Soliciting Advice for Chronic Pain Management

[untonuggan]

So it's looking like I'm SOL regarding pain medication. I'm on Lyrica already; I can't take any kind of anything that messes with serotonin; NSAIDs are out with my gut the way it is; don't want opiates because All The Reasons.

My doctor wants me to go to a pain clinic; I'm not sure what they'll do other than offer me strong opiates or something and give me physical therapy, but I'm supposed to be getting PT for my dizziness so yes that would be out for insurance reasons alone, let alone me going bananas. Anyone have experiences to offer on pain clinics?

In the meantime, my side effect journey of daisies and rainbows and leprechauns has made me leery of adding more chemicals to my internal chemistry project. Like, I've *always* hated being on this many meds and just kind of grinned and born it. But seriously? This is frelling ridiculous. And so, yes. I'm looking for non-medication ways to keep this under control, at least until a neurokinin-1 antagonists maybe comes on the market approved for pain management. *crosses fingers* But that could be awhile.

So yes, I'm soliciting suggestions in this post for pain management. I will do my best not to immediately rule them out because, say, I've tried acupuncture and it didn't work. Nothing is too woo for this post. I just want a working list to, er, work off of so I can fucking knit and spin regularly again. (I have knit TWO ROWS this week and spun nothing and it's making me cranky, who knows what I would have done without video games.)

Thank you, dear circle, for all your support!

PS fewer seizures yesterday! woo!

PPS Yes standard disclaimer regarding I know you're not medical professionals blah blah won't sue you blah blah check with my doctor blah blah.

Comments

[jelazakazone]

:::hugs::: I got no advice regarding pain management, but I'm so glad to hear the seizures have gotten better and the source really does seem to have been located. I hope you find something that helps!

[the_rck]

I never found anything that really helped with pain (NSAIDs do diddly squat for my fibromyalgia pain. I've heard that that's common). I have heard, though, that meditation can help, not so much with reducing the pain as with making it easier to live with and function with. I never tried it because I'm too impatient and was never willing to spare the time to try it (possibly my pain was never bad enough). It is a time investment.

The one time I went to a pain clinic, they were very much opposed to medications for pain, so it may well be that a pain clinic wouldn't try to prescribe opiates. Their attitude frustrated me because it was all about living with the pain and not at all about alleviating it.

[jjhunter]

May be worth crossposting or linking this over at fucking_meds.

[shanaqui]

I'm a bit blasé about opiates because my dad is on an enormous amount of them. I'll poke him for what he takes other than opiates, though; I know there's something. I think he gets shots of something? But that's fucked with his muscle tissue. Anyway, I'll ask. He also has a PT regime that he does every morning without fail which does help somewhat, so if you do find something like that you can incorporate into your routine...

If you wouldn't mind giving me a list of your meds and dosages, I could send it to Mum and see if she can suggest something with few interactions. She's good with knowing the off-label uses for stuff.

I don't have anything else to suggest, though. I desperately wish I did.

[ducened]

Sort of relating to The_Rck's suggestion - have you tried massage? It gooses the parasympathetic nervous system and is supposed to help (I say 'supposed to': research and anecdotal evidence are out there but I haven't read much, nor done it myself) with things like Fibro and MS. Not knowing what sort of chronic pain you're in or how localized/generalized it is I'm hesitant to suggest more specific types of modalities.

[Disclaimer: I'm a massage therapist.]

[brigid]

I'm following this with interest.

My mom has arthritis and lives with a lot of pain. Vicodin helped her function and live a fuller, less painful life but her doctor decided she was "dependent" on it and cut her off (yes, she was dependent on it... it eased her pain!) so she's back to square one and is now way less active than she was.

She's found massage to be helpful.

[staranise]

Many pain clinics offer meditation, CBT, or other psychological approaches to help with dealing with pain. These things really do help you change your relationship with how you perceive pain; they both make the pain you're in more bearable and reduce the actual amount of pain you feel. However, most people I know with chronic pain, myself included, find the way it's taught and talked about to be blaming and triggery. I've found one or two practitioners who live with chronic pain themselves and are delightful to listen to; but the majority I've met don't know the landmines they're stepping on when it comes to talking to people who have often been blamed for their own pain. So it might be worth either getting a psych you know and trust right now to walk you through those techniques, investigating them yourself in a format you can handle (audiobook, podcast, actual book, whatever) or very cautiously attending one-to-one therapy or group information sessions.

For example, the "body scan" is a common mindfulness body technique. I hate most of them, because they believe that a person can easily become aware of their body and then feel relaxation and wellbeing. To which I say HAHAHA LOL NO. However, the body scan in the CD that accompanies The Mindful Way Through Depression is very open to different bodies--it explicitly addresses people who can feel positive things, who feel overwhelming pain, or who have no sensation in some areas (or don't have that area to feel sensation in, like amputees). So it felt much more useful and like I didn't have to grit my teeth through it.

[spiralsheep]

I'm not a biochemist but... I thought some specific NSAIDS were "neurokinin-1 antagonists" or blocked pain pre-emptively at brain-level rather than after-the-fact at body-level? [insert vague hand-waving here] I read some studies a couple or three years ago when I needed to max out the efficiency of my anti-pain meds (cos bleeding insides, and can't take ♥ codeine ♥ for more than very short periods, &c). ::handwavium + pinch of salt::

Personal experience ahoy!

[spiralsheep]

Also, I hesitate to add this BUT you did ask so.... personal experience ahoy!

I've practiced several forms of meditation successfully for, erm, mumblety-years and the ignore-it technique of controlled dissociation (yes, I called the pig a pig, shocking I know!) works perfectly for my permanent LOUD tinnitus but doesn't work at all for any srs pain ever (and that's apart from potentially being a mental minefield for anyone already suffering dissociative disorders imo). My hypothesis is more or less this: my tinnitus is a symptom/side-effect of another physical process so my body-brain has no vested interest in whether I consciously pay attention to it or not ("lalalala... tinnitus? Y'okay then... lalalala...."), whereas my pain is a physical warning mechanism so my body-brain has a strong vested interest in making me pay attention to it ("HEY, SPIRALSHEEP, DON'T DO THAT THING CONNECTED WITH THE PAIN!"), hence the widely divergent results of ignore-it as a management method.

This probably goes without saying but... (1) not everyone's pain results from specific physical warning mechanisms, (2) the ignore-it method works for some of the people some of the time, and (3) tinnitus shouldn't be ignored until it's been assessed by a qualified medical professional. /disclaimers

/personal experience

[staranise]

A lot of painkillers work on the brain level. Neurokinin-1 is a very specific receptor in the brain that ties into a very specific molecule that's been implicated in a lot of Liz's symptoms. Right now the main thing that acts on that molecule is opioids that have a lot of side effects, like being hella addictive. Medications that target neurokinin-1 (antagonists) have the potential to target symptoms of depression, dissociation, pain, and gastrointestinal problems all at once.

[spiralsheep]

Yes, I know. See the comment you're replying to. ↑

[staranise]

I'm sorry if that came across as 'splainy. I got confused because I thought you were saying that "works on the brain directly" and "neurokinin-1 antagonist" were the same thing, rather than the latter being a very small subclass of the former.

[spiralsheep]

It's ok. You made a statement at me, which is a communication style that's difficult to respond to.

I was specifically researching Diclofenac Sodium and came across some stuff about its effect on the pain/stress/anxiety complex of actions/reactions, which seemed interesting (to me), although not necessarily relevant in this context cos Diclofenac Sodium has some potential side-effects that Liz might find unacceptable risks. I don't remember the precise details of what I read (hence the handwavium). I've checked my records and I would've been reading during the second half of 2011 at the very earliest, probably 2012.

I also knew a psych specialist who was working on anxiety/vagus nerve stuff at a British University at about the same time but, again, although I found her speculations interesting I can't remember what she said. I filed the papers she gave me somewhere but I never read them all the way through because it wasn't immediately applicable to me or anyone I knew.

[mathsnerd]

I've got fibro and Ehlers-Danlos Syndrome among other things both of which cause chronic pain.

For the fibro, I take 60mg Cymbalta in the mornings. I was on a higher dosage, but it didn't help any more and made me aggressive as a side effect.

For the EDS, I take buprenorphine patches, 35µg/hr, daily and have fast-acting Dilaudid for break-through pain.

Far more helpful than the opiates though, is the physio (both exercises and massage therapy) that I get 1-2x a week. The massage helps reduce pain in many areas so I don't need my break-through meds nearly as much.

For the rest, hot pads, baths with relaxation salts/oils, relaxation/meditation music, lavender oil, talking someone into giving me a foot rub, strong peppermint tea, and doing led mindfulness practice while lying down are all ways for me to fight moderate to medium-medium-high pain.

Good luck building your own pain management kit!

[pipisafoat]

Slight caution on the hot packs for anyone with dysautonomia - in some people (but not all people), heat can make things a lot worse, fast. And for some people, it also depends on heat location. I can't use heat at all anymore, but house-grandma can use heat as long as it's not on her head, chest, neck, or spinal cord. So. Try it! Just stay aware.

[phlox]

My only non-medication ideas are really massage and acupuncture. I know you said you'd done acupuncture and it did squat, but did you try multiple types? I've had good luck with 5 Element for emotional stuff (and I do a kind that works without needles!), my mom's had good luck with the same kind, but also with a different type--and I don't do well with the 5 Element that has moxa as part of the treatment. Or, I assume I wouldn't; I really don't like the smell. I know it's fairly inconvenient to try multiple kinda, and probably not covered by insurance, but it *has* helped both the humans and the canines in the house!

GOOD LUCK and I am so pleased to hear that the seizing is backing off!

[rainbow]

i can't take most meds (too many horrible allergies and side effects), and what i've used the most is pressure point stimulation. it releases endorphins, which reduces effective pain levels for me.

it also makes me a bit loopy sometimes, though.

for ra and fibro flareups, i use turmeric, as a food rather than as a supplement: add a spoonful to a large bowl of soup, add 1/4 tsp to a cup of cocoa or spiced tea, etc., up to about 2 tsps/day as needed (less if my ears start to ring.)

i also actively avoid certain foods/familiest to reduce my pain levels. my fibro is triggered by gluten, corn, and potatoes. my ra is triggered by peppers and tomatoes (but not potatoes. weird, huh?). my ic is triggered by peppers, but not much by tomatoes or peppers. gluten is a general autoimmune reaction causer for me and triggers migraines; so does aspartame (again, for *me*). oh, gluten also causes neuropathic pain for me. food additives (preservatives, colours/flavours, flavour enhancers, prettymuch anything that's in commercial processed food but isn't food itself? pain trigger :( )

diet generally keeps my pain levels below a 5 or so (they used to be at 5-8 on a daily basis), and most often they're at 0-3 now.

[kaberett]

I am currently wrapped in my TENS machine (and will be going to a training course at my pain clinic on it in about a week's time lololol, I've had it for years), having slathered myself in diclofenac gel (Voltarol). I've also found mindfulness & meditation variably helpful. But um seriously I love my TENS machine rn, and indeed in general - it isn't perfect, but it is great at taking the edge off, especially when I don't have massage available.

Will hopefully have more useful stuff when not in fill-self-up-with-pain-management-before-sleep mode.

AND NOW THE DRUGS that I am on that you don't mention, please feel free to ignore this bit:
- amitriptyline (25mg) for pain management SERIOUSLY IT IS MAGIC. It is a tricylic antidepressant, but psych effects are only thought to kick in above about the 75mg level (I am also on citalopram for brainstuff). My codeine intake dropped LIKE A STONE (like, by several orders of magnitude) after I started this baby, and I've also been able to halve my daily paracetamol and mefenamic acid intakes.
- Buscopan. Anti-spasmodic. Means I don't get bowel endo flaring up after food. Is nice (I'm on an incredibly low dose; again, it's something that's made a massive difference to my quality of life).

[lilacsigil]

I was also going to mention Buscopan. I have nasty periods which are getting worse (I have a gynaecologist appointment...for December!) and get severe abdominal pain from crotch to diaphragm. Buscopan works on smooth muscle tissue and means that I can actually stand up straight or lie down flat during those times. It doesn't work on other kinds of pain, though.

Lots of people take amitriptyline for pain management especially when nerve pain is involved, at low doses (10-25mg at night) including people on SSRIs and SSNIs, so that might be worth checking out if it's safe.

Ice is really good for my psoriatic arthritis (which flares up in winter, so that sucks!) but not for other kinds of pain; heat is good for other pains but not my arthritis.

[lilysea]

This is a website by three universities working together, and peer reviewed twice:

"painHEALTH offers you information, tips and self management tools to assist in the management of musculoskeletal pain"
http://painhealth.csse.uwa.edu.au/

Meds I have found helped other than Lyrica:

Panadol Osteo (slow release paracetamol)
http://www.gsk.com.au/products_consumer-healthcare-products_product-listing.aspx?view=51

Fisiocrem: heat without irritating my sensitive, psoriasis prone skin
http://www.fisiocrem.com/australia/

voltaren gel: topical NSAID gel that you rub into the sore bit, doesn't make me drowsy or give me stomach issues
http://www.voltarengel.com/consumer/default.aspx

Other things that help:

Manipulative physiotherapy, acupuncture by a physio
If you are getting acupuncture, I would see a physiotherapist rather than an acupuncturist - more science, less woo.

[raze]

I have a friend who swears by Voltaren gel. It would need a script but it seems to really help. She also uses some kind of patch - Salonpas, maybe? - but that's more for specific muscle knots (I think?) and localized pain rather than whole-body issues.

Is this more arthritis pain, muscle pain, or nerve pain? I find that SAM-e (which a medical doctor suggested) and modifying the diet to reduce foods with a high inflammatory index has been helpful to my joint pain. Or, I should say, "can be," since I am bad at lastingly staying away from some foods. Also a disclaimer on SAM-e: some types of mood instability do not play nicely with it. My own included. It turns me into a manic rage-monster that does things like get out of the car in traffic to yell at somebody who honked; I have found in a repeated attempt that the symptom dies down within a few days, but it's a hell of a bad psychiatric side effect even for a brief duration. So you may want to run it by your psych if you opt to try it.

Also, massage can be extremely helpful, to echo the folks above. I went to a woman who did very aggressive, deep massage. It would be uncomfortable during the process, but after, SO much better. She had me to a point where my feet didn't just constantly ache for the first time in years. Unfortunately, I am so sensory defensive and touch averse that I couldn't handle it psychologically, because every session would make me just totally unhinged by the time it was over. But even as someone who HATED it, I will say it definitely worked.

[sauscony]

I hope some of this helps. Yoga helps me deal with my Crohn's-related joint pain, especially my hips. I haven't been able to meditate successfully, but I feel like I almost can after doing some yoga, but brain just won't shut up. ;)

For plantar fasciitis, I've done all kinds of stretches and rehab exercises my doctor gave me. The things that work the best though are rolling my foot over a frozen water bottle (I see in another post, you mentioned the tennis balls too), stretching the bottom of my feet, stretching by hanging my feet over the edge of the stairs, and calf stretches. The YouTube channel Heel That Pain has some excellent videos. Also, wearing my Birskenstocks helps a lot and they work almost as well as custom orthotics (and I got mine dirt cheap too).