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

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.

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@annie2 Hello, Annie. What you're describing sounds absolutely horrid. I'm so sorry you're having to endure such pain. What specialists are you seeing for this? Have they definitively diagnosed it as Burning Mouth Syndrome? Have you been to a teaching hospital or large clinic like Cleveland Clinic, one of the large state University Hospitals or Mayo? Boston? Don't know where you live, but some help from one of the large centers would be in order? Possible?

You mentioned this pain in your throat began with unresponsive Gerd. How long have you had Gerd? I also have it, but certainly not anything like your situation. I do go to Mayo Clinic Florida for all my care pretty much, except PCP. Best decision ever! The gastro doctors are treating me now for long-term Gerd. There are several medication routes they can take to get better results depending on the endoscopy findings.

When was your last endoscopy? Anything found there, like Barrett's or Schatzi Ring or polyps or inflammation? Liver bile reflux? I'm holding you in my prayers tonight and forward. Hopefully, if you haven't been for further testing w/serious specialists you will consider it. We must be proactive in our own care. It's in our control to get to someone who can and will help and who can help find answers-from true experts.

Blessings, Annie. I pray your pain will ease and you find peace. elizabeth

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@ess77

@annie2 Hello, Annie. What you're describing sounds absolutely horrid. I'm so sorry you're having to endure such pain. What specialists are you seeing for this? Have they definitively diagnosed it as Burning Mouth Syndrome? Have you been to a teaching hospital or large clinic like Cleveland Clinic, one of the large state University Hospitals or Mayo? Boston? Don't know where you live, but some help from one of the large centers would be in order? Possible?

You mentioned this pain in your throat began with unresponsive Gerd. How long have you had Gerd? I also have it, but certainly not anything like your situation. I do go to Mayo Clinic Florida for all my care pretty much, except PCP. Best decision ever! The gastro doctors are treating me now for long-term Gerd. There are several medication routes they can take to get better results depending on the endoscopy findings.

When was your last endoscopy? Anything found there, like Barrett's or Schatzi Ring or polyps or inflammation? Liver bile reflux? I'm holding you in my prayers tonight and forward. Hopefully, if you haven't been for further testing w/serious specialists you will consider it. We must be proactive in our own care. It's in our control to get to someone who can and will help and who can help find answers-from true experts.

Blessings, Annie. I pray your pain will ease and you find peace. elizabeth

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Hello Elizabeth, thank you for responding. Have not been diagnosed as of yet but the symptoms are all there. Terrible pain in back of throat, dry mouth, burning on tongue and roof of mouth, pain meds do not work. I have had Gerd for many years along with a number of scopes. Most recent finding is some cells in stomach are changing into intestinal cells. It is called intestinal metaplasia. Have to be scoped every two years to keep an eye on it. This Burning Mouth Syndrome is a horrible disease that I prayed I did not have. It is a form of neuralgia and very rare. Only one to two percent of the population has it. Doctors do not know enough about it to properly treat it. People go to many Dr's to try and get a diagnosis. Due to almost constant pain, quality of life is low. Medications like gabapentin and nortriptyline are used but have not helped. I am trying to come off them as they also bother my stomach and increase my dry mouth. I have asked for help in trying to come off them but as of yet, no reply. I live near Philadelphia so I am sure there are a few good hospitals. My understanding is that most people exhaust many doctors but not much in the way of help.I am struggling with the anxiety and depression from this as I have four grandchildren and three live out of state. Do not know how I will be able to travel to see them. Thank you so much for your prayers and for keeping me in mind. Blessings to you as well Elizabeth. Be well.

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I've have chronic pain from a low back complete discectomy L5S1, Spondylitis, & degenerative disk. Had both shoulders operated on for rotator cuff & laberal tears. Before my pain was managed I developed 25 peptic ulcers over a 2 yr period. I had full rounds of unsuccessful back & shoulder injections from about 5-6 different location over several years before finding a Doctor who settled on fairly successful pain medications that allowed me to take care of myself, my pets & my home as it should be. Then after several successful yrs, my Dr. retired. It's been a HUGE challenge to find sufficient pain management. I then started with a new provider that didn't offer any pain management ideas but would begin reducing my meds while I was tasked to figure it all out. When my meds were so low they weren't helping much, loss of sleep, more migraines etc, it didn't matter so we parted company. Then I went to what I thought was a "real" pain clinic, but before I started specifically asked if he or anyone had an issues with my meds & he said no. Well, long story short, he's been hacking my meds to what "he" feels should work. Because of my disk issues, it hurts to sit, it's especially difficult trying to sleep & really difficult to take care of myself, my pets & nearly impossible to take care of my home. My pain has increased over the years because of the degenerative issues as with my low back the most pain has been on the left of my spine. When the pain goes bilateral, it's nearly impossible to manage pain. Sleep has been a HUGE issue so I have a FitBit device as I live alone & can show actual results. My sleep is 1-4 hrs per night usually fragmented from not being able to get comfortable in any position & no escape. That caused between 9-27 migraines per month, I've always had very health blood pressure but over the last yr. now have very high blood pressure from the stress, lack of sleep & chronic pain. Stress & trauma from not being heard has caused anxiety & I'm sure depression. My old prescriptions of 8-10 yrs would still work but they don't want to prescribe them & nothing else has worked. I have spent everything I have looking for safer options & in fact almost lost my home this year in that pursuit. I'm so tired & frustrated with such incompetent pain management. I've looked at implants & not real impressed but feel I'm being forced into that market. I have read many pain management guidelines & they all agree or so they say that everyone deserves sufficient pain management & that under managed pain is as serious over managed prescribing. Also there are guidelines for decreasing meds if they are working & the benefits outweigh the risks. Dose it make any sense to decrease meds without a solution to address the pain before cutting back? Not in my opinion… So what are people like myself supposed to do to get sufficient pain management & have as normal of a life including able to sleep, less stress, trauma, anxiety or depression? To live & enjoy life, family, friends & all things good that pain has robbed so many of us from. Doesn't it make more sense to manage pain legally than turning people away so they have no other choice than ordering illegal drugs to manage their pain or unfortunately too often suicide as their only choice? It just seems the metrics of success are so blurred… What are people supposed to do? Frustrated

Guideline References: The board recognizes that the under treatment of pain is a serious public health problem that results in decreases in patients’ functional status and quality of life, and that adequate access by patients
to proper pain treatment is an important objective of any pain management policy.

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@rustydog2022

I've have chronic pain from a low back complete discectomy L5S1, Spondylitis, & degenerative disk. Had both shoulders operated on for rotator cuff & laberal tears. Before my pain was managed I developed 25 peptic ulcers over a 2 yr period. I had full rounds of unsuccessful back & shoulder injections from about 5-6 different location over several years before finding a Doctor who settled on fairly successful pain medications that allowed me to take care of myself, my pets & my home as it should be. Then after several successful yrs, my Dr. retired. It's been a HUGE challenge to find sufficient pain management. I then started with a new provider that didn't offer any pain management ideas but would begin reducing my meds while I was tasked to figure it all out. When my meds were so low they weren't helping much, loss of sleep, more migraines etc, it didn't matter so we parted company. Then I went to what I thought was a "real" pain clinic, but before I started specifically asked if he or anyone had an issues with my meds & he said no. Well, long story short, he's been hacking my meds to what "he" feels should work. Because of my disk issues, it hurts to sit, it's especially difficult trying to sleep & really difficult to take care of myself, my pets & nearly impossible to take care of my home. My pain has increased over the years because of the degenerative issues as with my low back the most pain has been on the left of my spine. When the pain goes bilateral, it's nearly impossible to manage pain. Sleep has been a HUGE issue so I have a FitBit device as I live alone & can show actual results. My sleep is 1-4 hrs per night usually fragmented from not being able to get comfortable in any position & no escape. That caused between 9-27 migraines per month, I've always had very health blood pressure but over the last yr. now have very high blood pressure from the stress, lack of sleep & chronic pain. Stress & trauma from not being heard has caused anxiety & I'm sure depression. My old prescriptions of 8-10 yrs would still work but they don't want to prescribe them & nothing else has worked. I have spent everything I have looking for safer options & in fact almost lost my home this year in that pursuit. I'm so tired & frustrated with such incompetent pain management. I've looked at implants & not real impressed but feel I'm being forced into that market. I have read many pain management guidelines & they all agree or so they say that everyone deserves sufficient pain management & that under managed pain is as serious over managed prescribing. Also there are guidelines for decreasing meds if they are working & the benefits outweigh the risks. Dose it make any sense to decrease meds without a solution to address the pain before cutting back? Not in my opinion… So what are people like myself supposed to do to get sufficient pain management & have as normal of a life including able to sleep, less stress, trauma, anxiety or depression? To live & enjoy life, family, friends & all things good that pain has robbed so many of us from. Doesn't it make more sense to manage pain legally than turning people away so they have no other choice than ordering illegal drugs to manage their pain or unfortunately too often suicide as their only choice? It just seems the metrics of success are so blurred… What are people supposed to do? Frustrated

Guideline References: The board recognizes that the under treatment of pain is a serious public health problem that results in decreases in patients’ functional status and quality of life, and that adequate access by patients
to proper pain treatment is an important objective of any pain management policy.

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Hello, welcome to Connect @rustydog2022. I'm sorry for your frustrations. Your plight is shared and understood by many.

Is a comprehensive pain rehabilitation program an approach you might consider? They focus on the mind and body as a whole, and help with physical conditioning, sleep hygiene, diet and emotional needs such as anxiety, loss, depression, and more. Mayo Clinic offers this kind of program at each of their 3 locations. Here's more information if you're interested:

Mayo Clinic Pain Rehabilitation Center –
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Also, please find this video by Mayo Clinic's Dr. Sletten. He presents on Central Sensitization Syndrome, chronic symptoms and the cycle of pain:

Dr. Christopher Sletten, Central Sensitization Syndrome –

I know it's frustrating, but what is your next step? Do you have meetings with doctors to discuss your concerns? Do they offer alternatives for symptom management?

I hope your day is going well and your able to find a small bit of joy. 😊

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@rwinney

Hello, welcome to Connect @rustydog2022. I'm sorry for your frustrations. Your plight is shared and understood by many.

Is a comprehensive pain rehabilitation program an approach you might consider? They focus on the mind and body as a whole, and help with physical conditioning, sleep hygiene, diet and emotional needs such as anxiety, loss, depression, and more. Mayo Clinic offers this kind of program at each of their 3 locations. Here's more information if you're interested:

Mayo Clinic Pain Rehabilitation Center –
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Also, please find this video by Mayo Clinic's Dr. Sletten. He presents on Central Sensitization Syndrome, chronic symptoms and the cycle of pain:

Dr. Christopher Sletten, Central Sensitization Syndrome –

I know it's frustrating, but what is your next step? Do you have meetings with doctors to discuss your concerns? Do they offer alternatives for symptom management?

I hope your day is going well and your able to find a small bit of joy. 😊

Jump to this post

Thank you for the info & I met with an integrative Dr last Wednesday. My biggest concern is managing my pain well enough to go the 40 min 1 way trip the sit for her appointment as all of it contributes to nerve compressing making managing pain even more of an issue. I have scheduled with her clinical hypnosis session (she trained with Dr. Andrew Weil in Phoenix, AZ) & that I'm looking forward to. Also interviewed at a spine clinic for a pain pump, or simulator that I don't want bit being forced by under managed pain management protocols. Hoping they can find the additional reasons behind my pain besides having one of the largest herniated disks at the medical center where the radiologist I talked with had been there for 28 yrs. Lucky me, ha,., The neurosurgeon removed the entire disk & now it's beating up on the nerves… It does suck but going on too long & too many others having horrible pain issues too so not looking for sympathy. Pain sucks no matter the cause…

Originally wanted to go to the Mayo but United Health Care & Mayo have been battling out insurance issues so not covered currently as far as I know. I need answers ASAP but need to manage my pain sooner… Too many people are treated poorly in America & that needs to change, PERIOD…

Thank you for listening to my rant… 🙂 God Bless each of you…

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Good for you! It sounds like you are making moves out there with different approaches for pain management. Will you report back how the integrative doctor experience works for you, and so forth? Hypnosis is so interesting.

Is Mayo out of network with your insurance plan? I had to set my sights on the following year to get to Mayo Pain Rehabilitation and switched insurance plans to include out of network. I live in NY and was applying to FL.

Good luck with your next steps. Think poisitive thoughts. I'm rooting for you!

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@rustydog2022

Thank you for the info & I met with an integrative Dr last Wednesday. My biggest concern is managing my pain well enough to go the 40 min 1 way trip the sit for her appointment as all of it contributes to nerve compressing making managing pain even more of an issue. I have scheduled with her clinical hypnosis session (she trained with Dr. Andrew Weil in Phoenix, AZ) & that I'm looking forward to. Also interviewed at a spine clinic for a pain pump, or simulator that I don't want bit being forced by under managed pain management protocols. Hoping they can find the additional reasons behind my pain besides having one of the largest herniated disks at the medical center where the radiologist I talked with had been there for 28 yrs. Lucky me, ha,., The neurosurgeon removed the entire disk & now it's beating up on the nerves… It does suck but going on too long & too many others having horrible pain issues too so not looking for sympathy. Pain sucks no matter the cause…

Originally wanted to go to the Mayo but United Health Care & Mayo have been battling out insurance issues so not covered currently as far as I know. I need answers ASAP but need to manage my pain sooner… Too many people are treated poorly in America & that needs to change, PERIOD…

Thank you for listening to my rant… 🙂 God Bless each of you…

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@rustydog2022 my previous reply was to you, but accidentally I forgot to tag you.

Fun fact…I had an Aunt named Rusty and you've got me thinking about her. Naturally, she had a full head of red hair, hence her nickname Rusty. Ahh, good memories. Thanks!

PS: I leave you with this hopeful thought…

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