Unmanaged Pain

Posted by annie2 @annie2, Mar 26 2:21pm

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?

@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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