He wasn't thrilled….finally suggested I don't need to do that anymore.

Watched my Miami Marlins baseball team beat Tampa Bay Rays, who were in the World Series last year! Had to watch a couple of different recordings to get to the final innings, as channels are wonky. But, saw them win. I began my baseball Marlin's career a couple years ago to be able to watch/chat/discuss and not get irritated with Rob's new interest in the team. He's for the underdog….determined to have a hobby, so took up baseball and they were for many years at the very bottom! Last year, led the team in covid cases, lost so many players, they had to buy/beg/steal players and ended up in the play-offs!!! Great season, weird season due to covid, but we shared the fun. So, now we have a good team and will enjoy sharing the games.

Have lovely day, Chris. A good day! Blessings, elizabeth

REPLY
@ess77

@artscaping Funny thing, I just sent email reply to one of my best HS friends in Macon, Ga. She's quite a gal. She began a lunch bunch group of HS friends, years ago, and it's still going along. With a lot of organization and work on her part. I went to Macon to visit, stayed w/her, for our 50th reunion. Fun, horrid reminder of life long gone, good memories, didn't recognize one person…..we all had our HS pics on name badges-only way we knew anyone.

Now, she has Zoom meetings once monthly, instead of restaurant meetings. Great idea. Missed them all mostly due to Mayo appts!!!!! but now appts are much less, I'm much better, and they're continuing both, in person and Zoom. So, I get to see everyone next Thursday! Feels a bit like life is coming back?

Love my gray hair now. Actually, funny thing, sleep dept found I have iron deficiency, probably had it a long time. Years…..so, I take Vitron +C, iron, and now, ferrous is up and white/silver hair is salt and pepper again!!!! Did you know the iron is turning my gray hair back to original color, some…..now that I've adjusted to the silver! Love the irony.

Heading across the street to my son's home. He called to spend some time together for Easter. Only last few years have I not gotten him, he's 52, Easter egg basket with candy, goodies, a book or whatever. Even sent to law school and after he opened his practice. He wasn't thrilled….finally suggested I don't need to do that anymore.

Watched my Miami Marlins baseball team beat Tampa Bay Rays, who were in the World Series last year! Had to watch a couple of different recordings to get to the final innings, as channels are wonky. But, saw them win. I began my baseball Marlin's career a couple years ago to be able to watch/chat/discuss and not get irritated with Rob's new interest in the team. He's for the underdog….determined to have a hobby, so took up baseball and they were for many years at the very bottom! Last year, led the team in covid cases, lost so many players, they had to buy/beg/steal players and ended up in the play-offs!!! Great season, weird season due to covid, but we shared the fun. So, now we have a good team and will enjoy sharing the games.

Have lovely day, Chris. A good day! Blessings, elizabeth

Jump to this post

That sounds like fun with your Hugh school friends. I just listened to Lyn Anderson singing the rose garden song. Now.I will be singing it all day. I had a hard time remembering my high school friends also. My father was a principal so many came by to ask about my Dad but they didn’t say anything to me.

It was sort of like being the ministers daughter. Actually, my friend Ruth was the minister’s daughter. We didn’t get invited to parties…..they didn’t want us to tell on them.

I am sitting in my chair at the river. Getting enough energy to walk a couple miles, Sure!!!!!!!
May you be content and at ease today..
Chris

REPLY
@ess77

@annie2, @lacy2 Hello, Annie and Lacy…..After reading both your messages I decided I had to share with you some of my experiences with my own chronic pain, often unmanaged, and my son's pain from dystonia.

He's been in excruciating nerve pain for 17+ years with not one moment of pain freedom. He's had a dilaudid pump for the last several years. With that and botox shots he's surviving, but has horrid PTSD and is still in constant pain. He's finally getting emotional help, but it's far too long coming and he will probably never have the pain controlled.

I've had pain from osteoporosis since age 35, fibromyalgia age 35, sarcoid age 40, abdominal surgery for large benign tumor age 45, other issues along the way all seeming to cause pain. Now, I'm in constant and often serious pain from severe arthritis, especially in my feet, hands, wrists, lower back and cervical vert.

So, a lot of things for a lot of years have caused a lot of pain.

Today, I'm much better due the help of Mayo doctors I've seen for the last several years. I began with neurology after 12 years of misdiagnosis w/MS. I've received caring, kind, extremely thorough and knowledgeable care since the first visit. I haven't agreed with nor liked all the docs, but 95% have been wonderful to me and helped me beyond belief.

Today, thanks to this hard work with them and by me, I'm a much better and different person. No more bad docs! No more 'poor me'! I'm in charge of myself, not the doctor or nurse nor anyone other than me. I make the choices every day that determine how my day and the next day go. I choose to be emotionally well, healthy, or I choose to allow myself to feel sorry for myself. Sometimes, I give a day or two to have a pity party. Then, buck up and move ahead…..

When I work to be emotionally healthy, to be positive and reduce negative in my life, I feel better, I hurt less or don't notice or dwell on it…..I'm walking now, not a lot or a long way, but walking with my hot pink walker and stand straight and as tall as I can….it hurts and when it's too unpleasant, I slow down and/or stop. I don't go anywhere but Mayo, PT, PCP, drive-through for meds. Been that way for years since before Covid due to my own illnesses and pain levels.

No more soap-box, but ladies, so much of it is in our control. For real. Pray. Think good thoughts about yourself. About others. Be kind to yourself and others. Be a realistic 'Polyanna'! I do good things just for me just because I deserve good things!

Ck out @becsbuddy, Let's go for a walk….or @artscaping on Chronic Pain or Quality of life…. and the other angels who have lifted up so many. Connect has probably done more to help me in this walk than anything other than prayer! They've given me hope. You can have hope. Listen to what they've experienced. I've learned from them, about all this, treatments that work, new ideas…. Amazing how much all this has helped me. I've been helped and healed by this and by prayer….

So, enjoy this journey. This is it…..no do over, so now I'm making the most of each day, every person.
Blessings to you both and all who are hurting. Life is yucky sometimes! But, it's life and that's good….elizabeth

Jump to this post

Elizabeth, thank you for sharing your story. It is hard enough when you are in pain but your son's suffering must be incredibly difficult for you. I am fairly new to this chronic pain condition. Started with terrible burning pain in my throat and has since begun in the tongue and mouth. So frightened that I am looking at Burning Mouth Syndrome. It is so rare as to only affect 1 to 2 % of the population. Difficult to treat with no known cure. Life-long pain is a truly devastating diagnosis that we all handle differently. Some of us are frightened, some depressed, others angry, while others are in denial and constantly searching for the cure. High anxiety plague most of us. Life is hard enough for some and this makes it almost impossible. I am so glad that you have found what works for you. Prayers for your continued wellness.

REPLY
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