37 replies to this topic

[FibroGal]

Hi all. I am so happy that I came across this community!! Thanks to a link from BYEE on another site: http://byee.hubpages...-Dont-Tell-You.

So...I've been on cymbalta since August of last year (when I was finally and officially diagnosed with Fibromyalgia after suffering with it since 1997). So, to get to the point, I have several medical issues that involve pain (fibro, myofascial pain syndrome, sciatica, degenerative spine, bursitis, chronic pain syndrome) to name a few. I'm 34.

So basically I learned of the side effects when first starting cymbalta with being dizzy and feeling a little brain loopy. But I had no idea about the major issues until I ran out and didn't get a script filled for over a week. It was extremely horrible, to say the least. I was scared of how my body was withdrawing, my boyfriend was extremely concerned as well as my sister who lives 3000 miles away! It was awful. They decided to make sure I never ran out like that again, and check to see where I am in my supply.

So, my reason for writing...after experiencing those withdrawal symptoms, I wondered if I should even be on a drug that produced such dramatic effects to me physically, emotionally and psychologically. I forgot to mention that in the beginning my doc also put me on Wellbutrin to counter act the mind numbing attitude I got from just the cymbalta. I felt like a walking zombie. No care, no emotion, no feeling about life good or bad, just existing. I would sit on the floor of the shower in a daze for 15 or more mins with no thoughts. It was not me. After getting on the Wellbutrin, my mood evened out, and I felt like a real person.

So...I want to get off because of the concerns I have over how it causes such drastic changes, BUT I also feel less pain than I've felt over the past 16 years. I have been in pain every day since May 1997. My pain was between a 7 & 9 daily...may times creeping to 10!! And I mean a real 10. Now, since starting cymbalta my pain stays around a 5-7 daily....creeping less above that line.

Lyrica is the other drug approved to treat fibro. I think there will be some differences since it is not an anti depressant. It was approved originally to treat seizures, as well as pain from damaged nerves that can happen in people with diabetes (diabetic peripheral neuropathy) and in those who develop pain following the rash of shingles. I don't have those things, but just being over informative. :~)

Anyone else out there with thoughts or made the switch? Any other thought in general? It's good to know I'm not alone and that these side effects are absolutely real. I felt like I was going crazy. Super short tempered, even more sensitive to sounds and lights than usual. There was just so much. I don't want to go through that again.

Also, I just read about the bead counting. This info is invaluable!

[Want2bfree2013]

Hello Fibro Gal

 

I totally identify with your post.  I was diagnosed with fibro at 29  now 49...didn't really accept it until a second opinion though which turned out to be Classic Fibromyalgia!    The past 3 and a half years I have been on Cymbalta and helped me tremendously but it seems like every other drug loses its effectiveness and has to be increased which brought me up to 120 mg.  

 

I walked around the past 3 years not feeling really much of anything ex : Happy Sad Excited bla, bla. Now have been weaning off and holy crap , the worse drug to get off of by far & I have been on EVERY SSRI  for cronic depression, post partum after first born, Severe PMS... now Menopausal... so , not sure if this helps ya but WOW  I will never take this drug again.. the past 3 or so months have been just unbelievable ...up to present day 30 mgs while bead counting day 4 feeling a little better.

 

Hope your doing okay ..

 

Hugs

Shirl

[fishinghat]

FibroGal, welcome to the site. I have been on cymbalta for around 4 years and just recently stopped taking it. But to get to your question about the lyrica. My wife has had cervical fusion and two lumbar total discectomies. She is on lyrica for the pain and it has worked very well for her. It does not have the psychological side effects that cymbalta has BUT is addictive with some very nasty withdrawal effects. Most people gain a little weight when on it as well.There is nothing the dr can do for my wife's pain so she will probably never come off of it. Being in constant pain is hell so hang in there. I wish there was something the doctors could do to help people like you and my wife.

[lady2882Nancy]

Fibrogal

I have been on both medications and am currently tapering off the cymbalta with the bead counting method which is the only way to go in my books.

The cymbalta did help some with the pain but not enough to make it worthwhile.

 

Now the Lyrica was vastly superior and I would recommend trying it. It took about 4 weeks for me to get relief but then it was total relief for me.

(I suffer from osteoarthritis, chronic pain, osteopenia which was discovered after some fractures in my vertabrae) I even found that after I went off the lyrica that my pain wasn't as bad as before (about 3 or 4 compared to 7 to 9 before taking it).

 

The only problem I had on the Lyrica was my short term memory was terrible (that can be an issue in my family anyway but Lyrica made it worse), but as long as I wrote things down I could deal with it.

 

Lyrica didn't cause the lack of emotions or the brain fog I experienced on cymbalta and the withdrawals from Lyrica were minor compared to what I've had with the cymbalta (I went from 60mg to 30mg with no tapering and man that was horrid)

[fishinghat]

Hey Lady2882Nancy, when you came off he lyrica did you suffer a lot from withdrawal? I hear it can be pretty bad.

[johanna7272]

I tried Lyrica two different times and found it was a lethal drug for me.  I was more than half asleep all the time, I was driving my kids to school in this state and I am thankful that I did not get in an accident.  First time I took for a week with no change in sleepiness; however, became pain free.  The time was worse, stayed on for two weeks, my husband was aware but I was still doing things that should not be done when medicated.  And I did not care.  Just slept all the time or dragged myself out of bed to take care of the kids.  WAS VERY BAD for me.  If it had not knocked me out so much, it was good for the  pain.

[lady2882Nancy]

fishinghat

My highest dose was 150mg a day which I took as 50 in the morning and 100 in the early evening.

No I didn't have any really bad withdrawals. I took my time getting off of it and at the end went from 50mg once a day to every second day and then every third day. When I got to every third day I took it once then just stopped.

 

Johanna

When did you take it and how much? Of course every drug can be different for everyone who takes it. As I already have a sleep disorder (I fall asleep but do not stay asleep long) not many meds make me sleepy (even sleeping pills only give me 3 to 4 hours sleep lol).

I am always tired so have learned to function without much sleep lol

[lady2882Nancy]

Gee all this talk lately of Lyrica has me wondering about taking a low dose of it for the pain.

[FibroGal]

This is all super helpful. I have decided to do the bead counting, but my next drs appointment isn't until April 24th so I will have to be in pain for a while until I talk to him. Ughh. I don't know if I want to go onto another drug with problems though.

Shirl, are you taking anything for pain now?

Fishinghat, has your wife ever thought that she wanted to come off of it? I'm asking in reference to whether she feels that it was really worth getting on it, or if she is just staying on it because it is the better option right now... Idk...I went through so many years without anything but flexeril and Vicodin and I already hate taking meds, so I'm not a real "let's test this one out or that one"...Ughh...so confusing.

Lady2882Nancy, I've been having memory issues really bad on (and before) cymbalta, so,I think I can manage that. *grins*. If you don't mind, why did you go off? I understand your sleep problems. I just did a sleep study a few nights ago because I have insomnia (hard to fall asleep and then stay asleep, even with the pills, and something my doctor says is Circadian rhythm sleep disorder, shift work type). So I can't fall asleep, stay asleep and during the day I'm exhausted but can't go to sleep...lol...it's so silly. We could all add up our issues and give some medical facility a really good group for lab studies!!

Johanna7272, that is a major concern for me right now on cymbalta. I already suffer from insomnia AND chronic fatigue syndrome, and it's so difficult to function. I really want to get away from that...that's something to think about! Thank goodness you made it past that point with no harmful ills to your family. We all push because we have to, and it's so hard to not do things that we have to do...because we have to.

Thanks everyone!

[fishinghat]

Good to hear from you Fibrogal. My wife has tried to wean off the lyrica but the pain just comes right back. It has been very effective for her pain and has she has had minimal sleepiness and weight gain with it. There isn't anything that they can do to fix her back and neck so it looks like the lyrica is here to stay.

[lady2882Nancy]

 FibroGal

The only reason I went off was that a RA specialist wanted me off most of my meds as he felt that I was taking more than I needed and that some of my problems where due to the meds I was on. At the time I was taking about 12 different Rxs never mind the OTCs.

He was right about some of the meds causing me problems.

I had been on the Lyrica just over a year and so once I was off my hubbie didn't want me to take it (the whole memory thing and the cost) so since my pain was so low I didn't bother going back on it.

 

As to the fibro - they told me that I had it in 1996 and was given amitriptylene for it - the RH specialist says I don't have fibro. He says I have a sleep disorder and lack of proper sleep causes some of the same symptoms as fibro. I'm sure you know what I mean - the muscle, joint, and allover body pain.

I also have IBS but just the diarrhea and colon spasms. I still take the amitriptylene as I do not sleep at all without it and it also helps control the IBS a bit. 

 

 yes wouldn't we make for interesting patients. They could use our cases for a medical paper on why doctors shouldn't use the "If at first you don't succeed, try, try, try again" approach to Rx meds for patients lol

[Heartfeathers]

I was on Cymbalta for over 8 years for fibromyalsia pain.  I quit taking Cymbalta after discovering research that linked the disorder to a deficiency in our endocannabinoid system. I am now 10 months off of Cymbalta and I have not needed pain medication at all since using this natural medicine.    And a good Indica tincture puts me right to sleep.   

[Want2bfree2013]

HI there fibrogal :-)

 

I started using Butrans Patch in February!   A note about Lyrica- simply did not work for at all.

 

Hope your doing well!

 

Shirl

[FibroGal]

Good to hear from you Fibrogal. My wife has tried to wean off the lyrica but the pain just comes right back. It has been very effective for her pain and has she has had minimal sleepiness and weight gain with it. There isn't anything that they can do to fix her back and neck so it looks like the lyrica is here to stay.

That's good to know. I think I will talk to my doc abt this alternative to cymbalta. I empathize with your wife. I'm glad that she has found some relief. Did I read about a mole with you? Any results? I hope it all turns out okay.

[FibroGal]

 FibroGal
The only reason I went off was that a RA specialist wanted me off most of my meds as he felt that I was taking more than I needed and that some of my problems where due to the meds I was on. At the time I was taking about 12 different Rxs never mind the OTCs.
He was right about some of the meds causing me problems.

 yes wouldn't we make for interesting patients. They could use our cases for a medical paper on why doctors shouldn't use the "If at first you don't succeed, try, try, try again" approach to Rx meds for patients lol

First of all, wow!! I thought I had a lot with the 4 I'm on now and the occasional Vicodin. (I don't bother with the flexeril anymore, because it doesn't work any longer for me). But 12...wait that was too gentle...TWELVE???? *grins* I'm glad you could come off of some...

As for your other comment "try, try, try again". That is sooooo (sad) funny!!!!! I literally laughed out loud because we all know how true that is!

[fishinghat]

The mole was removed on Monday and the dr is optimistic about the outcome. I will know around next Monday. Thanks for the well wishes.

[FibroGal]

Want2bfree Re: the patch..if what Lady2882Nancy says is accurate, I too have negative reactions to latex... :-| eek!

[lady2882Nancy]

Fibrogal

If you get rashes from bandaids or from patches, I would advise you to get latex free bandages and watch out for balloons (they release alot of latex in the air when popped). This is one of those allergies that can start out as a sensitivity and then become full blown life threatening allergy with continued exposure over time so it is best if you avoid latex all together.

[FibroGal]

Omg...I never even thought about dumb bandaids. These medical "marvels" are going to be to our detriment.

[lady2882Nancy]

Here I sit just after midnight my time and wide awake and restless.

Isn't Crapalta a wonderful drug??? ------------------------- NOT

Was up 4 times last night and tonight could be worse.

Time for another cup of lemon balm tea for me.

[FibroGal]

So, I started the bead counting a couple of days ago. I use tweezers to get the beads. I took 10 out on Wednesday, 20 yesterday, and today just skipped taking it...tomorrow I'm going to jump to 50 and see how I feel...then 75 then skip...then 125, 175, skip, then 250, skip. I started at the 60 mg level, and so far so good...

I'll keep posting my progress.

[lady2882Nancy]

Good to hear that you are doing okay FibroGal.

I'm on day 18 of tapering and going strong thanks to all the wonderful info and support here.

Had a few problems caused by the drug itself but they just made me more determined to get off.

[lady2882Nancy]

GreenMachine - Thank you, thank you, thank you, thank you, thank you, thank you

Yippee

Hubbie took me to the city and we found some L-theanine. OMG I wish I had found a way to have gotten some sooner. For the first time since cutting from 60mg, my headache went away.

 

Double Yippee as I was so anxious being out around all those people and the traffic was horrible with the ice and snow so I was practically having panic attacks from the anxiety and my heart was pounding. I was shaking so bad hubbie was getting really concerned and that one little pill was all it took to calm me right down. I relaxed and enjoyed the rest of the day. Hubbie even took me out for a nice supper before we headed home.

 

Woohoo - I actually feel awake, alive and full of hope.

[GreenMachine]

I'm so glad to hear the theanine worked so well for you!  I love that stuff...I ran out for a few days, started having trouble with sleep again as well as mild anxiety/nervousness/etc...so went out and got some more last night and oui, là!  All good now!

[FibroGal]

Oh man...so I'm getting what I've read several here have gotten...vivid almost seems real dreams. I have been screaming myself awake several times throughout my sleep. I even freaked my boyfriend out as I was sleeping downstairs on the couch, and he heard me screaming several times from upstairs, but he thought it was just outside neighbors...until my final really loud one...no cymbalta Friday or Saturday. Probably skip today too.

[FibroGal]

Just showered for the day...4pm...pretty much first time really getting up besides a few bathroom breaks...now I'm starting to feel a little light-headed / dizzy. Like if I move my head to the right, it takes my brain another 5 seconds to catch up...just going to keep posting my withdrawal symptoms.

[fishinghat]

I remember those symptoms well fibrogal. Just keep remembering...they do go away.

[lady2882Nancy]

Hey there FibroGal - it sounds like it is getting rough.

How many beads are you taking out now?

You may have to stay at the same dose for a few days to level out.

I have been tapering for 20 days now. I would love to be completely off but I don't want to put myself through that kind of torture.

You are braver than me. I do get some wierd dreams (and I don't normally dream at all) but nothing too terrifying yet lol.

Hang in there girl you can beat the Crapalta

 

Take care of you

Nancy

[FibroGal]

Thanks Fishinghat and Nancy! I haven't taken a pill since Thursday. Today I feel a little better. Dreams are getting better...just a little dizziness, but not like before. The stupid sweats are turning into day sweats now. I live in the DC metro and it snowed today and was 26 degrees with the windchill, but I was wearing no sleeves and still felt hot. (Of course I had on a jacket when I stepped outside, but otherwise my arms were out.)

Another thing I'm noticing is I can't stop eating...Ughh...is this normal? When I started on the medicine, I did notice my appetite was suppressed. I'm afraid I'm going to just eat eat eat...even though I'm not hungry, I have this string desire to eat...could it be from all this sweating?

[GreenMachine]

I'm 2 days shy of 6 weeks clean off Cymbalta but I remember that first and second week very well...so hungry, but also so nauseous.  But it really wasn't hunger, it was just a need to satisfy impulse and I took it out on food...also went on a mild spending spree which for me is very out of character.  So you're going cold-turkey?  From what dose and how many days has it been?