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.

cpalisano | @cpalisano | Sep 17 2:06pm

In reply to @yolanda13 "I actually believe science found already a cure for pain, but that would be the end..." + (show)

Thank you so much for your reply! No one understands unless they experience what all of us in daily constant pain have to deal with! God bless us all! ….amd sending warm hugs & prayers. 💕🙏

rt061069 | @rt061069 | Sep 18 4:33pm

Oh my you wrote my story. My wife works I had to quit work due to daily pain and the stuff you said I understand, feel the same way and probably have said and done all your saying. I would really like to talk to you to support each other. I live with 24/7 abdominal pain that all I get is brain gut problem. Nothing really helps as I haven’t been without pain for over seven years. I came on the forum about four years ago when I did some consults with mayo that didn’t help. Big thing that would help all is being able to talk to someone whose pain is so bad you will totally relate. Like yes I’m so sick our family vacations stopped in 2018. Miss out on so much. Send me a text if you want somone to listen. I’m married 30 years and two semi older kids. Laid n beds all day. Finally came down stairs when my son got home from work. Another wasted day. I need to get bloodwork done for an appt soon and I don’t want to drive the 20 minutes round trip. Just giving up. I understand. Rob 3146098434

kenc | @kenc | Sep 19 12:38pm

Depression is an integral part of dealing the constant severe pain, which I have been experiencing for about 10 years. The only medical advice I have receiving is to enroll in physical therapy program. Has anyone ever tried physical therapy when he or she is severe pain?

calmmylife57 | @calmmylife57 | Sep 20 7:05am

In reply to @kenc "Depression is an integral part of dealing the constant severe pain, which I have been experiencing..." + (show)

Namaste Kenc,
Yes, I do movement and exercise weekly, sometimes daily depending on my time, energy, and mood. I have lumbosacral spondylosis with radiculopathy, fibromyalgia, and hyper-mobility. I am 58 years young and I live on my own, have had adaptations made to my house so I can live independently, and use a walking aid.

My pain is unapologetic and drains my soul sometimes. It’s constant, and I experience other symptoms like muscle spasms, pins and needles, muscle weakness in my left leg due to nerve damage, brain fog, chronic fatigue, migraines, and IBS. The list is endless.

If I don’t exercise, my chronic pain worsens. I’ve gone through a plan with my physio and also practice Yin yoga and Qi Gong, which I do slowly and gently at home. If I didn’t exercise, I would be in a wheelchair and unable to walk. Exercise strengthens my bones and muscles, reduces my pain sensitivity, lifts my mood, keeps me slim, and makes me flexible, as the fibromyalgia causes stiffness in my muscles. It’s a distraction from the pain and other symptoms, and my mental health would be in a poor state if I didn’t exercise.

Yes, I do feel pain if I overdo it, so I ice it or have Epsom salt baths. The magnesium in the Epsom salt soothes my muscles and reduces the pain. However, if I don’t exercise, my muscles will waste, I’ll put on weight, my pain will be worse, I’ll get depressed, and I’ll become a hermit and not leave my house. So, I choose to live my life and manage this debilitating pain and other horrible symptoms. Plus, I do hobbies such as art, reading, and spending time with my young grandchildren, who are my medicine.

I conquered my depression with two great psychotherapists over the past ten years, who gave me the support and tools to be able to process and manage my feelings and thoughts, and I use exercise and meditation to stay mentally healthy, also eating nutritious foods.

Have you spoken to your physio or healthcare provider to get support on how you start to exercise safely and tailor a plan for you?
Hope this helps, wishing you all the best.

calmmylife57 | @calmmylife57 | Sep 20 7:15am

In reply to @mrmacabre "I'm very sorry for you what have to endure, dealing with chronic pain and still having..." + (show)

Namaste,
I'm back again, time flies by so quickly!
Wow, so sorry to hear of your personal loss, it's heartbreaking when our loved ones don't get to enjoy the fruits of their labour in retirement.

Yes, having to work is exhausting, but I love what I do. I’m a cultural producer, so I’m surrounded by music, dance, theatre, and so many creative individuals. I get invited to launches, which keeps the spark in my soul! My cat, Cairo, is the queen of her castle and totally rules me, lol. I love her so much and she makes my heart beat. The comfort she gives me is undeniable.

calmmylife57 | @calmmylife57 | Sep 20 7:39am

In reply to @cjcatmom "Hi! I joined the “couch-bound club” back in June of this year when I fell backwards..." + (show)

@cjcatmom

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!!🫤

Jump to this post

Namaste Cjcatmom,
I’m sorry to hear about your pain. Take it one day at a time. It’s a shock to your system, and adjusting to such huge changes to your life and routine can be challenging. It’s great that you have a support system, with your husband and church, you so need that right now.

I don’t know how you feel about mindfulness or meditation, as you can’t physically exercise. However, it helps to exercise our minds and learn to cope with the pain and symptoms of our conditions, which can overwhelm us. I hope your spine recovers for October so you can start to regain the life you had.

Yes, getting older is definitely not how they portray it on TV ads, but they are there to lull us into a false sense of security!! 🙂

kenc | @kenc | Sep 20 8:43am

In reply to @calmmylife57 "Namaste Kenc, Yes, I do movement and exercise weekly, sometimes daily depending on my time, energy,..." + (show)

@calmmylife57

Have you spoken to your physio or healthcare provider to get support on how you start to exercise safely and tailor a plan for you?
Hope this helps, wishing you all the best.

Jump to this post

Yes I have.

caregeraci15 | @caregeraci15 | Sep 20 9:23am

I think loved ones, friends and healthcare providers understand what we're going through but just like it is to us it's the same old thing to them so there's no more effective response to help us feel better. Our family and friends are helpless because there's nothing new they can offer us to stop the pain. I rarely tell anyone my legs are hurting bad because all they can say is I know and I'm sorry.

calmmylife57 | @calmmylife57 | Sep 20 9:31am

In reply to @kenc "Yes I have." + (show)

Go at your own pace and as your body allows.

Take your time and monitor your mobility, pain and other symptoms as you move each day or week.

Don't be afraid, you will be fine!

fala | @fala | Sep 20 10:31am

I am there as well. My husband, who was 4 years younger passed away 7 years ago. We feel guilty when as a partner, we are the one always complaining! There is no good answer to pain, but this site helps!! I have PN, constant sciatica, and now a new pain. I could not move my head to the right. So, my Doctor gave me an injection that numbed both my arms all the way and including my hands! So, I should be grateful for the trade-off? Now I can move my neck better. The last visit to my Doctor, I foolishly said I have three complaints. Same pill pack that doesn't work. Too many ailments? So should I have picked just ONE at a time? That's not the way it goes for me. I think if you are over 85, whatever it is, pain is not taken seriously. Only blood speaks loudly! The thought must be, we have pretty much lived our lives by then? Do I just have a bad attitude?
Would you go back to that Doctor? Should I just pick a specialist for each ailment? So, it is MY bad, my GP, (they call them PCPs now,) who gives me a few pain pills (that seldom work)? I know, I know, there are not enough Doctors, for one thing! So, now what? I am crabby from the pain, and I have NO IDEA where to go from here. Too bad we don't live next door, but thanks for this site! Misery still loves company!