Living in chronic pain

Posted by mrmacabre @mrmacabre, Aug 18 3:13pm

I've been visiting this forum every day for several weeks now, and there seems to be a new trend throughout a lot of the comments. What I've noticed are the comments about our doctors and specialists not seeming to offer us any/enough sympathy or support in dealing with the chronic, never ending pain that a lot of us are experiencing. Sure, we can tell them what we go through on a daily basis EVERY day of every week, but then they see their next patient and move on.

It just seems that no matter what we tell our doctors, spouses, adult children, friends, or even grandkids about what we have to deal with, and how it affects our daily lives, they can never really truly understand what chronic pain does to someone over a period of several years. It just wears you down physically, emotionally, and mentally, to the point that you're just existing, either for them, or for some other reason.

Some nights, when I'm climbing into my sleeping chair with my wife of 43 years sleeping in her bed on the other side of the room, I don't want to go to sleep because it means starting another day all over again when I wake up. Every day is the same, I wake up alone because my wife is at the office supporting us. She's home when I wake up on Saturday morning, but then she's gone again on Sunday morning at her church for half the day. So I'm at home alone the vast majority of the time. I know she'd do anything to help me whenever it was needed, and she sympathizes with my problems, both mentally and physically, but on some days you just want to stop existing, and for the pain to stop, but getting someone else to understand that seems to be impossible. It's something that can't be conceived of without them actually experiencing it for themselves.
Every day for the past 10+ years I've dealt with the chronic pain of osteoarthritis in my lower back, hips, and knees, as well as idiopathic poly neuropathy in my feet, and I just want it to stop. Another fucking day of just existing and staying at home all day by myself? Why am I even doing this? We never go any where, there's no money for any kind of a vacation. Nothing ever changes, except for the levels of my pain. Every day is exactly the same, and the weeks, months, and years just fly past me. The sheer monotony of my current situation is maddening, and I'm positive that I'm not the only person on this forum who feels exactly the same way.
How can we get someone other than ourselves to comprehend the ways we're feeling having to deal with this? Is it even possible?

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

Profile picture for loriesco @loriesco

I empathize having chronic pain for 30 years. The light opioid use has gotten me through with grace. It is the only thing I take. I had a miracle after 30 years -- I found out that the gout was causing my all over body pain and inflammatory reactions. THIRTY YEARS. I'm on Allopurinol now (you can try Zazzee Tart Cherry Capsules to see if that may help you). I have Osteo Arthritis but my gout was entirely ignored by many many TOP doctors! Simple fix! Now I am much improved. New stop trying.
Also, now I have adapted to exercising WITH the pain. It is amazing! I got so angry at the pain that I lashed out at it with exercises. It really helps reduce the pain and release endorphins to help you be happier.
Sometimes I am quite miserable and I just "stop." and be miserable because aging with OA is horrible!
But here's my saving grace, my solace, my consolation: Being creative, curious and crafty! I am totally distracted from my misery by being totally involved in my PASSION.
My recommendation is to find your PASSION. Don't waste time on what you can't do anymore - find some things you CAN do. When you can't do anything than read a book or watch a movie.
Also - the weather makes my arthritis worse. 20 years ago when I figured this out I up and moved. Cost me a fortunate but it was well worth it. 20 years later, I probably need to move again. But I'm lazier about it.
I hope you will find some things to be passionate about!
And get a good therapist to help you through the things you can't control and to figure out what is in your power to overcome. That is helpful too!
Find a buddie - maybe from your church - who will periodically come by and just spend time with you. Figure out what interests you may have and focus on developing those when you are able. Good luck.

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Namaste Loriesco,
I love your postive energy, and you are so right about exercise, discovering you passion, finding your support network and a good therapist. These all help towards focusing on what you can do, makes your body and mind feel healthier and happier, also supports you to manage your condition better!

Pacing and taking things in our stride. Good luck to you to!

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Profile picture for cher51 @cher51

Hello, I have a lot of pain as my mother does. When I was younger during my working/career years I felt she just needed to get up and exercise. I had no idea how much pain she was actually in until now. She does not recognize any of us now and I wish I had been more understanding of what she was going through. Now it is too late. I have plenty of guilt even though we clashed most of my life and were not very close, at least as much as I wanted.
Oldest of six.

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Namaste, Cher51,
I hear you, and you understand her now, she doesn't recognise you but you can still be present for her, turn up, just sitting in the same space with her. We can't turn back time, but we can make the most of the present, try and reconnect in a different way, she may not remember her son but you can be her new supportive friend if she will let you.

Sending you peace and blessings

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Profile picture for loriesco @loriesco

I empathize having chronic pain for 30 years. The light opioid use has gotten me through with grace. It is the only thing I take. I had a miracle after 30 years -- I found out that the gout was causing my all over body pain and inflammatory reactions. THIRTY YEARS. I'm on Allopurinol now (you can try Zazzee Tart Cherry Capsules to see if that may help you). I have Osteo Arthritis but my gout was entirely ignored by many many TOP doctors! Simple fix! Now I am much improved. New stop trying.
Also, now I have adapted to exercising WITH the pain. It is amazing! I got so angry at the pain that I lashed out at it with exercises. It really helps reduce the pain and release endorphins to help you be happier.
Sometimes I am quite miserable and I just "stop." and be miserable because aging with OA is horrible!
But here's my saving grace, my solace, my consolation: Being creative, curious and crafty! I am totally distracted from my misery by being totally involved in my PASSION.
My recommendation is to find your PASSION. Don't waste time on what you can't do anymore - find some things you CAN do. When you can't do anything than read a book or watch a movie.
Also - the weather makes my arthritis worse. 20 years ago when I figured this out I up and moved. Cost me a fortunate but it was well worth it. 20 years later, I probably need to move again. But I'm lazier about it.
I hope you will find some things to be passionate about!
And get a good therapist to help you through the things you can't control and to figure out what is in your power to overcome. That is helpful too!
Find a buddie - maybe from your church - who will periodically come by and just spend time with you. Figure out what interests you may have and focus on developing those when you are able. Good luck.

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I ended up having a gout flare up 3 times before my doctor prescribed Allopurinol a few years ago, haven't had another flare up since. Quite possibly the most painful thing I've ever had to deal with.
I started building model cars again a couple of months ago after being out of the hobby for 45 years, and I'm loving it. I had forgotten how much I enjoyed it, but I'm having some fun again for the first time in several years.
I wish we could move to a warmer climate, the Winters here in the PNW suck, and really do a number on my pain. 6 months of clouds, rain, and fog. But we live within an hour's drive of our kids and our grandkids, and I can't see us ever moving away from that.

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Profile picture for calmmylife57 @calmmylife57

Namaste pain warriors,
I came here today, as it's 5.25am when I started writing this in England, I woke up at 3.00am due to the burning, dull radiating pain from my lumbar and sacrum spine, also the neurophatic pain disabling my left leg and ripping through my hip. I took some Pregablin, and co-codamol, rubbed inburopen gel on my lower back, hips and buttocks and laid on my tummy supported with pillows. Put on some relaxation music and did some deep breathing. That's my coping methods for getting through my symptoms. I live on my own with my cat, I'm 58 years old and still work, my work is part of my toolkit, if I didn't work I'd go crazy. I work freelance so the people who employ me put accomodations in place to support me to work. I know not every employer does that, but it is law in England.

I've read all your stories, and I feel humbled to be in such a warm and supportive space, we endure so much, not being understood by healthcare professionals, family and friends is so frustrating. I understand how difiicult it is to feel isolated and alone, being dismissed, ignored and not believed, it's a horrible state to live through. I'm going to put a different spin on this, and ask what can we do make our lives more comfortable? In what ways? Are we open to using your own body to help reduce the symptoms if only for 10-30 minutes? Those where the questions I asked myself, as I didn't want to drown in my pain, I wanted to live the best I could. When I have my really bad days, I'll rest, lay in bed with my electric blanket, pillows to support me and sleep because that's what my body needs in that moment.

I have lumbarsacral and cervical radiculopathy, fibromyalgia from a car crash in January 2013, and hypermobility, every day hurts physically, mentally and emotionally, I mask it to the world all the time, as I want to work, I can't afford not to. It's by no means easy, I paid for private counselling for three years and the counsellor listened to me and guided me to develop my coping strategies. I've always been into self help as I no one is coming to save me. I take it one day at a time, sometimes every hour at a time.

I keep my doctors and consultants on their toes by reading up on my condition, peer reviewed research so I have gained understanding of my conditons and what I need to do to live and survive. I studied sports therapy and gained a degree and holstic therapies so I understand how my body works. I use holistic therapies when I can afford them, but most of the time I use gentle movement and yoga when my symptoms flare up and deep breathing exercises, otherwise there is no way I would be able to cope. I eat nutrious health foods when I have the energy to cook and my son will bring me meals or food.

We all have on our individual journey's, but we are here, we are present and we are alive, managing, coping sometimes, maybe not, but know you are supported in this space. We can come here for support and I appreciate you.

I'm sending you all blessings and love, because I hear, feel and understand your pain, thanks for sharing and being here for me to vent to.
Big hugs. X

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I'm very sorry for you what have to endure, dealing with chronic pain and still having to work must be exhausting at times. I would love to have a cat to help keep me company during the day while my wife is at the office, but our landlord says no pets, period. I've grown up with cats around me for most of my life, and we've had a couple since relocating to the PNW over 30 years ago for long periods of time, and we grow very attached to them. Losing them is as bad as losing a loved one IMO. In august of 2020, my older sister died of a massive infection(not covid) at the age of 64. She never got to retire, or be a grandma, our grow old with her husband, which really sucked. Less than a week later, my cat Molly died after having her for a little over 3 years, and I was destroyed, and I almost lost it. I can't believe that was 5 years ago already.
Just wondering, what's your cat's name?

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Profile picture for mrmacabre @mrmacabre

I ended up having a gout flare up 3 times before my doctor prescribed Allopurinol a few years ago, haven't had another flare up since. Quite possibly the most painful thing I've ever had to deal with.
I started building model cars again a couple of months ago after being out of the hobby for 45 years, and I'm loving it. I had forgotten how much I enjoyed it, but I'm having some fun again for the first time in several years.
I wish we could move to a warmer climate, the Winters here in the PNW suck, and really do a number on my pain. 6 months of clouds, rain, and fog. But we live within an hour's drive of our kids and our grandkids, and I can't see us ever moving away from that.

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I agree that was the most painful thing ever. As far as the fog that also does me in. I woke up this week in the middle of the night and had to take a pain pill which is really unusual. When I got out of bed in the morning, it was as thick as pea soup. The fog and the weather changed. If the weather stayed constant, it would be OK. But as the barometric pressure goes in and out my pain flares, I wish there was more attention paid to arthritis in the commonalities that those of us face. So many people and so little attention it’s crazy.

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Profile picture for aaronhurts @aaronhurts

I thought I was suffering, and I do have pain, but after reading everybody’s else, I feel better.
Ok, I’m just being funny.
But truly I appreciate the suffering I’ve read about above, and it seems my suffering is grade school compared to the college sufferers here.

The difference with my suffering is I know it can be over in a week. But because I don’t have a “diagnosis”… they won’t prescribe me the antibiotics I want,
When I had sufficient amoxicillin or keflex, I was running like a gazelle. But I ran out, and they won’t give me more.

It was like being in prison, and when I took antibiotics, I was declared innocent and released! Running, playing, full mobility and pain free!
And then I ran out. And the warden showed up and dragged me back to prison. So here I sit in my cell, remembering the 28 days this summer when I had no pain, just a great time biking, hiking, and everything else.

Of course the doctors don’t believe it. Even though I demonstrated it, showing up to the surgeon and running on the spot full speed in front of him. And telling him… I won’t stay this way as I ran out of amoxicillin.

Either doctor thinks I’m lying or nuts. He stopped looking at my hip and focused on my head.

I’ll just sit here in my pain prison and rot,

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You don’t want to take too many antibiotics believe me or you will end up in the same boat I am in. I got Cdiff from too many antibiotics for UTI’S, was never told by any doctor when taking antibiotics you should take a probiotic. It seems that the Cdiff ate my stomach up, I’m in severe pain every day from the time I wake until I go to bed. I have had every possible test ran and no one can figure out what is causing the pain. There are days it’s just unbearable, I’m doubled over in pain. If it weren’t for the opiates I take for the pain, I don’t think I would be here today as the pain is so severe.

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Thanks. Yes, I got to be careful with antibiotics. I am going to see an infectious disease doctor to talk about my situation. I may be suffering a kind of rejection with the implants, and somehow the antibiotic makes it disappear.
I am wondering if I could go on a course and then after resolving the pain, take a smaller amount for maintenance.
Else, it’s the pain & cane 4 me.

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Profile picture for calmmylife57 @calmmylife57

Namaste pain warriors,
I came here today, as it's 5.25am when I started writing this in England, I woke up at 3.00am due to the burning, dull radiating pain from my lumbar and sacrum spine, also the neurophatic pain disabling my left leg and ripping through my hip. I took some Pregablin, and co-codamol, rubbed inburopen gel on my lower back, hips and buttocks and laid on my tummy supported with pillows. Put on some relaxation music and did some deep breathing. That's my coping methods for getting through my symptoms. I live on my own with my cat, I'm 58 years old and still work, my work is part of my toolkit, if I didn't work I'd go crazy. I work freelance so the people who employ me put accomodations in place to support me to work. I know not every employer does that, but it is law in England.

I've read all your stories, and I feel humbled to be in such a warm and supportive space, we endure so much, not being understood by healthcare professionals, family and friends is so frustrating. I understand how difiicult it is to feel isolated and alone, being dismissed, ignored and not believed, it's a horrible state to live through. I'm going to put a different spin on this, and ask what can we do make our lives more comfortable? In what ways? Are we open to using your own body to help reduce the symptoms if only for 10-30 minutes? Those where the questions I asked myself, as I didn't want to drown in my pain, I wanted to live the best I could. When I have my really bad days, I'll rest, lay in bed with my electric blanket, pillows to support me and sleep because that's what my body needs in that moment.

I have lumbarsacral and cervical radiculopathy, fibromyalgia from a car crash in January 2013, and hypermobility, every day hurts physically, mentally and emotionally, I mask it to the world all the time, as I want to work, I can't afford not to. It's by no means easy, I paid for private counselling for three years and the counsellor listened to me and guided me to develop my coping strategies. I've always been into self help as I no one is coming to save me. I take it one day at a time, sometimes every hour at a time.

I keep my doctors and consultants on their toes by reading up on my condition, peer reviewed research so I have gained understanding of my conditons and what I need to do to live and survive. I studied sports therapy and gained a degree and holstic therapies so I understand how my body works. I use holistic therapies when I can afford them, but most of the time I use gentle movement and yoga when my symptoms flare up and deep breathing exercises, otherwise there is no way I would be able to cope. I eat nutrious health foods when I have the energy to cook and my son will bring me meals or food.

We all have on our individual journey's, but we are here, we are present and we are alive, managing, coping sometimes, maybe not, but know you are supported in this space. We can come here for support and I appreciate you.

I'm sending you all blessings and love, because I hear, feel and understand your pain, thanks for sharing and being here for me to vent to.
Big hugs. X

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Hi! I joined the “couch-bound club” back in June of this year when I fell backwards and landed on my bottom in our yard. That day was followed by 3 weeks of excruciating pain when getting in and out of bed and reaching to put on socks and shoes or bending. Finally the X-ray and MRI of my back showed a fractured L3 vertebrae. Suddenly I could no longer drive, wash dishes, bend, carry clothes from to and from my laundry area or grocery shop in person. A MAJOR life change for me. The back doc saw me in late June and said “it just has to heal”. That would be 4 to 6 MONTHS!!!
Suddenly no driving, housework, doing dishes, going AMYWHERE!
So I have been spending my days primarily sitting or laying on my couch. I began ordering my groceries online to be delivered to my home and I tip the delivery person for bringing them into my house. I set up TV tables by the kitchen counters where the grocery bags get placed so I don’t have to pick heavy bags off the floor. Then I have no problem putting the groceries away.
I have been alone during the days because my husband still works. He does all the days dishes for me at night after dinner. I have a back brace to wear when prepping his lunch before he leaves for work in the am, and for prepping easy dinners in the evenings. My back does get extremely painful if I am on my feet more than 30 minutes. I am hoping the healing will be complete by October 31. Otherwise it may not be until Christmas. Our children are adults and out of the house. We do not have any pets. I miss going to the gym the most. I can’t exercise until my back is completely healed.
I have never watched this much TV in my life. 3 women from our church each brought one dinner for my husband and I but the rest of these 2.5 months I have prepared all our meals. My prayer for myself is that I can live just one day at a time and find the patience to persevere until my back has healed, then find more patience to help me recover my mobility and return to my church and again be “out in the world”. Thanks to all who have so honestly shared their challenges. I, too, had three other major joint surgeries which are being challenged daily. I will pray for all of us. I guess getting old is not as fun as it is portrayed on TV ads!!🫤

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Profile picture for cpalisano @cpalisano

I hear you LOUD & CLEAR! I am in the same boat & it isn’t a good way to live…It seems as though NO ONE can help you….Why is that???!!! I wish our doctors could experience one day of our agonizing life & then maybe, just maybe they would really try to find some sort of answer to help us…..or perhaps there is no answer…I hope when I die I will go to heaven because this is HELL on earth…..God bless! 🙏

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I actually believe science found already a cure for pain, but that would be the end of the pharmaceutical business.

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Profile picture for yolanda13 @yolanda13

I actually believe science found already a cure for pain, but that would be the end of the pharmaceutical business.

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I truly believe you are right. I have had 10 different procedures done to my back and none of them gave me relief, including the spinal stimulator. I have had a fusion on L5-S1 ten years ago and it made me worse gradually. I go to a pain specialist at Rush Hospital in Chicago. He keeps me on Norco to take the pain away and lets me do the normal things in life. I live alone and without help in a big house. My kids want me to downsize which I am planning to do in the near future. My pain specialist sent me to a neurosurgeon and he's wondering why the pain specialist had not done a pain pump. I soon found out that he doesn't like to use that method of relief. He's the only pain doctor in that hospital that doesn't do them. I went to my psychiatrist to get my 3 month prescription of antidepressants because I have become depressed with this whole situation. He doesn't understand why the pain doctor won't do the pain pump. He said he has had patients in wheel chairs walk into his office free of using any help to get them around in life and are walking just fine after getting the pain pump. He wants me to reconsider the pain doctor's decision and get a second opinion on having a pump put in. I was wondering if there is anyone who has had success with the pain pump. Please give me an opinion.

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