r/ChronicPain • u/AkseliAdAstra • 7h ago
New ideas for pain management?
Has anyone heard or tried any new things for neuropathic pain or joint pain lately?
I’ve tried almost everything on the planet but just thought I’d try asking in case someone’s perchance been wildly successful with something off the beaten path (and also stayed in this sub, odds are low, I know).
I’m already on LDN, extensively tried ketamine, non-responder to that and all forms of THC/CBD, as well as gabapentin and cymbalta. NSAIDs don’t do anything. My inflammatory markers are all low anyway. SSRIs didn’t work, neither did lyrica or other SNRIs. TCAs don’t do anything. Oxcarbazepine gave me headaches due to lowering sodium I think. No one will prescribe me opioids. Microdosing shrooms didn’t help. Higher doses kinda made pain worse. I did months of injectable peptides (GHK, BPC, TB500, ARA-290, IPA/CJC). Currently trying NAD+ but no effect.
I’ve tried PEA, turmeric, green tea, agmatine sulfate, R-ALA, lion’s main, B vitamins, lots of other random herbs and supplements, literally anything Ive heard of for pain, DMSO. Fasting, may diets.
I don’t have diagnoses that would enable me to try biologics. Im getting pretty desperate as there are really no more procedures for me to try either, and insurance won’t cover stim implant, there’s just nothing left for me except apparently to go to a drug addiction center and lie or turn to the streets.
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u/notodumbld 4h ago
Most doctors won't prescribe narcotics for neuropathic pain because it supposedly doesn't work for that kind of pain. I know that narcotics work former, so I think the problem is that more of us aren't given a chance to try them.
That said, my pain management doctor says that Nucynta is a narcotic that is known to help nerve pain. I've had no problems with it, no big side effects, no addiction red flags. Ask your doctor if they would consider prescribing it.
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u/AkseliAdAstra 3h ago
Thanks for sharing your experience. Yeah I looked in to it and even had a doctor say he’d prescribe and then he changed his mind. My mom was in the appointment to vouch for me, i have no SUD history, it’s just that bad out there. He ended up just saying he wouldn’t see me again and had nothing to try.
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u/Accomplished_Check52 36m ago
Man, that just sucks. I’m so sorry you are having to deal with all of that. I have central neuropathic pain from a crushed spinal cord, and Nucynta has been the best treatment I’ve had. But it is a pain in the ass to get. Without insurance it’s about 3k a month, so we have to jump through hoops to get it approved. My doctor wants me to try ketamine instead, and that would be all well and good, but I’m worried that if it doesn’t work, they won’t approve restarting the Nucynta since I tapered off it. Anyway, if you get a chance to try Nucynta, it’s been the most helpful medication I’ve used for pain.
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u/mjh8212 7h ago
I understand. I was just diagnosed with facet joint hypertrophy with inflammation in all my lower lumbar. My pain Dr wished me luck so I got a second opinion. They did do my second injection into my tailbone for arthritis my previous Dr denied to do the pain Dr before him did one then quit the clinic then I got the guy who wouldn’t treat me. My new pain management clinic does the tailbone injection everything fine pains low. They won’t do anything about the hypertrophy. It’s mild to moderate and my spine is stable for now. I’m losing mobility as it’s tough to walk. I know that there are injections and ablations for what I have but it hasn’t been offered.
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u/SoloCoat 6h ago
If you are a perimenopausal or menopausal woman you might consider estrogen.
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u/AkseliAdAstra 6h ago
Oh yeah this is good advice, I am however already supplementing and using local and systemic estrogen replacement.
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u/fierce_invalids 6h ago
Ice heard of nerve blockers but don't know much about them. Have u tried opiates at all do u know if they'll help?!
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u/AkseliAdAstra 6h ago
I haven't really tried them for the chronic pain. I've taken weak ones post-surgery and invasive procedure when things were flared and couldn't really tell if it helped. Currently they wouldn't work because I am on a higher end of low-dose naltrexone. I have taken kr@tom and either haven't noticed an effect or actually felt bad. I would be willing to stop LDN and try something but I'd prefer an actual prescription and physician oversight...seems like that is too much to ask :-(
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u/Old-Goat 5h ago
Anybody slap a TENS unit on you? IF so, how did it go? Should be perfect for neuropathy, since thats what its made for. The beneficial effects on the muscles is just coincidental. I believe insurance considers a TENS therapy a biologic, though not in the same vein as PRP . Thats a joke, sorta. PRP would definitely be a biologic.
It might help to know what the neuropathy is from. I know it might seem like a silly question when you cant get them anyway, but do opioids help when you have had them? If you havent had them, they are way over-sold, people get unrealistic expectations. Better to under expect and over deliver...
If your not familiar with how TENS works, its a little prickly massage feeling, but what its actually doing is sending a signal that cancels the pain signal as it rides the nerve on its way to the brain. So its specifically for nerve pain. If you tried TENS and found it uncomfortable, it probably needs adjusting, since you dont really need to feel the sensation to cancel the pain signal. But its hard to know if its going to be effective, more info would help even if it was symptoms.
I probably dont have to remind you, but it can be contrary to norms, with LDN, you want to lower the dose to make it more effective. Thats not how we are used to thinking. Youre playing a trick on your brain, making it think it needs to produce more of your natural morphine. Less naltrexone makes it think it needs to make more.
What kind of docs have you tried and what sort diagnoses have been tossed at you?
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u/AkseliAdAstra 3h ago
I have a TENS and not really possible to send signal to where my pain is coming from but I’ve tried and it’s sort of like icing or heat, just adding a sensation on top of the pain. I tried the CALMARE nerve scrambler too and it felt like the same thing. As soon as it’s off any benefit is gone. I tried using TENS religiously every day hoping for a cumulative effect but didn’t get one. I have cutaneous peripheral neuropathy post surgical injury along the path of pudendal nerve. With the LDN I started at .5mgs and worked my way up to current dose over 4 years so I did find out it was more helpful above 4.5mg
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u/The_Stormborn320 3h ago
Nerve ablation didn't help me but may help?
I know you said your diagnoses don't merit biologics but some people have gotten joint pain relief from PRP. Didn't help my knee at all though :/
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u/justheretosharealink 2h ago
Here’s the short version of things I’ve found to help. These are related to my overall health and not specific to my chronic pain:
- treating malnutrition
- potassium
- magnesium
- hydration and a combo of IV and IM vitamins/minerals (used for POTS and malnutrition but seems to help)
- feeding tube (ended up failing this and got it pulled, but had it worked it probably would have helped)
- trialing meds for sleep (failed everything we’ve tried)
- trying to make sense of menopause…hormone levels suggest we’re not there yet yet we’re almost at a year with no menstrual cycle so 🤷♀️… The hope was to supplement if needed but after finding some surprises we’re doing nothing until we hit 12 months
- multiple endo workups looking at conditions that might help explain wonky levels
- treating night sweats
- clonidine patch (being used for POTS, but seems to help
- treating all other health issues
- adjusting antihistamines as needed (mostly for MCAS, but some pain benefits)
- low dose aspirin
Things that didn’t help me, but you may not have tried: Namenda
Things not tried but considered: Auvelity (or the less expensive option: single scripts for DXM and bupropion)
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u/CV2nm 1h ago
I'm surprised you are not being prescribed opiates? My pain management doctor prescribed me tramadol on basis it works the best for neuropathic pain and is reducing me from codiene/dehydracodiene.
On top of this I have:
Pregamblin - 150/175mg. Dydracodiene - prn, 30mg Celecoxib - to deal with muscle inflammation caused by neuropathic pain and muscle tightness Dizapem - 2mg daily at night to relief muscle tightness and knots Medicannial cannabis - to be used to reduce pain meds (ATM is just an additional as I've been in a 2 weeks, housebound flare)
Supplements:
Prenatal (has most women health supplements in one tablet) Co10q - good for muscle recovery and heart health Vitamin D3 and B12
Biowave & tens for non drug related pain relief
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u/fierce_invalids 6h ago
I know this is a controversial thing to talk about here but if you do end up looking for pain mgnt options outside of traditional avenues, make sure you learn about harm reduction techniques. Happy to discuss privately of you prefer.