Experience dealing with chronic/painful diseases in the real world?

[Nitrous]

In 1989, I broke my back in a skiing accident. I did not seek medical attention because the pain felt identical to when I had hurt it before. The docs then, never even x-rayed my back, but thought it would be great fun to spend a lot of time checking out my separated shoulder which did not hurt 1/10th as much as my back.

So when it happened again, I just "sucked it up" and went on with my life. After a month of terrible sleep and very little reduction in pain, my neck was still swollen. I went to the doctor, who was NOT happy with me. Too late to fix anything. Two years later I was beginning to get back to normal. That was when I began to gain weight because I could no longer play sports or lift weights I did set a personal record, in bench press, the week after I broke it then never benched again, for years.

My advice for chronic pain is not good. Suck it up. You really do get used to it. Act as normal as you can. If your leg hurts, don't limp on it! You'll only hurt everything else too. If it only hurts but is not causing injury, ignore it. It doesn't go away, but you do get used to it, so it's what your normal is. I only take pain meds, at night. When I began worrying about my liver, I reduced them down to less than a single normal dose of OTC meds. I decided taking more prescription pain meds would only mean being addicted to a higher dosage. Flush that.

When I broke some ribs before thanksgiving, I was too hurt to work (breathe, yawn, clear my throat, cough, sneeze or sniffle... all of which happen anyway) and finally just went back to work because; if people wrestle and fight MMA fights with broken ribs, I should be able to bounce around in a truck and on a forklift, over broken ground.

It was awful, but you know? I failed to die of it, at all. When something'd happen that was excruciating, I found saying the words "Is THAT all you got?" and going right on, was very effective in keeping my attitude tougher than I wanted to be.

 

[sixeye]

I suffer from Atypical Trigeminal Neuralgia triggered by sound and light, i survived sever depression and suicide. Its really scary knowing that one day i will kill myself because the pain is always there, i sit in my room 3hours a day in the dark and put my fingers in my ears because meds are just not strong enough and i dont want morphine because i want to have a life.

Its really amazing what ppl go though each day just to live because i believe no matter how bad things get, there is always somebody that is worse like the starving children of the world.
just live your life because there is ppl out there that would swap with you in an instant

I dont want sympathy from ppl i just want respect like dont play music when my pain is triggered by sound.



- Sixeye

 

[mulewagon]

sixeye, are you able to control the sound and light? Do photogrey lenses or wraparound sunglasses help?

Have you tried shooter's ear protection, which filters out certain ranges? These folks might be able to help you, if you need atypical ranges filtered out: http://www.etymotic.com/

 

[fuzziebutt]

I have migraines, and am very sensitive to light and sound, and if I may add to this, no matter how good you may feel, PLEASE DON'T WHISTLE IN PUBLIC!! You never know who is trying not to cry when they hear it.

I suffer from Atypical Trigeminal Neuralgia triggered by sound and light, i survived sever depression and suicide. Its really scary knowing that one day i will kill myself because the pain is always there, i sit in my room 3hours a day in the dark and put my fingers in my ears because meds are just not strong enough and i dont want morphine because i want to have a life.

Its really amazing what ppl go though each day just to live because i believe no matter how bad things get, there is always somebody that is worse like the starving children of the world.
just live your life because there is ppl out there that would swap with you in an instant

I dont want sympathy from ppl i just want respect like dont play music when my pain is triggered by sound.



- Sixeye

 

[RHRanch]

I have migraines, and am very sensitive to light and sound, and if I may add to this, no matter how good you may feel, PLEASE DON'T WHISTLE IN PUBLIC!! You never know who is trying not to cry when they hear it.

X2 - Although unless I am very unlucky, and get a sudden onset and I can't get me meds in time to stop it or my meds don't work... I am not usually in public... That's because I am usually at home vomiting like the exorcist and wishing someone would shoot me to put me out of my misery. I guess this thread shows that pain disorders/conditions are common.

 

[orumpoultry]

In November of 2008, I broke my back in two places, shattered my Sacrum, broke two bones in my tailbone region, and dislocated my shoulder. These are just a few of the damages taken. During which I did not seek proper medical treatment immediately. I had been thrown from my horse, and she drug me ( an unknown distance ) up into my neighbors yard. UP their cement driveway and ONTO their porch where she stood on me until they saw me and came to my rescue. When they got me untangled, I regained consciousness and my first thought was to catch my horse. They helped me onto my feet, where I hobbled across their five acres to where she was grazing. She trotted away, long story short - I ended up walking/hobbling BACK to my yard, crawled THROUGH my fence ( where I passed out, and lay for several minutes ) in an attempt to get a bucket with feed in it. They tied her to my front gate and lay me on their couch, where I lay going in and out of consciousness for some time waiting on my mother to take me to the hospital.

If I hadn't been wearing my helmet and safety vest, I would have been killed. It was over a year of recovery.

Every day I have searing pains in my lower back and right shoulder. It feels like someone takes a knife and just starts twisting and grinding it until I feel I can't bear the pain anymore. I don't take pain killers, as I refuse to give in just yet. My arm is constantly on fire, and my wrist swells randomly throughout the day from the nerve damage. Heck, several parts of me swell from the damages I took that day. Including my knee which I am missing 30% cartilage in. Every day I hear someone complain of their pain, and I feel envious. Theirs is manage able, mine is not. Pain killers have NO effect on what I feel. NO effect on the constant drilling and compressing of the nerves and tendons that are ALWAYS on fire. Always burning. The constant swelling, that is noticeable to strangers.

Very few people know about the constant pain I'm in outside of my family, because I push through it. I ignore it to the best of my ability. I know it will only get worse, and I know that if I start giving in now... just, yeah.

So I continue to ride my horses ( although there are a few fears I still have to get over after my accident. ) I continue to feed and water my birds, carry and haul all my feed, throw hay farther than most CAPABLE people can. I still go above and beyond my strength, and only allow myself a few minutes at the end of every day to collapse and cry. If even that. Seeing as I live on the same property as my mother, there are even days I still go curl up in her lap and beg for a back massage. I see a chiropractor weekly, I can only imagine what it would be like if I ever stopped. I have permanent subluxation in those regions of my back. As I type every joint in my body is screaming, inflamed, and throbbing. My shoulder has thousands of pins and needles pulsing. My back hurts so bad I have tears in my eyes. But I will not give up.

But, yeah. I just do my best to ignore it.

ETA: I also suffer from migranes, 'mild' according to my doctor, that started shortly after my accident. They are so bad when they come, that I DO have to curl up in a ball in a dark, quiet room and just cry until I pass out from the pain or pray the medications actually help.

 

[sixeye]

Yeah i wear sunglasses pretty much all day even when im inside they do help. Ive never really thought about ear protection because ive mostly just lived with the pain and when it gets really bad i just lie down and hold my ears in the dark until its goes back down to mild. the pain is pretty much apart my day now, i might actually look into that ear protection stuff thank you..

Its hard sometimes just sitter there with half my face burning and acting like everything fine. If it wasn't for Google i wouldn't have even known about my disease because the doctors just had no idea. i knew what i had 12months before a psychiatrists diagnosed me, Google pretty much saved my life.


- sixeye

 

[justbugged]

I was diagnosed with Fibromyalgia in 1986. Back then there was very little known about. For me I have found it to be a progressive disease. Just about the time I think that nothing else can hurt, my body will prove that there is always something else that can and will hurt. Kidney stones is a very special level of pain. Gut pain is about as bad as pain gets.

I do know that I have nerve damage in my feet. I had surgery to help it, but my feet hurt just as much if not more now than before. most of the time the pain is in the 8 or 9 range. I am grateful that, at this point I am not vomiting from the pain.

I have known that for me the pain is simply a nuisance, and meaningless. I am not going to die from the pain, and I am in no danger. I liken it to a person that is missing a limb. It simply is the way things are for me.

I do use medications to control what symptoms I can. Yet I have never been allowed to use enough to be comfortable all day. I function much better when my pain is controlled. That doesn't mean that the pain is going, but that the pain is back into a more reasonable level. My state laws do not allow me to control my pain with the most effective pain meds.

I do know that I keep being told that all my pain is psychosomatic, so therefore antidepressants should fix it. I have found the antidepressants are terrible drugs, and will create more depression than might have existed before such treatment. I avoid medications that mess with brain chemistry. Opioids are much safer than many medications that the drug companies want us to believe. Many common medications are very addictive, just try not taking an antidepressant after getting started on it. If you are really in pain, opioids are not any where near as addictive as other types of meds. For me the worst that happens is I don't feel good for a few days. Personally I can't tell the difference between the normal pain, and any discomfort from not taking the pain meds. Over the counter medications can be more dangerous than prescription meds. Do you research on anything you take, and listen to you body.

As for working, I haven't worked outside my home since 2004. I no longer can move or think fast enough for most employers. It doesn't help that I am a woman in my 50's either. The mental fog as also been getting worse as time goes by. If my DH didn't love me, and didn't have a very good job, I am fairly sure I would be homeless at this point. I have been fighting for benefits for over 7 years now. I would rather work than deal with the results of my condition.

As for college look for schools that have counseling for students. Many colleges also have health benefit programs that are more affordable.

On a final note; Choose to be happy, choose to find small things that make you grateful. Happiness is all around us, look for it. It also doesn't hurt to whine about how miserable the pain is making you feel at times. No one can always pick themselves up every time without occasionally saying how much the blankety blank pain is paining you. It helps to find a variety of outlets. Nobody is capable of dealing with your pain all the time. It pays to have a number of outlets to go and complain to.

 

[justbugged]

Yeah i wear sunglasses pretty much all day even when im inside they do help. Ive never really thought about ear protection because ive mostly just lived with the pain and when it gets really bad i just lie down and hold my ears in the dark until its goes back down to mild. the pain is pretty much apart my day now, i might actually look into that ear protection stuff thank you..

Its hard sometimes just sitter there with half my face burning and acting like everything fine. If it wasn't for Google i wouldn't have even known about my disease because the doctors just had no idea. i knew what i had 12months before a psychiatrists diagnosed me, Google pretty much saved my life.


- sixeye

Unfortunately you were in need of a really good neurologist not a psychiatrist. I have found that if you don't know what wrong with yourself, that most doctors won't know whats wrong either. Google is a great tool.

 

[booker81]

I have quite a few chronic pain issues - Fibromyalgia and Ehlers Danlos Syndrome are the two that cause the most pain. The EDS causes chronic joint subluxations/dislocations - from major (shoulders and hips) to minor (fingers, ribs etc). Right now at this moment, from doing too much walking yesterday, both hips are subluxed and trying to dislocate each time I try to stand up.

Chronic pain is a bear to live with, but you can live with it. You have to be open to try things, to change your outlook, to just wake up each day and give it a whirl with that you're given.

Mental health is tops for me to help deal with life. I take an SSRI - which has been proven to help with chronic pain as well as help mood. I find it's easier to deal with unending pain with a little chemical help than without. I've been on it for a few years now and do well. It did take a few years to find a medication that I tolerated to keep my moods in check, but even with the same amount of pain, I'm a happier person, and more productive within my limitations.

My issues required seeing a rheumatologist to be diagnosed. He was pretty drug happy, and for a few years, I was taking quite a few pain management drugs. After a lot of weight gain, I decided to research more, and I've weaned off most of the pills. I have a lot of leg pain when I lay down, and took RLS drugs for it,but have found that compression stockings help a lot, so I use those now when I have a bad day. I don't need the RLS drugs. I did lose the weight too via diet (I'm unable to do any sort of repetitive motion exercise - long walking, running (ha! I haven't run more that 3 steps in years), swimming, biking etc). I stay active, I just do little things in spurts. Repetitive motion of a joint for more than 5 minutes will guarantee a subluxation.

Sleep is important for pain management - the less good sleep you get, the more you hurt (LOTS of studies and scientific info on this). If I take pain meds, I take them before bedtime. If I'm starting down the road of cruddy sleep patterns, I'll take an OTC sleeping pill (OKed by my doc) for a couple nights to retrain myself. I follow a pretty set bedtime routine. I need it. When I fall off the sleep wagon, I have a lot more pain.

I do have a few different levels of meds I keep for pain - from Ultram to Vicoden ES to Percocet. They last me a long time as I take them rarely (usually one or the other once or twice a week), but I have them, and generally I have to get the scripts redone before I run out. I work with my doctor on this as well.

I had to change my career. I loved science and for 7 years, worked in laboratories. Most of that work involves standing and walking. I can't do it anymore. When I returned to the workforce after having a kid, I ended up in a desk job in IT. I love it now, it's different, but it's much kinder to my body. I have desk modifications to make it more comfortable - my workplace is very strong on ergonomics, and willing to modify work spaces in any way needed.

I based all of my career jobs on the availability of GOOD health insurance. I know I need it - I know I'll be in the ER for something at least a couple times a year - a shoulder that I can't manipulate back into the joint, a knee cap that's ended up behind my knee, something. I also had a rash of knee operations in 2010/2011 - I had 4 surgeries in 7 months, and was out of work for 2-3 weeks each time. I had weekly appointments at a wound clinic for almost a year to heal the open wounds on my knee. My workplace has a generous disability and time off policy - however, they expect a LOT of productivity when you are there, and I give that to them.

Just some of the things I've found. I can't remember a day when I didn't have something in pain, but I've learned how to compensate and live with it, one way or another. I like to read new studies and see what I can do without medication, but I also don't discount the use of medication if the good effects outweigh the bad. I modify and re-evaluate as I go, and keep my mind open on what I can do, and don't beat myself up for what I can't do.

Good luck!