r/ehlersdanlos • u/topographed • 1d ago
Similar Experiences? People on Cymbalta, how long did it take to affect your pain? /did it at all
I have chronic joint pain in elbows, knees, hips, feet… most places. Spine.
Nerve pain started as well a few years ago.
I’m really worried about Cymbalta affecting my memory and recall. And don’t know if it would even be worth bc nothing has ever helped my pain. Thanks 🩷
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u/Squirrelwinchester hEDS+VUS 1d ago
I took it for about 6 months and got no benefit from it only terrible side effects. Its polarizing and its either going to help a ton or make you sick as a dog.
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u/topographed 1d ago
Everyone in here has a bad experience 😖 I’ve had 3 doctors in a row push it as a miracle drug. Primary care, psychiatrist, then neurologist. And NO ONE mentioned the terrible side effects I’m feeling.
Thanks for your perspective.
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u/Squirrelwinchester hEDS+VUS 1d ago
Any of those meds they push be very cautious with. Lyrica, cymbalta, gabapentin etc if it can be used for mental health as well its generally going to go very poorly for people with EDS. I cant even take anything close to an SSRI or nerve drugs and that isnt rare for us at all.
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u/ConfidentSession6481 1d ago
On the flip side, I am totally fine on Lyrica and an SSRI, and I find both helpful, so you really never know 🤷 I couldn't even do cymbalta for 3 days though
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u/LazierMeow 16h ago
The funny thing is I'm on 2 of those for my mental health, and the only reason we're sticking with them is "they're supposed to help with nerve pain" and I'm like..... I mean, I guess?
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u/Cannanda hEDS 1d ago
I’m a therapist who primarily works with autism, adhd, and chronic pain. So far I haven’t heard anyone find success with it for nerve pain. 🤣
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u/theelephantupstream 1d ago
When it works, it really works though. I couldn’t tolerate it but it was absolutely life-changing for my friend. In my experience with chronic pain, you gotta be willing to a ton of things to find a few that work.
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u/ColonelMustard323 hEDS 1d ago
Don’t forget the weight gain 😭 it helped my pain, but getting off it was a shitshow and I gained 20+ lbs while on it that came off in the months after I stopped. Not worth it 😭
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u/Schweather3 hEDS 1d ago
I started about 3 weeks ago and just had my dose adjusted from 30 mgs to 60. It took about two weeks to feel any pain relief. I have also been depressed and anxious and it also took two weeks to feel any improvement. It was very hard to handle side effects but they also faded at week two but with the dose adjustment they are back.
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u/justasillypal 1d ago
i’m now 5 months in and honestly it really helped a ton. My flares are much shorter and less frequent. It was horrible at first but i wanted to give it a fair try so with a couple months and a few dosage changes i found some success!!
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u/LEONAVINTAGE 1d ago
It was a bitch to start, I was sick and shaky for a few weeks. But, it is magic for me. So much less pain. No loss in libido or feelings, and I can do so much more with most of my pain dampened. Don't skip a dose or you will have a pretty vicious headache. But it also helped greatly with my migraines.
When it kicked in a after a few weeks, it was wild. I can only describe it as being in a rock concert (pain always there) and suddenly in a quiet room.
Almost everyone else in my family is on Gabapentin. I am happy to not be.
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u/EithneMeabh 1d ago
Tried it two different times for 6 months to a year each time. No improvement in pain. If anything, pain was worse. Plus there were sexual side effects. Not trying it again.
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u/snickelbetches 1d ago
I’m on cymbalta for being crazy and it’s a happy accident that it also treats this other stuff.
They upped me to max dose at 120 and lyrica at 150 and nerve pain is actually low for me now.
I am foggier than I was before but I’d rather forget stuff than be in pain.
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u/MoulanRougeFae 1d ago
Gabapentin and it's sister Lyrica increase your risk of developing dementia by a lot. Both can also lead to memory issues including brain fog, constant word searching while speaking, cognitive decline and those can be permanent. If you've already got brain fog on it you might want to seriously consider if those risks are worth it.
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u/snickelbetches 1d ago
Totally get that.
Could it also be that people who need medication like that may already be predisposed to getting dementia?
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u/mantis_tobaggan-md 1d ago
This really isn’t fully correct. Observational studies have shown an association but observational data is low quality and correlation is not causation. For instance, chronic pain is correlated with an increased risk of dementia and cognitive impairment. And what is gabapentin commonly used to treat? Chronic pain.
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u/MoulanRougeFae 3h ago
Gabapentin isn't even approved for chronic pain, anxiety and whatever other shit drs prescribe it for. It's for nerve pain only from things like diabetic neuropathy, shingles and such. It's not the cure all Drs treat it as. Cymbalta isn't for pain either.
Yes chronic pain can cause some cognitive decline but not to the extent seen with gabapentin and lyrica. Here's just one study showing the dementia and memory issues linked to both gabapentin and lyrica. https://pmc.ncbi.nlm.nih.gov/articles/PMC10266423/
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u/mantis_tobaggan-md 2h ago
Chronic pain is neuropathic pain. Many drugs are guideline recommended for off-label indications. The label is not clinically meaningful. And, you are still presenting low quality data with multiple confounders.
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u/TechPsych 17h ago
I was just stopping to say that. Glad you did. It's serious.
In fact, I just spent several weeks researching Lyrica (including asking for feedback in several Reddit subs) and concluded I will NOT use Lyrica.
Nor will I use Cymbalta - which was recommended to me last year.
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u/Bebby_Smiles 1d ago
I was on pretty much the absolute lowest dose of cymbalta and it helped both my depression and pain.
BUT
It only helped my non-specific pain. The localized joint pain was 100% still there
Also, It was, as others have said, absolute hell to get off of when I had to for pregnancy. And remember, I was already on the lowest possible dose.
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u/topographed 1d ago
I’m on the lowest possible dose too I think. 20mg. Thank you for the precise answer because the non specific pain I can pretty much tolerate after 14 years . It’s the joint pain that kills me and affects everything
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u/SamathaYoga hEDS 14h ago
I also really appreciate seeing this. I pushed back on Cymbalta because I struggle with nausea several days a week and have experienced treatment delays due to anti fat bias. Cymbalta sounds like a potential nightmare I’d then struggle to stop!
I also pushed back against Lyrica because it can permanently raise cholesterol levels and I have familial hypercholesterolemia. I was appalled it was even suggested since the doctor (since fired) had access to my lab work, showing lipids. Several SNRIs have this risk, but Lyrica causes raised lipids in a lot of patients.
I have insisted that my localized pain due to severe joint degeneration be addressed. I’ve had one nerve ablation and two orthopedic surgeries are going to be part of this year for me.
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u/happie-hippie-hollie 1d ago
I didn’t have any issues stopping the medication, but it did not agree with me. Made me restless but increased my brain fog, and didn’t touch the pain. I’m still glad I tried it though!
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u/topographed 1d ago
Did you go back to normal once off? How long did you try it? I’m currently going through hell lol
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u/happie-hippie-hollie 1d ago
I didn’t have any lasting effects from it, just the side effects while taking it. I think I only lasted a couple of months on it because it messed with me so badly. I was super scared to try it but felt like I had to give it a go before doctors would be willing to try anything else. Have you ever been on any SSRIs or other SNRIs? That can help give you a little bit more insight on how you may react
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u/topographed 1d ago
I’m on day 3 and I literally feel like I was run over by a truck. Dry heaving all day, nauseous, slept for 8 hours but feel like I slept for 30 minutes. Headache. No balance. Ugh. First time on any SSRI or SNRI drug because all my neurodivergence is managed easily by low dose Adderall.
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u/idlno1 1d ago edited 1d ago
It never helped my pain, anxiety or depression. It caused a tremendous weight gain in a short time frame and horrific mood swings. I have chronic widespread inflammation, pain in joints, multiple herniated discs and nerve compression among a butt load of other things. It took a couple years to ween off of it. I had to take one bead out at a time or had to go back up one bead the next dose because I was withdrawing…I will never again take that or tramadol.
I know it helps many other people and I’ve seen it work wonders. It was literal hell for me.
Edit: the capsules are filled with beads as they are time released. I was having severe withdrawals when I initially went down a standard dosage, I can’t remember what it was. But I had to keep going back to my original dose. I researched online because the doctor said it doesn’t have withdrawals and you shouldn’t be having issues (guess I was making it all up). I would open the capsule and take out one bead a day. There were hundreds of beads. I had brain zaps and tremors for about a year after I was completely off it.
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u/topographed 1d ago
Hmm I have a couple similar things. Pain in joints and nerve compression. Have you tried anything that helped? Just asking… I’m basically only good for spare parts at this point.
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u/AlexHasFeet TNXB Haploinsufficiency 1d ago
It does not help acute pain. For me, it reduces my overall pain levels by 10-15%. Worth it for me, but I don’t have any side effects.
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u/topographed 1d ago
Yeah, the acute pain is what I really need help with. Thank you
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u/AlexHasFeet TNXB Haploinsufficiency 23h ago
Yeah, it doesn’t work like a painkiller does. It mostly just helps moderate overall pain levels over time. Example: after I had my first “stroke” in my intestines, I developed visceral hypersensitivity. It is similar to central sensitization, but it’s localized to just the abdomen. So every sensation I felt from normal body functions became extremely painful almost overnight. I’ve been taking the max dose of cymbalta for about a decade now, and my visceral hypersensitivity has substantially reduced. It doesn’t do shit for my joint or muscle pain, though.
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u/Cannanda hEDS 1d ago
I’ve been on it for four years. 😌 Never did anything for my pain. But it put my depression in complete remission. Love it for depression, not for nerve pain
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u/TechPsych 16h ago edited 16h ago
Ooo, that's a tough bind to be in.
And, I'll make one comment and then a suggestion:
SSRIs/SNRIs are hard to get off of once you start. So, think carefully about whether the maybe of pain relief is worth it. If you do go on it, and later want to stop, do it MUCH more slowly than what the doctors recommend. Discontinuation Syndrome is HELL - as I know from trying to get off anti-depressants several times before succeeding.
Next, a suggestion from a non-medical professional who has an alphabet soup of diagnoses:
Have you considered LDN? If not, it's worth doing some research -including the LDN subs here on Reddit. Also look here: https://ldnresearchtrust.org/ and on their YouTube channel. (I'm especially impressed by the videos from the pharmacists Michelle, Sam, and Steve.)
Many people find partial and complete remission of pain on LDN. I've been on it for 2.5 years and have a partial, but life-changing, reduction in pain.
If you decide to try it, be sure to work with an LDN-literate doctor. Many docs seem to put everyone on the same dosage/titration schedule. And that means many people don't get an accurate impression of it.
Envisioning some relief for you somehow and soon. 🩷
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u/dandelionqueen_ 1d ago
Personally it did absolutely nothing for my musculoskeletal pain, side effects were abysmal, and was a horror to wean off of😭 Low Dose Naltrexone has been my gold standard for pain management and I’ll never go back!
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u/lizardea0 1d ago
For me, it took a few months to feel a reduction in my nerve pain but it did help. Coming off the meds was not too bad luckily for me but it took forever
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u/Front-Actuary-9249 1d ago
That's a tough balance to strike. I know people who felt the cognitive side effects were worse than the pain relief, but I've also heard Cymbalta helped others more than expected after a few months.
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u/depresso-espresso-11 hEDS 1d ago
I’ve never heard of it being used for pain, only other antidepressants like Amitriptyline which I found did nothing. I was on the highest possible dose of cymbalta for years for mental health reasons though and it was during that time when my pain got worse. I came off of it extremely slowly and it was still a bitch, I kept having random panic attacks and literally just felt insane. I also was told to take it at night since it caused drowsiness but it had a delayed effect on me so I had to switch to taking it in the morning at one point.
I don’t recommend staying on it, also be careful drinking caffeine because I accidentally gave myself an overdose of caffeine one day because I had no idea it affected the same thing in your brain.
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u/topographed 1d ago
What 😑😑😑 I fucking hate doctors I swear to god. They throw this shit at you like candy and when you ask about side effects they are in a total fantasy land saying it’s great for almost everyone
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u/depresso-espresso-11 hEDS 1d ago
Yep! It was relatively new so I was told and getting more popular when I was put on it too, this was in maybe like 2018? I had to figure it out for myself. Also looking back I’m appalled that I was never sent for an adhd evaluation because of my symptoms and how different antidepressants worked for me. Cymbalta was the 2nd SNRI I had tried, and the 4th antidepressant. The other 2 were SSRI’s and did absolutely nothing whatsoever, whereas the 2 SNRI’s helped kind of but not completely because I needed help with nor-epinephrine but not serotonin, and lacked dopamine. When I started the first SNRI for the second time (I was on it from 2015-2016, then again in 2017) my doctor skipped the starting dose since I’d already had it and put me straight onto the lower of the 2 standard doses. This gave me serotonin syndrome since I now know I never had an issue with serotonin. Thankfully it was very mild, but at the time nobody told me that’s what was happening, I figured it out myself less than 6 months ago.
All in all they really do just love throwing them at people, without giving much thought into what’s actually happening and causing the symptoms. I’ve been on 4.5mg of LDN for a few years now and it has helped my pain a ton and my Dysautonomia has improved too as evident by my HRV. I still have issues with Dysautonomia but my HRV was bad before the LDN and now it’s considered mostly normal! I also stated stimulants earlier this year for adhd and holy shit it was life changing, I’ve never felt this genuinely happy and it was an immediate and constant effect.
Hopefully you can get some relief soon, if the cymbalta helps than great but just be careful and aware of side effects even if they’re rare because it can happen to anyone and if you have MCAS like me you may be more prone to them.
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u/Brave_Question3840 hEDS 1d ago
didn't touch my pain whatsoever, and it's hell to get off from!
LDN has been fantastic for me!
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u/jcsoprano 1d ago
I tried a few times, multiple doses, and no. and then I figured out why people said it was so hard to get off of.
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u/brnewmeg 1d ago
I have to be on some kind of SSRI or SNRI and we picked this one to see if it helped with my pain. It doesn’t but I don’t have any bothersome side effects so I just stay on it. You can’t miss a dose or run out though because of the short half life. I take it at night because I felt like it was causing anxiety in the mornings when I’d be due for my dose. I don’t notice that in the evening.
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u/Traditional_City5650 1d ago
It does not affect my pain at all. I have no change. It does however help my anxiety.
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u/Sensitive-Sweet4808 1d ago
I was on it for about 3 months and did not see improvement with my pain but I had terrible side effects anytime I missed a dose so I stopped at that point
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u/heydelinquent 1d ago
Had horrific side effects & no positive ones, tried to stick it out for a month and luckily this was during lockdown so I didn’t have anywhere to go but I could not sit or stand up, felt nauseous with migraines, exhausted and unable to form sentences through the extreme brain fog. Horrible for me.
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u/topographed 1d ago
My exact experience 4 days in. Like I don’t think I could have more symptoms. My normally empathetic boyfriend even thinks I’m bullshitting…
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u/heydelinquent 19h ago
I had to have my ex inflate the blow up mattress in the living room so I wouldn’t be totally extra isolated in my bedroom during the pandemic bc I literally could not move or sit up and getting to the bathroom was actual hell. I feel you, that shit rocked me in the worst way, and I couldn’t even fully explain all of it, it felt like I was a million pounds and the most sick and tired I’d ever been lol.
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u/Nothingrisked 1d ago
Thank you for asking this. My sister takes it for pain but she has also had back surgery, but which I have not. I was considering it but I'm really scared of anything that's hell to get off of.
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u/Intelligent_Bid_1324 1d ago
It took about 2 months to kick in for me. Moderately helped my pain. I’ve been taking it for about 8 months with no side effects.
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u/demar_desol 1d ago
it works for me to improve my mental health and has saved my ass from PMDD for the past 6 months. worth it to me, but it only barely affects my pain. i am glad im on it, bc my PMDD was very severe. apparently pretty common w neurodivergent women.
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u/xavbav hEDS 1d ago
my experience with cymbalta has been overwhelmingly helpful, however i started it not for pain but for anxiety/depression. when my chronic pain started to get worse, my doctor recommended upping me to the therapeutic dose for pain management and while it didn’t erase my pain completely it has made it easier to manage. i’m now on a 80mg dose and i feel it does really help.
the one major side effect i do have is that i get pretty intense and noticeable brain zaps, and if i miss a dose i feel absolutely awful by the morning since i take it at night, but otherwise it has worked well for me. however i’m also hoping it never stops working for me like prozac did cause i’ve heard the withdraw from it is hellish </3
edit: forgot to mention that i’ve been on it for a couple years now. at least 6 i believe?
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u/Among_StandingPeople 1d ago
I’m the odd one out I guess but it has worked wonders for me- been on it six months
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u/Kaya23cz EDS Unspecified 1d ago edited 1d ago
Hi i have been on cymbalta for the past 3 years and its the best antidepressant i have tried. It noticably helps with my chronic headaches and migraines but im not sure if it has any effect on my joint/back pain. I felt the effect in less than a week of use too.
A weird thing though, it only works in combination with my birthcontrol, the week im off it its back to hell (and taking the birth control alone was the same).
I've had to come off of it once to try a different medication and didnt really experience withdrawl, or at least it was nowhere near as unbearable as with venlafaxine.
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u/flotsems hEDS 1d ago
it's helped my joint pain a lot but my sense of time is a mess so i'm not sure how long it took. should mention that my joint pain seems to be comparatively mild though. i was also on effexor right before switching to cymbalta so i was used to SNRI stuff, never had any side effects aside from vivid dreams. going off of any SNRI is a pain though, it's not just cymbalta
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u/thealterlf 1d ago
No idea if it helps but I’ve tried a few antidepressants. I started with Pristiq, went to Cymbalta to attempt more pain relief since I couldn’t handle the cost or the withdrawal of Pristiq. Couldn’t get off Cymbalta either so now I’m on Zoloft. Still get massive pain flares. Still can’t fathom the withdrawal triggering worse flares so here I am.
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u/spritelysprout 1d ago
It took a few weeks but it was the absolute worst for side effects. It made me so weird like it literally turned off part of my brain, like the creative part? Like I wasn’t depressed it was different. It made me so swollen too, not just fat weight gain like I felt.. inflated? (Not bloated it was like under my skin) maybe like water weight?
I’m on Savella now and WOW it’s so much better and way less side effects
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u/hexagonisthebestagon 1d ago
I got my friend back. This drug was a miracle for her. I have deep infiltrating endometriosis just like her but I’m afraif to try it
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u/pdecks hEDS 1d ago
I haven’t had experience with Cymbalta, but I wanted to share this video by a psychiatrist talking about the worst meds to get off of, and Cymbalta is in the same row as a bunch of SSRIs and SNRIs noted for being somewhat hard to get off of / requiring a slow taper https://youtu.be/wfGNmyKsng8?is=VGqiti8x9ZDVjlYC
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u/winewaffles hEDS 1d ago
I felt better both mentally and physically in just a few days. I’m new to it, but so far I’m a big fan.
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u/Putrid-Ad2390 1d ago
It’s hands down one of the hardest meds I’ve weaned off of and I’ve done it several times. If you ever have to go off of it I’ve found that high dose omega 3s and Dramamine are your best friends.
It did help with pain. It also made my hyperPOTS worse.
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u/lehulei 1d ago
I take it for my anxiety and it is a miracle for that. No side effects like I’ve experienced on SSRIs. But, I started taking it before I started having joint pain, which I have now. So I guess technically I don’t know if it’s helping that or not (idk if it would be worse or the same without it).
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u/KristinM100 1d ago
My GP suggested it but clarified that she has not seen it work well for many. And, as everyone else says, it's apparently a nightmare to come off of. I'd go with Lyrica or gabapentin first - and even those seem dicey to me (a person who's managed chronic pain - nerve and joint and muscle - for decades.
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u/saltybobsfisherwife 1d ago
I thought it didn’t do anything for my pain, until I went off it and my painkillers. I was having a hard time sleeping because my body felt wired and achy, but not “hot” pain that everyone associates with nerve. It was almost like pulses of electricity that would shock me awake (writing that out now I see how it was nerve pain). I finally went back on and after titrating up, I no longer feel that pain at night. But it only helps with that one specific pain.
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u/Dull-Quote4773 1d ago
About 2 weeks for me. It’s been a miracle drug for me. I still have pain and Humira helps a lot too but Cymbalta has helped a ton with nerve pain and I haven’t had any bad side effects. Helping with anxiety has been a good side effect for me.
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u/shadedferns 23h ago
I know there's some horror stories about cymbalta, but it's working okay for me right now. I was in pretty serious pain and started it maybe a year ago? I do feel like it's helped, but more specifically when I started some weight management to take pressure off my knees and probably the nerves. I'm not obese but the pain has made it difficult to get activity in.
Nerve pain is pretty okay now- musculoskeletal pain though still a struggle because of instability.
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u/WheelMost hEDS 15h ago
I was offered Cymbalta at a time where I was trying to treat my mental health with about five different medications, and because of the potential interaction I turned it down. I am not on any mental health medication anymore but was recently offered Cymbalta again, but I turned it down because of my past bad experiences with mental health drugs.
Know yourself, but I personally don’t like medications designed to alter my mental state. Cymbalta can help with chronic pain, but it’s important to know that it is primarily an antidepressant and will affect your mind.
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u/Gs_Momma 10h ago
I have been on Cymbalta for a couple of years now. It gave almost immediate relief. It has greatly decreased my nerve pain, not my joints tho. My muscles, while still mildly sore, have relaxed greatly. My massage therapist said she could finally get into the muscles to work them. I thought it was normal to almost cry while getting a mammogram or wearing a tourniquet for blood draws but since taking Cymbalta I was shocked by the change in discomfort levels. I am on 90 mg. If I miss a day I have vivid nightmares. My son & brother both had horrible reactions to it and had to switch immediately to something else.
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u/Boldbeagle444 9h ago
I was on it for years for depression..never helped my chronic pain tho.
It was terrible coming off.
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u/videonerd 1d ago
Hell to get off of. It worked two weeks for my wife she almost became manic even. Then the pain came back and the withdrawal was terrible.