How to deal with chronic pain?
April 20, 2012 3:18 PM
How do you deal psychologically with chronic pain? Practical tips for daily living welcomed as well.
The basics: I have horrible chronic neck pain. I've seen an internist, an orthopedist, an orthopedic surgeon and a neurosurgeon in the last few months. So far there are no concrete answers. X-rays show nothing; I'm waiting on the results of an MRI. I have a variety of drugs at my disposal, as well as ice packs and heating pads and memory foam pillows. I'm not looking for specific medical suggestions; my case is pretty complicated due to birth defects.
What I'm looking for is how to deal emotionally with the pain. I work (part time, desk job that doesn't require a huge amount of mental energy) but cannot do much else at the moment. I spend my days off with Instapaper and Netflix and Metafilter to distract myself. I cannot fucking sleep unless I take copious amounts of painkillers, and sometimes not even then, and I'm supposed to wear a CPAP, which makes the not-sleeping even worse. It's a catch-22, if I don't wear the CPAP, I stop breathing (a lot), but I can usually sleep. If I do wear it, I'm almost guaranteed not to sleep (the straps hurt my neck; I've tried multiple masks and arrangements but to hold the mask on tightly enough to prevent leakage, the strap has to go around my neck). Last night I woke up every half hour and gave up about 3:30 am.
My house is a disaster and we're ordering take out because the kitchen is too messy to cook. I can drive, but can't go grocery shopping because I can't really lift much. The laundry is piling up. My husband is helping as much as he can, but he's got his own problem (probably torn rotator cuff) and is usually in bed if he's not working. A housekeeper would stretch our finances but I'm not opposed to the idea. I don't know how to find one - no one I've asked has any suggestions. Will they do everything including dishes and laundry? We need triage, I don't really care about stuff like vacuuming at this point.
Emotionally, the worst is wondering if this is ever going to end and not being able to enjoy anything right now. Also, despite the birth defects, I've never seen myself as disabled before. How do I deal?
Regular readers can probably guess who I am and you're welcome to contact me via other means; I just don't want possible future employers knowing my medical history.
The basics: I have horrible chronic neck pain. I've seen an internist, an orthopedist, an orthopedic surgeon and a neurosurgeon in the last few months. So far there are no concrete answers. X-rays show nothing; I'm waiting on the results of an MRI. I have a variety of drugs at my disposal, as well as ice packs and heating pads and memory foam pillows. I'm not looking for specific medical suggestions; my case is pretty complicated due to birth defects.
What I'm looking for is how to deal emotionally with the pain. I work (part time, desk job that doesn't require a huge amount of mental energy) but cannot do much else at the moment. I spend my days off with Instapaper and Netflix and Metafilter to distract myself. I cannot fucking sleep unless I take copious amounts of painkillers, and sometimes not even then, and I'm supposed to wear a CPAP, which makes the not-sleeping even worse. It's a catch-22, if I don't wear the CPAP, I stop breathing (a lot), but I can usually sleep. If I do wear it, I'm almost guaranteed not to sleep (the straps hurt my neck; I've tried multiple masks and arrangements but to hold the mask on tightly enough to prevent leakage, the strap has to go around my neck). Last night I woke up every half hour and gave up about 3:30 am.
My house is a disaster and we're ordering take out because the kitchen is too messy to cook. I can drive, but can't go grocery shopping because I can't really lift much. The laundry is piling up. My husband is helping as much as he can, but he's got his own problem (probably torn rotator cuff) and is usually in bed if he's not working. A housekeeper would stretch our finances but I'm not opposed to the idea. I don't know how to find one - no one I've asked has any suggestions. Will they do everything including dishes and laundry? We need triage, I don't really care about stuff like vacuuming at this point.
Emotionally, the worst is wondering if this is ever going to end and not being able to enjoy anything right now. Also, despite the birth defects, I've never seen myself as disabled before. How do I deal?
Regular readers can probably guess who I am and you're welcome to contact me via other means; I just don't want possible future employers knowing my medical history.
Also came in to suggest Jon Kabat-Zinn. Good luck, it sounds awful.
posted by penguin pie at 4:14 PM on April 20, 2012
posted by penguin pie at 4:14 PM on April 20, 2012
First you need to take a deep breath. If you can afford a housekeeper- get one. You need to have your physical space clean so you can think. Go on Craigslist or just look up something like Merry Maids. They will do what you ask them to do as far as cleaning goes.
I have had chronic pain since I was a teen and have flareups of acute pain. I know that my depression at the mess in the house just makes it worse. I don't mean to sound like Sally Sunshine, but it can get better.
posted by Isadorady at 4:18 PM on April 20, 2012
I have had chronic pain since I was a teen and have flareups of acute pain. I know that my depression at the mess in the house just makes it worse. I don't mean to sound like Sally Sunshine, but it can get better.
posted by Isadorady at 4:18 PM on April 20, 2012
Absolutely get a housekeeper if you can afford it. Go for someone who runs their own business, rather than a service (housecleaning services are notorious for treating their employees badly). They will definitely do dishes and laundry, although you may need to explicitly negotiate it. I've found housecleaners by asking friends; if you've had no luck with that (which it sounds like is the case), check Craigslist and Yelp.
Any decent grocery store should also give you assistance with your bags. Do you have a friend or neighbor who can help you carry things in from the car? (Alternatively, ask the bagger to keep the bags as light as possible and make a bunch of trips when you get home.)
And my sympathies. Chronic pain is horrible.
posted by asterix at 4:20 PM on April 20, 2012
Any decent grocery store should also give you assistance with your bags. Do you have a friend or neighbor who can help you carry things in from the car? (Alternatively, ask the bagger to keep the bags as light as possible and make a bunch of trips when you get home.)
And my sympathies. Chronic pain is horrible.
posted by asterix at 4:20 PM on April 20, 2012
It's not available in all areas, but depending upon where you live, you may be able to order groceries and then go pick them up at the local store. I use this service often; order online, choose a pickup day/time, drive up to the curb at the store and an employee loads them in your car and swipes your debit card. No need to even leave your car! At my local store the service costs $4.95 and that's a bargain to me. There are two different chains who offer this service in my area, which I found by checking their websites.
As a fellow chronic pain/illness sufferer, good luck and I hope you find some answers soon.
posted by SweetTeaAndABiscuit at 4:44 PM on April 20, 2012
As a fellow chronic pain/illness sufferer, good luck and I hope you find some answers soon.
posted by SweetTeaAndABiscuit at 4:44 PM on April 20, 2012
I know that sometimes SSRIs are prescribed to help with chronic pain. I'm not sure of the details of why, but I assume it's at least partly because they help with the psychological effects of it. My husband has had chronic knee pain from arthritis that started when he was 18(!), and he is now 41. The only period of time during which the pain did not cause psychological effects that were obvious to an outsider was the two years when he was on an SSRI (prescribed for other reasons).
posted by lollusc at 4:44 PM on April 20, 2012
posted by lollusc at 4:44 PM on April 20, 2012
Emotionally -- meditation. If you can find that quiet spot within, even in the heart of that pain, it's a way of detaching from it, and not just physically. Or maybe not even physically at all, just that if emotionally detached from it allows some sort of release. I'm finding it's hard to describe here, this maybe reads woo woo but that's not what my experience of it was.
Sending compassion from here -- ongoing pain just tears me down to nothing, wears on me. I've been really lucky, haven't had much of it in my life, a huge spot a couple of years ago, lasted a few months (I injured myself pushing a damn yoga pose too far if you can believe that), it forced me to take to the big guns, heavy pain meds, a danger for me as I've a history of liking that sort of thing too much. So on top of everything else I also had *that* to be alert to. But I had to take the stuff, even on ice this pain tore me to shreds, it made me cry. Unreal.
My CPAP is in the closet. I *had* to wear it when I was with Kelly -- I don't really believe it but I've been told my snoring raises the roof, Kelly has sharp elbows and was not afraid to poke me, the big meanie -- but it's pretty much been in the closet since. I've been told that I won't get deep dream sleep if I don't wear it but it seems I do dream and I don't give a damn anyways; unless I've someone around to enforce this thing it's always off in twenty minutes, I'd have to staple the thing to my head. You've got bigger things to deal with, or so it seems to me; chunk it into the closet.
I know you are looking for emotional clues only so I won't go far here but I feel that I have to say it -- ice. It was my biggest friend, I lived on it, even gave my upper back an ice burn from thoughtlessly not having a shirt on -- I just had to be on it all the damn time, no way round it. I found an amazing chiropractor here who helped me and that was/is great, but ice carried me day to day (hour to hour, truth be told.)
I'm sorry you're in this, I truly hope you can get to the bottom of it, and find some ease in the meantime by using whatever you can to get through.
posted by dancestoblue at 5:37 PM on April 20, 2012
Sending compassion from here -- ongoing pain just tears me down to nothing, wears on me. I've been really lucky, haven't had much of it in my life, a huge spot a couple of years ago, lasted a few months (I injured myself pushing a damn yoga pose too far if you can believe that), it forced me to take to the big guns, heavy pain meds, a danger for me as I've a history of liking that sort of thing too much. So on top of everything else I also had *that* to be alert to. But I had to take the stuff, even on ice this pain tore me to shreds, it made me cry. Unreal.
My CPAP is in the closet. I *had* to wear it when I was with Kelly -- I don't really believe it but I've been told my snoring raises the roof, Kelly has sharp elbows and was not afraid to poke me, the big meanie -- but it's pretty much been in the closet since. I've been told that I won't get deep dream sleep if I don't wear it but it seems I do dream and I don't give a damn anyways; unless I've someone around to enforce this thing it's always off in twenty minutes, I'd have to staple the thing to my head. You've got bigger things to deal with, or so it seems to me; chunk it into the closet.
I know you are looking for emotional clues only so I won't go far here but I feel that I have to say it -- ice. It was my biggest friend, I lived on it, even gave my upper back an ice burn from thoughtlessly not having a shirt on -- I just had to be on it all the damn time, no way round it. I found an amazing chiropractor here who helped me and that was/is great, but ice carried me day to day (hour to hour, truth be told.)
I'm sorry you're in this, I truly hope you can get to the bottom of it, and find some ease in the meantime by using whatever you can to get through.
posted by dancestoblue at 5:37 PM on April 20, 2012
I've been dealing with chronic pain for about 5 years now [not as bad as yours, but for the first couple of years sleep was definitely an issue]. Same deal with the causes being a mystery and close to zero percent success at finding medication to help past getting me mobile.
I have dealt with it, psychologically, by doing as many amazing things as I can. Since my pain is fairly constant, I could be sitting at home in pain or else, say, spending a few weeks floating down the Yukon river. It hurts to carry things, so I sometimes choose to carry things for my wife which is totally worth it if it makes her day a little bit easier.
I do foolish things that hurt because I can, and it is much more emotionally satisfying to be in more pain doing something I want to do than to be in less pain doing something mundane.
I know it sounds a bit ridiculous, or like I am masochistic, but it is one of the only solid pieces of advice that I can give you.
posted by Acari at 5:43 PM on April 20, 2012
I have dealt with it, psychologically, by doing as many amazing things as I can. Since my pain is fairly constant, I could be sitting at home in pain or else, say, spending a few weeks floating down the Yukon river. It hurts to carry things, so I sometimes choose to carry things for my wife which is totally worth it if it makes her day a little bit easier.
I do foolish things that hurt because I can, and it is much more emotionally satisfying to be in more pain doing something I want to do than to be in less pain doing something mundane.
I know it sounds a bit ridiculous, or like I am masochistic, but it is one of the only solid pieces of advice that I can give you.
posted by Acari at 5:43 PM on April 20, 2012
One option that works for a subset of people is biofeedback for chronic pain.
More information from American Pain Society:
Biofeedback as an Adjunctive Treatment Modality in Pain Management
I realize that this looks like attempting to control the pain rather than find a psychological way of dealing with the pain, but biofeedback is fairly unique in that there is some overlap between the two, so I feel that this is on topic.
Off topic: I hope I'm not out of line here, but I don't think being in chronic pain in this situation is acceptable. I think you should pressure your physician to find a way to physically manage the pain, as it is impacting your health through sleep disturbance. This is not just an emotional issue, and so a physical pain management solution must be found.
posted by VikingSword at 5:45 PM on April 20, 2012
More information from American Pain Society:
Biofeedback as an Adjunctive Treatment Modality in Pain Management
I realize that this looks like attempting to control the pain rather than find a psychological way of dealing with the pain, but biofeedback is fairly unique in that there is some overlap between the two, so I feel that this is on topic.
Off topic: I hope I'm not out of line here, but I don't think being in chronic pain in this situation is acceptable. I think you should pressure your physician to find a way to physically manage the pain, as it is impacting your health through sleep disturbance. This is not just an emotional issue, and so a physical pain management solution must be found.
posted by VikingSword at 5:45 PM on April 20, 2012
Oh OP, I really feel you. There isolation you can feel with chronic pain is nearly as bad as the pain itself, I find. The fear that no one believes you, no one understands what you're going through, it's very difficult. My situation was somewhat different to yours but here is what I have learnt from a chronic condition and the pain that went with it.
1) Priorities. If you're not already doing this, just forget about the small stuff. When your reserves are so devoted to dealing with pain, you don't want to waste anything precious on things that are not absolutely essential. That includes everything from cleaning to schedule management etc.
2) Help. Getting a housekeeper is a great idea if you can afford, but also don't be afraid to lean on your broader support network. Don't lean on one person - family or friend - too heavily, but don't be afraid to ask for assistance if you can get it. I think because pain makes you so inward-looking, it's easy to forget there are lots of things other can do to help you, leaving you with the energy to focus on coping and managing your pain. People are happy to help, I found, if you can get them to appreciate the gravity of your situation. Some people will comprehend this faster than others; others will never understand at all.
3) Pain management. Bit controversial, this, but in my experience: Don't be afraid to take whatever you need to take, or do whatever you need to do, to help ease your pain. When I was grappling with chronic pain, I found some people were very judgmental about painkiller use or my refusal (in my case) to eat certain foods or do certain activities. Nothing - especially with the pain killers - inspires rage and scorn in me so quickly. Fuck that noise. There are people that for whatever reason are incapable of understanding what chronic pain is, and means. I envy their ignorance but don't let it define you. If you need to take painkillers, take them. If acupuncture helps, make like a pincushion. Do whatever works, and don't feel guilty about any of it. By the same token, don't OD on medications; the dosage reccs are there for a reason, and paracetamol in particular has a notoriously low ceiling effect, where pain reduction stops but toxicity continues to increase.
4) Distraction. The brain is a wonderfully plastic thing, and in my experience distraction can be as effective as most pain medications. When I was going through a bad stage, I felt at times that I was little more than a sensation sponge. This can take the form of many things. It might be massage (doesn't have to be in the effected area, this is distraction not remedial), dvds, books, podcasts etc). Something I have found incredibly helpful was computer games. I'm not much of a gamer to speak of in "real" life, but when I'm in chronic pain, I found a certain type of game provided a level of distraction that was unmatched by anything else. I couldn't concentrate enough for books, and movies weren't always distracting *enough*. Games - particularly ones with a strong storyline - kept me engaged and active, without requiring too much concentration. I also rely heavily on podcasts at night to help when I've decided I'm going to try sleeping. Even if I couldn't sleep, at least it was more interesting then rocking in the bed moaning.
Anyway, that's my potted version of what worked for me. You have my deepest sympathies. When you have chronic pain, it feels like you're the citizen of another country - another world at times. Just a shade or a ghost wandering a radically different place compared to others. You're not alone OP. Hugs to you.
posted by smoke at 6:02 PM on April 20, 2012
1) Priorities. If you're not already doing this, just forget about the small stuff. When your reserves are so devoted to dealing with pain, you don't want to waste anything precious on things that are not absolutely essential. That includes everything from cleaning to schedule management etc.
2) Help. Getting a housekeeper is a great idea if you can afford, but also don't be afraid to lean on your broader support network. Don't lean on one person - family or friend - too heavily, but don't be afraid to ask for assistance if you can get it. I think because pain makes you so inward-looking, it's easy to forget there are lots of things other can do to help you, leaving you with the energy to focus on coping and managing your pain. People are happy to help, I found, if you can get them to appreciate the gravity of your situation. Some people will comprehend this faster than others; others will never understand at all.
3) Pain management. Bit controversial, this, but in my experience: Don't be afraid to take whatever you need to take, or do whatever you need to do, to help ease your pain. When I was grappling with chronic pain, I found some people were very judgmental about painkiller use or my refusal (in my case) to eat certain foods or do certain activities. Nothing - especially with the pain killers - inspires rage and scorn in me so quickly. Fuck that noise. There are people that for whatever reason are incapable of understanding what chronic pain is, and means. I envy their ignorance but don't let it define you. If you need to take painkillers, take them. If acupuncture helps, make like a pincushion. Do whatever works, and don't feel guilty about any of it. By the same token, don't OD on medications; the dosage reccs are there for a reason, and paracetamol in particular has a notoriously low ceiling effect, where pain reduction stops but toxicity continues to increase.
4) Distraction. The brain is a wonderfully plastic thing, and in my experience distraction can be as effective as most pain medications. When I was going through a bad stage, I felt at times that I was little more than a sensation sponge. This can take the form of many things. It might be massage (doesn't have to be in the effected area, this is distraction not remedial), dvds, books, podcasts etc). Something I have found incredibly helpful was computer games. I'm not much of a gamer to speak of in "real" life, but when I'm in chronic pain, I found a certain type of game provided a level of distraction that was unmatched by anything else. I couldn't concentrate enough for books, and movies weren't always distracting *enough*. Games - particularly ones with a strong storyline - kept me engaged and active, without requiring too much concentration. I also rely heavily on podcasts at night to help when I've decided I'm going to try sleeping. Even if I couldn't sleep, at least it was more interesting then rocking in the bed moaning.
Anyway, that's my potted version of what worked for me. You have my deepest sympathies. When you have chronic pain, it feels like you're the citizen of another country - another world at times. Just a shade or a ghost wandering a radically different place compared to others. You're not alone OP. Hugs to you.
posted by smoke at 6:02 PM on April 20, 2012
Definitely check out Kabat-Zinn, and you might be able to find classes on mindfulness meditation for people with chronic illness/pain (which is what his book is based on).
It sounds like hiring a maid would really help you. Ask friends/family/coworkers/Facebook for recommendations. A maid will pretty much do whatever you ask for - dishes, laundry, etc. Also some grocery stores have delivery services, I know Safeway does because my mom (who has a chronic illness) uses it and has been very happy.
It sounds like you're depressed/anxious, which is understandable given your situation. Have you thought about talking to a counselor or going on antidepressants/antianxiety meds?
posted by radioamy at 6:14 PM on April 20, 2012
It sounds like hiring a maid would really help you. Ask friends/family/coworkers/Facebook for recommendations. A maid will pretty much do whatever you ask for - dishes, laundry, etc. Also some grocery stores have delivery services, I know Safeway does because my mom (who has a chronic illness) uses it and has been very happy.
It sounds like you're depressed/anxious, which is understandable given your situation. Have you thought about talking to a counselor or going on antidepressants/antianxiety meds?
posted by radioamy at 6:14 PM on April 20, 2012
One thing my dad (a doctor) advised me about when I was going through a prolonged period of pain (not chronic, but it lasted for months) was that there is no extra credit for hurting more. Take your meds, and take them on a regular schedule, whether you think you need it or not. What you want to do is get ahead of the pain and stay ahead of it. Don't take more or take it more often--if the dosage isn't working for you, talk to your doctor.
Get a housekeeper. You need the help--don't be ashamed to get it.
I'm really sorry you are going through this. It is so frustrating to have pain and no diagnosis. I hope you get some answers--or at least some relief--soon.
posted by elizeh at 6:37 PM on April 20, 2012
Get a housekeeper. You need the help--don't be ashamed to get it.
I'm really sorry you are going through this. It is so frustrating to have pain and no diagnosis. I hope you get some answers--or at least some relief--soon.
posted by elizeh at 6:37 PM on April 20, 2012
if you can concentrate and read through your pain, i recommend melanie thernstrom's book the pain chronicles. it's not self-help, but i found it really useful when i was experiencing chronic pain (goodreads review i wrote at the time). it helped me understand just how and why chronic pain is THE PITS, which was very comforting and validating. it also helped give me some perspective on how and why there often are no concrete answers for this kind of thing, no matter how good your doctors are or how hard they try (but also, how hard it is to get good medical help to begin with). all in all, it really grounded me.
posted by nevers at 6:48 PM on April 20, 2012
posted by nevers at 6:48 PM on April 20, 2012
So sorry -- fully empathise; it sucks, and your house goes to hell and your life feels chaotic and, oh, man. It's not an easy way to live.
I went for a type of treatment for my own physical pain problems today for the first time, and sat with the intake form and circled 6s, 7s, 8s for "rate out of 10 how bad the pain is, how much it affects this part of your life, how much it etc etc." Then there was "affects quality of life?" and I circled "2."
Because...it's just pain. I do whine sometimes -- I am not quite middle-aged and I have a handicapped parking permit because my hips cripple me on some days; delightful -- but, it's just pain. There is no chance at all of this orphaning my child. I'm not even going to lose a part of my body. But mostly, it's totally non-lethal so I am extremely grateful that my particular health problems have that one critical limitation. If I was struggling with something that had even a remote chance of killing me, I am sure I would be shedding a lot of tears over it. I'd be terrified. I love my life, I have a small child who needs me; it would be awful. But this! Meh, so my house is messy and I live my life a little more slowly sometimes -- that's okay. Meanwhile, onwards with tinkering with medications and therapies.
"It won't kill you" may sound like cold comfort, but it is an approach that works very well for me.
I also try to do stuff that I can do, for what sense that makes. Like, I'm limited in what sort of volunteer work I can do -- but it doesn't hurt me to sew, so I now volunteer to take in snowsuits with problems for the local Children's Aid and stain-remove and mend. I try to take care to not overwork myself or end up too busy, but staying as busy as possible is helpful. (And here I realise I sound like somebody who is perhaps quite elderly -- which is not such a bad thing, as there are lessons there and you can pick up tips from scrutinising seniors. Think of the happier older folk you know. They probably have stuff going on -- commitments that give them a lot of things to mark down on their calendars, plus they are doing things like gentle exercises, and loving on a pet, and...yeah. When in chronic pain, look at your happiest oldest relatives/friends, because there's probably some pain going on there and some good life management too)
posted by kmennie at 8:03 PM on April 20, 2012
I went for a type of treatment for my own physical pain problems today for the first time, and sat with the intake form and circled 6s, 7s, 8s for "rate out of 10 how bad the pain is, how much it affects this part of your life, how much it etc etc." Then there was "affects quality of life?" and I circled "2."
Because...it's just pain. I do whine sometimes -- I am not quite middle-aged and I have a handicapped parking permit because my hips cripple me on some days; delightful -- but, it's just pain. There is no chance at all of this orphaning my child. I'm not even going to lose a part of my body. But mostly, it's totally non-lethal so I am extremely grateful that my particular health problems have that one critical limitation. If I was struggling with something that had even a remote chance of killing me, I am sure I would be shedding a lot of tears over it. I'd be terrified. I love my life, I have a small child who needs me; it would be awful. But this! Meh, so my house is messy and I live my life a little more slowly sometimes -- that's okay. Meanwhile, onwards with tinkering with medications and therapies.
"It won't kill you" may sound like cold comfort, but it is an approach that works very well for me.
I also try to do stuff that I can do, for what sense that makes. Like, I'm limited in what sort of volunteer work I can do -- but it doesn't hurt me to sew, so I now volunteer to take in snowsuits with problems for the local Children's Aid and stain-remove and mend. I try to take care to not overwork myself or end up too busy, but staying as busy as possible is helpful. (And here I realise I sound like somebody who is perhaps quite elderly -- which is not such a bad thing, as there are lessons there and you can pick up tips from scrutinising seniors. Think of the happier older folk you know. They probably have stuff going on -- commitments that give them a lot of things to mark down on their calendars, plus they are doing things like gentle exercises, and loving on a pet, and...yeah. When in chronic pain, look at your happiest oldest relatives/friends, because there's probably some pain going on there and some good life management too)
posted by kmennie at 8:03 PM on April 20, 2012
I can drive, but can't go grocery shopping because I can't really lift much.
My grocery store has mobility assistants and aids for people with disabilities. They will happily loan you a mobility cart and a person to lift things off shelves, take you through checkout, bag your items and put them in your car. Find out if this service is available to you and then use it if it is! I have, twice, and it was a lifesaver.
posted by DarlingBri at 8:18 PM on April 20, 2012
My grocery store has mobility assistants and aids for people with disabilities. They will happily loan you a mobility cart and a person to lift things off shelves, take you through checkout, bag your items and put them in your car. Find out if this service is available to you and then use it if it is! I have, twice, and it was a lifesaver.
posted by DarlingBri at 8:18 PM on April 20, 2012
Any decent grocery store should also give you assistance with your bags. Do you have a friend or neighbor who can help you carry things in from the car? (Alternatively, ask the bagger to keep the bags as light as possible and make a bunch of trips when you get home.)
Also, you might look into getting something like this folding grocery cart. My husband loves ours, as carrying the groceries in from the car sometimes hurts his back.
Alternatively, you might think about trying Peapod if you are in an area they service. You place your order online and they will bring everything right inside your home.
posted by Serene Empress Dork at 8:46 PM on April 20, 2012
Also, you might look into getting something like this folding grocery cart. My husband loves ours, as carrying the groceries in from the car sometimes hurts his back.
Alternatively, you might think about trying Peapod if you are in an area they service. You place your order online and they will bring everything right inside your home.
posted by Serene Empress Dork at 8:46 PM on April 20, 2012
Can you see a physical therapist? This is as much a psychological suggestion as medical. I felt much more in control after seeing a pt because she gave me specific, practical things to do to cope with and not exacerbate my back pain. Even though the pain didn't get better (as first) it made me feel so much better that I had a plan to deal with it. Massage ended up working wonders too.
posted by yarly at 9:10 PM on April 20, 2012
posted by yarly at 9:10 PM on April 20, 2012
Also ... I recently read about an alternative to cpap - little valve thingies you stick in your nose, much more comfortable.
posted by yarly at 9:13 PM on April 20, 2012
posted by yarly at 9:13 PM on April 20, 2012
I wanted to come back with another bit of advice that helped, that I didn't mention before. It's important to advocate for yourself, but focus on relief rather than a diagnosis. If the MRI is clear, see if you can get a referral for physical therapy and a pain clinic. I also second the above advice to talk to a therapist.
I know you didn't ask for medical advice, but here's something that helped me, and I don't know why: When I was going through my unexplained facial pain, it would almost completely disappear when I took an Ambien at night. My theory (I am not a doctor) is that it suppressed the part of my brain that was misfiring, and in fact, antiseizure medication and an antidepressant did end up helping more than anything else. Since the pain is interfering with your ability to sleep, it is completely appropriate to ask for a prescription sleep aid.
Good luck to you. My pain was in my trigeminal nerve--basically I felt like I had an exposed nerve in all the teeth on the left side of my face, my left cheekbone, temple, sinuses, and eye, for months. It was really awful. You really do just pare your life down to the bare minimum. I hope you get some relief soon. Hang in there, and ask for all the help you need.
posted by elizeh at 11:06 PM on April 20, 2012
I know you didn't ask for medical advice, but here's something that helped me, and I don't know why: When I was going through my unexplained facial pain, it would almost completely disappear when I took an Ambien at night. My theory (I am not a doctor) is that it suppressed the part of my brain that was misfiring, and in fact, antiseizure medication and an antidepressant did end up helping more than anything else. Since the pain is interfering with your ability to sleep, it is completely appropriate to ask for a prescription sleep aid.
Good luck to you. My pain was in my trigeminal nerve--basically I felt like I had an exposed nerve in all the teeth on the left side of my face, my left cheekbone, temple, sinuses, and eye, for months. It was really awful. You really do just pare your life down to the bare minimum. I hope you get some relief soon. Hang in there, and ask for all the help you need.
posted by elizeh at 11:06 PM on April 20, 2012
I have been trying to cope with chronic, debilitating near-daily migraine pain for several years now. It is really, really hard, and you have by deepest sympathies. I have reached the edge of despair numerous times over the years and a sort of desperation has creeped into my life. I'll tell you the things that have helped me:
- I found an online community for people with my same condition. Sometimes when I'm home in bed (again) because I can't do anything else, I read and post on these message boards and it makes me feel less alone.
- I take the best possible care of my health outside of the chronic pain. I stay well-hydrated, sleep enough and eat really healthy foods. I think it helps to know the rest of your body is in good condition.
- I started a regular yoga practice. I go religiously, pretty much every single day. Some days I am in so much pain that just opening a drawer is excruciating, but I still force myself to go. The thing is, it is a nice vacation for my mind, and I have NEVER once left in more pain than I was already in. More than 90% of the time I actually get a brief reprieve from the pain, and it makes it easier to face the next day.
- I have decided that my messy house is actually a symptom of my disease. If someone were to ask my what my symptoms were, I'd say "seeing flashing lights, nausea and vomiting, excruciating head and neck pain, a messy house, a short temper...." you get the idea. Cut yourself a break.
posted by corn_bread at 7:10 AM on April 21, 2012
- I found an online community for people with my same condition. Sometimes when I'm home in bed (again) because I can't do anything else, I read and post on these message boards and it makes me feel less alone.
- I take the best possible care of my health outside of the chronic pain. I stay well-hydrated, sleep enough and eat really healthy foods. I think it helps to know the rest of your body is in good condition.
- I started a regular yoga practice. I go religiously, pretty much every single day. Some days I am in so much pain that just opening a drawer is excruciating, but I still force myself to go. The thing is, it is a nice vacation for my mind, and I have NEVER once left in more pain than I was already in. More than 90% of the time I actually get a brief reprieve from the pain, and it makes it easier to face the next day.
- I have decided that my messy house is actually a symptom of my disease. If someone were to ask my what my symptoms were, I'd say "seeing flashing lights, nausea and vomiting, excruciating head and neck pain, a messy house, a short temper...." you get the idea. Cut yourself a break.
posted by corn_bread at 7:10 AM on April 21, 2012
Make the most of being in the modern world, where we have other tools besides meditation. (I'm sorry, the idea made me laugh out loud -- meditation is not going to sort out the actualities of my situation nor yours, I imagine. How does meditating clean the kitchen floor if it is beyond your physical capabilities?)
Take the pain medications on a schedule to get a head start on the bad bits. Get a referral to a specialist pain clinic. Talk to them about suitable sleep aids.
For housekeeping I prefer the approach of getting a team in to blitz the place and then letting it quietly deteriorate again. This seems easier than the hassle of finding a suitable housekeeper and maintaining a relationship with them (though if you can find a good one through the recommendation of a friend, it may be different.) Family have tamed my kitchen for me, but that deteriorates fast -- I am glad I am not the only one!
I have just made another step into the world of formal severe disability. "What me? I will be fine in a little while." (Except that I know that long-term I won't.) I guess I am now seeing the importance of the distinction between "being disabled" and being a person with a disability. I don't know how one copes. I think one step at a time, and trying to keep an eye on the wider picture. Starting to use a wheelchair is not so terrible when i look at it as a way to keep doing the things I want to do.
I have found it good to just let go of things I cannot possibly manage. Acknowledging that I really am sick helps. Don't have unrealistic ideas of what you "should" achieve. I am so grateful for help that I think I have learned to accept it gracefully. I am touched by how many people are willing to do things.
I am not sure why I hate the term "bucket list" so much, especially as I do enjoy prioritizing the major things I would like to do when my health gets a little better. Looking at the distant horizon helps with the uncertainty of what i will be able to do tomorrow.
And if things will never get better? I am hoping for a sunny upland before the final slide, and maybe quite a lot of pootling around in only medium shadows, but it may not happen. Well, I assume that at least I will improve at coping with limitations. When I got the terminal diagnosis, the hospital put me (just I think because they were crowded, not by design) with a group of women in their 80s and 90s. I could hardly wail "I am going to die" to them, could I? I would not have believed it in my healthy past, but knowing that there are other people going through the same thing, and many others suffering more, does comfort me. This thing is doable!
posted by Idcoytco at 7:48 AM on April 21, 2012
Take the pain medications on a schedule to get a head start on the bad bits. Get a referral to a specialist pain clinic. Talk to them about suitable sleep aids.
For housekeeping I prefer the approach of getting a team in to blitz the place and then letting it quietly deteriorate again. This seems easier than the hassle of finding a suitable housekeeper and maintaining a relationship with them (though if you can find a good one through the recommendation of a friend, it may be different.) Family have tamed my kitchen for me, but that deteriorates fast -- I am glad I am not the only one!
I have just made another step into the world of formal severe disability. "What me? I will be fine in a little while." (Except that I know that long-term I won't.) I guess I am now seeing the importance of the distinction between "being disabled" and being a person with a disability. I don't know how one copes. I think one step at a time, and trying to keep an eye on the wider picture. Starting to use a wheelchair is not so terrible when i look at it as a way to keep doing the things I want to do.
I have found it good to just let go of things I cannot possibly manage. Acknowledging that I really am sick helps. Don't have unrealistic ideas of what you "should" achieve. I am so grateful for help that I think I have learned to accept it gracefully. I am touched by how many people are willing to do things.
I am not sure why I hate the term "bucket list" so much, especially as I do enjoy prioritizing the major things I would like to do when my health gets a little better. Looking at the distant horizon helps with the uncertainty of what i will be able to do tomorrow.
And if things will never get better? I am hoping for a sunny upland before the final slide, and maybe quite a lot of pootling around in only medium shadows, but it may not happen. Well, I assume that at least I will improve at coping with limitations. When I got the terminal diagnosis, the hospital put me (just I think because they were crowded, not by design) with a group of women in their 80s and 90s. I could hardly wail "I am going to die" to them, could I? I would not have believed it in my healthy past, but knowing that there are other people going through the same thing, and many others suffering more, does comfort me. This thing is doable!
posted by Idcoytco at 7:48 AM on April 21, 2012
I agree that an SSRI can be helpful. It won't ease the pain, but it should ease that constant nagging that it gives you.
And the advice to "work through it" seems harsh, but it is the truth. Accept that the pain will be what it is and that, at least for now, it is not going away. You really only have two choices- let it win and drag you down with it, or just accept it and do what you have to do. A family member lived with severe arthritis pain for years (to the point where doctors would look at XRays and ask her how long she has been on disability and how did she manage to walk into the office unassisted), and she suffered through it because of her fear of joint-replacement and because there was no other choice. She only (finally) did the replacement when the joint got so bad it basically seized up on her.
posted by gjc at 9:09 AM on April 21, 2012
And the advice to "work through it" seems harsh, but it is the truth. Accept that the pain will be what it is and that, at least for now, it is not going away. You really only have two choices- let it win and drag you down with it, or just accept it and do what you have to do. A family member lived with severe arthritis pain for years (to the point where doctors would look at XRays and ask her how long she has been on disability and how did she manage to walk into the office unassisted), and she suffered through it because of her fear of joint-replacement and because there was no other choice. She only (finally) did the replacement when the joint got so bad it basically seized up on her.
posted by gjc at 9:09 AM on April 21, 2012
You've got bigger things to deal with, or so it seems to me; chunk it into the close
I haven't finished reading, but this is bad advice. Sleep apnea kills, it does it slowly, but it damages your heart over time as you are being deprived of oxygen. It also leaves you tired enough that you can fall asleep while driving or doing other dangerous activities.
OP: Have you looked at a nasal pillow mask? My Dad had to try several ones before finding one that worked for him.
As far as dealing with chronic pain, it sucks, no two ways about it. I've been dealing with chronic pain for years and at times it is all I can do to get out of bed.
What helps me: a) a supportive partner, my husband rocks and listens to me when I need to whine or cry b) medication. I'm on Wellbutrin and take Xanax as needed c) some days just letting myself wallow. Once in awhile I just need to feel sorry for myself. d) friends that are supportive. e) meditation. I light candles and just breathe for awhile.
Do whatever it takes to help you get through it. Make sure you take the medications you are prescribed. Don't try to be a hero, take the pain meds to keep the pain down. Use whatever else works to help you feel better. Heat, cold, physical therapy, rest, etc.
posted by SuzySmith at 12:06 PM on April 21, 2012
I haven't finished reading, but this is bad advice. Sleep apnea kills, it does it slowly, but it damages your heart over time as you are being deprived of oxygen. It also leaves you tired enough that you can fall asleep while driving or doing other dangerous activities.
OP: Have you looked at a nasal pillow mask? My Dad had to try several ones before finding one that worked for him.
As far as dealing with chronic pain, it sucks, no two ways about it. I've been dealing with chronic pain for years and at times it is all I can do to get out of bed.
What helps me: a) a supportive partner, my husband rocks and listens to me when I need to whine or cry b) medication. I'm on Wellbutrin and take Xanax as needed c) some days just letting myself wallow. Once in awhile I just need to feel sorry for myself. d) friends that are supportive. e) meditation. I light candles and just breathe for awhile.
Do whatever it takes to help you get through it. Make sure you take the medications you are prescribed. Don't try to be a hero, take the pain meds to keep the pain down. Use whatever else works to help you feel better. Heat, cold, physical therapy, rest, etc.
posted by SuzySmith at 12:06 PM on April 21, 2012
Make it a priority to find a CPAP mask that doesn't have a strap around your neck! My chronic pain is far worse if I don't sleep well. Good sleep reduces the amount of pain I feel from other problems considerably.
I like the Swift LT nasal pillows CPAP mask, but it does involve a strap around the back of the head, though not down at the back of the neck. There are other CPAP masks that don't require any strap at all. See, for example, the CPAP PRO, which is held in place by something molded to your top teeth, or the Fisher & Paykel Oracle Oral Mask. There are probably others, as well.
I personally was unconvinced by the claims about the Provent device that was the subject of a bizarrely flattering New Your Times piece that read like a press release, but giving that a trial it would certainly be wiser than just ignoring your serious sleep problem.
Solving your CPAP problem is likely to help significantly with your chronic pain. Everything is much worse when you are suffering from sleep apnea.
posted by artistic verisimilitude at 7:23 AM on April 22, 2012
I like the Swift LT nasal pillows CPAP mask, but it does involve a strap around the back of the head, though not down at the back of the neck. There are other CPAP masks that don't require any strap at all. See, for example, the CPAP PRO, which is held in place by something molded to your top teeth, or the Fisher & Paykel Oracle Oral Mask. There are probably others, as well.
I personally was unconvinced by the claims about the Provent device that was the subject of a bizarrely flattering New Your Times piece that read like a press release, but giving that a trial it would certainly be wiser than just ignoring your serious sleep problem.
Solving your CPAP problem is likely to help significantly with your chronic pain. Everything is much worse when you are suffering from sleep apnea.
posted by artistic verisimilitude at 7:23 AM on April 22, 2012
(s/New Your Times/New York Times/, of course.)
posted by artistic verisimilitude at 7:36 AM on April 22, 2012
posted by artistic verisimilitude at 7:36 AM on April 22, 2012
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posted by PickeringPete at 3:39 PM on April 20, 2012