My Story... Surviving Severe Or Unbearable Pain Without Losing Your Sanity Or Giving Up
I'm Betting You Know This Hopeless Look!
If you're trying to survive unbearable chronic pain, chances are you do know this look. It's a mixed bag of agony, sadness, frustration, hopelessness and loss. This photo was taken one night out of a series of hundreds of nights of sheer hell I endured before I finally got an amazing surgeon to save me from it. The look never varied much. (The fur "rug" on my head is my Miniature Schnauzer, Ladybug). The first thing I noticed after getting my hip replaced was that the light had come back into my eyes! It had been extinguished for over five years.
If you're finding this article after searching for help with unbearable pain, I'd almost be willing to bet you're reading this very late at night, everyone else is in bed happily sleeping, and you're beginning yet another nightly ritual of unmitigated agony. Am I close? You're in front of your computer perhaps with the TV blaring yet another infomercial in the background. You know the late night TV schedule like nobody else. If you are finally fortunate enough to get some relief by sleep, you'll wake up feeling even worse than you did last night, if that's possible - the daylight version of Hell, coping with everyday life. If you didn't get any rest, you'll have all that morning "fun" too, except you'll be managing it with your ever-growing sleep deficit.
Extremely severe, unrelenting pain created a personal world that I have tried to put behind me and bury as deeply in the scrap heap of my subconscious mind as I can. But now, I will exhume it all to show you what it is like. If you're there, then of course you already know. But if you're not... and you're a support partner, relative or friend of such a person, you may have little or no idea what they are really going through.
Most of my writing is usually about positive things! But this true and very personal story is an exception. It's about what can happen to a perfectly normal person when something in life slams them into a state of constant, unrelieved pain. It's about the destruction living in pain can cause to your self-esteem, your self-value, your role in the family, the way you view the world, and the way the world views you. It's a story that will be painful for me to share, but I need to share it to help others who may be in the same situation. Perhaps you love someone who is in pain. If someone finds help in one word, one suggestion, it will make this all worthwhile.
Disclaimer: This lens will talk about subjects that may not be appropriate for some persons. Be forewarned please. Also, let me say that my Hell is not yours. Everyone's pain is different. I do not mean to imply that my pain was worse than yours in any way. Your perception is your reality, as was mine. And one more thing - I'm not a medical professional. Find a good pain specialist whom you can trust. I've been fortunate to have the same pain doctor through my long journey with pain. I would trust him with my life.
Rate Your Pain Level
How Much Pain Are You In Right Now?
Let me say that my Hell is not yours. Everyone's pain is different. I do not mean to imply that my pain was worse than yours in any way. Your perception is your reality, as is mine. One more thing - I'm not a medical professional. Find a good pain specialist you can trust. I've been fortunate to have the same pain doctor through my long pain journey. I would trust him with my life.
Don't Hold Back... Tell Us How You Feel!
Do you feel like you are receiving adequate pain management?
The original, in a size 2X in Black.
The Cincher Back Support
I've owned and used this product for many years. Once I found it I stopped trying to find new back supports - I was done. This is a very firm support that has two separate adjustments, both of which are very strong Velcro. It doesn't pop off or out of place, and it's very comforting to wear either under or over the top of clothes. I've provided you with links to several different size and color choices through Amazon below.
I Definitely Prefer This Look! With Less Pain, My Sparkle Is Back!
The Causes Of My Pain
I would often say that to God. "Enough already!" Whatever You are trying to teach me, I get it already!! I'd say that every time a new thing happened to cause me more pain on top of what I was already enduring.
My pain first started way back when I was 16, when our gym teacher decided it would be fun to have a martial arts day. I got thrown and landed badly and ended up at my first visit to the chiropractor for my back. Every so often after that, my back would go "out" and I'd have to get it fixed by the chiropractor. That continued throughout my 20's.
In my mid 30's, I was at work one day when my back went out but this time was different. A horrid pain like liquid fire went searing its way all the way down my leg to my foot. I was in trouble and knew it. Off to the chiropractor, this time a new one in our new town. I asked him, "Don't I need an xray? This is different from anything I've ever had." Oh no, we don't need that. He cheerfully did an adjustment, asked me to come back for another the next day, and I did. The second day I was worse than the first. On the third day after my adjustment, I made it home in unbearable pain and couldn't walk anymore. I crashed on the living room floor with a blanket. Around two in the morning, I woke up and went to stand up. The worst pain I had ever felt seared through my whole body and I saw stars. A visit to an orthopedic doctor to learn I had a ruptured disk at L4/L5, and off to surgery I went in 1994.
The pain was immediately better after the surgery, but came back about 18 months later. Same surgery, again, in 1996. This time the pain never quite went away. In 1997, I underwent spinal fusion surgery from L3 to S1, this time done by a neurosurgeon with an orthopedic surgeon. I never got better. Finally after six months of follow-up, my neurosurgeon threw me on the "surgical scrap heap" and sent me to a pain specialist.
My pain doctor is a wonderful man who listens to me. He did diagnostic tests including a Single Fiber EMG (SFEMG) which is an electrified needle inserted in your leg in various places to check nerve function and look for damage. It was the most painful thing I have ever endured. With validation of the cause of my pain in place, my pain doctor set out to help me. We experimented with steroid nerve blocks, first trying epidurals, which didn't help, then caudal blocks, which did help. Each one is a mini surgical procedure and is quite painful. I underwent I believe 17 of those. You could only have four a year.
In 1997, my pain doc along with a neurosurgeon implanted a Medtronic Spinal Cord Stimulator. It tricks the brain into thinking the pain signals are a buzzing sensation. It did help me quite a bit. Along with the blocks and pain medication, I did pretty well for awhile.
White in Extra Large
Oops, There Goes A Knee...
Black in Large
It was a sad day when I had to go on blood thinners for life due to having a DVT. I later had more DVT's and stroke that cost me half the vision in my right eye. Unfortunately, being on blood thinners meant the end of my spinal injections/nerve blocks.
In 2007, my husband's job transferred us to a little town in southeast Missouri where there was one tiny community hospital and no pain physicians. I actually flew back to Nebraska a couple of times a year to see my pain doc and rheumatologist, who was by then doing corticosteroid injections in my painful left knee.
I went to an orthopedic specialist in a town 30 miles away to seek help for my knee. He said it wasn't bad enough to operate on. I'll never forget the time when I went to the ER in desperation because I could no longer put weight on my left leg. That was an encounter with one of those ER physicians who think people in pain are just drug-seekers. I was already on pain medication, that should be enough to cover it, he said.
Well, as many of you pain patients have probably learned the hard way, your chronic pain meds don't always cover new, acute pain. This ER doc took an xray, saw that I had a sharp bone spur stabbing into my knee, had to know how painful that was, and refused to help me. He sent me home to suffer.
Finally, in desperation and at my husband's urging, I saw a sports medicine orthopedic doctor in St. Louis, 80 miles away. By the time I saw him, I had zero cartilage left in that knee. My destructive arthritis had completely destroyed it. He took on my case, did knee replacement surgery in the Fall of 2009, and solved that problem.
This photo was taken a couple of months before the surgery. I was at my heaviest weight, and I was in constant agony with every step and every movement of my knee. My son, bless his heart, was great at dragging me out of the house to see something exciting, like this flood of our local creek. His encouragement kept me going through many tough times.
"I said to him, 'So just to make sure I have this perfectly clear - you are saying you understand that I am in unbearable pain, you are offering me no pain management alternatives, you're refusing to fix it, and you're sending me home to suffer? Is that correct?' He merely nodded."
Uh-Oh, There Goes A Hip! And Another Hip...
Beginning way back in the early 2000s, I developed a new pain that was like a knife inserted facing upward in my right groin. When I would take a step, the knife would plunge in deeper. Luckily, at first this was an infrequent pain and it was brief, like a flash, although extremely severe. When it would hit me, often going down the stairs, it would make me fall to the ground if I couldn't catch myself. I figured it was coming from my spine, but my brilliant pain doc correctly diagnosed it as coming from my right hip joint. He arranged for me to have a steroid injection in it, which I underwent only once. The payback in relief was not enough to be worth the pain of the procedure.
In 2009, around the time of my knee replacement, the pain got more frequent and would last for a couple of days at a time, then something would apparently shift and i would get relief for a few days. It continued this way for several months, until we moved back to Nebraska in mid-2010. Then my world totally blew up. One day the killer hip pain, which was level 9, kicked in and never left. I was in total agony. It took me months to just get my boxes unpacked enough for us to survive. I was in pain hell, period.
My pain doctor helped as much as he could with pain meds, but it simply wasn't enough. I saw an orthopedic surgeon who said my degenerative arthritis had totally destroyed my left hip. He said it needed replacement, and referred me to see one of his colleagues to have it set up. Well, when my husband and I met with that colleague, he said my medical conditions made me a too high-risk candidate for surgery. He offered no other options. I said to him, "So just to make sure I have this perfectly clear - you are saying you understand that I am in unbearable pain, you are offering me no pain management alternatives, you're refusing to fix it, and you're sending me home to suffer? Is that correct?" He merely nodded. I have never been so glad that I dragged my husband to that appointment, and that's why I asked the surgeon that question. I wanted him to hear the answer. I told the surgeon, "You know what? You're afraid this surgery will kill me, but what you need to understand is that I'm already dead now. I have no life." He didn't care.
My husband had his knee surgery done around that time by a sports surgeon, and he suggested I see him for another opinion. As it turned out, he did only knees but referred me to his colleague, the "hip guy," Dr. Michael Morrison (pictured above). When I met Dr. Morrison, I told him, "I need you to be my hero!" He scheduled the surgery a few weeks out and finally I had hope for an end to the suffering. Yes, there would be medical risks, but we would manage them. Hel-LO!!! Now that's what I'm talking about. Hope, with a capital H!
When I woke up from the total hip replacement surgery, the nurses warned me how painful it would be to stand up but it wasn't! Within hours I was walking everywhere on my walker, to their amazement. They just didn't get it, I told them... it was so much better than the pain I had been enduring for years! Yes, it was painful, but it was a different kind of pain. My rehab was very livable and things were so much better!
Unfortunately, my evil arthritis had been silently at work all this time on my "good" left hip. It had been the strong one to support me through the first hip rehab. One day that familiar horrid pain hit my left hip, and never subsided. Back to see the surgeon, and plans were made to do the other hip, which was now also completely destroyed down to bone on bone. But this time there was an evil complication! I had a cellulitis infection in my leg from an open wound. For many reasons, I frequently get cellulitis infections anytime I cut my legs and the wounds take months to heal. This time was no different. I also had some complications from my clotting disorder that needed to be controlled. So I ended up waiting a total of six months for the left hip to be done. I had been instantly plunged from blessed relief right back into hell.
Finally the left hip was done in October of 2011 and my "new life," as I now call it, began! The rehab was a little slower this time, probably because my other leg still wasn't totally 100% strong. But I persisted.
Blessedly, the horrendous pain from both hips is just a memory now. And yes, Dr. Morrison is my hero!
Once More With Feeling... Another Knee, Really?
And Skin Cancer, Too...
Just as I was really starting to get around well with both new hips, my knee that had not been operated yet suddenly went "out." By out, I mean I could not bear weight on it. The unbearable pain lasted a few days, long enough to convince me that I had to get it fixed immediately. It just as suddenly settled down, but I was determined I would not feel that pain again! Back to Dr. Morrison, back to the hospital for a total knee replacement in February 2013. (At the same time, I had my first skin cancer, a basal cell carcinoma, on my face). It was a pretty miserable time, all in all.
This knee surgery was by far my roughest, the most painful rehab, and the most post-op complications – primarily severe swelling and pain. It was a full five months before I could say I had a day without knee and leg pain. The turning point was having a whole lot of accumulated fluid removed from the knee joint. The relief was immediate and I was fine from that day on. After that I could say I was happy I had the surgery done. Prior to that, I cursed myself for doing it countless times!
Me in 2015... Not The Prettiest Picture.
Oh Shoot I Blew Up My Shoulder!
In October I was washing a skillet in the sink when I turned my arm over to flip the pan and a completely devastating pain ripped through my entire right arm. The pain was so severe I became nauseous and almost blacked out. It literally doubled me over and I couldn't move for a couple of minutes. As it turned out, I had just ruptured my large Biceps tendon. After a few months of trying to get it better on its own, my ortho doc had a CT done of my shoulder. Come to find out, I had full thickness tears in 3 of the main tendons connecting the shoulder. I was a disaster. I underwent a 4 hour surgery to repair all the tendons at the end of January. I spent the next 9 weeks confined to an immobilizer sling (See my story about that surgery if you're interested).
And Let's Not Forget The Evil Wounds...
One huge ongoing source of severe pain for me is the problem I have with open wounds on my legs. My skin is paper thin from years of steroids I have to take for a medical condition for life. As a result the lightest bump or poke with a sharp object causes disproportionately large wounds which turn into diabetic ulcers. Last year between April and December I dealt with anywhere from four to ten open wounds at one time. All of these heal at a painfully slow rate, in fact this month some of them are a year old. I endured weekly trips to a wound treatment clinic for painful debridement procedures which would leave my legs "howling" in pain for many hours afterward. The debridement procedures themselves were just close to unbearable. More time than I can count I sat through them with tears rolling down my face.
The best solution I have found for pain control with these wounds is an over the counter 4% lidocaine cream along with prescription Lidocaine patches. I have to use them both sparingly in order to not interfere with wound healing. But use them I do. Sometimes you just have to survive.
It Ain't Over Yet...
Well, the CPPD arthritis is attacking my left thumb, my whole right hand, and osteoarthritis is eating away at my right shoulder. We'll see. My body always seems to have another "surprise" in store for me. Last week I managed to rupture my right biceps tendon while washing a skillet in the sink!
I will never be out of chronic pain. I have failed back surgeries and nerve damage that will cause me severe pain forever. But it is a monster I have learned to live with... provided I have help from good doctors.
My Pain-Causing Diagnoses...
- Failed Back Surgery Syndrome
- Myofascial Pain Syndrome (MPS)
- Degenerative Disk Disease
- Degenerative Osteoarthritis
- CPPD Arthritis (Hands)
- Radiculopathy (Nerve Damage)
- Diabetic Ulcers From Traumatic Injuries
Here Are The Three Ways I MENTALLY Survive Pain...
Have someone who GETS what you are going through to talk to by email, phone, in person, whatever. Someone who is going through a similar situation to yours. It's almost better to have an online friend because you can feel free to rant abou anything without fear of consequences. For example, if one of your relatives is making you crazy offering pain relief suggestions, it's probably better you don't rant about that to a relative of theirs! You don't need or expect this person to "fix" your problem. You just need them to hear you. I met one of my best friends 14 years ago online in a medical support forum, and I wouldn't have survived all these years without her! Yet we have never met in person.
Distraction. When people ask me how I do it (live with pain) I often say, "Hey, I'm the Queen of Distraction." We've all heard the stories about having a killer headache, going to see a movie and having the headache disappear while we're watching it. Or having our headache disappear while we're doodling with pen and paper, working a jigsaw puzzle, or crocheting. This is because when our brains are involved in creative activity, it somehow interferes with our perception of pain. Distraction WORKS.I've survived countless long nights and days by writing, crocheting or doing one of my other crafts. If you aren't crafty, find a book you can really get into, music you love, a movie to watch, keep a book of puzzles handy - whatever it takes to distract you for awhile.
Faith that things WILL get better. I hang on with every scrappy ounce of my being to the hope that if I hang on, tomorrow might just be a little better. And sometimes it is! And then there is that rare, amazing day once in a blue moon where I almost don't notice being in pain at all and I am able to feel almost normal. That's what I hang in there for.
I love aromatherapy combined with heat! Good for the mind as well as to reduce pain.
What About Your Friends & Family Support? - Do They Get It?
Do you feel you receive adequate support and understanding of your pain from family, friends, co-workers?
There are countless times I've reached for ice or heat. These are so handy because they'll do hot or cold.
Cold & Heat Combo Therapy On Amazon
When you are in pain, you may have been advised to use heat or cold therapy. Even if it doesn't lessen the pain directly, it can help a little by distracting you temporarily. There is always an ice pack on the ready in my freezer, and a microwaveable heated rice bag nearby. Always. Many times in the past, I had to take one or both with me just to survive a short car trip. These are a medical priority to you and you deserve to have nice ones that please you by their feel and/or appearance.
You can fill this one with regular ice cubes.
"My Hell is not yours. Everyone's pain is different. I do not mean to imply that my pain is worse than yours in any way. Your perception is your reality, as is mine."
You're Suffering – Check Your Checklist!
When we are in such severe pain, sometimes it is difficult to even think through it. Pain can be like red contact lenses we can't take off. At times like this we may forget to do all the things we could be doing to relieve even a fraction of our pain (and you know those fractions add up!)
Write down a list of all the various modalities you have at your disposal to relieve your pain. My list looks something like this... yours may be different. When you feel that your pain is out of control, check your list!
- Medication – have you taken all your meds? (That's a biggie because I tend to forget sometimes!)
- Do you need to go to the chiropractor and get the kinks worked out of your back?
- Position – could you be in a better position, like actually lying down on your side?
- Ice/Heat/Massage/Hot Water – could you try any of these to see if they help?
- Activity – do you need to stop whatever it is you are doing, just knock it off and rest?
- Spinal Cord Stimulator or TENS unit – could you be taking advantage of that?
- And of course, Distraction – find something to get your mind off of it.
A king size heating pad is important for larger areas like a hip or your back.