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May 23, 2011 8:25 AM Subscribe
How can I cope emotionally/psychologically with chronic physical pain?
So, I have several chronic physical illnesses diagnosed by the appropriate medical specialists.
None of them are life-threatening, but they definitely affect my quality of life.
Walking hurts.
Standing still hurts (at times, badly enough to make me sob, at other times, badly enough to make me scream.)
Having sex hurts. Lying in bed to sleep hurts. Driving hurts. Being a passenger in a car hurts.
Sometimes even eating hurts (intestinal pain.)
Pain medication can only do so much: either it doesn't touch the pain, or it leaves me too mentally foggy to function.
How can I cope with the chronic physical pain?
It makes it really hard to enjoy activities, knowing that even if I'm fortunate enough to be low-pain right this minute, I will get a pain-payback 15 to 60 minutes after I stop the activity.
The more physically active I am, the more pain that I have, so sometimes it feels as though I'm being punished for being active and doing things.
and then there are the really bad pain days, when I get dehydrated because standing up to get a drink of water hurts too much...
I have an appointment with a psychologist who specialises in chronic pain management.
But that's in about two months (they have a long waiting list), and two months is a long time when you're in pain every day,
so in the meantime, I thought I would see what Ask Metafilter suggested...
Thank you in advance!
So, I have several chronic physical illnesses diagnosed by the appropriate medical specialists.
None of them are life-threatening, but they definitely affect my quality of life.
Walking hurts.
Standing still hurts (at times, badly enough to make me sob, at other times, badly enough to make me scream.)
Having sex hurts. Lying in bed to sleep hurts. Driving hurts. Being a passenger in a car hurts.
Sometimes even eating hurts (intestinal pain.)
Pain medication can only do so much: either it doesn't touch the pain, or it leaves me too mentally foggy to function.
How can I cope with the chronic physical pain?
It makes it really hard to enjoy activities, knowing that even if I'm fortunate enough to be low-pain right this minute, I will get a pain-payback 15 to 60 minutes after I stop the activity.
The more physically active I am, the more pain that I have, so sometimes it feels as though I'm being punished for being active and doing things.
and then there are the really bad pain days, when I get dehydrated because standing up to get a drink of water hurts too much...
I have an appointment with a psychologist who specialises in chronic pain management.
But that's in about two months (they have a long waiting list), and two months is a long time when you're in pain every day,
so in the meantime, I thought I would see what Ask Metafilter suggested...
Thank you in advance!
Just in case you don't know (since you don't mention it) the kind of resources you need to be exploring are called palliative care.
A relative of mine has had some relief in the past using biofeedback and meditation. The former she was referred to by her doctor, the latter was something she pursued independently.
You mention "pain medication" in general, but what exactly are you taking? There are many kinds of medication, some may work better than others, not all of them will have the same side effects.
posted by hermitosis at 8:40 AM on May 23, 2011 [2 favorites]
A relative of mine has had some relief in the past using biofeedback and meditation. The former she was referred to by her doctor, the latter was something she pursued independently.
You mention "pain medication" in general, but what exactly are you taking? There are many kinds of medication, some may work better than others, not all of them will have the same side effects.
posted by hermitosis at 8:40 AM on May 23, 2011 [2 favorites]
Jenette Fulda's book Chocolate and Vicodin is about dealing with chronic pain. Highly recommended.
posted by BlahLaLa at 9:11 AM on May 23, 2011 [1 favorite]
posted by BlahLaLa at 9:11 AM on May 23, 2011 [1 favorite]
I agree with hermitosis. You could give meditation a try. I like Jon Kabat-Zinn. Guided Mindfulness Meditation Series I and Series II.
www.mindfulnesscds.com. Or you can read one of his books. I like Full Catastrophe Living.
He has had patients like you, as described in the book I cited. It can't hurt to give it a try and it might help.
Good luck.
posted by PickeringPete at 10:21 AM on May 23, 2011 [1 favorite]
www.mindfulnesscds.com. Or you can read one of his books. I like Full Catastrophe Living.
He has had patients like you, as described in the book I cited. It can't hurt to give it a try and it might help.
Good luck.
posted by PickeringPete at 10:21 AM on May 23, 2011 [1 favorite]
I am sorry to hear about your pain, and I can certainly relate. I can't remember what its like not to be in pain.
I recently read The Pain Chronicles which I could really relate to as it was a narrative of living with pain as well as highly researched into the science of pain.
In terms of dealing with the mental/psychological aspects of pain, I have a hard time too. I tend to meditate or practice mindful meditation as it helps distract me from pain. I also depend heavily on medication unfortunately as without it I would probably be bed ridden or worse. I have severe nerve pain in my left leg and gabapentin helps. For my muscle spasms I use soma, and for the back (arthritis) narcotics as well as cannabis. In fact, cannabis really helps me with regards to ignoring my pain and allows me to focus on other things. Heat pads and knowing when to take it easy (knowing my limitation) helps a ton.
Sorry if I am rambling, but this hits close to home, and I wanted to throw in my 2 cents. I am in my mid twenties and have been dealing with chronic pain for over 10 years. Feel free to message me if you want to talk, or have some support or simply bitch as I find its helpful to know others are in the same boat as you and can relate. Take care!
posted by handbanana at 10:27 AM on May 23, 2011 [2 favorites]
I recently read The Pain Chronicles which I could really relate to as it was a narrative of living with pain as well as highly researched into the science of pain.
In terms of dealing with the mental/psychological aspects of pain, I have a hard time too. I tend to meditate or practice mindful meditation as it helps distract me from pain. I also depend heavily on medication unfortunately as without it I would probably be bed ridden or worse. I have severe nerve pain in my left leg and gabapentin helps. For my muscle spasms I use soma, and for the back (arthritis) narcotics as well as cannabis. In fact, cannabis really helps me with regards to ignoring my pain and allows me to focus on other things. Heat pads and knowing when to take it easy (knowing my limitation) helps a ton.
Sorry if I am rambling, but this hits close to home, and I wanted to throw in my 2 cents. I am in my mid twenties and have been dealing with chronic pain for over 10 years. Feel free to message me if you want to talk, or have some support or simply bitch as I find its helpful to know others are in the same boat as you and can relate. Take care!
posted by handbanana at 10:27 AM on May 23, 2011 [2 favorites]
Paula Kamen, who has chronic daily headache -- aka "a 15-year-long migraine" -- writes about chronic pain with a great deal of insight, humor and information in her book All In My Head. (At one point, she says, "I had explored every possible option [for treatment], at least once -- except colonic irrigation, Jews for Jesus, Scientology, nerve blocks to my spine -- and oh yeah, ayurvedic medicine.") You might find parallels to your experience in her writing.
She also presents a list of resources on her website, on both headaches in particular and chronic pain in general. (Like hermitosis' relative, Kamen has had success with Kabat-Zinn's mindfulness meditation techniques, for example.)
posted by virago at 12:25 PM on May 23, 2011
She also presents a list of resources on her website, on both headaches in particular and chronic pain in general. (Like hermitosis' relative, Kamen has had success with Kabat-Zinn's mindfulness meditation techniques, for example.)
posted by virago at 12:25 PM on May 23, 2011
If it is legal where you live, I would suggest medical marijuana. It isn't legal in my state at this time but I know that it has helped many people in our condition not just with pain but depression and it is gentle to the body. ..unlike pain medications and anti depressants. Perhaps a bit out there for you, but it does help in the most benign way.
posted by gypseefire at 1:00 PM on May 23, 2011 [4 favorites]
posted by gypseefire at 1:00 PM on May 23, 2011 [4 favorites]
Weed.
Weed.
Weed.
I have chronic pain. To exemplify, sometimes I wake up screaming with it.
Weed helps me:
Eat
Fuck
Sleep
Get to work
Concentrate.
Also, tramadol is a non-opiate thing that can also be good for pain.
Feel absolutely free to memail me.
posted by angrycat at 1:30 PM on May 23, 2011 [2 favorites]
Weed.
Weed.
I have chronic pain. To exemplify, sometimes I wake up screaming with it.
Weed helps me:
Eat
Fuck
Sleep
Get to work
Concentrate.
Also, tramadol is a non-opiate thing that can also be good for pain.
Feel absolutely free to memail me.
posted by angrycat at 1:30 PM on May 23, 2011 [2 favorites]
I would also suggest medical marijuana... whether or not it is legal where you are, frankly. The penalties for possession are usually light, and if you're minimally careful (i.e. never leave anything in plain sight, never smoke where someone might see you) smoking at home is pretty safe, anyway. You don't have to smoke it, either -- there are other ways to take it, as described in this thread and this one. If you ask around discreetly, chances are that you already have a sympathetic friend who can help you get some.
Other things that have helped me manage chronic pain from ankylosing spondylitis include exercise (it really sounds as if that might not help for you, but maybe something like water yoga would be gentle enough to be of long-term benefit without incurring severe pain paybacks?), meditation, diet change (a low-starch diet made a big difference for me; it may pay off to experiment by cutting out different things to see how your body reacts), and heat, especially hot baths.
Topical rubs like Icy Hot and Tiger Balm are also a big help to me, but it depends on what kind of pain you have -- they don't touch my pain directly, but they do relax the muscles around the joint, and that really makes a difference. At the very least, the sensation they cause might help distract you from your pain.
posted by vorfeed at 1:39 PM on May 23, 2011 [1 favorite]
Other things that have helped me manage chronic pain from ankylosing spondylitis include exercise (it really sounds as if that might not help for you, but maybe something like water yoga would be gentle enough to be of long-term benefit without incurring severe pain paybacks?), meditation, diet change (a low-starch diet made a big difference for me; it may pay off to experiment by cutting out different things to see how your body reacts), and heat, especially hot baths.
Topical rubs like Icy Hot and Tiger Balm are also a big help to me, but it depends on what kind of pain you have -- they don't touch my pain directly, but they do relax the muscles around the joint, and that really makes a difference. At the very least, the sensation they cause might help distract you from your pain.
posted by vorfeed at 1:39 PM on May 23, 2011 [1 favorite]
Get to a pain management clinic as well as a pain management psychologist; see a medical doctor. There are more options out there besides oral medications (topicals, injections, implants), and there may be oral meds you haven't tried.
Get with an occupational therapist. What they *do* is help you develop methods and pinpoint tools that can help you to function normally despite debilitating issues. They can help you determine what devices are out there that can help you.
In the meantime, look into devices and supportive tools that may help. Would a 4" memory foam mattress topper help, or a memory foam pillow, or down? Would a rolling walker help to get you standing up and moving from room to room? Would grab bars on the walls, by the toilet, by the sink be helpful?
Pain varies from person to person, so what works for one person might not be helpful to you, but think about each of the problems you're having; think what might make it easier to get past the problem. There may be a device intended for just that. Sometimes you can adapt a device that's meant for something else.
Definitely don't get dehydrated :) that can make pain even worse.
Good luck.
posted by galadriel at 2:03 PM on May 23, 2011
Get with an occupational therapist. What they *do* is help you develop methods and pinpoint tools that can help you to function normally despite debilitating issues. They can help you determine what devices are out there that can help you.
In the meantime, look into devices and supportive tools that may help. Would a 4" memory foam mattress topper help, or a memory foam pillow, or down? Would a rolling walker help to get you standing up and moving from room to room? Would grab bars on the walls, by the toilet, by the sink be helpful?
Pain varies from person to person, so what works for one person might not be helpful to you, but think about each of the problems you're having; think what might make it easier to get past the problem. There may be a device intended for just that. Sometimes you can adapt a device that's meant for something else.
Definitely don't get dehydrated :) that can make pain even worse.
Good luck.
posted by galadriel at 2:03 PM on May 23, 2011
I have dealt with episodes of chronic pain. Things that helped me: Taking my pain medication on schedule, whether I was in pain or not (this helped me "stay ahead" of the pain). Staying hydrated, and staying nourished. High calorie Ensure saw me through many a bad week. I would drink one and a glass of water first thing in the morning, no matter how terrible I felt, because it got my blood sugar up and some vitamins in me. Otherwise I would lose my appetite completely and feel depressed and cranky and yes, in more pain. So eating is essential. Don't freak out about your food groups--take a multivitamin, try to get some fiber (puree some sweet potatoes or squash or whatever) to keep your gut working, and make yourself choke down whatever you can: ice cream, yogurt, toast, pasta, mashed potatoes. Rice pudding has been my best friend many a time--I can enrich it with raisins and eggs and it actually becomes a decent meal.
Heating pads and ice help. If your pain is musculoskeletal, ask your doctor for a muscle relaxant. It'll knock you out a bit, but man, it will help.
Have you tried simple calisthenics or yoga? That will help you keep your muscle tone without wearing you out. Or swimming? Just treading water for ten minutes can do the trick.
Good lukc. I'll be checking back for other tips, too.
posted by thinkingwoman at 8:04 PM on May 23, 2011 [1 favorite]
Heating pads and ice help. If your pain is musculoskeletal, ask your doctor for a muscle relaxant. It'll knock you out a bit, but man, it will help.
Have you tried simple calisthenics or yoga? That will help you keep your muscle tone without wearing you out. Or swimming? Just treading water for ten minutes can do the trick.
Good lukc. I'll be checking back for other tips, too.
posted by thinkingwoman at 8:04 PM on May 23, 2011 [1 favorite]
I've lived with chronic pain (not dissimilar to your description) since November 2nd, 2005. Yes, I know the exact day, exact hour of when it started and very few moments since them have been painless.
Here are the things that keep me sane:
1. Pain meds. Serious ones. And a good pain care specialist to oversee said pain meds. I'm lucky to live next to one of the country's leading pain care clinics and to have a RN that believes me, trusts me, and listens when I tell her it's getting worse (as opposed to assuming I'm a drug seeker...that happened A LOT before I found her practice).
2. A job that is mentally engaging and keeps my mind on other people (teaching) helps a lot.
3. A supportive partner makes a huge difference, especially one who understands pain (as mine does, from personal experience). Good friends - ones who believe you, regardless of severity and frequency of complaint - are also massively helpful. So many people just assume that if they can't see something wrong with you, you're fine. I know a lot of chronic pain sufferers (myself included) that end up losing friends/relationships because people start out thinking "Oh, they're in pain! I will help/fix/etc. them!" and then when the pain goes on (and on), they gradually grow frustrated, lose interest, and drift away. Then the pain of that increases the physical pain.
4. Exercise, regular and gentle. Stretch. Heat/ice, but only if it helps. Regular ibuprofen (if you can tolerate it). Listen to your body but also know that sometimes, stretching/moving sounds like an awful prospect but is totally worth pushing through.
5. I know it's not the norm on metafilter, but I also think my faith has kept me from going insane. Memail me if you want the info/resources I have in that regard.
And last of all - just keep going. Anne Lamott talks about writing in these terms, but to me it describes the life of chronic pain really well - all you need to remember is to go "bird by bird." It's the idea that no matter how monumental task, all you need to do is take one small part at a time. Don't let the big picture overwhelm you. I don't think about whether this pain will last years anymore (that drove me nearly insane at the beginning) - I take it one day at a time...sometimes one MINUTE at a time.
Hang in there. Memail me anytime - I've been through it and I know how difficult it can be to make it through a day, let alone a month/year/lifetime in pain. It wears you down and can tear your life apart and sometimes just having someone to talk to about it who REALLY understands is the best thing EVER. Good luck.
posted by guster4lovers at 8:00 AM on May 24, 2011
Here are the things that keep me sane:
1. Pain meds. Serious ones. And a good pain care specialist to oversee said pain meds. I'm lucky to live next to one of the country's leading pain care clinics and to have a RN that believes me, trusts me, and listens when I tell her it's getting worse (as opposed to assuming I'm a drug seeker...that happened A LOT before I found her practice).
2. A job that is mentally engaging and keeps my mind on other people (teaching) helps a lot.
3. A supportive partner makes a huge difference, especially one who understands pain (as mine does, from personal experience). Good friends - ones who believe you, regardless of severity and frequency of complaint - are also massively helpful. So many people just assume that if they can't see something wrong with you, you're fine. I know a lot of chronic pain sufferers (myself included) that end up losing friends/relationships because people start out thinking "Oh, they're in pain! I will help/fix/etc. them!" and then when the pain goes on (and on), they gradually grow frustrated, lose interest, and drift away. Then the pain of that increases the physical pain.
4. Exercise, regular and gentle. Stretch. Heat/ice, but only if it helps. Regular ibuprofen (if you can tolerate it). Listen to your body but also know that sometimes, stretching/moving sounds like an awful prospect but is totally worth pushing through.
5. I know it's not the norm on metafilter, but I also think my faith has kept me from going insane. Memail me if you want the info/resources I have in that regard.
And last of all - just keep going. Anne Lamott talks about writing in these terms, but to me it describes the life of chronic pain really well - all you need to remember is to go "bird by bird." It's the idea that no matter how monumental task, all you need to do is take one small part at a time. Don't let the big picture overwhelm you. I don't think about whether this pain will last years anymore (that drove me nearly insane at the beginning) - I take it one day at a time...sometimes one MINUTE at a time.
Hang in there. Memail me anytime - I've been through it and I know how difficult it can be to make it through a day, let alone a month/year/lifetime in pain. It wears you down and can tear your life apart and sometimes just having someone to talk to about it who REALLY understands is the best thing EVER. Good luck.
posted by guster4lovers at 8:00 AM on May 24, 2011
I've lived with fibromyalgia and chronic fatigue for about 20 years, and I've had migraines for seven years. My pain isn't as bad as yours, though.
To second guster4lovers, you've got to have supportive people around you who accept the fact of your pain, just as they would accept that a person had a broken leg. Anyone who doesn't believe you, scratch him off your list of "people in my life."
It's incredibly easy and reasonably justified to slip into victim mentality with chronic pain. Chronic pain (and this is for the benefit of those reading who don't know) magnifies the normal little miseries of life a thousandfold. The toast just fell off the plate and onto the floor? For someone already having a terrible day just by living, that is not a minor inconvenience; it's an enormous drain on feeble and fading physical and emotional resources.
So I try (with varying degrees of success, depending on the day) to focus good and hard on what I can do. If there's an activity the pain lets you do, or an ability it hasn't sucked away, do that thing, do it well, and take pleasure in it. Fill your emotional reservoir as best you can so you've got a little something when the toast does fall.
And yeah, badger your doctor about meds until you get to the pain center.
posted by bryon at 9:14 AM on May 24, 2011 [1 favorite]
To second guster4lovers, you've got to have supportive people around you who accept the fact of your pain, just as they would accept that a person had a broken leg. Anyone who doesn't believe you, scratch him off your list of "people in my life."
It's incredibly easy and reasonably justified to slip into victim mentality with chronic pain. Chronic pain (and this is for the benefit of those reading who don't know) magnifies the normal little miseries of life a thousandfold. The toast just fell off the plate and onto the floor? For someone already having a terrible day just by living, that is not a minor inconvenience; it's an enormous drain on feeble and fading physical and emotional resources.
So I try (with varying degrees of success, depending on the day) to focus good and hard on what I can do. If there's an activity the pain lets you do, or an ability it hasn't sucked away, do that thing, do it well, and take pleasure in it. Fill your emotional reservoir as best you can so you've got a little something when the toast does fall.
And yeah, badger your doctor about meds until you get to the pain center.
posted by bryon at 9:14 AM on May 24, 2011 [1 favorite]
I don't have advice, but as the spouse of someone who has been in chronic pain for over two years, you have my sympathies.
posted by luckynerd at 11:14 AM on May 24, 2011
posted by luckynerd at 11:14 AM on May 24, 2011
I don't mean to thread-jack this, but bryon is right on about those "little things" that just suck your will to live. I've cried over SOOOOO many "little things" like rice spilling out as I measure it, a glass knocking over another glass and breaking, my bag catching a doorknob, someone cutting in front of me at the store, getting a paper cut, etc. It's frustration, and it's feeling out of control, which is what chronic pain really is - a total loss of control over your body. You can't "will" yourself better.
At those points where I feel absolute frustration and loss of control, I think about in LOST, where Jack tells Kate that when he sees something going wrong, he calmly counts to ten, and lets fear overwhelm him for those ten seconds. When he gets to one, he tells himself to stop the catastrophic thinking, "man up" and fix it. So I try that.
Celebrate your little successes, even if it's only "I stretched for one minute today and it didn't make me want to poke my eyes out with a stick!" Chronic pain can rob your life of joy, if you let it. You can't change the pain, but you can change how you react. When the pain first started, I became a pretty horrible person - I just was so angry, and frustrated and afraid that I let those feelings out on everyone. It's taken a long time to unlearn those reactions, and I can't claim that I've fully been successful with it. There's science behind the idea that it takes a shorter amount of time to create a habit than it does to break a habit.
Every time you get upset or frustrated, it can be an opportunity to take one step along that road towards dealing with things in an adult, mature way.
Take every opportunity to reward yourself for those small victories. Massages are great motivation for me. Or baking. Or a cup of coffee. Find those little things that make you feel like you're not letting the pain suck you into a vortex of fear, anger, and loneliness.
posted by guster4lovers at 11:59 AM on May 24, 2011 [1 favorite]
At those points where I feel absolute frustration and loss of control, I think about in LOST, where Jack tells Kate that when he sees something going wrong, he calmly counts to ten, and lets fear overwhelm him for those ten seconds. When he gets to one, he tells himself to stop the catastrophic thinking, "man up" and fix it. So I try that.
Celebrate your little successes, even if it's only "I stretched for one minute today and it didn't make me want to poke my eyes out with a stick!" Chronic pain can rob your life of joy, if you let it. You can't change the pain, but you can change how you react. When the pain first started, I became a pretty horrible person - I just was so angry, and frustrated and afraid that I let those feelings out on everyone. It's taken a long time to unlearn those reactions, and I can't claim that I've fully been successful with it. There's science behind the idea that it takes a shorter amount of time to create a habit than it does to break a habit.
Every time you get upset or frustrated, it can be an opportunity to take one step along that road towards dealing with things in an adult, mature way.
Take every opportunity to reward yourself for those small victories. Massages are great motivation for me. Or baking. Or a cup of coffee. Find those little things that make you feel like you're not letting the pain suck you into a vortex of fear, anger, and loneliness.
posted by guster4lovers at 11:59 AM on May 24, 2011 [1 favorite]
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I would also suggest seeking out online communities: there are sites such as MenWithFibro and the Chronic Pain Association that can offer some support and suggestions on how to cope.
posted by baggers at 8:38 AM on May 23, 2011