137 replies to this topic

[dlmj]

Hi All,

I'm not new to trying to ween off cymbalta, and like so many I started taking this drug over 10 years ago for fibro pain.. At first I though wow something is helping. As it did .. But as the years went I have had all kinds of side affects that I didn't really associate with the wonder drug that was taking my pain away . Long story short... it tured out that i had lyme disease... and began treatment for that. and noticed even more of a decrease in my pain.. basically none!!! WOW.. so here I am on this drug and decided well I don't think I need this any more.. AND that is when the hell began , and my search to see if others were having the same problems I was trying to ween off.. I was on 60 mgs. every day of cymbalta.. I weend my self down to 20mgs. the lowest dose as you all know.. Chatted with my DR. about the fact that I could not go to the every other day dose as was suggested with out getting violently sick...she really didn't have much to offer.. And my search began.. I read about bead counting. and started that..  with not luck, guess I may have been going to fast. THEN it happened.. I picked up my refill of cymbalta.. and noticed it was DIFFERENT!! Well I didn't think to much of it cuz ya know what they say. Generics are the same.. hahahahaha... Wrong!!! I had been out of work due to back problems.. during this time. Thankfully.. As I went into a whirlwind.. I can't even explain... BUT I didn't put two and two together.. so a couple months pass and I notice I start feeling better.. Leveled out .... hummmm ... Ok.. so now I figured it out.. der.....  Then my thought,  I may as well take advantage of the time off from work to get off this monster... decided to start counting beads again.. WELL to my suprise when I opened the capsual instead of  all these tiny little bead which are difficult to count.. there were only 4 small pellet sized beads.. Hummm so being a 20 mg dose each much be 5 mg's each.. So I started with one bead.. And yes it is not pleasant. but I did notice not as severe as what I had experienced with the tiny beads.. I'm now On my second week of what I believe is 15mg. I'm doing ok.. functioning.. I plan to stay at this dose till I feel I level out again and then eliminate another.. I just thought I'd share my experience with ya all.. Not saying it is the way to go.. but after the shock of the generic  in my system and the now ween.. I'm doing ok with it.. Good luck.. I also started juicing in hopes it helps with detox. and using detoxing methods  I had to do while battling lyme disease.. One word of advice ... Get checked for Lyme disease.. and do so with what is called a lyme literate DR.. our medical testing is lame and the blood test your PCP will give you called the Elsia test is 60% inaccurate... I had to pay to have my test done buy a lab in california called Igenex. another good source of information on lyme disease is to watch a move called under our skin.. you may just see your self there.. it may be worith it.. This has been a 12 plus year journey for me.. I'm not done with lyme treatment, but I felt I needed to come off this drug to see where the hell my body is at with all this.. Good luck and blessings...

[equuswoman]

Welcome glad that you have found us.
I just finished weaning off Cymbalta using the bead :counting method. I've been to hell and back. I'm not sure what my future may be but I plan to do the best that I can♥ Please let us know how you're doing♥

[dlmj]

Thank you, I just also wanted to share my experience, I've  not ever been off cymbalta in over 12 years so I have no idea what to espect when I finally get there. but I am gonna get there.. It is a shame so many are in this situation.. had I known I may never have started taking it.. AND the biggest thing for me is that I did not get proper diagnosis in the beginning of the hell.. had I may be my life would be differnt. Now I have chronic lyme disease and that in it's self is a night mare. But I'm determined to make the best of what I have. It's gonna take a while to get off this , then deal with with ever  I have to.. I'll post as I go. help others but my thought so far is that the generic may be a bit easier to come off of , and more controlled with the pellets .. May be this is my blessing who knows..

[equuswoman]

Yes please let us know how you're doing. We all share our experiences with one another. I'm on my 3rd day from weaning off this poison. Prayers for you♥

[FiveNotions]

Hi dimj, welcome to the group! I'm glad you've figured out how to adjust the weaning for the generic....and I'm so glad to hear you say that you're going to make it through the process and get rid of this poison!

I have a dear friend from way back in high school who has Lyme disease...as does his wife...I'm going to pass along the info you shared to them...it's a horrid disease, and they've been through hell trying to get treatment, tests, etc....

I'm sorry you have to deal with both crapalta weaning and Lyme at the same time.....do the symptoms seem to overlap? How do you sort them out?

Keep us posted...we care, and we'll help any way we can!

[dlmj]

Well that is just it.. I don't know what is causing what.. My LLMD wants me to come off the cymbalta. And quite honestly I have wanted to for quite some time.. but just couldn't handle the withdrawal and the treatment of lyme, As they are both brutal. So of course once I found out about lyme I had to begin treatment and I did , it was terrible.. Now that I have had improvement in my health in some ways I feel it is time to come off the cymbalta.. If I had not been misdiagnosed years ago I would have never been on it. Oh well it is how it goes and at the time I was desperate for relief fromt he pain.. it did help some. but I remember going on and having all kinds of issues.. Any way.. It seems to be leveling out again and I think next week I may lower my dose again,  if it does not work and is to much to soon I'll up it and wait it out... BUT so far I'm doing good coming off the generic I'm amazed how well it is going so far may be I have not hit the wall yet.. but I'll keep ya posted.. I had to share that . cuz I had failed misserably on the non generic.

 

I'm sorry about your friends with lyme it is a very tough road to travel , you have to stick to treatment and mostly find a DR. who reconizes it and can clinically diagnose it.. It's not an easy disease to treat if left untreated for years.. if caught right away it can be taken care of easily..  All my best .. I'll keep ya posted...

[FiveNotions]

Dimj, what is your Lyme treatment? And how did you find a good doc? My friend and his wife have given up on traditional medicine and are now looking into alternative therapies....they are desperate....are ther online Lyme forums like this one that you know of?

[clearglass]

Welcome dlmj   and thanks for sharing your experience.  I'm on my 2nd day off crapalta by bead counting.  I kept beads from previous capsules because I was afraid of getting the generic brand.  Sounds like you have a good plan and this is a good site for support. 

 

clearglass

[dlmj]

Thanks guys... I just starting another bead ellimination , This past monday.. so monitering my progress. as I did this two weeks after last dose lowering.. I'm tired and not feeling to badly, the one good thing in that I'm out of work for right now with back issues. So that is a huge help being able to just chill during this. I'm a mess. BUT I'm gonna do it. So I'm gonna stick it out but if the symptoms get to bad I have no problem upping the bead if need be and let my body adjust for a longer period of time.. I did have a moody day yesterday. But things with my back got to me. I'll get there...

[dlmj]

Dimj, what is your Lyme treatment? And how did you find a good doc? My friend and his wife have given up on traditional medicine and are now looking into alternative therapies....they are desperate....are ther online Lyme forums like this one that you know of?

Hi five , I'm so sorry your friends are struggling soo terribly.. what state do they live in? I know the issues they are having with finding treatment. It sucks pretty bad.. I only found my DR. through a friend who's daughter was going through the same thing I was. I was clueless . I paid for my own lyme test as the Elsia test your DR. will give you in inaccurate.. YES there is support out there. I have been in a lot of support groups on Face Book and have made some great friends and Man I learned a lot. BUT be forwarned some of the groups and people can be overwheliming. Like anything you have to weed through them.. I did over a year of treatment with various Anti biotics, some natural. some folks are so sick they actually have to have a port put in and have medication administerd through the vein.People do die from advanced lyme disease. I do need to continue with treatment but decided I needed to come off the cymbalta, as My Lyme Dr. wants me to. the abx also did a number on my stomach.. It is a nasty disease to treat especially if left untreated for a long time. You feel worse before you feel better and it can take a longggg time . I feel I was infected and untreated for over 10 years.. so for me.. I'm chronic case. My lyme literate Dr. is a natrupathic Dr. I had to pay out of pocket for my vists with her which was quite expensive and this is another issue lymies have ,,, finding good dr to treat who take ins. I've stopped with my dr for now , as I'm out of work and just can't afford it any more. Actually May is lyme awareness month, and some people go and lobby for better treatment for lyme disease patients. As this disease is not looked at in a serious way.. Small steps have been made but none the less they have been made. Massachusetts and NH where I live have actually passed laws , protecting DR's who treat lyme disease, as the treatment goes against what the CDC recommends. so A lot of DR. do not treat any further than what the CDC recommends due to the recourse they get and their practices sometimes destroyed.. Soooo I'm not suprised . god I could go on and on.. The Cdc and Ins. Co. have  made it almost impossible for people to get proper treatent. But some pretty big strides are being Made..

 

http://www.snagfilms.../under_our_skin

 

Movie under our skin please watch..

 

http://www.ilads.org/

 

good info here

 

http://ilads.org/ila...ician-referral/

 

from same site physcian refural...

 

Hope this helps, I'd be happy to share anything I can.. As I am very passionate about this. It's been a long hard journey for me. there are so many others like me out there.. Your friends probably feel they are alone in this but they are not.. This is the reason I am in the situation I'm in with cymbalta, as I think I shared , I was desperate for relief from the pain I was in and was not properly diagnosed years ago , thus started the journey of being medicated for "fibro".. When I got treated for lyme I actually got to a point where I could feel the shift in my body.. I went from intenst pain to very little now. I still have issues,, I'm not cured.. but life is much easier. Now I have to deal with my back issues and this friggin drug.. I think you asked me how can I tell what is what.. that is just it I can't so the need to come off the cymbalta in order to see is a must for me.. All my best and keep me posted on your friends.

[dlmj]

Welcome dlmj   and thanks for sharing your experience.  I'm on my 2nd day off crapalta by bead counting.  I kept beads from previous capsules because I was afraid of getting the generic brand.  Sounds like you have a good plan and this is a good site for support. 

 

clearglass

HI clearglass,

I didn't go on to generic by choice, it just happened.. and I didn't think a thing about it.. I am saving the beads from my generic also in case I need them. It took my body at least a couple month to adjust and it was not pleasant. I must say. but at the time , I was dealing with other health issues so I didn't realize what was happening. I know this final push is not going to be easy, but I have to say the generic now seems to be easier to do because of the size of the beads I think.. they are huge compared to the tiny beads in the regular cymbalta. So it is a more controlled ween I think.  who knows but I know I'm not having as sever a symptoms with this try and this is like the 4th try to come off.  good luck I hope the days get easier....

[FiveNotions]

Great to hear from you, dimj! And thank you for the Lyme info, I'm rushing out to a doc appointment now, and will respond more fully later today when I'm back home....

[Lundeliz]

Hi dlmj, I'm in a similar situation as you.  I was started on Cymbalta as part of my lyme treatment.  I

 

wish so much I had never taken it.  It has only complicated things.  Now, coming off Cymbalta, I have

 

no idea which symptoms might be from Cymbalta, or if some could be lyme.  I treated lyme from 2006

 

to 2009, and don't have a lyme dr at the moment.  I've been thinking about seeing a llmd , but I don't

 

know if there's really any way to tell what's causing which symptoms.   Hopefully, with time, things

 

will become a little more clear.

[dlmj]

HI clearglass,

I didn't go on to generic by choice, it just happened.. and I didn't think a thing about it.. I am saving the beads from my generic also in case I need them. It took my body at least a couple month to adjust and it was not pleasant. I must say. but at the time , I was dealing with other health issues so I didn't realize what was happening. I know this final push is not going to be easy, but I have to say the generic now seems to be easier to do because of the size of the beads I think.. they are huge compared to the tiny beads in the regular cymbalta. So it is a more controlled ween I think.  who knows but I know I'm not having as sever a symptoms with this try and this is like the 4th try to come off.  good luck I hope the days get easier....

 

Hi five , I'm so sorry your friends are struggling soo terribly.. what state do they live in? I know the issues they are having with finding treatment. It sucks pretty bad.. I only found my DR. through a friend who's daughter was going through the same thing I was. I was clueless . I paid for my own lyme test as the Elsia test your DR. will give you in inaccurate.. YES there is support out there. I have been in a lot of support groups on Face Book and have made some great friends and Man I learned a lot. BUT be forwarned some of the groups and people can be overwheliming. Like anything you have to weed through them.. I did over a year of treatment with various Anti biotics, some natural. some folks are so sick they actually have to have a port put in and have medication administerd through the vein.People do die from advanced lyme disease. I do need to continue with treatment but decided I needed to come off the cymbalta, as My Lyme Dr. wants me to. the abx also did a number on my stomach.. It is a nasty disease to treat especially if left untreated for a long time. You feel worse before you feel better and it can take a longggg time . I feel I was infected and untreated for over 10 years.. so for me.. I'm chronic case. My lyme literate Dr. is a natrupathic Dr. I had to pay out of pocket for my vists with her which was quite expensive and this is another issue lymies have ,,, finding good dr to treat who take ins. I've stopped with my dr for now , as I'm out of work and just can't afford it any more. Actually May is lyme awareness month, and some people go and lobby for better treatment for lyme disease patients. As this disease is not looked at in a serious way.. Small steps have been made but none the less they have been made. Massachusetts and NH where I live have actually passed laws , protecting DR's who treat lyme disease, as the treatment goes against what the CDC recommends. so A lot of DR. do not treat any further than what the CDC recommends due to the recourse they get and their practices sometimes destroyed.. Soooo I'm not suprised . god I could go on and on.. The Cdc and Ins. Co. have  made it almost impossible for people to get proper treatent. But some pretty big strides are being Made..

 

http://www.snagfilms.../under_our_skin

 

Movie under our skin please watch..

 

http://www.ilads.org/

 

good info here

 

http://ilads.org/ila...ician-referral/

 

from same site physcian refural...

 

Hope this helps, I'd be happy to share anything I can.. As I am very passionate about this. It's been a long hard journey for me. there are so many others like me out there.. Your friends probably feel they are alone in this but they are not.. This is the reason I am in the situation I'm in with cymbalta, as I think I shared , I was desperate for relief from the pain I was in and was not properly diagnosed years ago , thus started the journey of being medicated for "fibro".. When I got treated for lyme I actually got to a point where I could feel the shift in my body.. I went from intenst pain to very little now. I still have issues,, I'm not cured.. but life is much easier. Now I have to deal with my back issues and this friggin drug.. I think you asked me how can I tell what is what.. that is just it I can't so the need to come off the cymbalta in order to see is a must for me.. All my best and keep me posted on your friends.

http://www.stopthely...or-dummies.html

 

more lyme info.. it get more and more confusing trust me..

[dlmj]

Hi dlmj, I'm in a similar situation as you.  I was started on Cymbalta as part of my lyme treatment.  I

 

wish so much I had never taken it.  It has only complicated things.  Now, coming off Cymbalta, I have

 

no idea which symptoms might be from Cymbalta, or if some could be lyme.  I treated lyme from 2006

 

to 2009, and don't have a lyme dr at the moment.  I've been thinking about seeing a llmd , but I don't

 

know if there's really any way to tell what's causing which symptoms.   Hopefully, with time, things

 

will become a little more clear.

Oh gosh I sure can relate to your situation... that is where I'm at.. but for me right now I think I have figured out that the cymbalta is causing more issues for me than I realized.. reason being is that I come out of the withdrawal and feel better.. and once I start another ween it starts all over again.. so hoping once it's done with I can figure it out.. it may take time but I'm gonna do it.. then if I need to start treating lyme I at least know what the heck

[dlmj]

Oh gosh I sure can relate to your situation... that is where I'm at.. but for me right now I think I have figured out that the cymbalta is causing more issues for me than I realized.. reason being is that I come out of the withdrawal and feel better.. and once I start another ween it starts all over again.. so hoping once it's done with I can figure it out.. it may take time but I'm gonna do it.. then if I need to start treating lyme I at least know what the heck is making me feel as I do... what a mess ha.. like you I wish I never started on this med. I don't understand why an antidepressant was used in your treatment of lyme.. My LLMD has wanted me to come off for a while . I have tried but failed every time.. I'm looking forward to being done with this.. and moving forward.. best of luck to you.. and yes I would find a LLMD if you don't feel you have been treated properly for lyme. It's tough and lot's of Dr. don't know how to properly treat..

[dlmj]

http://www.stopthely...or-dummies.html

 

more lyme info.. it get more and more confusing trust me..

http://whatislyme.co...t-is-all-about/

[Lundeliz]

dlmj, now I understand you are still tapering. Yes, if you stabilize between

tapers, then that would make things more clear. I have been off Cymbalta for

about 4 months, and am feeling worse than ever, so that complicates things. I

don't know why I was started on Cymbalta either. I think my dr. said in case

I had pain from the herxes. Wow, I wish I could take that back. Most days I'm

convinced this is all Cymbalta withdrawal. Then I start to doubt and I get so

distraught trying to figure it out. Hopefully we will get it figured out and

get on the right track.

[FiveNotions]

Gosh Lundeliz, I didn't realize you have Lyme disease....I must have missed that in your earlier posts...major brain fart, sorry!....no wonder you've been having trouble getting things sorted out!

Are there any good lyme docs anywhere near you?

I've gotta' get in touch with my friends right away.....it would be horrible if they get put on cymbalta to treat the Lyme.....

Good Lord, is there any condition that cymbalta *isn't* used for? Halitosis ? Jock itch?

[dlmj]

Hahaha I know it's scary... how much these drugs are pushed and used for what ever.  Good friend I'd be happy to share as  much of my lyme experience with you if it can help you out to figure out what is going on.. I had a lot of pain as time went on.. and obviously Cymbalta did noting for it!! when I first started on cymbalta I had to have been in the beginning of infection.. as the years went by the pain got worse. and more spuratic through out the body. As lyme can do.. And if you have co infections along with it.. those are different symptoms.. I guess my point is.. if cymbalta helps with pain is sure did nothing for my during this terrible time.. I was also using Vicodin for pain and that helped to some degree. I also had brain fog terrible and memory issues.. I had a terrible time functioning.. and it took a huge amount of energy to function.. I used to have to leave work and I'd come home and go straight to bed and sleep for hours.. it was terrible. Thank god no DR. recommended upping the dose of cymbalta.. What a mess ha.. for me I went over 10 years before I diagnosed with lyme disease.

 

yes please tell your friends no matter how desperate they are to relive pain not to use cymbalta. not worth it.. If they have a good lyme dr they will have other ways to treat.. battling lyme disease actually in the beginning of treatment for me. Was worse than coming off the cymbalta... I was literally incapable of getting out of bed for very long.. It's called a herx. and the die off of the bacteria happens fast in the beginning, and that in it's self makes you very sick till you can detox your body and get rid of it.. It's pretty involved.. It is an education I never thought I get .  So please spread the word on lyme disease. AND please know that if you do get bit DO NOT try to burn the tick off, do not squeez it off, you need to use tweezers and grasp it right at the point in has entered the body. If you grab and squeea or burn or apply soap to try to make it release.. you are most likely gonna piss the thing off and make it inject the disease it could be carrying.. You should also be aware that you can get a tick tested that has bitten you.. you should not kill it. but put in something like a zip lock bag with a moist cotton ball or paper towel and it can be mailed to be tested. I had to have one tested. I seem to be a tick magnet..

[dlmj]

I apologize if I have gotten every one's name mixed up here... heheh still new here.. hope you can figure out who I am addressing in my posts..

[dlmj]

http://www.lduc.org/

 

 more lyme disease info.. for any one interested..

[tammy1874]

my name is Tammy was put on Cymbalta 2 years ago weaned off as doctor directed my life is a living hell no enjoyment terrible depression  and my future seems grim, its been over 2 months and now im numb and have pain im very scared and feel all alone 3/30/14

[FiveNotions]

Tammy, hello and welcome! I'm so happy that you found us.....this place, and the wonderful people here, have saved my life .... You aren't alone any longer, you're a member of the community here ..... and we'll do everything we can to help you get through withdrawal from cymbalta and into recovery.....

You can do this! And you'll be so grateful you did when you start to feel your real self, and love of life, returning!

I was on 60 mg of the poison for 7-8 years....for fibro and panic attacks...I quit cold turkey because I lost my health insurance... How about you? Dosage? for what? and what kind of tapering schedule did your doc tell you to use?

What symptoms are you having now? (They tend to change during the course of withdrawal.)

Check back often and keep us posted.....we care about you!

[Clara]

Hi Tammy and welcome! You're NOT alone! This forum has lots of loving supportive, knowledgeable people to help you get through this. We're here for you! Rest as much as possible! Keep us posted! Ask questions or whatever you need to do! clara

[dlmj]

Hi Tammy,

 

Gosh I know how you feel but you are not alone.  I have been at this for a while now trying to get off, and am making progress. and you will go through a really tough time getting off this poison.. But it can be done and take some time doing it. You have to go slow or you will become very sick.. tell us your stratagie and what you are doing.. I also started juicing in hopes to give my body the support of natural nutrients.. as I lost my appetite.. and was concerned.. I can't say it doing what I hoped but can't hurt.. hang in there... keep us posted and others experiences will only educate you and get you closer to being done with this...

[Misery68]

Hi everyone. I'm Michelle and I've been on Cymbalta 60mg for several years for panic attacks, depression & fibromyalgia. It helped at first but over the past year I started getting really depressed again and I feel like it's no longer helping my fibromyalgia either. I have tried and failed several times at trying to go off it. Last week I decided to try again. I'm doing one pellet/bead less per day. I have had a panic attack everyday since and of course the horrible brain zaps & moodiness. I thought going down by only 1 bead a day would be better than cold turkey and it is but still it's miserable
My psychiatrist isn't very helpful. These doctors react to complaints as if I'm exaggerating. I am very frustrated & angry right now. Hope I can get some suggestions and ideas in here. Thanks

[Misery68]

Also I am wondering if everyone has weight gain with this medicine? I've put on about 75 lbs since starting it about 8 years ago. Started juicing recently and cut out all sugar & flour but the weight loss is slow.

[fishinghat]

Well actually M68 that sounds like a good plan. Welcome to the site and keep us posted.

[Misery68]

I also was switched to generic and I'm wondering if this will be even harder to wean off of? My insurance won't pay for name brand anymore. This stuff is just a nightmare. I have horrible short term memory loss and lots of weird tingling sensations & numbness. Ugh!