72 replies to this topic

[DoneWithCrap]

I'm so mad right now I want to scream!
I can't actually scream because my voice has been messed up for the past year for some unknown reason. I'm a basket case right now.

First off I will introduce myself. My name is Renee. I'm 48 years old, I have 4 kids aged 14 to 22 and I'm married to a wonderful man. I started taking Cymbalta a lot of years ago (sorry but I have no concept of time... I just know it has been more than 5 years could be 10) to help with fibromyalgia. My NP felt it would be great for me since I also have PTSD, depression and mental health issues. It did help with the fibro pain. I was taking 80mg a day (60+20 every morning) but then dropped it to 60mg because of my insurance. I didn't want to pay the $60 copayment for 2 Rx ($120/month). I'm currently taking about a dozen Rx / day for various health problems.

After reading up on Cymbalta, I think most of my health issues are side effects! I just keep getting sicker and sicker. It seams like every time I go to the Dr, they prescribe something new.

I accidentally missed my cymbalta for 3 days. Today was the third day and I finally recognized the withdrawal. I have missed doses before and know how bad it is with the head pinging, so I am usually very vigilant about taking it. The problem is that my body and mind are so screwed up right now that I can't remember anything. Forgot to fill the scrip as soon as I noticed I didn't have enough to fill the entire week and then forgot they were not in my med dispenser. I take a handful of pills every morning and night and just trust that I filled the dispensers properly.

I have been on cymbalta so long that I don't remember how I felt before I started it. I know I was in a lot of pain. My dr diagnosed it as fibro because of the pain and high levels of ANA and C-reactive protein. I never saw a rheumatologist until last month. I finally went to one because I'm now in pain most of the time. My right shoulder, butt and leg are so affected that I have a hard time driving due to weakness and pain. I have dry eye syndrome (got plugs but that didn't help so I now use Rastas eye drops) and dry mouth so bad it is hard to talk because my tong sticks to the roof of my mouth. My rheumatologist initially thought I had Sjögren's syndrome and did more blood work. The results indicate a more serious disease called polymyositis or mixed connective tissue disease. He started me on low dose prednisone to see if I improve. Now my blood pressure is too high so I need to taper off that.

My pain and confusion symptoms come on so suddenly that I will feel like the prednisone is the answer one minute then BAM! I can't walk right I have a hard time talking, studering and word retrieval problems extreme weakness on my right side only to be followed by a migraine. Photophobic and phono phobic with blurred vision, nausia and dizziness. I have had these episodes in the past, but they are coming on more frequently and more severely.

I'm now wondering if all my problems are side affects of the cymbalta? I know one thing for sure, I need to get off the poison.

I have tried to stop it before by decreasing my dose by 20mg/day for a week at a time but just going from 60mg to 40mg my pain increased and I decided I couldn't go off of it. Now I'm in so much pain I don't think I'm getting any benefit from it, and in fact it is making me sicker.

I even had sinus surgery due to chronic sinusitis but my sinuses are still chronically inflamed.

When I read that it takes months to withdraw from this crap, I just wanted to cry. What is the fastest way to get free from this poison?

[Flossy]

Hi Renee, my heart breaks for you, you sound so confused and panicked, I truly truly know the feeling. I too am in the harsh withdrawals at the moment as cymbalta was causing me hyper mania amongst other things. I'm not sure about your other symptoms but this drug sure messes with you, I really hope you get some more productive replies, just wanted you to know you are not alone! I cried for 3 hours today for no reason! So many side effects from the drug itself and from withdrawing from it. Hope you feel better soon!

[DoneWithCrap]

Thank you Flossy.
I hope you feel better soon too.
If I had known what this would do to me, I never would have started taking it.
Thank you for replying so quickly ☺️

[Jones]

Hi Renee,
I cannot sleep either so I think I may be the first to see your post. There will be a lot of people answering your question soon and welcoming you.
Personally I tried the cold turkey method and after a few trips to the emergency room and several to the doctor with some kind of mega-migraines vomiting all the way there, I decided to go back on the stuff. I found this website and found the answer for me was the bead counting method which I thought was genius. It is not fast but it was the only way I could do it.
You will be able to decide what works for you after reading people's experiences on here.
This is doable. Glad you found this place.

[Jones]

So not the first !

[DoneWithCrap]

I just open a cap. ARE YOU KIDDING? How can i count those with all my twitches and muscle jurks? They will be flyiny all over my house!
Im going to need to hire my kids to do this.
Who am i kidfing? They have ADHD lol

PS. I dont sleep

[Flossy]

I'm not bead counting per say, I'm just roughly tipping a little out at a time. Still having withdrawals but not as severe as before! The less you remove the less the withdrawals! Do you have a good Dr? I went off Effexor years ago and was hospitalized due to needing benzos to get through it. Maybe a possibility you are too sick to cope at home? Not sure what country you are from, I'm Australian and our health system is free, I realize not all countries have this as an option without paying a lot of money

[Flossy]

I'm not bead counting per say, I'm just roughly tipping a little out at a time. Still having withdrawals but not as severe as before! The less you remove the less the withdrawals! Do you have a good Dr? I went off Effexor years ago and was hospitalized due to needing benzos to get through it. Maybe a possibility you are too sick to cope at home? Not sure what country you are from, I'm Australian and our health system is free, I realize not all countries have this as an option without paying a lot of money

[DoneWithCrap]

Im in the USA. If i could check mysef into a hospital i would right now. It cost me $200 to go to the er.
I called my dr on Monday because i had a migraine and couldnt use the right side of my body. They said i could be seen Friday. At 2:30. Really! My blood pressure was 180/101 i was worried I. Was stroking out but that can wait 5 days.
It took 3 months to get in to see a rheumatologist then 2 months. For a follow-up. I live in Massachusetts where we have some of the best doctors in the world. You just cant see them for months.

[Flossy]

That's awful, here if you presented with these symptoms you would likely be urgently seen by a specialist free of charge! I suggest if you get so sick that you cannot cope, call an ambulance( is that a free service there?). Surely you have to receive treatment if you are brought in by an ambulance? I strongly suggest in the meantime that you reduce your dosage by removing beads instead of stopping large dosages at a time! If not possible to count, then estimate, at least you are not shocking your system so much. I'm like you, so keen to get off the stuff, however I realize as strong minded as I am, I really need to listen to others who love and support me at this time, as my judgement is coming from a mind hellishly withdrawing from a drug. Have faith in others you trust. Is there a crisis line you can call for resources available to you? We have lifeline here that will refer you to services available to help you through tough times, there's probably a lot more available than you know. Suffering alone is the worst. My husband came home from work when I was so upset for no reason today, I feel much more secure and less scared now.

[DoneWithCrap]

Yes there is a cost for the ambulance which takes you to the ER and you still pay for the ER.
My husband has been through a lot with my mental health issues. I was hospitalized for nearly 2 years from 2001 to 2003 including a year in a state institution. He has become numb to my pain and only shows concern when i ask for help. He is great in a crisis but can't be bothered with my "normal" dysfunctional heath problems.
Even with my condition being acute, he is going on a 6 day camping festival this Tuesday. I decided not to join him yesterday when i realized i would have to drive the 300miles myself. I don't blame him for going this is an annual festival that we go to and have already invested lots of money into it and there are a lot of people counting on him being there, but the timing couldn't be worse. I have been there 3 or 4 years and didn't go last year because I was too sick. I was so depressed last year by being home alone that i was going to go this year but there is no way I can handle the drive, the heat or the loud music.
At least my children won't miss out on it. I frequently feel guilty that I. Can't do more with them.

[Flossy]

You've had a really terrible time! I really understand the guilt, I know my kids must be so sick of me being sick however that's not your fault, illnesses are not what we choose and I think my kids will grow up more independant, resilient and compassionate because of it! As for your husband, I get it, it can be very tiring and draining living with someone who is sick a lot of the time, but once again, not what you've chosen and we don't get the luxury of a break when we're tired of it all! You can only play the cards you've been dealt! That's life! It sounds as though you are near crisis, is there anyone who can check in or stay with you next week? I know I feel very comforted by not being alone. Perhaps your GP may be able to help if you are in need of crisis care? Please be aware that the negative thoughts and feelings you are having are only temporary and coming from a mind very affected by withdrawals, it is not you!!! There are some great, knowledgeable people on this forum, I'm not sure of the time there, but when they read this post, hopefully they are able to point you in the right direction with regards to services you can access in the US! :-)

[Flossy]

http://www.clearlife...th_Services.pdf
Not sure if I'm crossing the line, but found this, not sure if it will be of any help, just thought I'd pass it on!

[DoneWithCrap]

Thank you for the link Flossy, but I do have insurance just high copayments and I have Medicare, which is federal disability insurance. I do have to pay deductibles and copayments but the biggist problem is getting an appointment with the right kind of doctor. I don't need or want inpatient mental health care right now, I need medical care right now.
I have a psychotherapist that I see once a week. She is awesome. I have been seeing her for 13 years. I'm just overwhelmed with the thought that this poison has been the cause of my physical symptoms. After all, I started taking it FOR pain!
I guess what I will do is taper off very slowly until my family come home and then try tapering a little more aggressively when I'm not alone. We do have another camping trip planned for mid August. After that there are no more trips planned until next April when we will be going to Disneyworld with the high school band and chorus. Any chance I will be free from this in 9 months? ...To think that yesterday I thought it would no longer be affecting me in 3 weeks...

[fishinghat]

ReneeRJ, welcome. I read your posts and it is sad what you are having to fight your way through. My best wishes and prayers.

 

The fastest way to get off this is not the right question.  lol  If you cold turkey it can take 5,6 or 7 months to get some stability and begin feeling human again. Bead counting, a slower but easier way to get off the cymbalta, would take months as well to wean and then deal with the remaining withdrawal. Either way is tough but bead counting gives you better control.

 

Given your variety of painful conditions it is clear that your best bet is to have something to help you during the withdrawal. Most drs prescribe Ativan (lorazepam) but is very additive and has its own withdrawal. Both clonidine and hydroxyzine help with the psychological issues of withdrawal but not the pain. Both also tend to lower blood pressure. If either of these might be of interest be SURE to check and see if they are compatable with your other current meds.

 

God Bless

[Flossy]

Well I went from 180 to 120 in 6 weeks, and am now alternate days 90 & 120! So I'm thinking you should be free well and truly in 9 months, even if you were to go really slow. I realize now that as I'm getting lower I'm going to have to go slower. I realize too that once you've lowered your dose, if it's a big drop, you have no choice but to suffer the withdrawals for a few days, as going back up takes time for the drug to kick back in. I've learned a lot in 6 weeks, I didn't think the withdrawals would be so intense, I was adamant I would be off the drug asap, however suffering such awful effects has forced me to slow down. It sounds like you have good resources in case you need it, which is great. I am taking Valium and Xanax only when I cannot cope anymore to ease the intensity! I think I get myself into such a state that my anxiousness causes the symptoms to be worse, once I have a Valium I'm so much more relaxed, even after it wears off. I'm also taking melatonin slow release to help me sleep, it's a non addictive naturally occurring in our bodies drug! It's been a life saver as I'm getting sleep now. I've never had trouble sleeping until going off cymbalta. It's definitely a marathon and not a sprint, but looking fwd to the long term benefits of being off this awful drug. Have you watched "orange is the new black"? I watched it after my last big drop when I couldn't do anything, highly recommend it if you need a good distraction while your family are away! Catching up on tv series is a definite positive side effect! Haha

[DoneWithCrap]

These are the meds I'm currently taking:

 

Duloxetine (Cymbalta) 60mg.....for fibromyalsia

Klonopin 0.5-0.75mg.................for anxiety/sleep

Klor-con M20 (potassium) X2....to maintain a normal potassium level (this is a lot and there is no apparent reason for my low levels)

Zantac 300mg...........................reflux (taken at night)

Provigil 200mg..........................sleep apnea and trouble concentrating

Trazodone 50-100mg...............depression/sleep

Prevacid 30mg.........................acid reducer/reflux (taken in the morning)

Restasis eye drops..................dry eye syndrome

Triamterene (dyazide)..............edema of lower legs, and sometimes hands and face (unknown cause)

Prednisone 10mg- ...................muscle and connective tissue inflamation (temporary treatment until Dx is determined by Rhematologist)

Advaia inhailer..........................asthma/ ?COPD

Spiriva inhailer..........................asthma/?COPD

Fluticasone nasal spray............chronic sinusitous

Lipitor........................................High cholesterol (...Oooopppsss. just realized that I ran out of this stuff)

 

Daily OTC meds:

Allegra...................allergies (I'm also getting allergy shots every other week for a multitude of severe allergies)

D3 2000iu..............because my husband told me to for one reason or another lol

 

I have recently stopped taking Lexapro (I only took it for a week but i was getting daily migraines and stopped)

Also stopped my estrogen Rx because I was still getting the hot flashes even with it. (one less drug)

 

I have had my gallbladder removed and a complete hysterectomy

 

My goal is to get off as many of this poison as I can (Except for the Lipitor. My high cholesterol is genetic)

 

 

I'm assuming that a cold turkey, everything at once is a bad idea.So where should I begin? 

I would like to note that at one time all I took was an SSRI and the Lipitor. As time went on Rx's were added to help with side affects

[air3333]

I was able to get down from 60 to 30 fairly easy (1 week of physcial withdrawal effects) I have a lot less confusion and am living so much better. All around my life is so much better reducing the dose. Anxiety and depression is way down. I am going to go down from 30 to 20 mg. I was on 90 mg and I was so confused for months on it and I can only compare it to the twilight zone. Your judgement is damaged when you are on the drugs, you may "feel" good but the reality is that the side effects are harming you. 

 

So the answer I think the Cymbalta directly causes confusion. Nobody knows for sure what it does to the brain. It is the most difficult things to study and the most complicated in the whole universe. The way psychiatrists treat it as if they know the mechanisms in the brain that cause these disorders and drug will counteract depression. 

 

You say the more drugs you are on the sicker you get. That I think is the reality. One has to take a stand with their physicians and demand to be weaned off. If you do not, then you will be on the drug treadmill the rest of your life - I feel like if I hadn't spoken up I would have never gotten down to 30 mg.

 

This has ethical ramifications for society - do we trust our doctors in everything they say? Risky drugs are not to be taken lightly, they can cause severe issues with liver, heart, and not to mention the mental side effects. 

[fishinghat]

Renee, with all your problems I am surprised that the only med you are taking is Cymbalta. Didn't you say you were also on

Prednisone and Rastas?

[DoneWithCrap]

Sorry about that short med list. I accidently entered before I was don posting because I tried to use the Tab.

And yes it did take me a couple hours to type the full list in. Sorry for the spelling errors

[thismoment]

fishinghat

 

You absolutely amaze me! Always! Thank you thank you thank you for being here!

[fishinghat]

No problem TM. Always glad to help. I feel the same way about you and FN and so many more who provide so much sage advice and strength for those who are suffering like we once were. God Bless.

[FiveNotions]

Fishinghat, OMG ... what fabulous information ... thank you!

[DoneWithCrap]

Thank you for the info. Im at the ER as i type waiting to see the doctor. I had an appointment. With my primary today 1 1/2 hours ago . I was experiancing a full blown episode right i was supposed to drive out. She sent me to the emergency room.

[fishinghat]

Let us know what happens and good luck.

[Flossy]

So glad you are there! Was really worried by your posts.

[Flossy]

FH you are a walking Simms!

[Flossy]

Thank god for you

[DoneWithCrap]

Back from the er. Nothing more tha a waste of time and money.
The summary report states that i was seen for headache and anxiy.
No mention of th fact that I was having extreme muscle spasms and weakness in my right arm and vommiting . They state that they did a head and a brain ct scan even though i heard the dr say just do the head.
They drew blood to check a bunch of things. The nurse dropped one of the vialsunder thebed before she filled it and I'm. Sure they only did a cbc. It also said they did a urinalysis. I know for a fact they didn't. Get any urine from me.

Follow up orders are to keep a headach journal and to better controll my stress.

Can I Give up now?
I hate doctors!

[FiveNotions]

Awww, Renee... doesn't that just beat all!

Do you remember the "Uncle Wiggly" stories from childhood? You might not have heard/read them if you're not as old as I am ... my mom read them to me back in the early 1950s ... anyway ... the main character was "Uncle Wiggly" ... he was an old rabbit, who always, if I recall correctly, wore a tophat and a tuxedo jacket ... he had very bad rheumatism and walked with a cane ...his best friend was a lady squirrel ... "Nurse Fuzzy-Wuzzy" ... she was chubby and motherly, and always wore a nurse's cap with a red cross on it and a nurse's pinafore ... She spoiled Uncle Wiggly rotten, and always gave him lots of love and attention and comfort, plus her very special "rheumatiz" potion ... and he always went away feeling ever so much better ...

Well, I have decided that each and every one of us here, and you especially today, need a Nurse Fuzzy-Wuzzy ... to spoil us rotten, give us love and attention and comfort ... and a big ol' spoonful of "rheumatiz potion" .... and maybe even tuck us into bed and read us a nice bedtime story with a very happy ending ...