The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Duloxetine/Cymbalta and ME/CFS

Discussion in 'General Treatment' started by Fluffytrousers, Mar 20, 2013.

  1. Sushi

    Sushi Moderation Resource Albuquerque

    OK, here is another experience with Cymbalta. I took it (low dose--20 mg) along with Strattera for OI. The Strattera worked miraculously for the OI but the Cymbalta also helped. I felt good on it. After a couple of years I decided to stop and tapered off over a couple of months. Didn't have any problems getting off it.

    So it is a very individual thing. Hope that those who had a hard time with it fully "recover" or whatever that might mean in our case.

    Dechi likes this.
  2. roxie60

    roxie60 Senior Member

    Central Illinois, USA
    I know there are some people that benefit from Cymbalta, I am not one of them, it nearly killed me. So just becareful with it, as Sushi said it is very individual on results.
  3. SOC

    SOC Senior Member

    Wow, nearly killed you, that's incredibly serious. How much time did it take from the time you first took it until you were near death? Was is sudden, or did you have some warning? How long were you in the hospital? Did you make sure your doctor reported a severe adverse event to the authorities? We need to make sure that near-death reactions to these meds get on the radar of the FDA. We don't want them allowing meds that bring people to a near-death situation.

    Do you have any idea what it might be about your body/health that caused this reaction with Cymbalta? I mean, was it something like you already have high blood pressure and it made your BP skyrocket? If other patients had the same situation, they would be warned to avoid this med. Nearly killed you -- that's really scary. So far, I've been lucky that no meds I've tried nearly killed me. Some have made me feel like crap, but that's a typical feeling for ME/CFS, so not earth-shattering. Nearly killing someone is a whole 'nother ballgame.
  4. Jenny

    Jenny Senior Member

    FWIW I've done well on duloxetine. Had bad side effects at first (nausea, severe headache) but these stopped after a few weeks. I couldn't cope with 60mg as it seemed to cause insomnia, but 30mg is fine. The only thing it's helped with is pain, but that is now substantially less.
    TCP36 likes this.
  5. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

    I hope you are feeling better now and recovering from your ordeal. I know that being rushed to hospital because of this was very scary with my BP and HR all over the place. I could hardly breathe. The diarrhoea and GI problems lasted over two months and my weight plummeted. I could barely keep any food down and my GP was very concerned, as was my family and myself. I am now functioning at 50% of what I was formerly and that has been very upsetting. I took this specifically for severe neuropathic pain, namely Autonomic Neuropathy and Peripheral Neuropathy which have heave from throat to toes. No likelihood of it going as it's autoimmune-related. The ME started in 2004 and I have tried various treatments and meds over the years.

    All personal testimonies and responses and that's what they are.

    Good luck to everyone and I hope we all improve once more. I could never endorse this drug to anyone I know and that's a fact.
  6. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

    Two hospital consultants have just informed me that they never prescribe Duloxetine (Cymbalta), as its tolerance is poor and they have seen cases of further nerve damage. My own GP says she wouldn't prescribe it and would rather offer tricyclics to ME patients and not the serotonin-norepinephrine reuptake inhibitor (SNRI) or SSRIs as first choice as they don't seem to help on a more basic level as Tricyclics. Two friends are currently taking both of these more modern drugs and physically they aren't in good shape and have no neuropathic pain relief.

    On a more serious note:
  7. MEG

    MEG Senior Member

    Asheville, NC
    I was prescribed Cymbalta in 2009 for nerve pain, and I believe pain in general. I had a very frightening experience with the medicine. It made me suicidal! I had never before experienced this. I was hospitalized for a four day drug withdrawal, and within 36 hours all symptoms had subsided. Obviously this medicine frightens me and I believe that anyone who is prescribed the drug should be very closely supervised while first taking it. Thank goodness I was able to call my doctor and say, PLEASE get me off of this medicine NOW!
  8. john66

    john66 Senior Member

    I experienced severe weight gain on this medication. I am still trying to lose it, it seems to have increased my set point. No sexual function of any kind was the reason why I stopped. Everyone is different, it did not work for me, and I would never take it again under any circumstances.
  9. vamah

    vamah Senior Member

    Washington , DC area
    I know that drugs affect everyone differently and it can take a while (and that time can be hellish) to find what works for you. I have tried wellbutrin, zoloft, and an snri that I can't remember the name of right now. None did anything for me. Prozac helped for a while, but I found myself taking increasing doses to maintain the same level of functioning. My Dr prescribed cymbalta for pain and I used it in addition to prozac for a while, then decided to (very slowly) taper off the prozac. I can honestly say that I feel less anxious and depressed on cymbalta only than I have in a long time. For me it has been a life saver.
  10. Calathea

    Calathea Senior Member

    Here's my experience. I was only on it for a few weeks, but the side effects were intolerable, they were getting worse, and there were just too many of them. It seems that side effects and withdrawal problems from duloxetine are common enough that it should be approached with great caution. I was on it for pain rather than depression.

    Effect on pain - possibly reduced it, hard to tell as it fluctuates so much, and I certainly had a couple of bad pain days.

    Feeling like a zombie - head all foggy, exhausted, much lower activity levels (i.e. dropped suddenly to being bedbound, previously I was able to get out regularly), dizzy. This was one of the worst things. I've been off it two days and the difference is unbelievable - and that's after taking three tramadol!

    Nausea - this was pretty unpleasant and made it difficult to eat.

    Pain tolerance dropped - this could have been due to the effect where I couldn't handle much physical contact, but when I managed to drag myself out for myofascial release and trigger point therapy (which really helps with pain for me), narrowly avoiding collapsing despite getting a taxi door to door, I couldn't handle much and kept on having to tell the therapist to stop when she'd barely got into a trigger point. It was a weird restless, wriggly, generally uncomfortable feeling.

    Stomach pain - on and off.

    Diarrhoea on the higher dose, constipation on the lower dose (I didn't get past 40mg).

    Frequent urination - hourly or more often. This was one of the dealbreakers, as I was going to the toilet all night.

    Jerking body movements - possibly a Restless Legs Syndrome flare-up, although it was affecting more of my body than my legs, something I've not experienced in years. Not too often, but very unpleasant, especially when trying to sleep.

    Off sex and physical contact, feeling disconnected - this was another dealbreaker, as I'm in a relationship. Sex is important to me, as is having a lot of physical contact with my partner. I couldn't even cope with much kissing or touching, I kept on feeling jittery from gentle forms of contact. This is a horrible thing to go through when you're in a loving relationship, and long-term would have been very damaging to my sense of self and especially to the relationship.

    Breathlessness and chest pain - that affected functioning quite a lot. I normally get a bit of breathlessness in the mornings, but it was greatly increased.

    Teeth chattering - only slight, but another sign that this was not a good med for me.

    Withdrawal: I've only been off it a few days, but so far the only problem is lots of very vivid dreams and nightmares, waking up from them drenched in sweat. Again, this seems to be a known duloxetine withdrawal problem. Thankfully I wasn't on it long enough to get serious withdrawal.

    I was meant to go up to 60mg eventually, at which point presumably all of this would have been even worse.
    Last edited: Dec 13, 2014

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