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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Antidepressant Concerns and Use in CFS Population: Your Experience or Research?

Discussion in 'General Treatment' started by DataDude, May 23, 2015.

  1. DataDude

    DataDude

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    Wondering about peoples' experience with antidepressants and whether anyone knows what proportion of those with CFS have used antidepressants at some point? I have read the persuasive argument that the increase in rates of chronic depression may be related to antidepressant use. Historically, depression was temporary -- it lasted about six months. Since antidepressants have started being used, depression is very often chronic, lasting years or decades, and requiring constant medication for many people.

    When my own CFS problems started they included not only severe fatigue, but anxiety and depression. As fatigue is considered a symptom of depression the first thing my doctor did was put me on Prozac, and when that didn't work I ended up on many different antidepressants. I was on about a half dozen for four years of the first ten years of my CFS.

    Curious how common this is with CFS. Anyone else have a similar response from a physician, or know of research on the prevalence of antidepressant use in the CFS population?

    Thanks all! :)
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I guess initially cfsme can be misdiagnosed by many drs as primary depression .

    problems arise as doses used are started off higher and increased quicker (as in primary depression)than they should be and energizing antidepressants are used because one mentions fatigue.

    Once on the larger doses cfsers can find it hard to come off these meds .

    So they aren't a cure for cfs but can help some with certain symptoms , obviously mood, pain, sleep, cognitive and some it helps with pots/oi.

    It seems hit and miss if one is going to be a positive responder or not. Just wont know unless u have a shot at. Start low and go slow
     
  3. justy

    justy Senior Member

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    I was misdiagnosed with anxiety and depression - I was clearly not depressed but did have horrific anxiety. My GP put me on Citalopram and I had a really really awful reaction - after 1 dose severe agitation to the point I went from feeling anxious but functioning to not being able to function at all. I had extreme confusion which carried on into that night and the next day. I went back to the GP next day - a friend had to take me as I could no longer work out how to drive and had started to feel suicidal. The GP said it was just side effects and to carry on it would go away. So I took another and that night I didn't sleep at all I was so wired and so out of it. I woke my husband up in the night and told him I wanted to kill myself because I felt so agitated and unreal. I begged him to let me stop taking the drug and told him he mustn't ever let me take anything like it again.

    The next day we rang the Dr who said the effect would wear off within 24 hours as the drugs left my system - it didn't - it didn't wear off for over two years. Yes. two years of living in a tormented hell of anxiety and agitation so severe I had to keep moving to make it bearable. At this time I was actually suffering from severe M.E so you can imagine what affect this all had om my overall health. I would never want ot go through such a nightmare again - it was the worse thing that has ever happened to me. The internet is full of people who have had similar experiences with SSRI's, not just PWME.

    I had taken Prozac years before for post natal depression dn was ok on it - so I thought I would be ok again on a different SSRI, but I was far from OK.

    Recently my M.E doctor offered a really reasonable explanation as to why this happened and he said he saw this in some of his patients - it was to do with how much or how little serotonin you have ot begin with - I cant remember the details now, but when he told me I felt like crying because someone understood what had happened to me and knew why.
     
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  4. DataDude

    DataDude

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    Thanks @heapsreal -- sounds like you have some experience with ADs. When did your CFS symptoms start, and when did you first try antidepressants? Did you have any side-effects from the ADs or see any symptom relief? Thanks for any details of your experience :)




     
  5. DataDude

    DataDude

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    Wow @justy -- that sounds terrible, sorry to hear but thanks for sharing. What years was this timing wise -- you had post-natal depression and took Prozac, got better, then when did you stop? And when did the CFS symptoms start, and when did you try Citalopram (I was put on the related Escitalopram at one point and also had a bad reaction).

    My CFS symptoms started at 18, about 1990, and included severe exhaustion and anxiety. At 19 I was diagnosed as depressed, and I was put on Prozac and reacted very poorly -- the first week I was on it I had a terrifying dissociative experience where things seemed unreal, something I had never experienced before in my life. I ended up being switched to Imipramine which was very sedative and stayed on it a couple years, though my symptoms didn't change -- it put me to sleep though, and numbed me a bit during the day.


     
  6. MikeJackmin

    MikeJackmin Senior Member

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    I tried a few antidepressants over the years. I had a significant issue with depression when I was young, but I was able to put it behind me. Given my perspective on what depression felt like, I never did believe I was depressed when I was prescribed these drugs, but I did not object to them either.

    Most had no particular effect and were eventually discontinued. One, however, did me some significant harm. I felt great on Prozac for about six months, before having an awful crash. My impression is that I was one of these people who got a significant speedy boost from the stuff, and I was basically running on stimulants the whole time.

    I consider this a significant hidden danger that we all face. Any drug that may have a stimulant side effect is going to seem to work for a while, and will almost certainly exact a disproportionate cost down the road.
     
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  7. lansbergen

    lansbergen Senior Member

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    Never used any
     
  8. chipmunk1

    chipmunk1 Senior Member

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    Don't work.

    I think they work well for a small number of people suffering from serious clinical depression, the condition they were developed for in the first place. Most of the other prescription are just the current BS fad of the day.

    They are supposed to be benign just like benzos were supposed to be benign but I wouldn't be surprised that it will be eventually discovered that they can cause long-term harm in some cases probably just in time when a new and more profitable class of drugs gets approved.
     
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  9. justy

    justy Senior Member

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    Im sorry I cant answer your questions my history is too long and complicated.
     
  10. Esther12

    Esther12 Senior Member

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    There was really terrible stuff about antidepressants and CFS in the 90s. Openly promoting manipulating patients into taking them. Then there was some trial showing that they did no good for patients who don't have depression and that toned things down a bit.

    I'm surprised that there was not more of a fuss made over this, as it seemed like a pretty clear example of an abuse of medical power. I should try to remember some papers to quote from on this.
     
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  11. A.B.

    A.B. Senior Member

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    There was also a trial with Fluoxetine for CFS which showed no benefit whatsoever over placebo (but more adverse reactions), even for depressive symptoms.

    PS: this one http://www.ncbi.nlm.nih.gov/pubmed/8622391
     
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  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have had good and bad experiences with ads. I aactually asked my dr at the time for a prescription of zoloft after reading how it helps some cfsers with energy.

    My wife was on zoloft at the time, probably post natal stuff. But i took half of her zoloft so 25mg. I read it can take a week or two to start working. I had this constant fog for quite awhile. I vividly remember sitting on the back veranda and only 2 hrs afterctaking zoloft my head totally cleared up. Everything looked brighter and instead of half a brain it felt like my whole brain was working . This helped for several months and worked well.

    eventually it stopped working and some workplace type dr said i had depression not cfs so put me on effexor . At first on lower doses it was ok, i did feel better about feeling like crap but still had alot of symptoms . This dr dsid i needed to get the dosrs up from 75mg to 225mg to get full benefit and it will help me recoover.

    my little brain didnt like these high doses . My brain was doing mickey flips. So i slowly cut back the dose and felt immediately worse. So i increased. No good , my brain was now a mess and during that experience i could understand someone being suicidal, but i knew it was the meds talking not me. Dr at the time was useless so i stopped effexor altogether and started back on zoloft. I had been able to wean off zoloft much easier and knew how to do it. So that was my plan. Waited till i stabilized and then tapered off. Hard to imagine or explain other than it was hell going through that .

    I blame the dr for pushing the doses high and trying to treat me as a depressive patient. I didnt feel depressed just frustrated and buggered.

    low dose tricyclics like doxepin were great for sleep the first few years. But these were low doses.

    I think ads have there place but need to be used in very low doses and titrated up slowly . Also they aren't a miracle drug and they aren't for everyone. Different ads have different effects also.

    I think if mood is low and things are stressful supplements like 5htp are definitely a good alternative to pharma stuff. Also can help with cognitive issues .
     
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  13. cb2

    cb2 Senior Member

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    when i started on effexor almost 2 years ago at 37.5mg it helped alot with energy and depression, then i had to increase to 75mg then to 112.5mg.. then i backed it down as i already take so much stuff. and it also started making me sleepy after i would take it in the morning- so i had to change to taking it at nite- latly i have been feeling worse physcially and that makes the "depression" and isolation worse,so i have been thinking about going back up to 112.5mg but i would really rather not be on anything- however sitting around for hours and days on end feeling like i am ready to die isn't fun either.. it is so confusing all this - trail and error
     
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  14. SOC

    SOC

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    Effexor helped me with muscle aches at one point in my illness journey. Trazodone does wonders for me for achieving stage 3 and 4 sleep. Before trazodone I woke up almost every hour all night. Now I sleep through most nights.

    As for ME/CFS symptoms in general, I'd say ADs are worthless -- for me anyway. They do nothing for energy, or PEM, or immune problems, or pathogens, or flu-like symptoms, or cognitive dysfunction.

    IMO, ADs are not a general treatment for ME/CFS, and there's no reason to think they should be. Some specific symptoms can be treated using ADs as off-label treatments, but the idea that treating depression = treating ME/CFS is total bunk.

    That doesn't mean that most GPs won't try it because they either believe you're not really sick, but depressed, or because they don't know what to do so they hand out ADs like candy and hope you'll go away. :rolleyes:
     
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  15. cb2

    cb2 Senior Member

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    it is sad and true what you are saying SOC .. and now they are giving out Antidepressants and ADHD meditations to so many kids!! like candy as you say- i need to make a post and ask how do have cfs without getting depressed for me i guess that is my challange..
     
  16. SOC

    SOC

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    Antidepressants can be excellent medications for neurochemically-based depression. People who need them, really need them. I'm not opposed to AD use. I just think too many doctors pass out AD prescriptions for everything they don't understand, which in my mind is risky. Messing with the neurochemistry of people without neurochemical disorders seems like a very unwise plan.

    If you are depressed as the result of the social and professional losses due to ME/CFS, then seeing a good counselor would be an excellent plan. That's not (necessarily) a neurochemical problem, it's a normal, reasonable emotional response to having your life stolen from you. Learning how to cope with that emotionally could make a big difference in your life.

    However, any psychiatrist/psychologist/therapist who tells you that psychotherapy can treat the physical symptoms of ME/CFS is feeding you a load of crap. Run away. Quickly. It's worth the PEM. :p There are therapists who specialize in learning to cope with chronic illness. They would be the ones to see.
     
    Last edited: May 23, 2015
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  17. cb2

    cb2 Senior Member

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    good suggestion SOC i had been interviewing and trying a couple therapist since last fall. it gets complicated. the last one when she said " I am appauled at your family" i ran away, and have been trying to find someone that takes my insurance but moving really slowly ..it takes ALOT of energy- ! that last one was judign my family (mom and dad ) 2400miles away with their own health issues (mom passed) and dad does the best he can with his agining and health.. but she was upset because i mentioned i would call them and it would take a few days or weeks before i got a return call. and me having my own health stuff.. i understand that. thanks for the encouragment to keep looking! i do need someone to talk to ! how much trazadone do you take for sleep?
     
  18. SOC

    SOC

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    Most PWME have cognitive problems which make reading large blocks of text difficult. You will get more responses (and it would be kinder to other members) if you add capitalization, punctuation, and more paragraphing to your posts.

    Yes, it can be very difficult to find a good, responsible therapist. There are some real loonies out there, in my experience. However, I have also had some excellent therapists. You just have to find them.

    I suggest you search specifically for therapists who specialize in chronic illness and make it clear that you are not there to talk about your family or to be psychoanalyzed, but to learn how to cope with chronic illness. You might have luck checking with a local hospital for therapists with that specialty.
     
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  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @cb2
    i think you can find alot of help here. Just knowing that there are others in the same boat. It can help to vent on here and also get some coping strategies from others who may have similar problems. And its free and probably better value??
     
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  20. daisybell

    daisybell Senior Member

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    Thanks for this reference! I was prescribed fluoxetine a few months ago by my doctor as I was going through a bad patch with my ME. I haven't taken it as I felt very reluctant to, and I'm glad I never did!
     
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