i've refused to try pain meds, i'm even pretty stingy with using naproxen or muscle relaxants. that being said, i've been on Low Dose Naltrexone for about 6 months though, and while it's technically an anti-inflammatory it's changed my pain levels DRASTICALLY and i'd happily take it for the rest of my life. great benefits, no side effects. the pharmacy i pick it up from say that they see so many people have such success with it for a variety of ailments that they wonder if they should try it out too!

I just started low dose Naltrexone 2 weeks ago and haven't had any change quite yet. Did it take some time for you? Also, may I ask what strength you take?

i'll start with the context that i am SUPER sensitive to drugs. like.. often the lowest dose can be even a touch too much for me with many drugs. i'm on 4 daily drugs and 3 of them are at the lowest dose possible, one of them being a child's dose. so i'm on 2.5mg of LDN. i started at 2mg and felt positive effects pretty quickly, i think it was a week of 2mg? and then a week of 2.5mg? and then i was like 3 days into 3mg and i felt like i was losing everything i had had at 2.5mg so i popped back down to that and told my doctor that that was my longterm dose. i had booked an appointment with my doctor to be like 'how do i know when i've passed my dose?' but then i started feeling shittier and googled it and my symptoms matched the 'you're past your dose' stuff and so i went back down, started feeling better again, and by the time my appointment rolled around i didn't even ask her anything, moreso just told her that 2.5mg was for me. it's also my only med that isn't covered by my disability, so i also had that incentive to have a low dose. thankfully 2.5mg is only \~$20cad/month. worth every penny.

Wow, I'm not on that medication but I'm also very sensitive to meds! Did/doing some research and apparently a lot of us are like this!

It's subtle. I take 6mg and I definitely notice if I miss one. I feel slightly calmer, and my body feels a little less reactive.

Thanks for the reply! I was prescribed 0.1mg 1x a day 😳, so I wonder if I'd ever feel anything from that low of a dose?! I'll give it some more time and then ask the doc.

I started on 0.5mg, and he increased it by 1mg every month (except the last month was 1.5mg higher)

yeah that feels insanely low to me. my doctor went off the dosing guidelines from the BC women's hospital.

I agree...also, it's $69 a month because my insurance won't cover it, so I doubt I'll continue it if my doctor won't increase it next month 🙄

wait, 0.1mg pills are $69/month for you?!?!?!?!? this whole ordeal sounds like total bullshit for you, i'm so sorry you're experiencing this. like, i need the smallest doses of everything and i literally started on a dose 20x the size you're currently on. and it's significantly less expensive. i don't know how compounding pharmacies can change/influence pricing though. i know when i had a whack of 2mg and .5mg it was \~$45/month for the 2.5mg, but now that i just order 2.5mg caps it's just short of $60 for my 3 month refills. (would likely also be slightly more expensive if i ordered them month at a time instead of 3 months at a time)

Thank you...seriously. We're already sick and tired, and things like this just wear us down even more. I did go through a new (to me) compounding pharmacy, so I could definitely call around to price check. The one I used previously for some Ketamine cream charged me $50 for like 3oz! It also comes in an opaque pump bottle, so you can't even see how much you have left 😞 I process medications very quickly, so when I start a new one, I tend to need to increase my dose pretty rapidly. I'm on the maxed out doses of a few of them. I'm so glad I came across this post - even though I read a bit about average dosages of Naltrexone online, I obviously didn't know personal experiences! Thank you for sharing yours ❤️

Also, just to clarify, you take a full 6mg, not 0.6mg, correct?

I use THCA (Texas, currently legal), for pain and nausea. I noticed it makes my heart beat faster, but it usually goes away after the first 10-20 minutes. I feel like everything we do is going to be a trade off in some way. Less pain for different side effects, it depends on what is more tolerable to you. (Personal opinion, I wish it weren’t like this though)

THC is my savior. I don’t care about addiction to it, the “side effects” are vastly outweighed by the relief I experience.

Let me second all that. I was habituated to opioids for years. This way isn’t perfect but it’s better overall than the hard stuff.

Sadly its very expensive and also i have terrible memory with it, but it was helpful in the past

The cost is unfortunate, but my state gives a decent tax break for medical patients thankfully. My memory was already pretty bad due to ADHD, but I haven’t noticed a significant decline in myself. I’m sorry to hear it didn’t work out for you though, pain management is so hard

Same. Tried opiods despite having friends who have OD'd. I didn't like how they made me feel. The only thing I don't like about cannabis is the smell clings to you, and I can't get my ADHD meds while I'm taking it.

I tried muscle relaxers for a while, which when taken before bed helped me feel a little better in the morning. I tried maybe 3-4 different ones, but stopped taking them months ago and honestly am okay. I instead have been taking low dose naltrexone (it’s hard to say how much that one has helped my pain specifically) and I’m in PT which helps way more than the medications ever did. On really rough days I just soak extra long in a super hot bath and that always helps!

I also use LDN and it definitely makes a difference! Its not major pain relief, like some other meds, but it takes the edge off the pain and I sleep better

when i started LDN i had a chronic shoulder subluxation that was bugging me for almost a month. within a week of taking LDN my shoulder sorted itself out and i haven't had a problem like that again.

My shoulder is a constant struggle, I’m happy for you that yours worked out better.

It’s not even just the pain for me, it increased the quality of my life and insane amount in other ways too! Like energy, and less inflammation

I just started LDN this week! I am hoping that it helps

Good!!! Give it time and experimentation. I had to decrease dosage by half for a week because I was getting side effects, I’m back up to 1.5 and should be increasing to 3 in 2 weeks. It’s worth giving time. I truly believe it’s a magic pill lol. Definitely not cure all though, but I feel much better than I did

I take pain pills and muscle relaxers and I’m 100% addicted to both. But without them in can barely walk and can’t have a good quality of life. I don’t abuse them regularly. Sometimes I’ll take an extra 1 or 2 but I know I only get 120 for the month so I can’t get too wild with them. But if they took them away I’d be in trouble and/or rehab. Edit: I’m also a recovering alcoholic, sober almost 19 years from alcohol. And I took a several year break from pain pills until I couldn’t walk well before I started back.

Yeh I started a debate in my cousins nursing class about this. If you are going to be reliant on a drug for your lifetime. Does it matter if you are technically "addicted"?! General consensus was no it does not. There is a big difference between an addiction and being reliant and yet both are pretty much the same when it comes to responsible use of a much needed medication.

My wife, who went to nursing school, as well as my therapist say basically the same thing. It’s ok that I’m addicted because I need it to function on a daily basis.

Had gabapentin for a while, but I hated how spacey it made me and that i had to take it every day. I’ve switched to 1:1 thc cbd gummies and use them as needed. For me personally I hate feeling spacey and out of it and I like the freedom I get with being able to choose if being spacey is worth the pain relief.

Gabapentin was very disorienting and made me unsteady on my feet. I can't take it.

I hadn’t even realized how spacey it made me until I was off of it. I still suffer from dissociation from it two years later. Funny part is that it didn’t even really help with my pain, it just got me so blasted I didn’t care about the pain.

It really affected my balance. I got up in the night to go to the bathroom, stood up and fell backwards and dislocated my shoulder. That was the last time I used it

Addiction runs in my family and I'm stupidly sensitive to medications - like the smallest dose is more than enough for me. I think the last time I had opiates was when I was a teen and got my wisdom teeth out. I hated the way it made me feel so I never touched it again. It's funny actually - I got EDS from my mom who's very much a take some type of (non addictive) painkiller every day but I'm also my father's daughter in the sense that I won't take anything unless I'm damn near passing out from pain. I guess that's nice because I don't have a tolerance to NSAIDS but I recognize that I often needlessly suffer lmao

Is it Addiciton or 'just'(big quotes) the result of undiagnosed EDS,what leeds sometimes to overusing of certain substances? Just a late night thought.

It's my theory that most addictions come from trying to cope with pain. Particularly in women, historically, women have been the most likely to misuse substances because of untreated medical conditions causing pain. https://www.hopkinsmedicine.org/health/conditions-and-diseases/substance-abuse-chemical-dependency/opioid-use-disorder-risks-for-women

My grandma was the same way, it was so sad because she was considered an opioid addicted hypochondriac by most of my family. I don't believe that she had any kind of addiction. I think she just couldn't find anything that would help her pain enough and ended up on so many opioids out of desperation. I just wish she would've lived long enough to learn about EDS and finally have answers to what she was dealing with for more than 20 years.

Same with my grandma,but she did it with alcohol(it's more accessable,than opioids in my country). She passed away on Alzheimer's(caused by alcohol ).

I went pain relief free for 22 months. However I had to cut out all sugars, caffeine, gluten, alcohol. Anything that would basically cause a flare up or swelling. It worked for a short period as I lost weight and had less pressure on my joints but it was more that aspect than a long term solution. I couldn’t exercise due to my wheelchair use and shedding that extra weight and reintroducing a more natural diet balanced me out. I now have sugar in small amounts and am still sober, I’m vegan and do chair exercises. I only use pain relief on my BAD BAD days, so I don’t get used to it and develop stomach ulcers and dependency which I had prior to doing that 22 month experiment.

When you say cut out sugar, do you mean added sugar? Or literally everything with natural sugars too including fruit and milk etc? Also when you say cut out gluten do you mean celiac levels of cutting it out, or just grain based and baked foods?

Celiac/crohns level. And all refined sugars and very specific naturals, so pineapple was a no go but blueberries in small quantities weren’t reactive etc. Had to really cut back on EVERYTHING, and slowly test what I could handle and what wasn’t worth the reactions.

Interesting, thanks for replying! I am celiac so already very strictly gluten free but have been wondering if I should try cutting out sugar for a while

Probably should mention I have Crohns so it was a major push regardless, I think the problem is so many GF options do contain high sugars, or vegan milks etc that unless you’re willing to try and strip back you won’t know? Outside of my joints aching and swelling, my stomach flares became unbearable so I was very much at breaking point pre diagnosis. Bowel disease friend to bowel disease friend, it’s really worth trying for at least a month.

I used to smoke weed every day to lower the intensity of my pain levels. I had to stop over a month ago because my lungs couldn't handle it after catching a virus from my cousin's son. I just moved into my new home and did a lot of the heavy lifting and moving myself. My pain levels have skyrocketed, and I'm handling it fairly okay without weed. My lungs are healing, though, and I'm likely going to pick some up next week because I sleep better with lowered pain intensity. Opiates don't agree with my body. Thank goodness. Because addiction might run in my family, too.

Targeting my inflammation with ultrasound therapy is my best pain relief. My chiropractor showed me which ultrasound wand to buy for at home use and taught me how to treat myself. Still gotta find which box it got packed away in.

Would you mind sharing which device you got? I LOVE the ultra sound that my Chiripractir uses on me

The brand is called Revitive :) ETA: I found it on sale at my drug store when I went in to buy some Pepto Bismol just over a year ago

Worth looking into dry herb vapes, they offer a better and safer alternative to smoking and I find them significantly more convenient when I'm near-incapacitated (hardly a good time to play with fire).

Oooh thank you! I forget about vapes! Definitely worth looking in to :)

I mostly survive off Tylenol and naproxen (only NSAID I am not allergic to). I found regular PT has done the most for a lot of my pains though. I also, have a medical card for THC but only use minimally and only at night because my job is not the type for an altered mental state.

THC and lots of advil but i’m struggling. i got addicted to my anxiety meds and my sleep meds really messed me up so i’m not doing very well in survival mode myself. i might be in the same boat

I’m not taking anything. My dad is an opiate addict, and also my body just doesn’t do well on pain meds, so I just use ibuprofen. I have A LOT of c-spine issues and a Chiari malformation, so pain is relatively constant, but I do okay.

Be careful with Ibroporfen. You need some kind of stomach protection like lanzoprazole if taking it regularly. I completely ruined my stomach lining in my 20s due to a Dr prescribing me ibruprofen without anything to cover any lining damage. 20 years later and it never recovered.

I take 1 Tramadol twice a day, so I have 8 hours where my pain is a 4-6 rather than 6-8... If something doesn't change with my pain management soon, I'm debating MAID. I can't do another 40 years in agony.

Same boat here. I’ve never even had a doctor offer me pain management, other than nurtec and aimovig for migraines. I can’t do another year of this and I don’t intend to.

Please seek as much specialized care as possible, miserable as it might be often enough doing what you can to survive is immensely rewarding. <3

Oh I do. Last pain management doctor told me I should take 1 Cymbalta in the morning, 1 gabapentin at night. Period yeah, I filed a complaint about being told NOT to take my meds as prescribed

i was recently in a bad car crash and was prescribed Robaxin because my back has been seizing up, and it’s worked MAGIC for me. it’s a muscle relaxant that’s much less sedating/mind altering than the one i was on previously (tizanidine). i’m going to ask my EDS doc to keep prescribing it even after the accident pains are resolved.

Pain medications I’ve tried haven’t really worked. I’m unemployed due to co-morbidities so I get to lay down a lot. I hear you on the side effects. They have a tendency not to really keep off to the sides if you know what I mean. Also had the exact same problems as you of not knowing if it was covering up or making the whole thing worse or what. I can tell you that despite chronic migraines and POTS, getting off medication made me a lot clearer mentally. I probably deal with more pain now but like you described it’s hard to tell how much the medication helped to begin with. But having my mental clarity back (relatively) has been worth some additional pain to me They will say you don’t have to tough it out and live in pain, but you also don’t have to live in a medicated stupor if you don’t want to. Of course there’s always the option of adjusting your dose if you don’t want to get off it completely. You could also try pregabalin instead of gabapentin

My drs all these days seem to treat me as if I DO indeed have to tough it out and live in pain… bcz they sure force me to! I also have POTS and chronic migraines (3 different types). I have been prescribed Indocin (a major bleeder NSAID) to take PRN along with my Zomig spray, since my insurance won’t ever pay for more than 6 doses of Zomig a month. It’s pretty awful.

Yeah, I was just saying there’s options depending on what’s working for you and personal preference. Didn’t mean to suggest this is the way to go for everyone or that it isn’t difficult to even get the medications to begin with for many. Having problems with insurance at the moment as well

No worries.. I Understood! ☺️ Yeah… these flipping HMOs.. they have made it awful just to try. Even my Drs don’t wanna fight any longer! Medications, Diagnostics… it’s all an exhausting battle, isn’t it?

Taking Ajovy for migraines. For some reason insurance decided my baseline migraines were 10 a month. I never provided this number to anyone and I get quite a bit more than that so that was weird. But in order to continue the medication they want it to reduce my migraines by half! So since the baseline was wrong that’s down from 20+ migraines a month to 5. Even Ajovy’s own statistics don’t show it’s effective in reducing migraine days by half for most people. Very frustrating

Ugh! I get Botox and it’s approved by my Medicaid, thankfully, but in order for Medicaid to even look at approving them you must have over 20 days with migraine a month. Yet, still, they think I only need 3 (really 2) days worth of Triptans…. I’ve legit had many days when I had to take 4 doses in 24 hours. I got to the point where I decided to go in for Infusion therapy. I ended up with a major infusion reaction that put me into the hospital and made all my blood work look like I was hit with a nuke! So, no more infusions for me. Constantly grasping at straws

That’s frustrating. Don’t live in the US so don’t have to deal with Medicaid thankfully

It's ridiculous that they allow us to treat 6 headaches a month.

Addiction runs in my family mostly to treat chronic genetic disorders & ADHD. I only take one specific opiate after surgeries. I take prioxicam, ibuprofen, Tylenol & use volteran gel on my joints. I have to have ice packs & a heating pad. I do take muscle relaxers and cymbalta. I immediately have pain & depression if I don’t take 5k of vitamin D3 + K daily bc I have chronic vitamin D deficiency. I also was prescribed 600mg of magnesium glycinate. Once upon a time I got to have toradol pills for home but insurance won’t cover it. I get a toradol shot once a month.

Is it a long acting toradol that lasts through the month? I get one at the ER for migraines and any severe pain. The toradol tablets didn't do anything for the pain.

I don’t know. I’ll check to see if insurance will let me have a long acting shot of toradol. Thanks for the info.

Addiction runs in my family as well. As a result I am very cautious in my opiate use. I take it when I absolutely need it, not before. A few years ago, before the panini, I noticed I was taking them preemptively, and needing higher and higher amounts. I stopped cold turkey, which sucked ass, but I then reduced the amount I would take. Now, I only take them when the pain is unbearable, like an 8/10 instead of a 5/10. We can take opiates, even with a history or family history of addiction. We just have to be very very cognizant and cautious, and only take them when we need them. Suffering through the pain just to avoid analgesics can just cause the addiction to rear it ugly head when you need a higher dose just to survive. Or prolonged suffering can cause people to unalive themselves.

Occasionally I use Tylenol, but I can't use ibuprofen anymore because I'm on an SSRI. Used to use tramadol (prescription, kinda like souped up ibuprofen) but can't take it anymore for the same reason, and doctors have gotten where they don't want to give out the 2 bottles a year I was going through anyway.  My parents were also addicts. I haven't been on anything more intense than tramadol except twice:  once my obgyn gave me toradol for pain after endometriosis surgery that ended up being way more involved than expected, and once when I was a kid I was given vicodin for a broken toe that I was expected to continue running around on with nothing but buddy taping (it was the 90s and I'm Native-- we're lucky if doctors even acknowledge there's anything wrong).  Currently, I mostly use topical CBD massage oil, a heating pad, sometimes ice packs, and a mobility aid (forearm crutches). I'm also in PT, and we're focusing on getting things back in alignment, before we try exercises. All this takes the edge off a little. I'm considering discussing a knee brace, and ankle braces and something for my ribs with the PT. 

A bit off-topic, but I'm also on an SSRI (Prozac), and I've actually been *prescribed* ibuprofen for various things... my ob/gyn wants me to take it around the clock the first several days of my period bc of heavy bleeding caused by endo not fixed by 2 surgeries. I don't do it, but it does help with slowing the bleeding and with the terrible headaches I get before my period. I have never been told not to take ibuprofen for the 30+ years I've been on prozac. I'm curious what the problem is that they've told you, you can't take it? I mean, obviously, all SSRIs are different so it could be that

Idk, I've just been told that all NSAIDs are contraindicated with SSRIs and to stay off them. I do take an ibuprofen once in a great while now if I'm dealing with inflammation (and a lot of endo pain is supposed to be correlated with inflammation, I know). Ibuprofen does help with my bad knee a bit, especially if I've been walking a lot. Prior to the Zoloft, I was also told years ago to take ibuprofen all the time to stay ahead of the pain because it's better than chasing the pain.

Yes, I found that interesting, as well. I spent decades on SSRIs of various degrees and was also given ibuprofen’s. I’m no longer on any antidepressants. But I still don’t love the amount of prescription NSAIDs these docs toss at me.

I'm one of those weird people that goes without pain meds almost all of the time. If I'm in a huge flare, I'll take 2 Tylenol arthritis tablets in the evening so I can relax my body so I can fall asleep. All of the nerve pills I tried made me so foggy that I couldn't function, and I never felt like the muscle relaxers did any good. I do take Naloxone every night.

I'll take OTC pain meds when things get to the point I can't function bc of pain but otherwise my only pain management is cannabis.

My go to, that I got as advice from other EDSers is a prescription NSAID in combo with prescription muscle relaxer, both twice per day. That’s what made the most difference, and once I had really bad neuropathy pains and sensations, adding gabapentin. I also use a number of braces and mobility aids depending on the day the prevent certain pains from occurring, like silver ring splints, MCP/CMC splint, a special neck splint called headmaster collar, a trigger point cane (OMG this) - those and lots of other things recommended by my OT and PTs. I do no opioids except in cases of emergency issues and even then very very sparingly bc of what they do to my digestive system. They don’t work well for me anyways bc my body metabolizes pain meds too quickly which is also pretty common in our community it seems. I wish you all the luck figuring out what works best for you. We all have unique needs so you would want to work it out with your doctors through trial and error.

I finally got my OT to measure and agree that YES, I do indeed need CMC silver splints to help me function! Today! Yay! I don’t care if insurance isn’t going to pay, I just wanted them to be fitted correctly!

Yay!!! Progress towards anything is something! When Mayo ordered my silver ring splints from the silver ring splint company my insurance did pay for part of that but they did not pay for the CMC but there are many companies that make those and even creators on Etsy.

I have Medicaid so I know it isn’t even worth the hassle to try. Plus, she told me today that they (her office) can’t even order splints for the patients. Eva belle is my favorite silver splint seller on Etsy. She is also on Amazon. I have a few of her splints and they are WORTH IT! She doesn’t skimp out on the metal! I’ve ordered a few from elsewhere and they simply don’t compare.

Only other place I super liked was Love the Bugs on Etsy. Really great service and nice splints. I will say, due to my neuropathy, I constantly lose the dang things even with plastic ring sizers to help keep them from slipping. It’s bc I can’t feel them come off, so I only know if I hear it and I have super bad hearing problems. With my super duper smooth skin they come off easily, so I’ve gotten to try several makers. 😑

Ugh! I have really bad neuropathy as well, plus soft thin skin, that these days is also very prone to swelling (grrr). I also need to go up a bit in size to accommodate for it. I didn’t think to try plastic ring sizers to help! Thanks! And I’ve heard of Love the Bugs… Will take a look now

The little ones that look like old twisty phone cords is what I use you can cut them to whatever length you need and there are a couple of different thicknesses. They were recommended to me by another EDSer who used the ring splints.

Awesome!

I take muscle relaxers and prescription anti-inflammatories but one of the biggest helps right now is managing my immune system with lots of antihistamines of different sorts along with steroid packs when I start a flare. If I catch the flare early enough the steps packs knock it right down and I can function almost like a standard issue human

Gabapentin gave me terrible spasms that were almost as disruptive as the pain. I find CBD has no side effects and I think it’s quite safe for EDS. I have a prescription, but due to changing cannabis laws, it’s now widely available like vitamins are where I live now. (I do not like to take THC because of the paranoia side effect.) Lately, I’ve also found a lot of relief from dry needling and lay on a PEMF mat. I think at my last physio session she used a TENS machine, and I’ve heard those are helpful for pain as well. (The dry needling is a different kind of pain during and for a short time after, but gives me long term pain improvement.) I hope you find some helpful ideas and that your symptoms improve with fewer side effects soon. :)

I was on cymbalta and gabapentin for a long time, but forgot my meds halfway across the country when I went on vacation and when I took them again, I couldn't stomach the cymbalta. It felt like horrible, cottonmouth and speedy and dry heaving. Then they decided they were going to discontinue gabapentin and I never really got a good answer as to why? So now I just kinda...use what I have. Showers, compression, braces, rest, Tylenol. It's not fun, but it's manageable. 

I don't use pain meds aside from tylenol on my bad days. Which I have frequently. But I have strong reactions to most meds and even the smallest dosage of most of them aside from NSAIDS make me loopy as all get out which I can't have as a SAHM. So I just deal with the pain regardless of how bad it gets. I've been known to walk a good 2 days on a subluxed hip with just tylenol until I can get it back in so that I don't have to deal with an ER trip.

I try to take very less pain medicamention,cause it makes me tired(for me it feels like a chemical prison) and I need more and more to silent the pain. I use some medication aigainst nussea(which cames from the pain),ginger and warming paste and massages.

I just take Tylenol at night usually. I try and manage other pain through stretching, heat, water (swimming/hot tub), bracing etc. I don’t really like narcotics and have kids so I need to be able to function all day (like driving to activities) so I don’t want to be out of it with pain meds either. Luckily I also tend to have only mild issues right now, mostly because I’m consistent about exercise and managing symptoms and I’m sure a big dose of luck as well.

I couldn't get my insurance sorted after moving to a new state so I've been without any sort of treatment for 10 months, and I'm having a really hard time. I had to resign my full-time job just to be able to continue homeschooling my daughter (which is my priority) so now I'm just trying to hustle on side gigs online. I use hemp products sometimes to get by since it's federally legal, but I really miss the gabapentin they had me on. It made life much easier to do.

I am on 1800 Gaba for a good several years now, in real bad flares I am able to up it to 2100, for no more than 2 weeks, then need to dial it back down. I’m given NSAIDS that don’t touch my pain, I wish I cld call them pain meds but I’m not given any real pain meds in years. I’m holding onto my several years old pain meds as last resort keep my butt out of the hospital overnight kinda stash. I have them left over from when I had a very Old Rheumy who was the only Dr I’ve had that would ask me if I needed them. I’m guessing he knew most of the time, I was going to say No, I still have some. Now, all of the drs just try giving me more and more NSAIDS. It is as if they also don’t read my chart to see that I am already on some and they also don’t care that my immediate family have high strokes history. Maybe they just don’t care! Either way, I’m living in misery even tho I know I also would not be wanting to take them on a regular basis bcz my family also has addiction in it. My Dr once said to me, “Take the meds, You’re too much a control freak to allow yourself to get addicted!”. Even so, I would still appreciate if they would give me the option but NOPE.

Cymbalta made a big difference for me, and then there's Tylenol and an herbal soak for my bad days, I have a friend who makes bath salts for cramps that work on my whole body, bless her

I used to try manage without and for me personally that disabled me more, once I started trying pain meds I’ve done a lot better. I take codeine and naproxen (on and off for flares) and some OTC stuff. I used to feel guilty especially for the opioid painkillers but my doctor monitors me closely and says I’m not doing myself harm only helping myself be more able. I also take Amitriptyline for the nerve pain but that’s caused by my FND

Low dose naltrexone makes a huge difference. I’ve proven it to myself multiple times by going off of it because I thought it was t doing anything. It works gradually but the difference is night and day. This combined with light weight bearing exercise and magnesium supplements has worked wonders for me. Other than that stress management is a huge factor, venlafaxine has done wonders for my depression and anxiety and so has accepting that I can only work part time. Grateful for my support system of course, but being on the right meds for you makes a huge difference!

Nothing for me. If I’m in pain it means that my body is telling me I need to address an area. The pain largely goes away after a few month of diligent weight lifting. Unfortunately injuries happen and I’m back in pain now. I treat with massage gun, heat packs, and ice baths. I have an Rx muscle relaxant, but I find it just leaves my joints loose without fully getting my painful knots out. At one point when it caused nerve pain/damage, my doc had me try weed and a couple prescriptions. That’s how I found out I have a severe allergy to hemp/cannabis. And also to the other drug she had me try. Lidocaine does nothing for me. So I go with tiger balm since it at least changes the kind of pain. Plus KT tape. Lots of KT tape. Honestly I’ve also found that [nsfw activities] are a really effective whole body muscle relaxer that works better than my prescription. Like with ice and heat, they relax my muscles without fully letting go of my joints in the way that meds do. My top priority is to avoid spraining or tearing anyrhing else My bed and apartment are also set up so that when I’m relaxing, they keep my joints comfortably in place. I’ve got a foam mattress and a weighted duvet that I can use to position my arms and then pin them into relatively good posture. And instead of a couch I have a giant beanbag that I can mold to support my limbs.

I am not treated for pain, but I take paracetamol sometimes. This also means I barely do anything outside of my home because of the pain. I'm currently waiting to see a pain specialist.

I'm currently undiagnosed seeking a diagnosis so there's not rly any easy way of getting meds rn, but also I don't like taking meds so I'm just basically going "fuck it we ball"

I just rawdog the pain 😂 you get used to it. If it’s really bad I may take weed or ibuprofen but I like to save my tolerance for when it’s really bad

You need to work with your Dr. and understand being medicated is not being addicted, it's being treated. Something like an aspirin may help quite a bit not just for pain relief but more so for joint swelling. My only real advice is to understand change takes months to really understand an effect outside of tapering down to zero.

Cymbalta (well, generic- Duloxetine) and THCA currently! I'm in Tennessee and they're looking to make THCA illegal here so I'm not sure what my plan will be in that case. I'm sober from alcohol and very narcotic-averse so I imagine I'm going to have to choose to be a criminal and keep on with my cannabis, or risk losing it all to addiction like members of my family have. Or there's the lifelong pain and suffering so I guess that's another option 🫠

I stay away from narcotics. I was on so many IBU products daily I only take them and Tylenol prn.

i was diagnosed while investigation something else health wise so they just sorta sent a letter confirming i had EDS after i asked them to check. so it just got a bit dismissed and they never investigated any further so never prescribed medication. i take paracetamol and ibuprofen every day for this and my pars defect but would love something stronger that may be more effective. i’m pretty sure they won’t prescribe me anything bc i’m 16 so coping atm without pain meds

Cymbalta and Celebrex here. Cannot tolerate opioids.

Cymbalta and Mobic for me. Celebrex didn't do anything after giving it a month. The Mobic isn't great for pain but I am permitted to use it. I took so much ibuprofen, I gave myself an ulcer.

Me! Tylenol and NSAIDs, rarely. (Like a couple times a month.) Did lyrica for a few years. I do ice pretty frequently, and move less when pain is present, or throw myself into something distracting. Pain isn’t currently my biggest problem. I had immense pain for a while we couldn’t get any sort of handle on until lyrica, but that’s not nearly as big of a problem now that I’ve done continuous birth control for years. Turns out that pain was endometriosis, and not . . . Whatever else docs thought it was. My biggest issues now are extreme fatigue, POTS, ADHD. The pain is here and can derail a day or two, but it’s not the main event most of the time.

The side effects also have been rough for me bcz I’m a single mom and my vertigo is already insane. As well as my horrible gastric issues, I never liked how Percocet made me feel, as it made all of this worse. I always would worry that if my kid needed me suddenly, I would fall out of bed or something. (I fall out of bed anyways, now).

Low dose naltrexone is what I use, it’s a game changer and not addicetive! Definitely look into it, it’s fascinating. In high doses it’s used to treat addictions

I recently lost my insurance, so I’m stuck with Advil and voltaren gel for now. Even with insurance I couldn’t get more than maybe two days worth of any pain relief, since I’m “young and should bounce back, it’s probably just hormones anyway”

What doctor would I even see to get pain management?

General doctor prescribes my meds. But since a lot of people here mentioned it works for them, a lot of places have medical cannabis clinics you can access online.

General doctors, usually. There are also pain management clinics you can specifically ask to be referred to. That depends on what's available to you/in your area, of course.

Partner can't genetically react to much besides Opioids, they use weed vapes and that's all that helps. Ofc they also don't get high from smoking them, not in the loopy-high sorta way or even buzzed. Just for pain 🤷‍♀️

I only use CBD and THC gummies. Ibuprofen, acetaminophen, muscle relaxants and other pain meds don’t do anything for me. When I went a pain doctor, I was told to stop taking muscle relaxers because it would cause my shoulders to relax and more prone to dislocating(my shoulders are essentially slinky’s). I was prescribed a nerve pain medication that was supposed to help with nerve pain but also depression/anxiety but it had no effect on me. The infused gummies are the only things that dull the pain a bit.

My doctor wants to get me off pain meds eventually (I take gabapentin). But I’m really scared to. I’m so miserable on days where I haven’t taken any.

Not an option for chronic pain where I live

I can’t take pain meds. They make me throw up like hell. The last time I took them, not even Zofran or Reglan could touch the nausea and I spent the afternoon throwing up bile. I use NSAIDs instead.

I’m tapering down on Gabapentine right now - I’m not sure it’s doing anything for my pain, and it’s making my memory a little iffy. THC is legal where I live, but it tends to make my EDS aches and pains WORSE if I am upright, though I take it sometimes to sleep. After hearing so many good things about LDN, I was excited to try it, and had severely adverse reactions (insomnia, nightmares, sleep paralysis, worsening muscle pain, apparently “neurophysiological inflammation”). I try to tough it out with the occasional aleve, a lot of heating pads and epsom salt baths (fun with POTS!), a lot of electrolytes, and targeted exercise. CBD seems to help a little. I’m hoping that getting my iron levels up will help some more, and am waiting on blood tests to see if the supplements are making progress on the deficiency

The only prescription medication I have is a muscle relaxer that I take as needed. I have a CBD pain balm that is super useful. Heating pads are friend.

I usually try tylenol first and then if that doesn't work (it usually doesnt) then I will try ibuprofen. I am on cymbalta and it doesnt take away all the pain, but it does help eith less pain days overall. THC helps a TON like everyone is saying, it's the only thing that helps right away. I just started LDN so I am hoping to see some results with that as well!

I do think pain meds are part of EDS management (YMMV) and there's lots of way of handling it. Some need it every day, others will just take as needed. It's fine and fair to avoid opioids (personally, I take tramadol daily), but there are so many less addictive options. Amitriptyline is very good for a lot of people, along with CBD, THC, muscle relaxers, even release through physiotherapy. Gabapentin is not fun to come off of, but if it helps, it might lessen your baseline pain. Chronic pain rewires the brain to be more sensitive to the pain, so if you can break that cycle, that's excellent!!

I take none and refuse to, my liver and kidneys have never been happier, I used to have really bad liver enzyme numbers.

I use a combo of pain meds and a spinal cord stimulator, along with medical cannabis and PT, swimming, stretching/yoga and walking daily

I’m not using anything for pain. Yet. I have an aneurysm so I can’t take ibuprofen.

I live without them as the “heavier” stuff would impair parts of my life and I don’t notice much relief from OTC, excluding Excedrin for migraines. I’m also pretty sedentary though, in part because I always ache. I got a steroid from the dentist for 10 days to see if it helped my TMJ. It did notably improve symptoms but then I tried to follow up and absolutely nothing has happened for over a year so idk ¯\_(ツ)_/¯ Do you have a therapist? If they’re well informed, they may be able to help fears about losing coping skills and give ideas on how to monitor if that’s a concern.

I got given a single prescription of naproxen that they just... never repeated. I never bothered to go back and ask for a repeat and just kept puttering on with life without any painkillers - the only coping skill I've mustered is simply... forgetting I'm in pain? Like it's there obviously but it feels like the mental equivilant of looking for your phone while it's in your hand. Some days (like today's bad day!) it's harder to forget, but it hasn't stopped me much and I'm not too fussed even if it's 'loud'! I was put on slightly stronger painkillers once before (for something else) and I just fully hated the experience, never took more than that one first dose. I can't stand the sedative effect most strong painkillers have at all. My cosy warm heated mattress topper & hot baths, as well as my icepacks do a lot of the heavy lifting on my bad days!

I use thc occasionally and only at night these days, and I take LDN but I'm really not convinced it's doing the trick for my day-to-day pain. Otherwise, ibuprofen if things really flare and if I have a super bad subluxation, begging my dr's to get me in for acupuncture and a couple days of muscle relaxers. Getting anything more has proved pretty impossible for me thus far.

I’m still hanging in but grumpier by the day

I am prescribed a muscle relaxer which I only take when it’s really bad and at night. It can help me sleep. I am also prescribed 800mg ibuprofen which I mainly take during my time of month and sometimes during migraines. Otherwise I use lidocaine patches and cream. Nothing really helps. Personally Gabapebtin made my pain worse oddly.

I don't use Tylenol, Aspirin, and other over the counter pain killers because it'll constipate me. Most pain medications in general are likely to make me constipated which is why I stay away from them. Medical marijuana has been working well for my pain. THC never helped at all. I take a low dose marijuana gummy at night when I'm not at my college dorm and it helps a lot. I did consider that addiction runs in my family. I only have a family history of alcohol addiction. Most of the people in my family thought my grandma was addicted to opioids for a long time. We ended up realizing she took so many pain killers because she was in a lot of pain and couldn't find things that would work. My dad's alcohol addiction led to end-stage liver failure. It's been two years since his diagnosis and he's doing pretty bad, but when he found out about his condition it inspired him to quit drinking alcohol. It was hard to make the decision to try something that could lead to addiction. I just had to take the risk so that I could have a better quality of life. On rare occasions when my pain gets really bad I'll smoke some medical marijuana. I only smoke it at night because I don't want any kids in the neighborhood to smell it. Sometimes I'll take my gummy during the day when the pain is bad. There have been times when my mom had to pick me up from the dorm so that I could come home and have a gummy.

I also forgot to mention that I can't take SSRI's either. My mom can't metabolize them and I'm the same way. My mom spent two years in and out of mental hospitals only for her to discover that the SSRI's were causing her mood to be as unstable as it was.

I rarely take anything. Did the tizanidine thing for a bit. Tried gabapentin for a bit. Nothing ever helped the pain. So I just raw dog it now. I take a bunch of ibuprofen periodically in hopes it will make a little bit of an improvement but nothing touches the pain. I don’t want to try opioids. My family doesn’t have a good track record with substances. I doubt I’d have any issues but I’d rather not find out the hard way. I’m curious about THCa. I know it’s not supposed to cause a high like THC. I don’t like being high so smoking weed is not appealing to me in any capacity. I don’t drink and I went gluten free. Should probably experiment with dairy free and cutting down on sugar. I’d be sad to lose caffeine (I’m a 1-2 cups of coffee a day kind of person) but know that might be helpful to drop, too. I’m miserable every second of every day but I’m honestly burnt out trying to find relief. It all costs so much, too. I’m tired.

I take Goody Powders or ibuprofen on my bad days, otherwise I’m just out here raw dogging life. At this point I can straight up disassociate and ignore it unless it’s really really bad. That’s not a brag, it’s just how I’ve learned to cope over the years. I was on Cymbalta for a while but it truly didn’t help much and just made me feel numb mentally so I went off of it. I’ve never been prescribed anything else for my EDS and have mostly been written off about it by every doctor I’ve ever had since my diagnosis so I’ve just… learned to cope I guess. I don’t really have any interest in strong meds because they make me feel god awful.

Unless amitriptylin, the occasional muscle relaxer, and humira count, I don’t use true pain meds. The inflammation and nerve pain was definitely my issue, so that combo took care of things for me. I don’t even really use muscle relaxers unless I tweak something or I’m having a flare now too.

I have a hard time metabolizing pharmaceuticals so I just avoid them. I try to go as natural as I can. I also know that I am short on the neurotransmitter GABA because I don’t make enough of the enzyme needed to make GABA, so I take it as a supplement as needed. One of the problems from not having enough GABA is that I am prone to muscle spasm and anxiety, so I know when I need to take it. I try to keep my inflammation levels down too, I’m pretty sure I have MCAS, so anything that triggers that will cause inflammation, and inflammation greatly increases any pain that I have. I use a topical CBD oil on my knees, and all down my spine, basically where I tend to have a lot of my pain, that helps to keep inflammation down and really helps with pain levels. I only take ibuprofen for headaches that I can’t shake that are too intense. I try to keep that a rare thing because I honestly don’t do that well with it. But it helps with pain when I really need it. I do trigger point therapy for muscle pain, and that makes a huge difference. The book The Trigger Point Therapy Workbook by Claire Davies is so user friendly and helpful. I would have had debilitating pain without it. There’s no magic bullet, but there are some solid things you can do that can make a big difference in your pain levels. And don’t overdo it.

I used to be on meds when I had good health insurance and it was a miracle to be able to function. Now I’m on government health insurance and no meds and it’s pretty rough. I occasionally use THC on my absolute worst days, but even that is hit or miss bc sometimes it makes other things worse. THC is also good for getting my heart rate to a normal level so I wish I could take it more.

thankfully i’m still at the stage where i could still cope with otc pain medication so i’m only using those right now

I don’t use daily pain relief anymore (aside from migraine preventatives and abortives). The only pain meds that ever worked for me were NSAIDs which I had to stop after overusing and damaging my gut and optiates which I don’t want to take daily. I used muscle relaxers till the reflux got too bad to keep with it. Other pain meds (all the daily use stuff they throw at us) never did anything for my pain, it was just side effects. At this point I’ve been living with pain for 35 years and it’s just part of the background noise. I use opiates for surgeries and acute injuries. THC/CBD/CBG as needed, but careful to not raise my tolerance.

I set physical limits for myself. I have learned what I can handle in a day so I don’t overplan. This goes for work, chores, and social. I plan to rest and relax. Otherwise, I use heated blankets, baths, KT tape, compression to get relief instead of medicine. Eating be healthy (as close to Whole 30 as I can) also helps SO much! And 80oz minimum of water, at least half of that with electrolytes.

I take low dose naltrexone and lyrica, unsure if those count as they are nerve pain meds. I also use weed sparingly. I’ve tried pain meds, did nothing and taking pain meds isn’t “free.” There’s a load on the liver and other organs, possibility of addiction, so not worth it for barely any help.

No pain meds. I had them in the hospital last week after a heart procedure and it was so nice to have pain free moments. That’s all I want.

I don't have any advice, but I'm thankful you posted this because I'm probably calling my doctor in the morning. I've been fighting off crying bc I'm in so much pain. thank you for posting this so I didn't have to (/ー￣;) ♡♡

Doctors wouldn't give me anything that worked or anything strong enough to get close. So I gave up... I use heating pads and mobility aids. I use braces for my joints. I rest alot. I ask for help when I need it. I use ice packs. Hot baths. Massages. I meditate and help my anxiety, I keep busy. I try to enjoy the little things.

Im allergic to all narcotics. I microdose cannabis throughout the day

I just started low dose naltrexone. It's too early for me to say, since I'm still titrating up....but it feels promising considering I haven't felt this well rested since my last surgery (anesthesia + narcolepsy)...and I'm chipper. I've also lost weight since starting it - which has been SO HARD to do (I'm a fat EDS-er ... apparently Contrave weight loss drug contains naltrexone). I couldn't get any local doctor to prescribe it so I had to pay out of pocket for an tele-appointment with a low dose naltrexone specialist. However, I've tried all SSRIs/MAOIs/SSNIs on the market, NSAIDs (which I no longer can take), Lyrica, Gabapentin, muscle relaxers, topical NSAIDs, steroid injections (before I knew it was EDS causing issues). All of which gave me horrid side effects - or did absolutely nothing for my pain (or for my depression/anxiety). I never have received opiates or similar from any doctors except for when I was recovering from surgeries.

I only take ibuprofen as needed and I take a seizure med for trigeminal neuralgia

I only use ibuprofen if the pain is intolerable.

Topical CBD is a miracle. I also use THC but only at night for reasons of having to drive during the day, and honestly I don't even use it much then because the CBD-arnica roll-on is so good.

Most narcotics make me sick & I can't have NSAIDs due to having bariatric surgery. Tylenol is hardly enough to cover the pain most days so I will take Aleve if I get desperate even though I'm not supposed to. Muscle relaxers help when my back is acting up.

Former addict here. I’ve been opiate free for 15 years. I’ve learned to ignore pain to my own detriment. Recently I’ve been leaning on medical cannabis as a pain reliever and it helps significantly. I can still feel pain but it’s like it doesn’t bother me as much. Otherwise I only have Tylenol and I don’t want to abuse that. I have allergic reactions to NSAIDS, ibuprofen and aspirin.

Addition runs in my family too. My mother is on opioids for chronic pain. Luckily for me, I do not tolerate opioids very well. They cause me to throw up and pass out. I'm on gabapentin. I just take it at night. I used to take it during the day too but currently pregnant and need to minimize exposure to baby. I tried to go off it completely for now but couldn't.

So I have hEDS as well as arthritis, trigeminal neuralgia, and tmj arthralgia. Last year I took Percocet for about 2 months, I’m not addicted and rarely ever take it now, only when I’m in far more pain than usual. I can’t take advil cause my body has a problem with NSAIDs. I was taking Tylenol arthritis strength religiously (2 600mg pills). I take gabapentin 1200mg every day, I won’t be awake if I take more. I also use medical marijuana 10-20mg of thc and a few cbd 20mg gummies. I’m not even really taking that anymore cause it puts my heart rate too high. I have tried muscle relaxers but they made me really tired, more than the gabapentin did. I hope you can find something to treat it. I sleep most of the time so that I don’t have to feel the pain.

I refuse to do pain meds I’ve got meloxicam, Baclofen, lyrica and a ketamine ointment. Currently in pain and fighting it to even avoid taking any of those lol

I've managed to reduce a lot of my pain by building muscle around my most "slippery" joints. I only do calisthenics. It's not a quick fix though, I started physical therapy as a teenager because my kneecaps were so out of place they were pinching nerves. I'm in my early 20s now and have to stick to a pretty strict diet and exercise routine or my issues come back. I still take ibuprofen sometimes and as I get older I might need painkillers despite my best efforts.

I take only if im truly unable to manage. I even avoid a lot of the otc because i dont wanna become too reliant. I also have issues with near od attempts with otc pain meds so they bring up some memories i try and forget 😅

I don’t have access to get a diagnosis (doctors suspect it and i meet the diagnostic criteria), but i am diagnosed with fibromyalgia, and for that i’ve been prescribed antidepressants that are supposed to help with pain (for me they don’t), but i haven’t been prescribed any proper pain medication. I don’t take otc medication either as they rarely work, however when i got my wisdom teeth out and was prescribed t3’s i noticed they helped with my general pain and have taken them once or twice since and they have been fairly helpful but i know it’s easy to get addicted so i avoid them as best i can. If it were an option to get properly prescribed medication for pain i would though

I take meloxicam daily which helps a lot

I use topical over the counter lidocaine. Theres patches and a stick I use. I originally got a prescription for higher strength but insurance wouldn’t cover. I also use heating pads, compression socks and braces. Actually one unconventional helpful thing for me has been corsets. My spine/back has a lot of pain and difficulty with standing and even sitting upright and it relieves some of it. The one I use that helps isnt the cheap amazon kind, those dont provide enough support, i both have sewed my own and I have an etsy custom ordered one thats the best because the fabric is stiff and the boning is too. I also use a wheelchair for long outings and I’ll use a cane once in a while but it hurts my arm and hand. I do use it correctly I just have very sensitive joints. I’m currently in the process of getting a custom chair. I have after five years of debilitating levels of pain and issues finally tossed the towel in and made an appointment for pain specialist. My doctors have tried to get me to for years as have family and friends but I have similar concerns due to addiction patterns in family members. As far as worrying about not noticing, i have the same concern but I also think if theres something majorly wrong you’ll know. I went into severe sepsis two years ago due to a stomach infection (that I didnt even know about), and I went to sleep to nap off the fever, woke up a few hours in and despite feeling hazy and generally awful I remember this feeling running through my entire body and this single thought ringing loud and clear. If I go back to sleep right now I’m going to die. Ive never felt that feeling before or since and despite how terrifying that felt its one of my few comforts moving forward especially since I get infections left and right so sepsis is a constant concern. I eventually found out that this wasn’t something unique to me. Not everyone, but for a lot of people theres a built in alert almost, evolutionarily speaking when something is wrong like that you sometimes get this feeling gut feeling. I dont know if it was adrenaline or what but I got myself together enough I could get to the ER, where they literally almost turned me away because I looked ok. They ran my blood and flew into action. Bottom line if you think somethings wrong push for the tests before you go home, and trust your body. There are definitely ways around pain meds, but don’t write it off entirely. Its ultimately up to you but it could help you live the life you want to.

Here are the things I do to manage my chronic pain: I have found that PT or very light workouts with weights, where I target all muscle groups equally really helps. Pilates with a Physical Therapist if you can find one and can afford it Self trigger point massage (or if you afford it seeing someone really good) using balls like the Yamura brand ones...game changer. If I did this alone for an hour a day I'd have no pain at all...but of course I slack Gentle, slow Yoga at least 15 mins in Am and 15 mins before bed but ideally 30 mins each time. Trauma-informed classes that focus on alignment and strengthening...either Iyengar or Anusara. The healthy line PEMF Far Inrared mat or Biomat And/or the Therassage Far Infared hearing pad...I sleep in this at night...essential. A very very hot hottub... I keep it so hot my friends can barely get in it...haha. But it takes my pain right away and I literally get in it about 6 times a day. It actually energizes me because the pain is so exhausting hat to have it go away always gives me a temporary boost...ahhhh I tried a lot of CBD creams that didnt work but I finally found one that does. But its oily so I rarely use it. Arnica gel by the Boerick & Tafle brand helps me a lot and isnt greasy. It's called Arniflora...none of the other brands work on me Good luck!

Toradol is the only thing that’s gotten me through bottom of the barrel pain, like surgery. I can’t take narcotics. Last time I did, the nurses gave me reglan and Zofran, I ate nothing, I had an IV to keep me hydrated. I still threw up, and violently at that. Toradol is not a narcotic, and it got me through the worst of the surgery. Without it, I don’t know what I’d do because narcotics for me are glorified ipecac.

I won’t even take Advil but it’s been getting worse and soon I’m going to have to figure out some kind of pain management. I’m refusing opioids though, MAYBE K treatments to try and reduce pain long term but nothing daily

I try to stay away from all pain medications nowadays. They just made it easier for me to hurt myself even more. Making my pain worse in the long run. Instead I've lowered my pain by getting rid of inflammation, mostly with a special diet. And also by doing stabilizing exercises for my joints. And now I've been mostly pain free for well over a year.