Opinion: A Fibromyalgia Patient and Prescription Medicine

Opinion: A Fibromyalgia Patient and Prescription Medicine

I’ve always said….

it’s not what they tell you….

it’s what they don’t tell you.

I’m as guilty as the next person. When a doctor prescribes a medicine I usually take it. Now, there are a few of them that I haven’t. Cymbalta and Savella were two of them. I know myself and I know that if the side effects are icky…..well, I’ll quit. The problem is that we’ve become anesthetized to prescription medication. Again, I’m as guilty as the next person. We need to remember some of these medications are POWERFUL.

So I started looking.

I’ve included the sources at the bottom of this post. I was pretty amazed at what I’d found. What amazed me the most is that the FDA seemed to chide Eli Lilly (the maker of Cymbalta) about the fact that they had not designed a safe protocol for the discontinuation of the medication. They also don’t tell the doctors how severe the symptoms of that discontinuation can be.

Now, the class action lawsuits are coming out.

What? You mean you didn’t read the fine print?

Ok…we’ll settle. My bad.

You can’t quit either drug cold turkey, hence my reason for not taking them. The problem as far as Cymbalta goes is that it only comes in three dosages; 20mg, 30mg and 60 mg. Plus, it is a capsule so you can’t cut it in half. You are advised against opening the capsule so how are you supposed to wean off slowly?

Rosemary Lee

Rosemary Lee

I am not coming against anyone who chooses to take Cymbalta or Savella. These medications are approved for Fibromyalgia and for anyone who has a depressive disorder. All I am saying is that people should be aware of side effects and what happens if you stop taking it. Stopping doesn’t necessarily mean after weeks or months either. It can be after one dose but the longer you take it the worse the symptoms could be. Your doctor thought their use would be in your best interest. I just think all the information should be on the table. Some people may have no trouble with discontinuing these medications – others may be blindsided.

What are the symptoms of withdrawal?

Actually it’s called Cymbalta Discontinuation Syndrome.

Brain zaps that feel like an electric shock, suicidal thoughts, nausea and vomiting, headache, nightmares, diarrhea, excessive sweating, involuntary laughing or crying, tinnitus (ringing in the ears), extreme mood swings, paranoia, confusion, limb pain, fatigue, insomnia, anxiety, agitation, hypomania and seizures.

Discontinuation can be severe and extend for weeks and even months.

With Savella, there were adverse reactions during the clinical trials.

In the sources below, I also added all the information on Lyrica. Commercials make everyone think that you can take a pill and everything will work out and you’ll be happy. Just for the record: I hate that commercial. I’m not one of those people that are suspicious of doctors and conventional medicine. Medications are necessary but just have all the information so you can make an informed choice.

After all….

If Eli Lilly won’t tell you…….

The FDA will…….

In some archived obscure document……

Somewhere……..but I found it.

The sad part is the only ones who will win will be the attorneys.

Sources:

http://www.fda.gov/downloads/Advisor…/UCM172866.pdf

http://medlibrary.org/lib/rx/meds/savella7/

http://www.accessdata.fda.gov/drugsatfda_docs/label/2009/021446s013s014lbl.pdf

Rosemary Lee is a fibromyalgia sufferer who writes on the disease. She is a frequent contributor to the National Pain Report. Her blog can be seen here.

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Authored by: Rosemary Lee

There are 11 comments for this article
  1. Patty Castaneda at 4:38 pm

    I though I was going crazy! I take cymbals 60mg for 3 yrs now and I have every symptom you said the brain zapping is horrible and bad dreams I beat my husband at night kicking and screaming thinking someone is trying to kill me but I also take alot of other meds and never thought about this one. But it all makes since now that’s when it all started I gave even been hopitalized for Virgo I get so dizzy.Thank you for you information.

  2. Mona Twocats-Romero at 7:43 pm

    I am on cymbalta for fibromyalgia and Bipolar II Disorder, which is the almost always depressive form of the disorder. My major depressive symptoms have been improved and my pain levels have been slightly better some of the time. Once I ran out of the stuff and couldn’t get my refill for 5 days. I had apparently a textbook case with the brain zapping, tinnitus, all that stuff. If I hadn’t been able to get my refill when I did, I think I would have been forced to go to the hospital. It was terrible. I will not attempt to go off this stuff anytime soon after that experience. I get enough benefit from it that I doubt I”ll quit taking it for the rest of my life. I think it was the worst experience of my life with any sort of medication.

  3. dlefty at 9:21 am

    I take Cymbalta for pain- one type of pain only- the shooting pain that comes from a fused spine and the disc just below the fusion that is basically gone. It works incredible. I even went on the generic for at least 2 months and it did not work. Without question, my doctor approve the real medicine…and then in Jan 2016, Medicare won’t cover it. Here is a tip. I get many scripts (in doughnut hole now). Ask your pharmacy to give you prices as though you had no insurance. And, it comes out cheaper. They are RIPPING everyone off. And if you are in lower income, you can get state prescription discounts. But back to 60 MG a day of Cymbalta. Love it. And no side effects. As far as going off. at 54 and barely able to walk, I could care less if I am on it for the rest of my life. I fully expect the pills to be what kills me.

  4. Linda at 9:13 pm

    I have been taking cymbalta for over 10 years now, first for depression then for both that and Fibromyalgia. I have only had issues with mood swings when I forget to take it. None of the other stuff and only after being off for a few days. Cymbalta has worked great for me and my symptoms. I have not tried Lyrica but my neurologist suggested I may want to, I currently take Neurontin but still experience a good deal of pain I am also on a pain patch and hydrocodone. I don’t think people who don’t live with this disorder understand the impact it has on our lives.

  5. James Fugedy, MD at 8:10 am

    The first use of transcranial direct current stimulation (tDCS) for fibromyalgia was the Harvard study published in 2006. 5 20-minute tDCS treatments reduced the pain 50%. Marlow’s 2013 review recommended tDCS as a first-line treatment for fibromyalgia, because it was more effective than medications and produced no side effects. Subsequent studies demonstrate improved cognitive function and reduced fatigue. tDCS is non-invasive, painles, easy to do and without adverse or side effects. tDCS was recently certified for the treatment of fibromyalgia in Europe. Utilizing tDCS to treat fibromyalgia since 2007 and training patients to self-administer tDCS since 2008, I consider it to be the the most effective and most innocuous treatment for fibromyalgia currently available.

  6. Sandy Auriene Sullivan at 3:46 pm

    If you recall or happen to have seen my CDC comment shared on NPR I mentioned the horrible side effects of stopping these medications and that few even know how severe they are. Some make opiate flu look like hayfever or a case of sniffles.

    All information should be on the table. You know many have chosen to take lyrica or cymbalta for addiction fears only to end up addicted and it is starting to become a drug of abuse too. Lyrica – this through 3 hand – is on the streets.
    My argument has always been that my medication has a higher street value and that makes it a target not patient safety. Not one bit.
    doctors and pharmacists do not always know the info until a settlement and doctors and pharmacists have to keep up with a lot of news too. So when they were given this sample medication they really should have read the fine print too. Just like we all should do.

    Allow us to make an informed decision together.

  7. Jeremy Goodwin, MS, MD at 2:38 pm

    Excellent comment on SRNA’s and weaning. Not all AD’s result in a withdrawal syndrome, but to avoid the possibility I routinely do wean all of them or substitute in their place or as part of the wean other AD’s at smaller and smaller doses to successfully wean without withdrawal. It can be done. One needs to be creative and it isn’t rocket science. Any clinician should be able to do so and may contact me if necessary. Yet you are correct: companies ought to have in place means of weaning off this general class of medication (and all of them really where abstinence syndrome is a possibility).

  8. Audrey Liebl at 1:12 pm

    Good points by all. I tried Cymbalta, and it did do better on my pain, but also having Major Depressive Disorder I had to pay attention to my depression, which it didn’t control as well. I was able to switch back to Effexor pretty easily since they are both SNRIs, but I made sure to follow my doctor’s orders to a T.

    Not everyone has a doctor like mine who doesn’t like to prescribe anything until he sees the post-consumer data. But I still research, research, research. Do not think that even your doctor has been told everything by the drug rep, because the drug rep is there to sell medication and make money.

  9. Jackie studdard at 1:01 pm

    I am with you I cannot take lyrica no way will I ever ever put that in my mouth again what works for me is my pain medicine that helps me get around at least I can get up and do a little of something without it I couldn’t do nothing

  10. HJ at 6:55 am

    I was given Cymbalta. I discontinued it within the first week because I had what felt like a stroke. I couldn’t get my fingers to type on the adding machine. They just didn’t do what I tried to get them to do. Then, it felt like my mind hit a brick wall. My co-worker was sitting next to me. She asked me if I was OK (she later said I had a blank look in my eyes). I started to drool on myself.

    That was it… I’m relieved it happened so early in on the course and feel bad for others who are struggling with side-effects or trying to discontinue the medication. There is much we find out later about alternatives to opiods like Lyrica, Neurontin, Cymbalta or Savella.

    I was told Lyrica was only effective for about 20% of cases. I took it and had some pain relief. But I started putting on weight and my friends were telling me that I was becoming less socially active with them. I don’t know if I was tired or depressed but it crept up on me and I didn’t recognize it because I felt like the pain relief was a blessing. I wanted to back my dose down, but the doctor said that the level would be sub-therapeutic and suggested I discontinue instead.

    Neurontin gave me chalky stools right off the bat, which I understand meant that my liver didn’t like it. Got off that within week 1.

    I was offered Savella repeatedly but after my experience with Cymbalta, I wanted nothing to do with a similar drug.

    Tramadol helps me, thankfully… along with Mobic, lidocaine and baclofen. I had a diagnosis of fibromyalgia but the symptoms lessened considerably once I was diagnosed with Sleep apnea and treated for that with a CPAP. I still have widespread osteoarthritis and cervical spondylosis, hence the continued use of medications.

  11. heather at 5:44 am

    good article! I want to touch on one thing you didn’t cover. When a person is in pain from fibro or in a major depressive state their mind isn’t working right. How can they be held responsible for reading labels and precautions. They just are desperate to get better. The doctors need to take an extra five minutes and explain everything available regarding a medicine. It should be documented and signed by the patient. If their in a condition say mentally unstable then a family member should be present and sign. It is about time doctors do what is BEST for us and not their pockets.