Unmanaged Pain

.... 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.

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@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

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@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

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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

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@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

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@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

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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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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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