How do you deal with lifelong chronic pain?
November 9, 2020 3:30 PM   Subscribe

This is about a friend/mentee of mine who is now 16 years old. As a baby, she was diagnosed with some inflammatory disease, which is on the charts as rheumatoid arthritis, but no one is quite sure what it actually is. She has, I think, never not been in pain, and asking her standard pain questions just makes her shrug in defeat. She's dealing with anxiety, depression, and attention issues, and probably physical dissociation. Does anyone else have a similar experience, and can you recommend resources?

This summer, we started working with a psychiatrist, and have tried Celexa and Cymbalta (the latter is good for chronic pain sometimes) out. Celexa seemed more effective, but not enough, so now we're on to Zoloft. Adderall is the other med in play, and it has definitely been a help in her focus and attention, but her memory is still mostly made of holes (despite the fact that she's freakin' smart). She's getting a neuropsych evaluation in the next few months, which should help us some more with clarifying exactly what her symptoms are.

However, I'm not sure what to do about the chronic pain. She moves like she's in pain, and I'm pretty sure she is constantly distracting herself from it via video games, flow stating, etc. (If anyone has resources about this, I'd love 'em. For many years, she just thought she was lazy, so it's good for her to have outside input about how pain affects brain function). She wakes up and wants to sleep all the time, but she has a serious sense of duty, and drags herself through school every day. Part of the trouble is, this occupies all of her available resources. I cannot imagine a restriction diet working. Her rheumatologist is decent, but when her pain reports are "I don't know. I don't remember. I guess I'm in pain?" (and she means it), it's hard for him to know what to do. Pain journals don't do a lot of good because, well, she doesn't have a sense of what not being in pain would be like.
posted by Alex Haist to Health & Fitness (19 answers total) 6 users marked this as a favorite
Best answer: I recommend that you help her find a support group for young people with chronic illness. I'm in one, and I find it really helpful. I've had fibromyalgia for 8 years and it definitely is a journey figuring out how to improve your quality of life. It's nice to have other people that relate to what you're going you. Now that I think of it, if she's interested, you can message me and I can see if can get an invite for her to my support group. It's called Chronically Awesome (I'm a member but don't run it, I can see if I can get permission from the mods) and we're a group of teenager/young adults with chronic illness that's international, online and free.
posted by starlybri at 3:54 PM on November 9, 2020 [2 favorites]

Best answer: In addition to the support groups and her psychiatrist, I also suggest a therapist who specializes in treating those living with chronic pain. While I don't have chronic pain, I live with mental illness, including PTSD, and finding a therapist who truly understood me was an incredibly empowering experience.

I recommend she follow more people on Instagram that inspire her. Rebekah Taussig, who published an amazing book this year that I also recommend, is a great person to start with! You two could read her book together as well.

I'm a teacher and I can't tell you how many times adults, especially those in power, don't believe the pain and suffering so many children and teens deal with on a daily basis. It's awful and there's no excuse. While as a non-guardian, you probably can't be included on her school stuff unless her guardian invites you to come along and formally gives you permission to access your friend/mentee's files, you CAN help encourage her to advocate for herself. While her case worker at school, again, probably can't share any information with you, you can still email the case worker if you want to share updates.

Good luck to your friend and kudos to you!
posted by smorgasbord at 4:36 PM on November 9, 2020 [1 favorite]

Also, as one very caring adult who works with teens to another very caring adult who works with teens, sometimes we need to step back and let them take charge -- even if it means falling at first. We should definitely fight for them and always show them love but sometimes we can fall into patterns where our actions start to (accidentally, unintentionally) disenfranchise the young people we mean to help. I've had to learn to step back, ask questions and leave space for them to go unanswered, more than give directions. You are her cheerleader but not her parent, not her therapist, and not her doctor. (Ugh it's hard wanting to do so much and knowing you can only do so much!) I think it's hard to be both a mentor and a friend. You can technically be both, for sure, but there's a definite power dynamic to always be aware of. That said, my older friends are some of the awesomest and most helpful people I know when it comes to reflecting and empowering myself. I've found the work of Nedra Glover Tawwab to incredibly helpful for setting my own boundaries around helping. If you aren't seeing a therapist as well or have a mentor supervising you as a mentor, I'd consider that too because we can use a second opinion and helping hand as well. Again, best wishes to you both!
posted by smorgasbord at 4:44 PM on November 9, 2020 [6 favorites]

I'm going to me-mail you tomorrow...posting here so I don't forget. So yeah, check your private messages in the next few days--I have some input which might be minorly useful.
posted by liminal_shadows at 4:47 PM on November 9, 2020

I find tracking stuff other than pain helpful. I don’t think I’ve always been in pain, but I had pain for years before my diagnosis. I mostly identify high levels of pain from my condition by a foul mood or profound fatigue.

Also, I don’t know what her physical condition is like, but exercise as I am able (ranges from gentle yoga and walking to CrossFit) always helps my mood and my ability to function.
posted by hollyholly at 4:49 PM on November 9, 2020

Best answer: Has she ever been reevaluated for autoimmune disease? There may be new tests, etc. since she was a child that could more accurately pinpoint the cause?

This part "I'm pretty sure she is constantly distracting herself from it via video games, flow stating, etc. (If anyone has resources about this, I'd love 'em. For many years, she just thought she was lazy, so it's good for her to have outside input about how pain affects brain function)." reminded me of a book I have read called Habits of a Happy Brain by Loretta Graziano Breuning. In it, she talks about the neurochemicals that make us feel good and bad. Pain causes our body to release cortisol, the stress hormone. She says "Pain wires us with warning signs. Smaller pain builds smaller warning circuits that we're less aware of. We end up with alarmed feelings that don't always make sense." I personally have found that being in pain raises my anxiety levels in general--distraction can be a valid way of coping with anxiety and/or pain. You might check out the book. It doesn't address chronic pain, but the information is interesting. There are lots of guides out there that suggest mindfulness or meditation as a component for managing chronic pain. Going back to the pain-creates-cortisol notion, it would make sense to try meditation as it generally helps lower cortisol levels. That is NOT to say that her pain is within her control, etc., just that meditating might help a little.
posted by purple_bird at 5:22 PM on November 9, 2020

Best answer: Being in constant pain is EXHAUSTING. As someone who has been in constant pain the past 5+ years and will always be for the rest of my life, it's honestly just extremely validating when someone acknowledges this.

Part of your brain is always thinking about your pain: When's the last time I took meds? Do I need a nap before I go out? How long can I stay at this party? I'm doing ok now, but how much reserve do I need so I can drive home safely and have enough energy to actually put myself to bed? Do I need a stretch break? Etc, etc. And your brain uses a ton of energy. Of course she's tired all the time!

Also has she ever read the Spoon Theory blog post? That can be helpful to share with her friends who don't understand what she's going through.
posted by radioamy at 5:25 PM on November 9, 2020 [8 favorites]

Best answer: Being in constant pain is EXHAUSTING.

Can confirm.
posted by flabdablet at 7:12 PM on November 9, 2020 [2 favorites]

Response by poster: Thanks, all. Some follow up thoughts: She reports that meditation and mindfulness, far from being helpful, significantly escalate her stress levels because they make her all the more aware and raw of painful emotions and sensations. She doesn't have a safe place in her body and emotions to go, y'know? I think it could eventually be a useful adjunct, but right now, it's kind of like asking her to fly when she's having trouble walking.

I'd also appreciate insight into how to help her to track/report pain. As many of you probably know, doctors are following a protocol when it comes to diagnosing and prescribing, and if the patient doesn't say the right words, they are somewhat at a loss. "I forget / I don't know / I'm always tired and want to sleep" is incredibly difficult to get traction with. Since she's never been without pain, she doesn't have a 0 on the pain scale to compare it with.
posted by Alex Haist at 6:18 AM on November 10, 2020

Response by poster: As, to clarify my role in this: Both her parents are 100% on board with this, have given permission for me to attend doctor appointments, etc. Why me? I'm a good family friend, and I have personally navigated a lot of non-standard physical and mental health issues that were obfuscated by being relatively smart and driven (like ADHD, sensory issues, etc.). I've also been tutoring her for the last four years, so I can back her up when she says things like "I don't remember" not as a form of passive resistance but as a statement of fact. When I say friend, I mean "older friend who enjoys swapping books and discussion of musicals and appreciates the insights this smart teenager has," not "I emotionally rely on a teenager." When I use theraputic language, it is not in the context of "being her therapist" but in the context of "how do we present your symptoms in a way that will make sense to a therapist."
posted by Alex Haist at 6:31 AM on November 10, 2020

Best answer: She's tired and her memory sucks because she's in pain all the time. It'll do that to anyone. It's honestly surprising that she's not super irritable.

I cannot imagine a restriction diet working.

I have rheumatoid arthritis, and all I can say here is you could be really surprised. This can make a lot of difference and it's worth trying. She should start by just killing gluten, and then looking at inflammatory/acidic foods. This made a ton of difference for me and before trying it I was sure it was bullshit.

Is she on an immunosuppressant? If not, has her doctor looked into that? This can make all the difference in the world.

What I see in your description is a lot of supplemental care for pain, but no actual pain meds. Does she have pain meds? Or is it one of those horrible "well she's too young for pain meds" when she's clearly not too young for chronic pain kinds of things?

My other suggestion would be cannabis. Go through a medical program if there is one, and if not... well, it shouldn't be hard for someone her age to find a dealer, if you don't have one. This is a 100% serious suggestion - cannabis can give her some emotional space from the pain, it makes it less intensely personal and could really help her.
posted by bile and syntax at 7:42 AM on November 10, 2020 [2 favorites]

Best answer: for reporting pain, i still find this described pain scale (found in this post about, huh, difficulty with pain scales with RA) vague enough that i'm not sure the difference between a 7 and a 3 if i'm dissociating my way through it, but it has helped me reframe describing pain in terms of what i'm able/not able to do because of it. like, today, doing anything other than laying in a dark room was impossible, or last week i was able to cook most days but that's all i could manage to do.
posted by gaybobbie at 11:15 AM on November 10, 2020 [2 favorites]

Best answer: Thank you, gayboobie -- that's the exact pain scale I was coming in here to post. I was greatly under-reporting my pain levels when the medical professionals were only using the smiley-face-to-frowny-face idiotic scale.

Also, the Curable app for chronic pain has been helpful.
posted by vers at 11:51 AM on November 10, 2020 [2 favorites]

Seconding the Curable app. I am using it for chronic migraines and finding it stunningly helpful. It goes through modern pain science and is advised by pain researchers and practitioners in a variety of disciplines, and run by people who have lived with chronic pain.
Modern neuroscience is illuminating more and more about how chronic pain develops and worsens. Study after study from the best scientists and institutions in the world show that the brain and central nervous system play a much more significant role in chronic pain than we once thought. By retraining the brain to process pain differently, we can reduce symptoms and gain more control.

Our mission is to provide widespread access to evidence-based, safe, and effective chronic pain solutions for all those in need. We take the latest research in pain science and make it easy to understand, convenient to use, and affordable to access with or without insurance.
posted by sadmadglad at 1:08 PM on November 10, 2020 [1 favorite]

Best answer: As someone who also has a rheumatoid arthritis-like autoimmune disease - distracting herself with video games is good! Like, yay for her, she's found a satisfying way of coping. There is nothing lazy or shameful about doing what you have to do to get by.

I started playing Hay Day just after my diagnosis. It's all based on completing various tasks to grow your farm. At a time when I felt completely useless it made a huge difference in my life.

And being immersed in a task is another way to achieve mindfulness. I completely understand her not wanting to notice how she feels. I do jigsaw puzzles on my ipad to keep my mind busy in a way that clears my thoughts but doesn't burden me.

I agree a support group - online I'd imagine for kids her age - would be good just so she can hear what others consider achievements. In a world of focus on achievements and being busy busy busy it's soothing to read that you're not the only one who has bad days where you have to bump down the stairs on your butt because you're feet don't work. Or to have people commiserate because obviously the natural response to spending an hour at the mall is to spend the next week sofa- & bedridden.
posted by kitten magic at 3:11 PM on November 10, 2020 [2 favorites]

Best answer: Pain relief at some point so she has a baseline experience of what it feels like to have no pain. I had such frequent migraines that I had no idea people existed without pain and fatigue and assumed others were simply more strong willed than me (thanks dad for that parenting). Getting effective pain relief and being told by a doctor this is very strong and people without pain would be feeling euphoric - like those wisdom teeth funny videos where people are all warm and loopy? I was just normal, resoundingly oh the pain is gone. If she is in constant pain it’s really hard to measure without a baseline because the days just blur and your body always hurts.

I believe strongly in medicating chronic pain because time in pain is just a lost blur. Women tend to under report pain and be less believed as a double blow. She needs to record her pain in an app or diary and find a doctor who believes her.
posted by dorothyisunderwood at 4:45 PM on November 10, 2020 [3 favorites]

Best answer: [I'm a physician and have been in constant moderate-to-severe pain for about 10 years.] You haven't mentioned analgesics. Presumably her rheumatologist has recommended or prescribed an NSAID; naproxen (Aleve) is cheap and as good as anything prescription. In older adults we advise taking NSAIDs with food and sometimes it's necessary to protect the stomach with famotidine (Pepcid) or omeprazole (Prilosec).

Acetaminophen (Tylenol) complements NSAIDs; they work different ways and the effects are additive. (For noninflammatory conditions, acetaminophen is first line therapy.) Avoids narcotic analgesics for non cancer pain.

If she's in pain all the time, she should be taking her analgesics on a regular schedule. Stay in front of the pain. Pill organizers, which come in numerous designs, can help that, as can smartphone apps that remind one when it's time to medicate. I rely on both.

Distraction is your friend. Have a hobby that one can get absorbed in--I build model rockets. Doing something--anything--is better than watching TV/YouTube. Even just puzzles (I'll plug Games magazine).

For most any pain condition, regular physical activity is essential. Start small.
posted by neuron at 10:02 PM on November 10, 2020 [1 favorite]

Best answer: The pain scales that are most useful to my partner, who has spent ten years constantly in some amount of pain, talk about things like "Can you work through the pain," "Can you ignore it," "Can you concentrate on anything," "Do you fantasize about cutting off the affected bodypart," etc — talking about what it does to you, not how it relates to some "normal" that you no longer remember. It sounds like getting to the point where she can answer those questions reliably will take work. But it's a realistic target, and being able to do "zero is no pain, ten is the worst pain you've ever felt" just might not ever be realistic for someone in that situation.
posted by nebulawindphone at 1:59 PM on November 11, 2020 [2 favorites]

Response by poster: Sorry on slow update: She's on Humira and daily Naproxen. and has been for as long as I've known her.

Given my understanding of biologics, I'd expect that after a near-lifetime on Humira, it would be considerably less effective, and I'd like to get her to try a new med. Right now, the rheumatologist is contemplating reintroducing methotrexate.

We took the psychiatrist route because if you can't focus, "let's try talking to a bunch of different doctors and coordinating care and justifying pain" is an insurmountable obstacle, and neither of her parents are quite up to it. We're going to play with some of these resources you guys gave us, and I'm very grateful.
posted by Alex Haist at 12:38 PM on November 13, 2020 [1 favorite]

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