Living in chronic pain

I'm not sure it is possible to understand unless you are going through it. If you are a Christian , maybe even if you're not, the best book on chronic pain I've ever read is Amy Carmichael, Rose from Briar. I'm so sorry for what you're going thru. I very been in full body pain 《 feels like someone is twisting my bones ) since 1984. Luckily I got treated after 20 years with opioids and they have saved my life. Of course right now in U.S. they have reduced our meds to ridiculously low levels so we are back to horrible suffering.

@mrmacabre
I can relate with the monotony and lack of real empathy and understanding of what living with chronic pain is from those around us.

I just take one day at a time and do my best at what little I can do. Each day I am trying to pick a couple things to focus on and prioritize. If I try to do too much, I get discouraged. I am in my mid 50s and a single parent of a teen with no family support at all. My energy now is focused on my son, my dogs/cats and what little I can do around my house to take care of the basics. My goal for the rest of the year is to try really hard to take better care of myself with diet/walking and physical therapy (I have had 3 spine surgeries and very deconditioned and weak). I get depressed from chronic pain and take Wellbutrin/bupropion but it only helps to at least get me out of bed. I’m still down and not as motivated and it feels like ground hog day everyday.

Many, not all, doctors really don’t care if you have a poor quality of life and don’t do a good job treating you holistically by referring you to the proper specialists and treatments. Pain management clinics aren’t really helping many patients have a better quality of life.

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! 🙏

Dear Fellow Chronic Pain Sufferer,
Early this morning, when I read your post, it resonated with me long after I closed
my computer. Sadly, the other folks who commented, reflected and also feel your pain.
Your pain became 'our' pain' as chronic pain sufferers.

I read your post with caring and tears. I had written to Mayo Connect a few days ago,
with a similar plea for help. (Hardening across the back with severe pain ...) perhaps
may seem a bit light hearted, but the feeling is within my words.

Sending extra prayers for each new day and be grateful to be part of it. Until that
'some day 'Day' comes in answer to our plea ... please know that prayers are with you.
Good Luck to all in 'our' Chronic Pain Sufferers Club including you, dear mrmacabre.

Hi Archie here—
Wow, what a powerful string of messages! I got adhesive arachnoiditis in 1978– I was 33 and had just finished 10 years of professional training. I now had chronic, severe pain in my back and legs. Seems I am allergic to the oil-based contrast fluid they used for myelogram back then (like an MRI today) so I developed scar tissue in the subarachnoid layer surrounding all our nerves— hence the lifetime sentence of pain. I’m 80 today— still suffer each day. I have a pain pump with dilaudid that helps very much - just had a Spinal Cord stimulator installed that doesn’t help at all, and take NO ORAL PAIN MEDS. they are a slippery slope. I keep a daily journal with B/P, blood suger, pain level, hours of sleep (sounds like a lot, but how long does it take you to feed your dog daily?) I take this journal with me to every visit. We have the basics, now let’s spend our time on the problems.
Here’s the kicker, I had just finished a double Residency in Ob/Gyn and General Surgery…the law doesn't allow you to work if you take narcotics. At 33 with 2 young kids I was out of a job. No pity parties allowed. This note is too long. I’ll tell you how I’ve managed my non-medical life at another time. Point to be made::: I’m still pushing the ball everyday, I read, love my family, have no illusions about getting better, and I try to make my little corner of the world a little brighter.
Good luck-Archie

This "WOW" is for YOU Archie!
Keep on ... keeping on. You are truly an inspiration.
Blessings to you and to all members in our Pain Sufferers Club.
Good Luck and continued 'brighter' days ahead.

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.

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.

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,

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