u/Bright-Ad-3067

I so desperately want to get the infusions for my nerve pain and I found a clinic. I am on gabapentin for nerve pain and it’s not working well and I’m having an impossible time reducing my dose as well as interdose withdrawals.

My brain is kindled from prior alcohol use. Any substance I put in my body that remotely affects gaba/glutamate will put me into withdrawal with one dose. I’m on a steady dose of Gabapentin and I’ve already had to increase twice in one month to avoid the withdrawals. I can’t stop taking it bc I have horrible burning arms brought on by an adverse Cymbalta reaction.

I want to get the ketamine infusions but I’m very worried about the glutamate surge causing horrible pain and withdrawal after my session. On one hand, I know it’s probably risky, but on the other hand, I feel like I have to try it to reduce my pain so I can start trying to get off of Gabapentin.

Thoughts or experiences appreciated.

I posted about this before on here and I’ve scoured this sub for countless hours and days and cannot find a similar story to mine. I’m posting again because I’m desperate.

I am taking gabapentin for severe burning nerve pain in arms caused by a single 60 mg cymbalta pill 1 month ago. I was taking 900 mg split between 3x per day for ten days and felt pretty good. Some light breakthrough pain but definitely manageable.

12 days ago everything changed for the worse. Without reducing my dose or schedule, I am having what I describe as withdrawal pain from the Gabapentin exactly EVERY OTHER DAY. It’s like clockwork. I’ll start to feel bad Wednesday night then will be better by Thursday evening only for the pain to return Friday night then in agony all day Saturday until evening.

I say it is withdrawal instead of breakthrough pain bc the pain that comes is a whole body burning, and a burning stomach, head, arms, face. But it’s not the OG blowtorch in my arms pain i was using the gaba for.

I have increased the dose for 3 days now to 1200 mg split between four doses. It has not helped. I am still getting the “withdrawal” every other evening and it lasts for about 20 hours.

I am terrified not knowing what to do. Do I stop taking it? Do I taper down and suffer in pain for months, but maybe a lower pain than cold turkey? A painless taper seems impossible since I’m already experiencing withdrawal at a steady dose. Or do I keep increasing hoping the pain will go away at a high enough dose.

Before anyone tells me to talk to my doctor, both my primary doctor and my pain specialist are aware. GP told me to increase dose by 300mg per day which is what I did. Pain specialist said it’s only breakthrough pain and to use medical marijuana which I did but did not help at all.

Any insight at all, no matter how small, would be greatly appreciated. I do not know what to do and I am terrified of the pain.

Tl,dr: I’m experiencing withdrawals at steady dose of Gabapentin after 10 days use. Increasing by 300mg did not help. Do I keep increasing or stop all together?

Ok so I’ve read a lot on here about tapering slowly off and I thought this could be my strategy for quitting when it’s time. But I’m already having interdose withdrawal at a steady amount - 900 mg per day split between 3 evenly spaced doses. So my question is, if I’m already experiencing withdrawal without lowering the amount, how am I supposed to lower it more? Wouldn’t my body go into interdose withdrawal at each lower dose after stabilizing? Like if I’m going through withdrawal without lowering my dose and not stabilizing at this amount, how am I supposed to go lower? Thoughts appreciated. I’m in pain.

I’ve been on 300 mg 3x a day for ten days. Today I started getting withdrawal type pain after my second dose. Burning in stomach and back and arms. High anxiety. Insomnia. Could I be experiencing interdose withdrawal even though I take it religiously every 8 hours and haven’t reduced my dose? The pain has been gong on for 8 hours now and my nighttime dose did not help. I’m scared. Thanks.

Hi I quit Zoloft cold turkey from 50 mg a year ago. I didn’t have any horrible symptoms. Just painless brain zaps for awhile. I now know CT was a bad idea. I wish I had never stopped the medication. I only stopped bc it wasn’t helping me. It had become a placebo and it caused weight gain.

So one week ago, my doctor gave me 60 mg cymbalta to help with unexplained nerve pain I’ve been having for two months. I was worried about the high dose and asked for a lower dose but he said I’d be fine. I took one pill Saturday afternoon and I had a beyond horrible reaction. My arms started burning unbearably. My pupils were also huge, I had dry mouth and my bp and pulse were high. I didn’t take another pill. I’m also now intolerant to heat. The burning in my arms has not stopped. It was 100 percent caused by the Cymbalta.

Can I expect this burning to go away? Am I in some sort of withdrawal mode from the Cymbalta? My doctor gave me gabapentin to deal with the burning and dismissed the reaction as me having a panic attack. I don’t get a blow torch in my arms from anxiety. I’m scared I’ve ruined my life with this one pill. I’m in so much pain I’m thinking about ending my life. Hope or advice appreciated.

Dr gave me 60 mg for nerve pain. I was hesitant to take it bc I read the side effects. Two hours after my first and only dose my arms started burning. The pain subsided the next 2 days but came in waves. Yesterday it peaked again. I am in agony. I previously was on Zoloft 50 mg but stopped cold turkey one year ago. I believe my reaction is due to a kindled nervous system. Should I ride out the pain? I’m ready to go to the hospital bc this is torture. Both of my upper arms literally feel on fire. What could they even give me for the pain at the hospital? Also my Bp and pulse are high and I am in too much pain to eat. How long will this last?!

Never took this drug before today. I’m getting burning skin in waves a few hours after taking my first dose. 60 mg. Burning in arms. I was prescribed cymbalta for nerve pain but this lava feeling is not what I have! Is this normal? I’m really scared 😢

I wanted 30 mg to start and my doctor refused. I’ve been dealing with nerve pain so I broke down and took my first pill today. I started getting jitters a few hours after taking it and now I have burning skin that’s coming in waves. This is awful. Is it too late to get on a lower dose? I don’t want to keep taking 60 mg but I’ll be willing to try the 30 mg dose. I only took one 60 mg pill so far. Can I stop taking this until I talk to my doctor in a couple of days?

Update: the burning was short lived and came in two waves. It was gone for like 30 minutes and my mood was kind of good. Now it’s coming back. Is this normal? It’s also giving me a slight feeling of being on coke and improving my mood which I can’t say I mind. Def beats the sheer panic and jitters and burning. What is up with this drug to experience this many effects within the first few hours of taking it?

Update 2: burning did come back and didn’t really go away. I’m now 16 hours in. I get small reprieves from the pain but it’s largely constant.

Before I spend 1000s on a llmd, I’m trying to clarify a few things. I spoke with one I like who can get me in soon but before I make an appointment I’m trying to get some clarification.

This doctor told me I would need mris which he cannot order. For clarification he is a D.O. so he is an actual doctor. For MRI, I would have to go through another doctor to order them at his recommendation. (Ya know how doctors love being told what tests to order). If I tell my doctor I’m seeing a llmd who wants me to get an mri he’s going to laugh in my face because I already have major lack of care issues with this doctor and llmd’s and Lyme are not believed by mainstream doctors to begin with.

So if he can’t order mris, what else is he not going to be able to do directly for me? Can they order other testing? Can they prescribe medications?! I don’t want to spend all this money and still have to go to my gp and beg for all the recommended tests! The whole point in the llmd is that my gp does not believe my Lyme, is not treating for it, and has done bare minimum testing since I’ve been sick.

Thanks

Subject says it all. Gp was reluctant to give me doxy in the first place because I’m not a cdc positive. Reactive 39 igg, 39igm and 41 igg. Now he’s not going to treat me for Lyme anymore bc I’m still in a lot of pain 3 weeks into doxy. Pain is mostly nerve pain in back and arms. It rotates during the day and from day to day between like 4 specific patterns/ spots on back and arms and more rarely right leg by knee.

I don’t know how to convince my gp and now my bf (who is telling me doctors are the experts and they know more than me or people on the internet and I should blindly trust them to make me better) that i should still be getting treatment for Lyme.

I know my doctor is now going to waste more of my time sending me to useless specialists. Already saw useless allergist and rheumatologist who did and suggested absolutely nothing for me.

Help appreciated. What do you even say to these people to convince them?

Diagnosed with Lyme (reluctantly bc only 39igm, 39igg and 41 igg reactive). Been on doxy for 3 weeks now and I just don’t think I’m getting better. I have horrible nerve and burning pain in back and body. Like my whole body is on fire, mainly in back and arms. That’s been my primary symptom and why I got tested. I have a couple good days then I have horrible painful days and it seems to be the same frequency as when I started treatment.

Last Saturday and Sunday were pretty good days, relatively pain-free and I was feeling so hopeful but then had probably my worse pain day yet Monday night into Tuesday night.

It seems my pain is only at bay if I severely limit my diet - all anti-inflammatory. But to me, if i have to eat that way to feel less pain, the lyme isn’t actually getting better. I’m also very concerned that I’m only feeling better bc the anti inflammatory effects of the doxy and when I stop, I’ll be in agony again.

This has been the most traumatic, painful experience of my life and I pray everyday that I’m actually getting better but I’m starting to think that I am not. It’s a very dark place. Thoughts or encouragement would be appreciated.

I’ll keep the background brief. I have kindling and I can’t have any gabaergic drugs like benzodiazepines, gabapentin, Lyrica, or even opioids because even one will send me into withdrawal with pounding heart and horrible burning skin for usually a day at least.

I’m wondering if certain foods can also trigger withdrawals bc they are interacting with gaba. I’m suspecting bananas and other fruits are triggering my gaba system because they brought on a pounding heart two times today.

After doing some Googling, literally every single food, supplement, or medicine I search acts on gaba in some way. So how is one supposed to eat anything without triggering withdrawals all the time when the gaba system is messed up? I feel like I may be getting to the point of just being in a daily state of withdrawal. It’s very scary. Insights appreciated.

I know this has been asked a million times on here but I don’t see the question being answered. If someone likes their llmd, could you please comment or DM me. I’m trying to make an appointment today. I only have two weeks left of Doxy. Thanks!

My only Lyme symptom is nerve pain in back and arms. Sometimes feels like burning. Sometimes feels like my arm has been submerged in cold water. I have had a few pain free days but they are always followed by a flare. Been on doxycycline for 13 days now. I’m worried it is not working.

I’m also worried the pain might not even be Lyme related because my only symptom is nerve pain. No joint pain, no rash. I also would occasionally get a sensation of blood running down my head which may or may not be related.

Was reactive for 39 igm, 39 igg and 41 igg.

I’ve never been so low and scared in my life. Any insights or hope would be appreciated.

My Lyme has caused horrible nerve pain in my back and arms. Miraculously, doxycycline seems to be working. Pain free for a full day now on my 7th day of treatment.

My gp originally gave me 21 days of pills but after begging, he gave me 10 more days worth. The pharmacy shorted me one pill in my first batch which I didn’t realize for a few days and I threw up a pill, so I’m down to 30 days worth of pills in total. I do not know if that is going to be enough and since this has been the most painful, scariest situation in my entire life, I do not want to take any chances that this isn’t cleared when it could have been with more antibiotic.

So how do I get more doxycycline? I saw some people mention on here you can buy it online out of pocket? Or go to an urgent care. Wouldn’t the urgent care want to test me for Lyme? I know an llmd would probably give me some but they are booking months out.

You would think I’m asking for narcotics or something the way my doctor is limiting it. Last I checked, antibiotics weren’t the hottest street drug. Anyway, all suggestions appreciated.

Tl,dr: need more doxycycline than my GP will prescribe. Please suggest ways to get more.

I have had horrible back nerve pain for a few months now. Used to be once in a while but now constant for 3 weeks. Tested positive for 39 igm, 39igg and 41 igg. I’ve been on doxycycline for 5 days and my appetite has finally returned, and my pain is the lowest it’s been in weeks. Everything I read on here is very dismal though and I’m so scared that my Lyme will not be cured with the antibiotics.

I don’t know how long I’ve had Lyme for. Could be 2 months. Could be 7 months. Basing this off of my nerve pain. Does anyone have a successful antibiotic experience once Lyme has affected the nerves? I am looking for some hope.

I had X-rays. Showed a slight curvature of lumbar spine. Gp dismissed the X-rays as normal. I’m trying to get mri.

So for the past 3 weeks I have pain that starts in my middle back to the right of my spine. This burning pain radiates into my arms and shoulders. Lately my left shoulder and arm.

I tested positive for a few Lyme titers but doctor doubts Lyme. I have dangerously low ferritin (5).

Im at a loss and cannot work right now because of the pain. The pain comes and goes throughout the day. It feels like nerve pain to me because of the burning.

I see the doctor this Wednesday and I’m going to push for an mri.

I’ve now been going crazy researching fibromyalgia, Lyme disease, vitamin deficiencies, gallbladder issues. My life consists of me moving from the couch to my bed. It’s all very hopeless. Any insights appreciated.

Could my extremely low ferritin be causing my daily burning pains in my back and arms? AI tells me low iron can affect nerves but I’m wondering if anyone else has experienced this? Thanks

I have had severe burning nerve type pain in different areas of my back for about 3 weeks. I work outside in New Jersey. I also had a tick on me about a month ago (although it was large and I think deer ticks are hard to see). I tested reactive for 39 igg, 41 igg and 39 igm. I read 39 igm is specific to Lyme. I had to beg to start the anti biotic. Also, my ferratin and iron are depleted and my platelets are high. I’m in so much pain I’m on short term disability from work and I’ve lost 15 lbs. I can’t eat for fear of causing a pain flare and because the pain is so bad. Now I’m terrified it’s not Lyme and the antibiotic isn’t going to help. Any insights?

I have had severe burning nerve type pain in different areas of my back for about 3 weeks. I work outside in New Jersey. I tested reactive for 39 igg, 41 igg and 39 igm. I read 39 igm is specific to Lyme. I had to beg to start the anti biotic. I’m in so much pain I’m on short term disability from work and I’ve lost 15 lbs. I can’t eat for fear of causing a pain flare and because the pain is so bad. Now I’m terrified it’s not Lyme and the antibiotic isn’t going to help. Any insights?