Dopers who live with chronic pain: want to talk about it?

[lorene]

I've noticed some really great support threads here (ADDopers, weight loss, I know there once was an anxiety thread updated monthly), and I know that more than a few people live with Chronic Pain.

I wasn't sure if anyone wanted to talk about their experience, their outlook, their coping techniques, etc.

I'm more than happy to share about my experience and my condition, but I figured I'd gauge the interest before spilling all.

[panache45]

It's hard to write about this without sounding like a hypochondriac.

I have chronic tension headaches, lower back spasms and painful knees.

But the main thing I'm dealing with now is peripheral vascular disease in my lower legs. My cardiologist has prescribed support stockings and daily walking. But after walking just a couple of hundred feet, all the muscles in my lower legs begin to burn in intense pain. I'm not supposed to stop, but I can slow down until the pain somewhat subsides. What this means is that I'm basically walking in slow-motion. And it's still torture. The cure for all this is more walking.

I'm scheduled to go on a major trip in August, a trip that will involve a great deal of walking every day. If I really push myself and walk every day until then, there should be significant improvement. I just have to keep pushing myself and work through the pain.

[lorene]

Originally Posted by panache45

It's hard to write about this without sounding like a hypochondriac.

I know. I suspect that that is one reason why such a thread doesn't happen more. People may mention their pain in the context of another thread, but it feels kind of...self-indulgent?...to dedicate its own thread. I worry that I'm inviting eye rolls and judgment.

On the other hand, despite the fact that chronic pain is not my identity, it is part of my life. 5 years from now, I will still be a mom and (hopefully!) still be a wife and I work full-time now and would never willingly give it up. But 5 years from now, I'm also going to be living with pain. I just am. I've been living with it for a long time and I've (mostly) accepted that it's not going to go away. It's an everyday thing, but I don't obsess on it everyday. Most days, I'm able to remember that no one is promised a life free from pain. I don't dwell on "Why me?"

Anyhow, I have to run out and may not be back here much until tomorrow. I didn't want to seem as though I was abandoning the thread.

[Rhythmdvl]

A childhood horsing-around incident led to total TMJ failure. (TMJ=temporomandibular joint, the jaw hinges). Turns out it’s an insanely complicated joint, and there is relatively little that can be done about it.

Not a problem for a while, but in my twenties I noticed that chewing gum or eating a lot of something tough (e.g., beef jerky) would cause something of an ache. It gradually became worse, yawning was very painful, chewing anywhere but a particular place was impossible, and a dull ache began to grow in both sides of the joint.

I’m at the point now where Wonder Bread—that horrid fake fluffy excuse for bread is painful to chew.

Underneath it all is a constant, dull, background ache. Anything I do mouth-wise causes sharp pain, but this is omnipresent in all circumstances. It can be drowned out during the day in ways, but it was never far.

On the lucky side, I’ve never had a cavity, so rarely have to visit the dentist. I finally got around to it a few months ago, and he recommended the doctor he did his residency with. Insurance doesn’t cover the problem (not just current insurance, but any plan I’ve been on), but it’s gotten so bad that the trip was in the offing.

Wow. Just wow. I’m on my second week of prescription-strength Naproxen and a nightly muscle relaxant. In the middle of the first night, I woke Mrs. Devil up to say the pain …. the pain is gone. For the first time in fifteen to twenty years, I can sit quietly without any pain.

It’s only been a week or so, and I’m supposed to be on a soft food diet, so the mechanical pain is still there. But it almost brings me to tears that the ache is gone.

[Slithy Tove]

I have rhabdomylosid, which means it always feels like someone just kicked me in the small of my back. I can't sit in a chair for more than a few minutes or else I'm in for a bad time standing up. A full night's sleep is something that other guy did: that guy I used to be.

I've known a lot of people who've used pain as an excuse to treat other people like shit. I haven't done that, and by not doing so I have accomplished something in a life where I haven't accomplished much on the whole. For me that's a source of satisfaction.

I don't like the limitations it's put on my ability, but it's trained me to monitor my capabilities, and to focus on what I can still do. Also, other people's bullshit washes over me much more easily. I just don't have the energy for things that are none of my business.

It hasn't been a good thing, but it's worthwhile to look for the positive aspects.

[Rhythmdvl]

Well, there go my plans for kicking Slithy Tove in the small of the back. Will have to find some other entertainment at the next DopeFest.

[aruvqan]

I have lumbar spinal stenosis, bone spurs in the sacrum on both sides, femoral-acetabular impingement, osteoarthritis in both knees, and CPPD in both feet. I previously broke my neck and back in 3 places, dislocated my right shoulder [which has given me bursitis] and carpal tunnel is starting in both wrists from using crutches.

Pain meds are a daily thing, and when the CPPD is starting a flare I resort to high dose colchicine. Unfortunately I can only take it for 3 days until I get the mouth sores. I take omeprazole to combat the rather nasty results of some of my meds. As my doc tells me I can do the colchicine/nsaid shuffle until the side effects no longer make it worth taking them.

I get all of 18 physio sessions per year now, thank you everybody who voted to reduce military benefits. Assholes. For now I can afford my medications, they haven't fucked that over yet. I would love to give a shout out to the FDA who gave a monopoly for colchicine to a single company who pumped the whopping 9 cents per dose to $4.98 per dose with absolutely no change in formulary. Fuckwads.

I would love to thank my dear husband for doing 20 years in the Navy, assuring me of medical care that is keeping me alive. Until they decide that veterans and their families get fucked over again by removing any retirement benefits. At least I have my funeral planned and paid for.

[PapSett]

When I was in the 7th grade, I injured my lower back playing football. My parents were never the king to takethe kids to the doctor, so I went untreated, although some days the pain was so bad I could barely walk or sit. When I was 18, I reinjured the same spot falling off my horse.

I am 50 years old now and have severe arthritis in my tailbone. Pain meds keep it bareable but there is barely a moment in my life that I am not hurting.

I also blew my left knee out many years ago; it's ok most of the time but there are days when it is almost unbearable. The last 2 weeks have been one of those periods, the pain actually makes me sick to my stomach at times.

Getting old sucks.

[Minnie Luna]

Originally Posted by Rhythmdvl

A childhood horsing-around incident led to total TMJ failure. (TMJ=temporomandibular joint, the jaw hinges). Turns out it’s an insanely complicated joint, and there is relatively little that can be done about it.

Not a problem for a while, but in my twenties I noticed that chewing gum or eating a lot of something tough (e.g., beef jerky) would cause something of an ache. It gradually became worse, yawning was very painful, chewing anywhere but a particular place was impossible, and a dull ache began to grow in both sides of the joint.

I’m at the point now where Wonder Bread—that horrid fake fluffy excuse for bread is painful to chew.

Underneath it all is a constant, dull, background ache. Anything I do mouth-wise causes sharp pain, but this is omnipresent in all circumstances. It can be drowned out during the day in ways, but it was never far.

On the lucky side, I’ve never had a cavity, so rarely have to visit the dentist. I finally got around to it a few months ago, and he recommended the doctor he did his residency with. Insurance doesn’t cover the problem (not just current insurance, but any plan I’ve been on), but it’s gotten so bad that the trip was in the offing.

Wow. Just wow. I’m on my second week of prescription-strength Naproxen and a nightly muscle relaxant. In the middle of the first night, I woke Mrs. Devil up to say the pain …. the pain is gone. For the first time in fifteen to twenty years, I can sit quietly without any pain.

It’s only been a week or so, and I’m supposed to be on a soft food diet, so the mechanical pain is still there. But it almost brings me to tears that the ache is gone.

One of the best TMJ docs in the country is at my school, where are you?

[runner pat]

Originally Posted by Rhythmdvl

Well, there go my plans for kicking Slithy Tove in the small of the back. Will have to find some other entertainment at the next DopeFest.

Be careful, you might get slapped in the face.

[Ruby]

My g/f has chronic pain from several back surgeries. She's on a handful of narcotics daily and is very discouraged with life right now. She's always been active, playing sports in high school and college but now it's a chore to stand on two feet.

I'd be interested in anyone's commentary on how they are coping and what their loved ones did to support/help them cope. I feel very helpless.

[Yorikke]

Originally Posted by PapSett

I also blew my left knee out many years ago; it's ok most of the time but there are days when it is almost unbearable. The last 2 weeks have been one of those periods, the pain actually makes me sick to my stomach at times.

Getting old sucks.

Hijack : what does the phrase "blew my knee out" mean? I hear it about athletes, but what exactly does it mean? My boss once hurt his knee, and told me he "tweaked" it. I asked, "but what does that mean?", and he said, ' I TWEAKED it!"

Joe

[PapSett]

Originally Posted by wheresgeorge04

Hijack : what does the phrase "blew my knee out" mean? I hear it about athletes, but what exactly does it mean? My boss once hurt his knee, and told me he "tweaked" it. I asked, "but what does that mean?", and he said, ' I TWEAKED it!"

Joe

In my case, I had stepped out on an icy wooden deck, slipped. and my knee bent SIDEWAYS. Tore out cartelidge. It is still weakened but there are times, like this last couple weeks that are agonizing.

[cgg419]

Originally Posted by PapSett

In my case, I had stepped out on an icy wooden deck, slipped. and my knee bent SIDEWAYS. Tore out cartelidge. It is still weakened but there are times, like this last couple weeks that are agonizing.

Done that to both knees, although the left knee was much worse and the only one that truly went sideways. Nothing agonizing yet, but it's never been the same, and I'm only 30, so I'm sure the best is yet to come

[aruvqan]

Originally Posted by Ruby

My g/f has chronic pain from several back surgeries. She's on a handful of narcotics daily and is very discouraged with life right now. She's always been active, playing sports in high school and college but now it's a chore to stand on two feet.

I'd be interested in anyone's commentary on how they are coping and what their loved ones did to support/help them cope. I feel very helpless.

Make adjustments to the house to make things easier on her. Handicapped toilet, grab bars. Make it so she can sit down to do food prep for dinner making so she can feel like she is contributing. Divide the housework so she gets the stuff she can do without stressing out her back. Store the more frequently used kitchen [or whatever, really] higher, nit in low cabinets that you basically have to crawl on the floor to see into and reach stuff out. [I ill use axillary crutches in the kitchen sometimes, I prop myself up under the arms and work standing if it is a really good day and I feel like doing something light and fast, like crepes or an omelet]

Let her do stuff like make up the menu and shopping list, plan things - feeling included is important, so it doesn't feel like you are a burden on anybody.
It gets pretty bad when you are stuck in a bed or chair and not able to do anything, and need someone to bring stuff to you or help you to the bathroom for a shower.

[lorene]

Originally Posted by Rhythmdvl

Underneath it all is a constant, dull, background ache. Anything I do mouth-wise causes sharp pain, but this is omnipresent in all circumstances. It can be drowned out during the day in ways, but it was never far.
<snip>

Wow. Just wow. I’m on my second week of prescription-strength Naproxen and a nightly muscle relaxant. In the middle of the first night, I woke Mrs. Devil up to say the pain …. the pain is gone. For the first time in fifteen to twenty years, I can sit quietly without any pain.

It’s only been a week or so, and I’m supposed to be on a soft food diet, so the mechanical pain is still there. But it almost brings me to tears that the ache is gone.

One of my issues is TMJD. It is a ridiculously complicated issue and insurance is even trickier. Medical insurance doesn't want to cover it because it's a mouth issue; dental insurance doesn't want to cover it because it involves joints and muscles.

The pain is really hideous some days. It astounds me that there's nothing anyone can do to change the mechanics of this. I'm actually glad I'm not a good candidate for surgery, because I hear that it's a crapshoot at best, and many days I am so desperate that I would try anything.

Is it Flexeril you are on?

Originally Posted by Minnie Luna

One of the best TMJ docs in the country is at my school, where are you?

Where are YOU, may I ask?

Originally Posted by Ruby

My g/f has chronic pain from several back surgeries. She's on a handful of narcotics daily and is very discouraged with life right now. She's always been active, playing sports in high school and college but now it's a chore to stand on two feet.

I'd be interested in anyone's commentary on how they are coping and what their loved ones did to support/help them cope. I feel very helpless.

When did the back pains start? When were the surgeries?

I think there may need to be a period of mourning for the life you thought you were going to have. I'm lucky now in that being active is generally a good solution to my pain (I also have back issues), but years ago, that wasn't the case. Can she try swimming and water exercises? A lot of people find that is a good way to ease back into exercise.

If she isn't already, I would recommend that she look into counseling, a support group, etc. It takes a long time sometimes for someone to go from the state of being desperate and discouraged and focusing only on "Someone needs to get me out of this pain NOW" and "Why me? It's not fair!" to "OK...no one has the ability right now to make the pain go away, and there may never be a resolution. How do I deal with it?"

And it's not a linear process. I know I would never kill myself because I have kids and I would never, ever do that to them. There are days, though, when if I had truly known that this pain was always going to be here and almost always going to be bad, I might have made other choices. It's overwhelming.

As for what support people can do...well, you're in a rough place. It's not going to help to give in to the desperation, but trying to talk her out of it might feel like an attack to her. I am struggling to think of what else to tell you that would be helpful. I'll think a bit and try to get more down.

[JFLuvly]

Has anyone tried marijuana for chronic pain?

[Ruby]

Thank you, aruvqan and lorene, for your replies. You're right, it's not a linear process. Some days are better than others but most of the time she's grieving for the life that she doesn't and likely never will have. She's had 3 lumbar surgeries and a couple of cervical surgeries, none of which has helped her pain. Her last surgery was about 2 years ago when they installed a spinal stimulator to ease the pain. It, too, didn't help.

She hasn't gotten to the "this-is-as-good-as-it-gets-so-how-will-I-deal-with-it" stage.

I do include her in household stuff like meal planning, grocery shopping using the powered cart, and light housework. She has worked her entire life (she's 37) until these back issues so doing housework isn't very satisfying. We're having some financial struggles now, too, so she feels like a burden because she can't earn a wage. I also don't want to make her feel like a maid.

She simply refuses counseling because it "never works". Well, duh, if you approach it with that attitude, of course it "never works". We have serious late-night talks when she's slipping into a lower than normal depression. We have a mutual friend who had a medical issue several years ago and she continued to feel sorry for herself so much that she's never recovered. I use this friend as an example of what not to do.

It's hard when you love someone in chronic pain. None of the options are good.

[obbn]

Originally Posted by Ruby

My g/f has chronic pain from several back surgeries. She's on a handful of narcotics daily and is very discouraged with life right now. She's always been active, playing sports in high school and college but now it's a chore to stand on two feet.

I'd be interested in anyone's commentary on how they are coping and what their loved ones did to support/help them cope. I feel very helpless.

Ruby,
I feel for both you and your girlfriend. I also have had multilple back surgeries. I am now unable to work and on Social Security Disability. I have to dose daily with morphine to control the pain. I know that she is discouraged, I get that way myself sometimes. I used to be highly active with a very high paying job. Now I can't do much without terrific pain and of course I barely make it financially. But tell her to realize that she isn't the only one going through this. She has to learn to take comfort in what she has and be thankful that it isn't worse. I have my wife and my kids to keep me going. Life isn't what it should have been for me, but I am still here and I have someone who loves me very much. It could be a lot worse.

[grey_ideas]

Ruby, obbn ... that's tough for both of you, on the receiving end and on the observing end. I have spondylolisthesis and it's been symptomatic for about 16 years (I'm 36), I can feel it all the time (some lower back pain and 'awareness' of the sciatica in my right leg) but under normal conditions it's manageable. The difficulty comes when I need/want to go out anywhere, I can do 15 to 20 minutes on my feet before the sciatica gets to be a real pain in the arse. Even this isn't a big issue since if I'm on my own I can grit my teeth and walk through it to get done what I need to get done (shopping for example). The problem comes if I want to go out somewhere and be sociable since it can be hard to be sociable whilst the sciatica is making itself known.

Like both of you I used to be very active (martial arts, taught sailing, cycling, etc) but these days I'm much more limited. I can keep my weight in normal bounds by watching what I eat and I'm going to start up swimming again but I'd be lying if I didn't say it's hard to avoid pushing people away because the idea of having to get up and go walking is...depressing and people eventually get fed up of the guy who doesn't like to go out and socialise.

[grey_ideas]

Humph...missed the edit window, I wanted to add:

I know the answer for me is fusion but I am loath to go for it. When I first found out what was causing my sciatica I saw two surgeons, one who said "get it done now" and the other who said "wait until you are in so much pain you can't sleep then get it done"...so far I've stuck with the second option. I have a degree in medical science, I think it's a case of knowing a little too much about what's involved and the risks associated with it (scale of results being: fully functional - slight improvement - no improvement - worse - much worse/complications) that keeps me away from the surgery until it hits that second option On the other hand, my aversion to walking (for the obvious reasons) is starting to seriously mess with my quality of life...decisions, decisions.

[Philster]

My chronic pain, and I deal with them with what feels like a minute-to-minute approach daily:

I have a terrible tendinitis/arthritis and sometimes impingement in my shoulder that results in my hand/arm going numb every night no matter how I sleep and I cannot throw a ball.

I have a degenerating disk in my lower back. I've mostly got this one licked through a regiment of serious exercise/strengthening, but I cannot sleep comfortably. I. Just. Can't.

I have a degenerative hip disease.

I keep myself as fit as possible, eat right and feel lucky to be as healthy as I am. I am posting... not complaining.

[lorene]

Originally Posted by Ruby

.

She simply refuses counseling because it "never works". Well, duh, if you approach it with that attitude, of course it "never works". We have serious late-night talks when she's slipping into a lower than normal depression. We have a mutual friend who had a medical issue several years ago and she continued to feel sorry for herself so much that she's never recovered. I use this friend as an example of what not to do.

Bolding mine.

I think this is a good thing to look at. One of the reasons why I've tried to do as much as I can despite pain is that I finally saw my way clear to thinking about what I wanted to be like. I didn't/don't want to be the bitter, complaining chronic pain patient. I especially don't want to be the bitter, complaining mom to my children. I want to affect their lives as little as possible with this. Yes, there are nights when I just can't read stories because my jaw hurts too much. There are times when I'm lying on my icepack on the couch trying to get my back under control, and therefore I can't do <whatever> right now. But I really want those times to be few and far between.

You're right that loving someone who lives with chronic pain is difficult. You can't make the pain go away, nor can you speed your GF to the point where she is emotionally ready to do some of the psychological healing work. It sounds like you are good and supportive without being enabling, though, and I think that's important.

[aruvqan]

Originally Posted by JFLuvly

Has anyone tried marijuana for chronic pain?

Yes, and it works. I can not wait until the jackasses who feel a medical plant used for thousands of years, and that already has non druggie advocates stating it needs to be moved to a different schedule get their respective heads out of their asses and actually legalize it for medical use. Recreational users are on their own. [I don't care if you want to use it recreationally, as far as I am concerned it is as evil as a beer and a cigarette] I just want to be able to get it at a dispensary as a bud, or in the form of hash or as an edible. I do not want to pay criminals in Mexico to obtain it, and I would like the option to grow my own. I would personally love to open a proper dispensary here in CT, and to have space in the building to grow a good indica and a good sativa to supply my dispensary. I would also like to not have to worry about being raided, my home confiscated and my ass sent to prison for using a plant that grows wild everywhere but the north pole and antarctica.

Originally Posted by Ruby

Thank you, aruvqan and lorene, for your replies. You're right, it's not a linear process. Some days are better than others but most of the time she's grieving for the life that she doesn't and likely never will have. She's had 3 lumbar surgeries and a couple of cervical surgeries, none of which has helped her pain. Her last surgery was about 2 years ago when they installed a spinal stimulator to ease the pain. It, too, didn't help.

She hasn't gotten to the "this-is-as-good-as-it-gets-so-how-will-I-deal-with-it" stage.

I do include her in household stuff like meal planning, grocery shopping using the powered cart, and light housework. She has worked her entire life (she's 37) until these back issues so doing housework isn't very satisfying. We're having some financial struggles now, too, so she feels like a burden because she can't earn a wage. I also don't want to make her feel like a maid.

She simply refuses counseling because it "never works". Well, duh, if you approach it with that attitude, of course it "never works". We have serious late-night talks when she's slipping into a lower than normal depression. We have a mutual friend who had a medical issue several years ago and she continued to feel sorry for herself so much that she's never recovered. I use this friend as an example of what not to do.

It's hard when you love someone in chronic pain. None of the options are good.

True that. I do get depressed, and I don't bother with any sort of counseling because I have reached an accommodation with my body. It fucks me over and I deal with the pain and inability to do what I used to. I also understand that I *will* end up in a care facility with any resources I have being confiscated for my care, so i will spend interminable years stuck in a bed with Nurse Ratchett caring for me, and no money to spend on jack shit for myself. mrAru dying will suck for me. I also understand that alzheimers and parkinsons are distinct possibilities. I have decided to off myself before this happens to me.

Originally Posted by grey_ideas

Ruby, obbn ... that's tough for both of you, on the receiving end and on the observing end. I have spondylolisthesis and it's been symptomatic for about 16 years (I'm 36), I can feel it all the time (some lower back pain and 'awareness' of the sciatica in my right leg) but under normal conditions it's manageable. The difficulty comes when I need/want to go out anywhere, I can do 15 to 20 minutes on my feet before the sciatica gets to be a real pain in the arse. Even this isn't a big issue since if I'm on my own I can grit my teeth and walk through it to get done what I need to get done (shopping for example). The problem comes if I want to go out somewhere and be sociable since it can be hard to be sociable whilst the sciatica is making itself known.

Like both of you I used to be very active (martial arts, taught sailing, cycling, etc) but these days I'm much more limited. I can keep my weight in normal bounds by watching what I eat and I'm going to start up swimming again but I'd be lying if I didn't say it's hard to avoid pushing people away because the idea of having to get up and go walking is...depressing and people eventually get fed up of the guy who doesn't like to go out and socialise.

I love socializing, but it works best if we have people over to visit - I have my comfy chair, and the computer if it turns out I want to show someone something like a link or image. We decided next summer's vacation we will rent a flat in Amsterdam because we can cook at "home", and have my euro gaming buddies over to visit. Staying in and socializing is way more restful than trying to go out into a crowd. Plus we always discuss foods, and we want to have a cook-off

[lorene]

In a cruel twist of fate, after all of the things I wrote about acceptance, etc...yesterday turned into one of those unbearable pain days for me. It astounds me that we have such advanced medical technology in this world, and technology and science in general has advanced so much, but my stupid jaw pain cannot be cured.

I spent over an hour combing sites on the internet about TMJ, even though I know full well that there is nothing new out there. I don't know what I expect, that I'm going to stumble across something I haven't seen or tried before?

Yesterday was a 4 Aleve and 8 Advil day, and I skipped dinner because I just couldn't open my mouth. Luckily, today seems better.