Help me cope with pain
July 12, 2013 8:04 AM   Subscribe

I've been in pain every day for four years, despite physiotherapy and prescription pain medicine. How do I feel like it is worth keeping going?

I have a chronic medical condition that makes me unable to work (and I use a wheelchair.)

The constant grind of pain and fatigue day-in day-out is wearing me out and I sometimes feel as though I am just waiting to die of old age (I'm in my thirties.)

At the moment all that keeps me going is my cats, my wish not to hurt my friends, and the hope that a new, better pain medication will come onto the market in the near future.

Help me stay positive, and find meaning, despite the constant pain.

(Yes, I am seeing a psychologist/counselor. She says I'm definitely not Depressed, just exhausted and frustrated.)
posted by anonymous to Health & Fitness (11 answers total) 13 users marked this as a favorite
Have you been to a doctor that specializes in pain management? You need someone who really understands pain and will consider all avenues to help you with it.

I found that the meds did very little to allieviate my pain. I did find that injections of cortisone did the trick.

Everyone is different, but don't stop trying. Someone will be able to help you!
posted by Ruthless Bunny at 8:11 AM on July 12, 2013 [4 favorites]

Also, I worked every day with my pain. I found that the routine and the ability to function was really helpful.
posted by Ruthless Bunny at 8:11 AM on July 12, 2013

I had chronic pain for fifteen years. I know your despair. There were two things that helped me, both of which are somewhat Pollyanna-ish, but maybe they will be helpful.

1. I always made a (macabre) list in my mind of people who were in more pain than me. Or people who were facing terminal illness or had lost family members or were conscripted into wars in the Congo. I know it sounds terrible to focus on the pain of others, but it helped me with perspective to know I wasn't alone, nor was I in the worst situation.

2. I had great luck with visualization. I visualized the pain gathering together as a ball that I would then push away. Don't know why that worked but it did, at least for a bit.

It might also help to go so some sort of support group -- just having people to talk with and deal with your feelings might help. I would suggest Emotions Anonymous as a starting point (the meetings can be full of rage-aholics, so it might not be your scene).

Hang in there. It's so so so frustrating and so hard to believe there's another side or an end. But you can do this. I'm so sorry you are in this position.
posted by mrfuga0 at 8:16 AM on July 12, 2013

I have a chronic illness that prevented me from working and left me in basically constant pain (very luckily I've found relief through a surgical treatment, but I digress).

The thing that kept me going during that time was to find a way to help others using the limited abilities I had. I guess that sounds corny but it was important for my morale to feel like a productive member of society and that other people's lives were better because of me. One of the things I was able to do was knit. I knitted constantly, as much as I could without causing worse pain in my hands and eyes from knitting too much! I turned out several sweaters, hats, pairs of socks, scarves, shawls, and small knick knacks and gave them all away to friends and family members and some strangers.

I understand that many people can't knit or work with their hands (I was lucky that my arthritis didn't affect my hands), but everyone has something to give back. If you need help thinking of ways to do that, perhaps you could ask a mod to update the thread with your limitations, location, etc.
posted by telegraph at 8:30 AM on July 12, 2013 [2 favorites]

I've found that distraction is one of the only ways to cope with my chronic pain. Playing an addictive video game or marathoning an engrossing TV series via Netflix Instant gets my mind off my body for a while and lifts my spirits. It's not a permanent solution but it makes life a little more bearable.
posted by Jacqueline at 9:41 AM on July 12, 2013 [1 favorite]

I also have chronic pain and fatigue...4 different related conditions/diseases, so I have daily pain and it moves around a lot. Thank you for asking this question, because I could have asked a very similar one and I'm eager to see the answers. This is what helps me:

1. You mentioned waiting for new pain medications to come on the market. I do the same thing. I know I won't always be exactly like this. I may be better, I may be worse. New treatments will be found, or even new combinations of older treatments. Or my doctors will run more tests and find underlying conditions and treat those successfully, and that could help my current diseases. Or something. I'm 35 now and I may live until I'm 60? 80? That's a long time and a lot of medical research. Sometimes I have to just relax and wait for the next development. I get depressed when I think about 60 more years of pain, but the world will change so much in that time.

2. Chronic pain usually goes in cycles. I will (hopefully) cycle out of this big flare. Or my current flare will change. Different pain is almost better? Having the same, gnawing pain makes me more depressed; it helps when it shifts.

3. I'm also really...proud of myself? I feel really strong. This has made me strong. Having a chronic illness is like learning a skill. I know almost everything about it and what to do in different situations.

4. I participate in chronic illness communities (on tumblr, message boards, etc)...I have friends with my diseases that I can cry to. Having a support system helps.

5. I don't force myself to be positive. I know that positivity is beneficial, but I let myself get angry at my chronic illness. Might not help everyone, but it helps me. On the other hand, I try not to dwell on my chronic illness. I try to pull myself back when I'm thinking about it too much or being too negative. I used to keep detailed diaries of diet/medication/symptoms, and it was helpful, but I had to give it up recently because it made me obsess over my illness.

6. I made a gif reaction blog (cheesy I know) for one of my diseases. it helps to laugh about it. I love putting a new post up and seeing all the people liking and reblogging it.

7. distraction is also good. I bought a cool lap pillow that will hold my tablet/kindle/etc when I'm in bed (aka most of the time when I'm at home), so I don't have to hold anything when my hands are messed up.

8. I let myself rest and recuperate as much as I need to. I try not to beat myself up over lost opportunities. It's hard.

9. Work your chronic illness as much as you can. Use it to your benefit. If it's going to fuck you over, you might as well use it. Things like medical marijuana cards, occupational therapy, city services like getting pickups for doctor's appointments, etc etc. I got ADA accommodations and cashed in on my bank's disability insurance. Things like that.

10. List out everything you can do to help with your illness, including but not limited to narcotic pain medications. My list includes AEDs, gentle exercise, the spectrum of narcotic pain medications, steroids, trigger point injections, physical therapy, massages, prescription pain creams, fancy heating pads, tiger balm patches, stimulants, ice packs with cute, soft covers, whatever. I do have a wide array of tools to help with my chronic pain. Sometimes I get really sad that I've done everything I can do, so then I step back and try to remember everything in my toolkit. And that toolkit keeps growing.

I'm probably telling you stuff you already know. But I also wanted to show a little solidarity, that there's someone else out there dealing with this. It's really, really hard.
posted by hotelechozulu at 11:03 AM on July 12, 2013 [5 favorites]

I'm going to risk saying something macabre because it's really important. I saw what happened to a close friend, who had people close to him and much going for him, but was unable to work and in a great deal of pain. Anyway, I'd like to ask present-tense-you to make sure the phone number for a suicide hotline is readily available, just in case there's a time when you can't think who to talk to. It's for a possible future-you who might act on impulse during a moment when things are looking bleak and hopeless. There are some perspectives that make it near-impossible to see the big picture, and I think given what's going on, it's important to make sure you're ready for those moments with people to talk to and without any dangerous means available to hurt yourself.

In the U.S. the National hotline is 1-800-273-TALK (8255)

Keep at it. I agree with the suggestions above about finding ways to help people, as well as the Kabat-Zinn meditation suggestion. I'm so sorry for what you're going through.
posted by spbmp at 1:25 PM on July 12, 2013

My friend went through this pain program at the Rehabilitation Institute of Chicago. If you're not in Chicago, other cities might have similar programs. My friend found it very helpful for her chronic pain. The program is designed so that you can learn to manage your pain and get relief. It's not a miracle cure-all, but my friend is able to handle her pain much better than before she went through the program.
posted by parakeetdog at 1:38 PM on July 12, 2013

The book How To Be Sick by Toni Bernhard has been useful to me. There's some good stuff on the author's blog, as well.

Chronic illness has forced me to totally change how I evaluate my life. I have to keep reminding myself to look at each day as another chance to pose questions like: is it possible to enjoy and appreciate my life even under the constraints of this illness? can I have just one moment of something like joy each day? On most days, the answer is "yes." Even when I can't find a yes, I know, from years of doing this, that pretty soon another "yes" day will come, and that's enough to help me make it through the day and wake up and try again tomorrow.

Sometimes, when I have a really crappy day, I think about a friend who died way too young of cancer, and I remind myself that she would be very happy for the chance to have my crappy day.

And often I remind myself that my problems and my pain are utterly trivial. I'm in pain, and I can't do things that I want to do: so f-ing what? Who am I to think that it matters? My pain has no significance at all.

One tactic that has been essential to the success of this strategy for me has been to absolutely minimize my exposure to advertising. Those happy, healthy, pretty people partying and hiking and skiing through their lives, solving all their problems just by buying the right products, have nothing to do with reality. Constantly comparing your own life to that mirage is deeply toxic. Notice what sorts of messages make you feel bad, and practice avoiding them.
posted by Corvid at 5:02 PM on July 12, 2013 [5 favorites]

It strikes me that what makes your situation so bad is that you're only in your 30s; if you were old, like myself and the rest of us in this building for old people, you'd be part of the crowd, no different from the rest of us. We gather in the lobby, several in wheelchairs, others with walkers and canes, almost everyone griping about aches and pains (along with everything else); his bad knees, her gallstones, her aching back, his wobbliness, his hip replacement that pains him still, her rheumatoid arthritis and the pain in her ankle from her latest steroid injection, his macular degeneration and the world getting darker from day to day, her angina - or is it her stomach this time?? - and my inability to walk ten feet for lack of breath. Gripe, gripe, gripe - that's what we do - but then .... we all shut up when our friend with the newly-diagnosed terminal cancer comes into the room. Ahhh.

But you see, we're all OLD - you're not. So I wonder if you might be able to get some help - or at least some camaraderie - from a rehab facility where they work with younger people with spinal injuries or amputations. Those people are younger than we are, but God knows their pain is extreme, so they're dealing with comparable pain issues as yourself. If you had a few good friends who were dealing with the same issues you are, it might help - maybe.

I hope so. I send wishes for a break for you - some real, long-lasting help.
posted by aryma at 11:16 PM on July 12, 2013

Been there, done that and I so feel your frustration. Asking for help here is a great start because you are going to be in charge of this, I assume your medical doctors are useless minimizing your concerns, if not, tell them loud and clear...I went a combination route starting mind/body control through yoga, meditation, relaxation all I could find on the net, telling some of my body to quit it I did not need pain to tell me that I was hurting, and then I went to holistic supplements, and to tell you the truth about a week of non stop heavy duty codeine based products....just to stop it for awhile but only for a week...I had a break through and now do conscious relaxation, yoga and meditation if the pain starts creeping diagnosis finally from the docs, fibromyalgia...good luck and prayers....stay in the fight.
posted by OhSusannah at 5:03 AM on July 13, 2013

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