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Living in chronic pain
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?
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@kaki068 I totally understand where you’re coming from. I have neuropathy in both feet spinalis in my neck pain 24 seven still working, but it’s chore every day to even get out of bed. It is very hard to carry on the high like this, but don’t feel like I have a life anymore.
@vivekpanday I know what you mean. Had surgery 3 years ago and havent slept properly ever since. Keep giving me different medications. Cut my nerves and have got Restless legs and cant sleep . I dread gong to bed so put me on Trazodone 50mg and 900mg of Gabapentin. Been waiting for hosptal appointment for 4 months now getting fobbed off.
@mrmacabre Hello, I'm not sure if you can call this a good thing, that there are this many people commenting here that are having the same type of medical situation, being in pain all day, every day. What I was thinking is with this many people communicating about this, there will be suggestions for people to try that could help figure out what is happening with them. I've been on three discussion boards with the MayoClinic, and I've found new things to try over the past couple of months.
My situation; I am a 63 year old man with chronic right side oblique and flank pain from the muscles being constantly spasmed / locked. This started in July of 2023, so just over three years ago. I had low right back pain serious enough that my wife drove me to the ER. A CT scan was done of my abdomen and pelvis, but they found nothing wrong with my organs, no stones, no mass build up, and they sent me home with the same pain I arrived with.
Three years later, I've been to 5 hospitals, and I've seen over 30 medical professionals. I've had every type of imaging done, every blood test done. Besides seeing doctors, I've been to chiropractors, acupuncturists, and physical therapists. I've had three epidurals in two locations on my spine, I've tried acupuncture with trigger point injections, acupuncture with cupping, all with no change to my condition.
Now I am actually in more pain since this past February when I had my third epidural. This one was at T11-T12 of my spine, and the other two were done at T12-L1. The first two at T12-L1 did not cause any pain during or after the injections. But they didn't help, either. However, the T11-T12 epidural caused a lot of pain, both during and after the injections. I was literally yelling on the table as the doctor did the epidural. That day he said that could be a good thing because they hit the spot causing the pain.
Unfortunately, it did not help, and 48 hours later, I was in more pain after the epidural than I was in before. To this day my side cramping is really bad, to where I am walking around at a 7/8 pain level, and then any activity that activates my core (walking, bending over, twisting, etc.), causes what feels like a calf cramp in my side. I have to lay down immediately and do some deep breathing until it stops.
So, this brings me to why we are all here, we are hoping someone will have some type of idea for what it could be, and how to treat it. I know that is my main reason for being here, to find someone that has had this, or knew someone that had this, and what to try for relief.
I have become a hermit, pretty much, because of the pain I am in from when I get out of bed in the morning, until I go to bed at night. Laying on my back is the one thing that relieves most of my pain. However, as soon as I am up, it instantly starts again, my right side muscles locking, and it feels like someone is shoving something up under my ribs on the right side. The only time I leave the house is for a doctor's appointment or physical therapy.
The rest of the time I am holed up at home, researching everything I can about this condition. I've written letters to people around the world; a professor in Europe, a woman in Ecuador who said she knows someone having a similar problem, and several universities here in the US. What this also does is give you ideas for what the problem could be, what type of treatments are available, and also what not to try.
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1 ReactionPlease will check out neuroplastic.org
Just a totally different app roach that cab be useful in conjunction with physical treatments. Also check out Curable app it's for people in chronic pain, both neuroplastic and structural lots of classes lots of meditations and other activities you can do to retrain the brain.
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1 ReactionI hate to say it but there is no silver bullt. It's a combination of things that help me keep my pain level between 5/6. I don't believe surgery is a good option ... it tends to make things worse. I've gone through all medications over 28 years. I've found one that really helps me as I wake up in the morning. Tramadol 50 mgs ... takes the edge off the pain and gives me the initiative to take a shower. I try to take control of the things I can control. I talk with my neurologist & she gave me home physical therapy with Luna ... pretty good ou†fit. They've really helped me with pain in my lower back .. they bring the gym to the house. Stretching is a big help to my lower back. I've had physical therapy for 28 years ... they just need to make sure I'm doing them right and not hurting my lower ... I have three herniated disks and arthritist in my upper back. I can nearly walk with a cane, I've found I can ride an electric. trike a long the beach .... feels so good to see people & getting out of the house. I live a mile from the beach so I don't have to put the trike in the car. In Los Angeles, they have bike lanes all along the shoreline. The good thing with electric trikes is you don't have to pedal if you don't want to. It is so peaceful. I retired from work 4 months ago, I decided that I'd play golf with my son ... once a month. I don't really play bit I'll putt with him on the practice green. He is a really good golfer now ... he is a scratch golfer. He'll shoot even par many of the times together. I used to be a scratch golfer myself. I had to give up golf 3 years ago. My left hand isn't strong enough to finish my backswing. Over the past 10 years, Church has become a part of my life. We moved to the South Bay 9 years ago & join St Peter's Presbyterian church. It has given me a new purpose, I'm responsible for creating all of the financials for the church. I need things in my life that give me hope. I believe in Jesuss Christ as my savior & that I will be in a place where I don't feel pain anymore. But, in the mean time I need to make the best of my life. We aren't on earth too long & we don't want to waste any time. I'm reading a book bt N. T. Wright called Surprised by Hope. I don't know about you but I need things that give me hope. At church, I've joined a Men's group that meets at 7 am in the morning. It is helpful to see how other men deal with issues in their lives & I have people that I trust and can †ask wi†h confidentially. My wife is a big help to me ... I couldn't live in a house alone. She loves having friends and family over ... it is really helpful to me to stay engaged in life. So as you can see, my strategy to stay in gated and have hope is a mixture of several things. My kids always ask me how I stay so positive. On other thing, I stay away from running down the rabbit hole ... how things may worsen ... I've seen over time that many of these things don't actually happen ... therefore it is a waste of time. Sorry for the long text ... probably should have several paragraphs ... Please try to have strategies in your life to stay positive. They ar out their, you just have to look for them.
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4 Reactionsi feel your complete frustation with the Dr.s It is definitely like they do not hear us. I also have osteo of the spine bulging discs and multi level DJD. as well as pelvic floor dysfunction causing elimination problems. The pain is unspeakable. Multiple avenues have been tried and still no relief much. I do not think anyone can truly comprehend what another goes thru until you been there yourself. I walk in pain, sit, stand and function in pain. The way I deal with it ... do what I can medically for relief if any .... but mostly I pray pray pray pray. I have been in lots of pain for going on 5 years now... tried pills, nerve blocks, surgery, accupuncture, massage, red light therapy, PT, Pelvic floor therapy, and so I pray to get thru another day and look for what I can be grateful to God for. I certainly get discouraged, weary and worn out but God gets me thru another day and I continue to pray and believe for good and that someday I can get some relief. I understand everything you are saying absolutely. I dont know what to tell anyone to do anymore with chronic pain except to practice prayer, gratitude and do what I can and ask God for wisdom . currently a spinal cord stimulator perhaps in play.. not sure yet. I will pray for you and that your drs can find some treatment for you. Godspeed
G
I can't believe the number of responses and likes that my story has produced in less than a year's time. It's helpful, but also kind of depressing knowing how many of us out there that are forced to live our lives in chronic pain. I honestly can't remember the last time I had a pain free day, it's been decades.
I've been retired because of my arthritis and neuropathy for 11 years now, and don't have any idea of how much longer I'm willing to live like this. The pain, burning, and numbness hasn't gotten anything but worse, and I can't live anything even close to a normal 67 year old man's retirement years. We all got the short end of the stick.
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1 ReactionI was okay with my back pain back when my PC could prescribe anything he needed to prescribe for his patients. Then the dea rolled in and decided that opioids were bad for EVERYBODY and all of the docs stopped prescribing it. I went 5 years with tylenol, which seemed useless and after crying in my neurologists office he referred me to a pain management specialist down the hall. I am one of the lucky ones, I have been on the same dose of hydrocodone with tylenol every 8 hours. Never miss a dose and be faithful about the every 8 hours thing. I set an alarm to remind me to take it. I have some good days and a lot of bad ones. All I can say is find a pain management doctor who will give you what you need.
@mslee56
You are so right
I see a chronic disease specialist and she is my pain doctor. She has been a life saver to me! I have a video meeting once a month with her just to check in and bring up any problems or anything else. She is controlling my pain with morphine er twice a day and oxycodone immediate release up to four a day. I can't say that I'm totally pain free but I feel a whole lot better than I would of without the drugs believe me. I also use lidocaine cream on my hands and wrist when the pain is unbearable it really helps.
Take care 🙂 💕
@cjcatmom
Why didn't you have surgery for the fracture? You could have been spared all of those months of suffering. This type of surgery is common done every day. I don't get it.