257 replies to this topic

[FiveNotions]

Kim, this whole process is "trial and error." While there are some general guidelines, what works / doesn't work is different for each of us. I think you've made good decision to try the bead counting!

[BJnFL]

BJ, good idea to start Friday, so you've got the weekend to see how it goes ...

About the generic ... is there any chance that the generic is causing you additional problems? I had a hellish reaction to just one dose of it last December (part of the reason I quit), and others here have had problems as well.

Also, the generics have a different number of beads in them than the brand, which makes the calculation on counting down different. You're going to need to open one of yours and count the little critters ... and let us know how many you've got .. FH and ThisMoment will have to help you deal with the bead count thing ..

And, FH will confirm this, but he can't take the ACV (Bragg's) either .. so he takes malic acid in pill form.. what type, I don't recall.

It just occurred to me today about the generic after reading some of your posts. I always thought the brand and generic were the same. Something to think about...

[BJnFL]

BJnFL

 

Welcome.

 

"The longer I am on this medication, the less it seems to help, and the quicker the withdrawal symptoms begin."

 

The Cymbalta has pooped out and you're pretty much at max dosage. Also the short half-life of 12 hours has developed a sharp edge which likely means you need to up the daily dosage. The choices are few: you either have to up the dosage, change medication, or come off Cymbalta. I agree with FN and FH who has outlined a sensible regimen for coming off-- let the symptoms be your guide with regard to how fast you wean; if symptoms are strong, slow down or even level off for some days until you stabilize. If I were weaning off again I would not plan a weaning-off time less than 6 months (but I would probably opt for a full year).

 

Speaking only for myself, my first choice for pain would be opioids. They have been with our species from the beginning, and do not physically alter the brain the same way SS/SNRIs do. Yes of course they are addictive, but addiction has no meaning when it comes to stopping pain-- I've been in pain and I've been pain-free on opioids and one is clearly better than the other. At the end of your life nobody will judge what strategy you used to enhance your quality of life.

 

You've been exposed for moderate-to-long term, and your discontinuation will be a struggle if you go too fast. Take your time. If your capsule has 300 beads in it, take out one extra bead a day and be done in 300 days-- that's an easy count, and you'll be relatively symptom-free. If you have a generic with fewer beads, you may have to take out one more bead every two or three weeks to make it go the length of time you have selected.

 

Seek appropriate medication for your pain (and anxiety if you have that). This weaning project is a very serious and honourable endeavour. This is your life, and nobody is judging you.

 

Take care.

That is the most information I've gotten despite hours of searching on why I am experiencing these increased symptoms and decreased help. Thanks so much. 

 

My biggest problem as far as other options for pain relief is that I just can't take much of anything as far as medications in general - a trait that runs in my family along with fibromyalgia! Almost everything bothers my stomach, or gives me hives, or makes me stay up for days on end...you get the picture. That is why Cymbalta was at first such a relief for me - I could take it and it helped without making me feel terrible. But I am at 90 mg and I don't want to go to 120 mg which is the max. So...I am going to start the weaning process and figure out exactly where I am at as far as my pain conditions and go from there. Back to the drawing board as they say. Really glad to have all of your support and knowledge in this.

[FiveNotions]

BJ, did you know that there's a serotonin-fibro connection?
 
I'm sure we've talked about it on the forum before, and I just did a site search, but I came up empty-handed. FH and TM, do you remember? Or have any articles stashed?
 
I just did some fresh searching, and here are a some items I found (I'll post them over in the "Cymbalta in the news" forum, where we end up putting all our "researchy" stuff):

-------------------
Low levels of serotonin in serum correlates with severity of fibromyalgia (2010, abstract only)
http://www.ncbi.nlm....pubmed/20591450
Abstract:

OBJECTIVE:
Fibromyalgia (FM) is a chronic pain syndrome of unknown etiology, which affects predominantly women. Among the alterations that have been implicated in the pathophysiology of FM, there have been postulated disturbances in serotonin levels and metabolism, and their implication in symptoms. The aim of the present study was to assess the correlation levels between low levels of serotonin and severity of symptoms in FM.

PATIENTS AND METHODS:
We determined serotonin levels using an ELISA kit in serum from 38 FM patients and 25 healthy individual. Results were correlated with symptoms regarding pain, depression, impact of disease (FIQ) and age.

RESULTS:
Serotonin levels were decreased by 45% compared to healthy individual. An important correlation was observed between serotonin levels and predetermined parameters of pain, depression, FIQ and age.

CONCLUSION:
Serotonin levels are correlated with severity of FM. In addition, there is an interesting correlation between serotonin levels and age of patients.

-----------------------
Confirmation of an association between fibromyalgia and serotonin transporter promoter region . . . and relationship to anxiety-related personality traits (2002, letter to journal editor, seems full length)
http://onlinelibrary.../art.10103/full

Serotonin and the Fibromyalgia Pathway (really old article, 1998, abstract only"
http://www.ncbi.nlm..../pubmed/9802912
From the abstract: "Fibromyalgia syndrome is a musculoskeletal pain and fatigue disorder manifested by diffuse myalgia, localized areas of tenderness, fatigue, lowered pain thresholds, and nonrestorative sleep. Evidence from multiple sources support the concept of decreased flux through the serotonin pathway in fibromyalgia patients. . ."

Coenzyme q10 regulates serotonin levels and depressive symptoms in fibromyalgia patients: results of a small clinical trial (2014, freely available)
http://www.researchg..._Clinical_Trial

[thismoment]

BJ

 

Had you taken another SSRI before you were diagnosed with fibromyalgia?

[fishinghat]

Nothing in my stash but I did find this 'conversation' we had.

 

https://www.cymbalta...ghat#entry41635

[fishinghat]

I also went through NCBI pretty thouroughly. Not one article linked seratonin to fibro. In fact nearly all the fibro articles start out with something like "While we have no idea what causes fibro....".  There is quite a few articles that explore the possible use of antideprressants for the pain of fibro but state that the benefits tend to fade with time. The drug of choice? Well of course our old freind Cymbalta!!! No suprise.

[Limbo]

Hey hey, I just wanted to pop into this conversation to let you know BJ, that I am in the process of bead counting, and it is going tremendously well. I take five beads out each day. I'm down from 60mg to around 20mg. Throughout this time, I have had to slow my weaning down in order to adjust to my symptoms. If I start to get very upset, very irritable, headachy, and feel hungover, I steady the dosage for a few days, then begin weaning again. This works very very well. 

 

I have way more good days than bad. I'm slowly finding the energy to exercise every once in a while, and my ability to orgasm is now back (too much info, I know, but well all know Cymbaltas common affect is lack of ability to "o" at the very least)!

 

I agree with the sleeping - on Cymbalta I happily slept 10 to 12 hours, now I'm back to 7 to 7.5.. It's nice to wake up with energy again. My nightmares have decreased along with the dosage.

 

Not all is well, sometimes I still get pretty fricken emotional because I'm still me and I'm still an emotional person;  this weekend my boyfriend and I planned to spend the day playing fun games, but instead, I spent an hour in the bed sobbing uncontrollably, saying "I know how Robin Williams feels, I just want to disappear, I can't stand seeing my reflection in you, and seeing how I am taking the fun out of today, I am too tired to do this". I felt like death. After the crying, I wiped my tears, got up, jumped into the cold Canadian water, and had a great day afterwards. It's not always that easy to shake a mood, but I give into it now.  I also listened to that sorrow, and stopped weaning for a couple of days to adjust, and what do you know, I steadied out again. 

 

I've been weaning since June, and can't say enough good things about it. It's still a confusing process, but way less so, way less miserable, and way more solid. On the whole, because of this forum, my bead counting has actually been pleasurable. I can't believe that coming off this drug didn't have to be miserable. It just takes a few months, and slowly, very slowly, I see myself returning in a stable way that feels good. 

 

I prefer this, because with my mental health, I need stability the most. Causing a huge disruption by going off the meds quickly would be doing the exact opposite of what I want - it would cause a huge unfortunate struggle that would remind me of why I went on the drug in the first place. 

[fishinghat]

Don't forget Limbo, when you get down to 20 beads or less it can really get bad quick. Around that time I would slow down to 1 or 2 beads a day.  Your report is a good one and I am happy with your progress. Well done.

[brzghoff]

Hey hey, I just wanted to pop into this conversation to let you know BJ, that I am in the process of bead counting, and it is going tremendously well. I take five beads out each day. I'm down from 60mg to around 20mg. Throughout this time, I have had to slow my weaning down in order to adjust to my symptoms. If I start to get very upset, very irritable, headachy, and feel hungover, I steady the dosage for a few days, then begin weaning again. This works very very well. 

 

I have way more good days than bad. I'm slowly finding the energy to exercise every once in a while, and my ability to orgasm is now back (too much info, I know, but well all know Cymbaltas common affect is lack of ability to "o" at the very least)!

 

I agree with the sleeping - on Cymbalta I happily slept 10 to 12 hours, now I'm back to 7 to 7.5.. It's nice to wake up with energy again. My nightmares have decreased along with the dosage.

 

Not all is well, sometimes I still get pretty fricken emotional because I'm still me and I'm still an emotional person;  this weekend my boyfriend and I planned to spend the day playing fun games, but instead, I spent an hour in the bed sobbing uncontrollably, saying "I know how Robin Williams feels, I just want to disappear, I can't stand seeing my reflection in you, and seeing how I am taking the fun out of today, I am too tired to do this". I felt like death. After the crying, I wiped my tears, got up, jumped into the cold Canadian water, and had a great day afterwards. It's not always that easy to shake a mood, but I give into it now.  I also listened to that sorrow, and stopped weaning for a couple of days to adjust, and what do you know, I steadied out again. 

 

I've been weaning since June, and can't say enough good things about it. It's still a confusing process, but way less so, way less miserable, and way more solid. On the whole, because of this forum, my bead counting has actually been pleasurable. I can't believe that coming off this drug didn't have to be miserable. It just takes a few months, and slowly, very slowly, I see myself returning in a stable way that feels good. 

 

I prefer this, because with my mental health, I need stability the most. Causing a huge disruption by going off the meds quickly would be doing the exact opposite of what I want - it would cause a huge unfortunate struggle that would remind me of why I went on the drug in the first place. 

 

 

i sure wish i knew about bead counting before it was too late. of course, i wouldn't have been able to afford it. even the generic was to cost me over $200 a month (no coverage until deductible.) just don't have that right now. i mean how could i have stayed employed at the same time/ going through this?. although that is/was a dilemma too from a cost perspective. my employer dropped all insurance for employees. we all had to go on the exchange. the more i make the more i have to pay for my insurance due to having to purchase through the exchange. regardless of how the law is supposed to work, hubby and i pay out 1/3 of our monthly income towards premiums with a $6500 per person deductible. i can't afford health CARE because i have to pay so @%$*& much for health INSURANCE. in the old days i could've had a policy for half that premium with that kind of deductible. 

 

can't bead count cause i gotta bean count! 

[FiveNotions]

well, Brzghoff, that's pretty much the situation I found myself on ... after I left my job last June (and before crapalta withdrawal hit), I had a great little individual policy that I could afford and that covered exactly what I needed (including prescriptions), with a low deductible.

 

Thanks to Obamacare, the company stopped providing individual policies, and told us all to "go to the exchange." I checked "the exchange," and the cheapest plan was double the monthly premium, and a massive deductible before prescriptions would be covered ... so high that my total annual Rx's wouldn't have reached that level, so it was all going to be out of pocket. I gave up, and went on Medicaid ....

 

Your issues sound obamacare-related as well.

 

Did you know that more people are now uninsured than before "the reform"? Yep, it busted what wasn't broke... (I read the whole damn 1,700 pages of the Affordable Care Act ...yes, I'm that crazy ...  ....  worst piece of legislation I've ever seen... not affordable, definitely not caring, but yes, it sure is "an act."

 

Apologies for the rant ... but if it weren't for o-care getting my plan cancelled, I wouldn't have had my adventure with Cymbalta withdrawal and spent all these months out of work ... although, in the long run, I'm glad it all happened, cuz otherwise I'd still be a zombie on that poison, and I'd never have found this wonderful place!

[brzghoff]

FN,

 

yeah, while obama care really screwed us, my former employer certainly played a huge part. i am really angry at them. they were the ones that dropped us forcing us onto the exchange. they are still saving money becasue the penalty is way cheaper than covering our premiums they met with us in small groups, the VP of benefits, in other words, the decision maker. she said the exchange would take care of us. i looked her in the eye and said some of the employees here make so little and are single moms with kids they already get food stamps. i said how dare the company make money off the taxpayers by sending everyone out onto the exhange. in my case, if i had stayed with my job i could have paid cobra at $1254 per month for hubby and i. or the exchange for $950 a month. as long as i worked we couldn't qualify for the subsidy. now we do, but it makes no difference. it still is the single most expense we have every month fortunately we have no mortgages on our home, or on our rentals. that's the only thing that keep us ging as hubby's work has dropped off considerably. okay, i'm doe o more AC rant - for now ;-(

[Limbo]

Aw man. I'm so sorry to hear about this expense problem....it's so unfair. 

I also pay for Cymbalta out of pocket (Canadian), at 30mg it's $80.00/month and at 60mg it's $150 or so, but I like my job and knew from the start I'd have to pay it, and that it would be ok, just a shitty expense. At the time I was thinking it'd be my life saver and was worth it.

 

Man. That really sucks about Obamacare, I had no idea it was so poorly received.

 

One pharmacist told me that if I were in a real jam I could call the company and they might send some samples to my Dr.

That seems impossible, but she said it worked for a couple of people. 

[FiveNotions]

Brzghoff, yep, that's one of the issues I identified when I read the draft legislation ... and a number of think tanks and analysts predicted the same ... but they were/are the conservative leaning ones, and the media ignored them. So almost no one knew how bad it was going to be until we got hit with it in "real time."

And don't forget, none of our elected asshats on the Hill read it ... Nancy Pelosi's now famous statement comes to mind ... “We have to pass the bill to find out what’s in it.” http://www.mediaite....ats-in-it-clip/

[TryinginFL]

FN...

 

That Pelosi comment has to be the most idiotic remark I have ever heard!  I will never forget it...

[brzghoff]

 

yes. people forget that the ACA is about health INSURANCE its not about affordable healthcare.  this law has nothing to do with the affordability or quality of your healthCARE.

 

limbo, when i had employer insurance cymbalta cost $80 a month. at one time my company (before a big merger) paid 80% of our premiums! just before they dropped our insurance totally, they paid 4%

 

check out the article i posted in the news section. enlightening. profit margin in health insurance industry for 2014 is only 3.2% big pharma is 20%. compare that to big oil , which fluctuates around 6%

[thismoment]

 "Nancy Pelosi's now famous statement comes to mind ... “We have to pass the bill to find out what’s in it.”

 

Oh dear. That's like, "We have to explode this nuke to see how big it is!"

[Tinker]

Wow compared to what you're paying in the US and Canada, it's cheap as chips here in Australia
( although that's probably the only thing here cheaper than the US) I was paying no more than $35 p/month with no concessions. Companies don't provide us employees with private health insurances here, if we want it, we source it and pay it out of our own pocket.

[FiveNotions]

Don't go giving Nancy any new ideas, TM...

[BJnFL]

BJ

 

Had you taken another SSRI before you were diagnosed with fibromyalgia?

I previously took Paxil and Prozac (SSRI?) back in 1996. Didn't do too bad on them, except for extreme weight loss on Prozac (I would forget to eat) and behavior changes (which I didn't realize until I was off the Prozac), i.e., doing things I would NEVER have done before. I really don't remember why I stopped taking the Paxil. These I took for hormonally-related (another story) severe panic disorder and depression. I went off the medications in mid-1997 when I got pregnant. Haven't particularly had depression since I had my son in 1998, but still fight that damn anxiety. I have taken low-dose anti-depressants (I remember Elavil, probably because I couldn't take it) with Klonopin for treatment of fibromyalgia.

[thismoment]

Hi BJ

 

My basic query is did the fibromyalgia appear after the SSRI Prozac? It's not uncommon for discontinuation symptoms to mimic other conditions or syndromes, and it's very common indeed for a doctor to prescribe an new antidepressant to a patient who is simply expressing discontinuation symptoms-- the symptoms are mistaken as a new condition.

[BJnFL]

Real quickly cause the bosses keep popping in ... 

 

Generic Cymbalta - 30mg tabs have 6 beads in them. I removed just one from one pill today. Took almost exactly at the 24 hour mark (about 3 hours ago). Starting to get a bit of "swimmy head" and nausea, and a little anxious (more than usual!). But can't really complain too much!

 

Will keep you all posted.

[fishinghat]

TM is good at figuring out withdrawal rates for the generic and I am sure he will get back to you soon.

[thismoment]

BJ

 

Don't rush it. Take out one additional bead every 2 weeks and see how it goes. You may need to make it 3 weeks between reductions. 

 

You will get symptoms in the first week and they will slowly go away. When you have become stable, that's when to reduce by another bead and be patient.

 

Psssssst . . . be patient.

[fishinghat]

He is absolutely right.

 

It is worth repeating.....patience!!!

[smacoy1973]

Ok, I have been off for a couple of weeks and now having major anxiety! Never had this in my entire life. My heart feels like it's racing out of my chest and I have a huge knot in my throat. I really don't want to take any other meds. Someone please tell me that this gets better.

[fishinghat]

The heart racing, pounding and the lump in your throat is from adrenaline and the stress. I have been through that many times over the years. Common. As your anxiety lessens so will these symptoms. Taking magnesium (chelated form is the best) will help so will deep breathing exercises. The more you think about it the worse it gets so find your favorite hobby and spend some time on that. Keep your mind distracted.

[smacoy1973]

Thank you so much, FishingHat! You are exactly right! The more I think about it, the worse it seems. I will definitely check into the magnesium.

[FiveNotions]

smacoy, congratulations on the two weeks off the crap!!

 

The anxiety is a very common "after effect" of the Cymbalta ... it arrives after the worst of the physical stuff has passed, and just sort of "settles in" for a stay, an "uninvited guest"
 
Try the chelated magnesium and breathing exercises first ... there are some threads here somewhere that talk about the breathing in detail ... try the search box on the home page ... if that doesn't work, let me know and I'll go back and see if I can find the links and post them here ...
 
If the anxiety continues and just gets to be too much to handle, ask your doc for meds to help you manage it ... benzos, clonidine or hydroxyzine ...

For example, I have had success with the breathing exercises, which I still do. But, during the past few months when I've been job hunting, they weren't enuf to manage the anxiety. So, I'm now using clonidine (a bp med, but prescribed "off label" for anxiety) ... it "down-regulates" the adrenaline ... FH can explain better than I can ... I also have valium (diazepam), but now only use that on the worst days ... but I may switch to the hydroxyzine, cuz the clonidine seems to be lowering my bp too much ...

 

 

[fishinghat]

Hate to tell you this FN but hydroxyzine can lower bp too.