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Benzo (and GABA) drug withdrawal is fibromyalgia in most cases??


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Hi, I have severe neuro pain constantly and parasthesias after ct klonopin and opiates 18 months ago. I dont know what Im supposed to do now. :'( Time doesnt seem to help. Meds seem to be my only option. I dont know how long I can tolerate this pain. IM ALREADY MESSED UP NEUROLOGICALLY SO WHAT DOES IT REALLY MATTER ANYWAY. :'( :'( :'(
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Hi, I have severe neuro pain constantly and parasthesias after ct klonopin and opiates 18 months ago. I dont know what Im supposed to do now. :'( Time doesnt seem to help. Meds seem to be my only option. I dont know how long I can tolerate this pain. IM ALREADY MESSED UP NEUROLOGICALLY SO WHAT DOES IT REALLY MATTER ANYWAY. :'( :'( :'(

 

Colleen!  :yippee::mybuddy: IT MATTERS!!!! :tickedoff: It matters because the whole reason you are here is because you have had a medication reaction! Once anything including a medication,fibramyaglia,virus,genetics, thyroid, lupus, lyme, etc etc ad naseaum has caused a super-sensitivity syndrome then you will be prone to more reactions. In particularly medication reactions. Your body has spoken! It does not like opiates or benzos in it's brain! :pokey:

 

I know it sucks to suffer like this but think about it. More medication won't fix toxic-metabolic encephalopathy! I wish it did! I suspect some of our stuff might be autoimmune too but so what if it is???.....do you really think after this that autoimmune meds would be a good idea? :o My doc's say no!!!!  :o

 

Bottom line we are all here because we have had a whopper of a reaction to a medication. If you need to get more help then maybe get some tests done for suspected reasons BEHIND why you had the reaction. Mitochondrial Disease tops my doctor's list but there are so many many underlying conditions that make us succeptable to CNS medication reactions that we might never know. It can be a combination of many things. For me it has been healing to know what was behind my reaction. It doesn't make me any less screwed but it makes me less stigmatized. It also got me help.

 

Think about it. :smitten::therethere:

 

 

 

 

 

 

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I'm trying to think about my hx with psychiatric and other meds and the timeline of my fibro diagnosis. I've always had migraines (since the age of 7, so was put on many drugs for that):

 

Prozac (2003) - sigma-1 agonist (1 year)

Amitriptyline (2004) - http://en.wikipedia.org/wiki/Amitriptyline#Pharmacology (many agonists) (1 year, tried again later on for sleep)

Imitrex (2003) - 5-HT agonist (8 years continuously/ approx 9 doses per month)

Lexapro (2005) - SSRI (1 year)

Ativan (2005) - GABA-a (2 years PRN)

Zanaflex (2005) - alpha-2 adrenergic agonist (3 years nightly)

Lortab (2005) - opioid (PRN for migraines - 6 years)

Cymbalta (2006) - selective reuptake inhibitor at the 5-HT and NA transporters (3 years)

Ambien (2006) - GABA-a (3 years nightly, 10 mg)

Topamax (2006) - http://en.wikipedia.org/wiki/Topamax#Pharmacology [acts at some subtypes of GABA-a] (5 years w/ increasing doses)

Abilify (2007) - http://en.wikipedia.org/wiki/Abilify#Pharmacology [many agonists] (6 months)

 

Dx w/ FMS in 2008 after increasing chronic pain, difficulty sleeping, increased depression, and many of the symptoms listed at Devin Starlanyl's site.

 

Increase Cymbalta (2009) from 60 mg to 120 mg by new psychiatrist

Propranolol (2008) - beta-blocker (1 year)

Told to discontinue Ambien on rapid taper of one to two weeks by new psychiatrist (2010)

Wellbutrin (2010) - alpha-1 adrenergic receptor, dopamine uptake inhibition, H1 receptor (3 months)

Lamictal (2010) - sodium channel blocker, maybe GABA (3 months)

Felt worse on increased Cymbalta, Wellbutrin, and Lamictal - c/t - admitted to psych hospital for suicidal thoughts

 

Reinstated Lexapro (2010)

Added Klonopin (2010) - GABA - (0.5 mg / 3 x daily)

Lyrica (2010) - http://en.wikipedia.org/wiki/Lyrica#Pharmacology (primarily GABA)

Put into clinical trial for long acting hydrocodone (2010) - opioid

Dropped from clinical trial (120 mg HC) b/c of changing AD's - forced to do a rapid taper of the opioid over 1.5 weeks (2011) - HELL!

Emsam (2011) - monoamine oxidase inhibitor

Baclofen (2011) - GABA-b (gone from 80 mgs per day to 20 mgs per day)

Ambien (2011) - to counter insomnia from MAOI

Switch from Ambien to Restoril (2011) - GABA-a

Seroquel (2011) - http://en.wikipedia.org/wiki/Seroquel#Pharmacology (many receptors) - Restoril/Klonopin not helping insomnia

 

I don't understand much about the receptors and agonists, but looking at the meds I was on before the diagnosis, I can't help but wonder if my CNS got messed up to some degree; and now looking at all the things I've been on and am currently on since the dx, it's just scary thinking about what sort of damage has been done to my body which are somehow causing symptoms that mimic FMS.

 

I saw a wonderful chiropractor that specializes in treating FMS and myofascial pain and she said the way my body responded to touch, and the muscle tone, etc. that she could assess, that I definitely had myofascial pain and not FMS. The physiatrist said the same thing. I think the drug companies want to push the idea that if your shoulder hurts and you have trouble sleeping, well, there you go, you must have FMS. Better take this new and expensive drug.

 

I am hoping that once I can get off the meds that I really don't need, and my system can return to some kind of normal state, much of the chronic pain will also subside in time, as all these different receptors begin to heal and function normally again. I know that during the process of the Lyrica tapering, my pain levels have gone up, but that happened when I went off of the opiates as well. Eventually, I sort of normalized (although my opioid receptors are so sensitive that if I need pain medication, I have to take a very high dose to get any relief).

 

All of these ideas are very interesting and things I had never thought about. I just took what was handed to me. When I got my original dx, to the doctor's (rheumy) credit, she told me the best thing I could do for myself was gentle exercise, watch my diet, etc. She did not want to go down any drug related path at all. It was later on, that psychiatrists began pushing more meds for different things.

 

It is a real possibility inkerbell. Drugs can damage the CNS for a lot of people...I know this happened to me.

 

Sorry you got slammed by the admin on the "just kidding" thread. It seemed to me to be obvious sarcasm.

 

Hugs, Robb

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I'm sorry about your misdiagnosis, Robb. I invested a lot of time, research, and worry about my diagnosis, and as I learn more, much from this board, I am amazed at just how powerful many of these CNS drugs are and how they might interfere with our body functioning. It makes me feel that much more empowered now, even though it will probably be a long time before my CNS gets healed, and who knows if it fully will, based on many of the responses about PWS. But information is power, and that's what's important.

 

I'm glad you got my sarcasm. I tend to lean on the dry sense of humor side, and that doesn't always come across online. I think it was you that posted that video of the psych office animation that sort of inspired my response. I was dying of laughter throughout the whole thing, which really made my day.

 

Hugs back at you,

Marie

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Hi WW, Thankyou so much for writing to me. I appreciate you sharing what you have learned from your recovery and brain rehab. I know you have been through so much...I hope I can remain as strong as you have been...I just dont know that I can...I am very tired and suffering. Was really just hoping that this was an excitoxic reaction from ct and that things would smooth out...6mg is a lot to ct from and the other stuff too all at once. I understand I need med help, but where to turn Im not sure. How r u doing? I forget about you guys in buddy space sometimes since they moved you so far downstairs....Love, Colleen :smitten: :smitten: 
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Hi WW, Thankyou so much for writing to me. I appreciate you sharing what you have learned from your recovery and brain rehab. I know you have been through so much...I hope I can remain as strong as you have been...I just dont know that I can...I am very tired and suffering. Was really just hoping that this was an excitoxic reaction from ct and that things would smooth out...6mg is a lot to ct from and the other stuff too all at once. I understand I need med help, but where to turn Im not sure. How r u doing? I forget about you guys in buddy space sometimes since they moved you so far downstairs....Love, Colleen :smitten: :smitten: 

Hello Colleen,

Sorry Colleen you are tired and suffering, I am still too. How your hubby is treating your daughter is not nice my hubby adores my daughter. I so wish you felt a bit better. I know how you feel my daughter has a lot of problems to. I dont think it a good idea to take other meds if I were you. As it will be another W/D you have to contend with...although you have the choice here in the U.K you dont you have to do what your G.P wants unles you can afford to go private and a benzo Dr if one exists which I dont think their is. I still cannot come on here very much as still very ill...Yes I was hoping too that things would smooth out for me too. But you were saying abut educating yourself,I understand a smuch as I can dont always like what I hear but you have to be prepared as well its not all smooth apparently anyway...you can feel quite well for a few days, weeks or months then it all can come back again maybe not as bad/intense as time goes on lets hope. But it can be so discouraging...unfortunately my pain has shown that I have got even more sxs and more intense.(I(From what I've read you have lost a pet/dog thats a shame unles I have got it wrong) ..As always Love and Prayers and Healing.

I dont know hw these detox places keep going."Hang In There", it may take longer than you thought for you to heal. I know I did I make promises I could'nt keep to my family I feel so foolish now..mind you its easier said than done as we know...Prayers and Healing Take Good Care Of Yourself Lots of Love Tess :smitten:X

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  • 2 weeks later...

This is definitely an interesting idea, and one I can easily imagine as possible. For my own experience with benzos over the past ten or so years, the fibro/muscle pain in neck, shoulders and thoracic torso issues, as well as problems with shin pain that made me once think I might have M.S.

 

I read enough to realize that I likely did not have M.S. or even fibromyalgia, and did come to the conclusion the fibromyaligiat seemed to be a sort of "catch all" diagnosis that more and more people were being diagnosed with. Kind of like chronic fatigue syndrome. So, I decided I didn't have it, and just dealt with the issues via chiropractic, neck exercises, acupuncture, yoga, icing, and sometimes heat, ibprofin and for a while there marijuana again, which I had not smoked for nearly fourteen years and had practiced sobriety for my inevitable addiction. The benzos seemed to quell the muscle stuff, i.e. diazapam (Valium), and then again, not. So, yes, I wonder.

 

Interesting idea for sure, and I believe it is a definite possibility, renzagliarobb.

 

Best wishes to you.

 

Grace~

:balloon:

 

Wish I knew how to bring more attention to this Grace. I feel it my duty to inform people, but lack the platform in which to do it. One of the many grand goals of government is to keep everyone ignorant...even in the USA.

 

Have a great one, Robbnoxious :):thumbsup:

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Hey Robb, :)

 

Keep kicking it forward in the thread by adding to it with updates or new information that you find, and share more of what your own insights are, and I imagine that more people will add to the discussion. I agree that we are under a cloud of ignorance when it comes to big pharma, although I don't really beileve that it's a goal of gov't per se to keep us ignorant. I think it's just fallen that way, and in big pharma's favor and the medical "industry" unfortunately; which, yes, do have the lobbyists circulating the so-called "necessities" of medicine and therein diagnosis that requires medication.

 

How are you doing? I hope you are having a good day today; happy Sunday to you, Robb! Do you have a regular blog for saying "hey" to you on, and checking in with buddies?

 

Sending you good wishes for your healing and recovery, buddy.

 

Peace and blessings,

Gracie~

:balloon:

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Hey Robb, :)

 

Keep kicking it forward in the thread by adding to it with updates or new information that you find, and share more of what your own insights are, and I imagine that more people will add to the discussion. I agree that we are under a cloud of ignorance when it comes to big pharma, although I don't really beileve that it's a goal of gov't per se to keep us ignorant. I think it's just fallen that way, and in big pharma's favor and the medical "industry" unfortunately; which, yes, do have the lobbyists circulating the so-called "necessities" of medicine and therein diagnosis that requires medication.

 

How are you doing? I hope you are having a good day today; happy Sunday to you, Robb! Do you have a regular blog for saying "hey" to you on, and checking in with buddies?

 

Sending you good wishes for your healing and recovery, buddy.

 

Peace and blessings,

Gracie~

:balloon:

 

Thanks Gracie:),

 

I have been on several fibro forums trying to let people know of the possibilties of the connection here and have steered some people towards this site too. Cannot tell if they actually made it here though because my screen name has changed since I joined and no one is allowed to share info. I know there is one actually because she has written me an email from another site saying she was here, Always good to recruit:)

 

I do not have a personal blog yet...I will soon, I imagine. Thanks for chiming in and keeping the thread going. I have been at this thing to long now between paxilprogress ad the fibro sites and am a little worn out on posting...I need a break from all the sad stuff that people talk about. I am a clown because, I think, that is my way of coping and not dealing with all the heartache...just me. I was an athlete growing up so I learned to deal with injuries...none were as long lasting as this stuff though.

 

As for how I feel, Not so hot...just made another cut (33%) cause I cannot get the drugs yet. I am still trying to find a place in mexico that sells less than the 10 mg pills of valium. I was an athlete prior to this wd tolerance and cold turkey so pain is nothing new to me...this is just wearing though as it is relentless. I think you probably know what i mean though:)

 

 

 

Again...thanks for chiming in Grace:) Hope to chat soon:)

 

XO, Robb  

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Hi Robbed,

 

I agree with you to an extent. Fibro and benzo w/d have a LOT in common. No doubt many ppl in w/d will be misdiagnosed with fibro. But there are many people out there who have been diagnosed with fibro that have never been on any medications.

 

I have a friend who has a theory about this and I tend to agree with her. Her theory is that fibro is caused by adrenal fatigue. And benzos are known to operate on the HPA axis, causing adrenal fatigue. Which is why adrenal fatigue, fibro, and benzo w/d have so much in common.

 

-P-

 

That's a good theory... I just know that this is a catch all diagnosis and drugs don't help in the long run.

 

Thanks for your post, Robb :) 

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Not knowing that the pain was a common sx of benzo w/d, I was sure I had fibro. And I was freaked out.

 

Funny thing, I went to the doctor and told him I had fibro symptoms and he just agreed and gave me more drugs.

 

Thanks for your post, Robb:)

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I'm trying to think about my hx with psychiatric and other meds and the timeline of my fibro diagnosis. I've always had migraines (since the age of 7, so was put on many drugs for that):

 

Prozac (2003) - sigma-1 agonist (1 year)

Amitriptyline (2004) - http://en.wikipedia.org/wiki/Amitriptyline#Pharmacology (many agonists) (1 year, tried again later on for sleep)

Imitrex (2003) - 5-HT agonist (8 years continuously/ approx 9 doses per month)

Lexapro (2005) - SSRI (1 year)

Ativan (2005) - GABA-a (2 years PRN)

Zanaflex (2005) - alpha-2 adrenergic agonist (3 years nightly)

Lortab (2005) - opioid (PRN for migraines - 6 years)

Cymbalta (2006) - selective reuptake inhibitor at the 5-HT and NA transporters (3 years)

Ambien (2006) - GABA-a (3 years nightly, 10 mg)

Topamax (2006) - http://en.wikipedia.org/wiki/Topamax#Pharmacology [acts at some subtypes of GABA-a] (5 years w/ increasing doses)

Abilify (2007) - http://en.wikipedia.org/wiki/Abilify#Pharmacology [many agonists] (6 months)

 

Dx w/ FMS in 2008 after increasing chronic pain, difficulty sleeping, increased depression, and many of the symptoms listed at Devin Starlanyl's site.

 

Increase Cymbalta (2009) from 60 mg to 120 mg by new psychiatrist

Propranolol (2008) - beta-blocker (1 year)

Told to discontinue Ambien on rapid taper of one to two weeks by new psychiatrist (2010)

Wellbutrin (2010) - alpha-1 adrenergic receptor, dopamine uptake inhibition, H1 receptor (3 months)

Lamictal (2010) - sodium channel blocker, maybe GABA (3 months)

Felt worse on increased Cymbalta, Wellbutrin, and Lamictal - c/t - admitted to psych hospital for suicidal thoughts

 

Reinstated Lexapro (2010)

Added Klonopin (2010) - GABA - (0.5 mg / 3 x daily)

Lyrica (2010) - http://en.wikipedia.org/wiki/Lyrica#Pharmacology (primarily GABA)

Put into clinical trial for long acting hydrocodone (2010) - opioid

Dropped from clinical trial (120 mg HC) b/c of changing AD's - forced to do a rapid taper of the opioid over 1.5 weeks (2011) - HELL!

Emsam (2011) - monoamine oxidase inhibitor

Baclofen (2011) - GABA-b (gone from 80 mgs per day to 20 mgs per day)

Ambien (2011) - to counter insomnia from MAOI

Switch from Ambien to Restoril (2011) - GABA-a

Seroquel (2011) - http://en.wikipedia.org/wiki/Seroquel#Pharmacology (many receptors) - Restoril/Klonopin not helping insomnia

 

I don't understand much about the receptors and agonists, but looking at the meds I was on before the diagnosis, I can't help but wonder if my CNS got messed up to some degree; and now looking at all the things I've been on and am currently on since the dx, it's just scary thinking about what sort of damage has been done to my body which are somehow causing symptoms that mimic FMS.

 

I saw a wonderful chiropractor that specializes in treating FMS and myofascial pain and she said the way my body responded to touch, and the muscle tone, etc. that she could assess, that I definitely had myofascial pain and not FMS. The physiatrist said the same thing. I think the drug companies want to push the idea that if your shoulder hurts and you have trouble sleeping, well, there you go, you must have FMS. Better take this new and expensive drug.

 

I am hoping that once I can get off the meds that I really don't need, and my system can return to some kind of normal state, much of the chronic pain will also subside in time, as all these different receptors begin to heal and function normally again. I know that during the process of the Lyrica tapering, my pain levels have gone up, but that happened when I went off of the opiates as well. Eventually, I sort of normalized (although my opioid receptors are so sensitive that if I need pain medication, I have to take a very high dose to get any relief).

 

All of these ideas are very interesting and things I had never thought about. I just took what was handed to me. When I got my original dx, to the doctor's (rheumy) credit, she told me the best thing I could do for myself was gentle exercise, watch my diet, etc. She did not want to go down any drug related path at all. It was later on, that psychiatrists began pushing more meds for different things.

 

Inkerbelle:),

 

I just realized how much work you have added to this posting with your story and links, history etc...Thank you ;)

 

Be well, Robb

 

PS - see you in chat:)

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Hi, I have severe neuro pain constantly and parasthesias after ct klonopin and opiates 18 months ago. I dont know what Im supposed to do now. :'( Time doesnt seem to help. Meds seem to be my only option. I dont know how long I can tolerate this pain. IM ALREADY MESSED UP NEUROLOGICALLY SO WHAT DOES IT REALLY MATTER ANYWAY. :'( :'( :'(

 

It is, of course, up to you...I just want to make ppl aware of the possibility.

 

Thanks for the post again, Robb:)

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I'm sorry about your misdiagnosis, Robb. I invested a lot of time, research, and worry about my diagnosis, and as I learn more, much from this board, I am amazed at just how powerful many of these CNS drugs are and how they might interfere with our body functioning. It makes me feel that much more empowered now, even though it will probably be a long time before my CNS gets healed, and who knows if it fully will, based on many of the responses about PWS. But information is power, and that's what's important.

 

I'm glad you got my sarcasm. I tend to lean on the dry sense of humor side, and that doesn't always come across online. I think it was you that posted that video of the psych office animation that sort of inspired my response. I was dying of laughter throughout the whole thing, which really made my day.

 

Hugs back at you,

Marie

 

Yeah that doctor video was me (LOL) I will post it again.

 

xo Robb

 

http://www.youtube.com/watch?v=Bn6orT2jKN0&feature=player_embedded

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ROBB, wish i had seen your post earlier. you damn right i agree with what you are saying. The fibromyalsia mimicks the w/d symptoms or fibro IS withdrawal symptoms. there is some really weird crap going on with the FDA and the pharma co's. Michael Taylor is the vp of new foods and drugs at the FDA. He was the vp of Monsanto for years. conflict of interest? you betcha!!!!! rstud
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Thanks rstud for your reply. I am trying to bring attention to this. I was diagnosed with fibro and had been to several internet support sites and everyone just gets worse as they take more drugs to deal. Wish we could recruit some of these people to come here and get off the drugs instead of getting on them.

 

Robb

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Anyone ever been to a fibromyalgia forum and relate to what they see on this forum? This is where the lucky ones are (benzobuddies), When I recover from the so called "Fib"romyalgia I will definitely have something to say but since my concentration is often severely limited this is all I can do right now.

 

Anyone thinking that this is as rare as it seems better think again...this stuff is getting labeled as fibromyalgia - these days will one day be labeled the "Dark Ages of Medicine".

 

Drug companies beware..I'm coming back!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Robb AKA Robbedbybenzos

 

Put this in your butt FDA  :thumbsup:, or better yet...take it out!!!!!!!!!!!!

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Anyone ever been to a fibromyalgia forum and relate to what they see on this forum? This is where the lucky ones are (benzobuddies), When I recover from the so called "Fib"romyalgia I will definitely have something to say but since my concentration is often severely limited this is all I can do right now.

 

Anyone thinking that this is as rare as it seems better think again...this stuff is getting labeled as fibromyalgia - these days will one day be labeled the "Dark Ages of Medicine".

 

Drug companies beware..I'm coming back!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Robb AKA Robbedbybenzos

 

Put this in your butt FDA  :thumbsup:, or better yet...take it out!!!!!!!!!!!!

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  • 2 weeks later...
robb, hope you read this. i have been researching the connection of fibro and ssri's and benzos (earth clinic) ailments. this will validate all your concerns!!! most if not all benzos and ssri's contain fluoride. prozac is 16% fluoride. sodium fluoride was first used by the russians and the nazi concentration camps to control the prisoners and make them compliant. the sx are cognitive disfunction, brain tremors(zaps) chronic fatigue, joint and muscle pain and a host of other symptoms. fluoride is found in almost all RAT POISONS. also google fluoride in antidepressants. it might explain why it takes so long for someone to recover from this crap if we ever do,rstud
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robb, hope you read this. i have been researching the connection of fibro and ssri's and benzos (earth clinic) ailments. this will validate all your concerns!!! most if not all benzos and ssri's contain fluoride. prozac is 16% fluoride. sodium fluoride was first used by the russians and the nazi concentration camps to control the prisoners and make them compliant. the sx are cognitive disfunction, brain tremors(zaps) chronic fatigue, joint and muscle pain and a host of other symptoms. fluoride is found in almost all RAT POISONS. also google fluoride in antidepressants. it might explain why it takes so long for someone to recover from this crap if we ever do,rstud

 

Thanks Rstud,

 

I do avoid flouride. I do not take the Prozac anymore. I had no idea there was flouride in the Prozac (TY). I do not think we can avoid flouride as it is in the water and I need to shower. Sure do appreciate the post.

 

Have a good day, Robb :)

 

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Hey Robb,

I've been swamped with work and haven't been on in awhile, but I appreciate you keeping this thread going. I finished my Lyrica taper. You know, Lyrica, they drug they promote to treat Fibromyalgia! Well, I've been off of it about a month, and I can definitely say that I feel like I'm in more pain that I was before I started taking it for the supposed FMS! I feel like the FMS commercial and like I need some Lyrica! Now I'm educated enough to know that the weird muscle cramps and pain all over my body and revulsion to food is just a side effect of coming off the drug.

 

I'm also trying to quit smoking (smoke free for 24 hours). We'll see how long that lasts.

 

Best,

Marie

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Hey Robb,

I've been swamped with work and haven't been on in awhile, but I appreciate you keeping this thread going. I finished my Lyrica taper. You know, Lyrica, they drug they promote to treat Fibromyalgia! Well, I've been off of it about a month, and I can definitely say that I feel like I'm in more pain that I was before I started taking it for the supposed FMS! I feel like the FMS commercial and like I need some Lyrica! Now I'm educated enough to know that the weird muscle cramps and pain all over my body and revulsion to food is just a side effect of coming off the drug.

 

I'm also trying to quit smoking (smoke free for 24 hours). We'll see how long that lasts.

 

Best,

Marie

 

I took Lyrica too for a while (about a month) and it was a great sedater but I was in severe pain after the cessation and it wasn't there before...its a bad drug - the sister drug is neurontin (which I took too) but you probably already know that. I didn't sleep for weeks after coming off the Neurontin combined with the Cymbalta. I am really pulling for you Tinkerbell. Lets find out if we can prove this pain a bunch of bullcaca.

 

XO sistah, Robb :)

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