arrow14 Comments
  1. tatt
    Feb 27 - 3:21 pm

    they should give the patients reporting constipation magnesium – probably be more useful than the drug anyway.

    • Cort Johnson
      Feb 27 - 3:41 pm

      :)

  2. Hip
    Feb 27 - 4:23 pm

    I have depression and anhedonia as some of the comorbid symptoms of my ME/CFS. I tried various antidepressant drugs and supplements, and interestingly, the drug that gave me the most natural-feeling mood boost was the atypical antipsychotic drug amisulpride.

    I tried SSRI antidepressants (I got severe sides effects), and the TCA drug imipramine (which boosted my mood but felt unnatural). But I found very low dose amisulpride worked well for me as an antidepressant. Some studies on amisulpride as an antidepressant are here:
    http://www.ncbi.nlm.nih.gov/pubmed/9165379
    http://www.ncbi.nlm.nih.gov/pubmed/9495601

    I also found that very low dose amisulpride reduced my anhedonia, anxiety, fatigue, noise sensitivity, ADHD and irritability symptoms, and improved my sociability ( I had more desire to socialize). The only side effect I noticed was some loss of libido.

    I have taken very low dose amisulpride (12.5 mg daily) for 2 years now, and this has become one of the medications that I feel works well for me.

    A small scale study did find that amisulpride benefits ME/CFS. See:
    http://www.ncbi.nlm.nih.gov/pubmed/21112746

    So antipsychotics would seem to have their uses in fibromyalgia and ME/CFS.

    Note that only very low doses of amisulpride are used to treat ME/CFS and depression.

    More info on my experiences with amisulpride can be found here:
    http://forums.phoenixrising.me/index.php?threads/amisulpride-—-a-multipurpose-drug-for-me-cfs.20964/

  3. Dominie
    Feb 27 - 5:17 pm

    I’ve had FMS since 1982 and CFIDS since 1987. Of all the debilitating symptoms associated with these illnesses (pain, fatigue, fibro fog, insomnia, depression), the sleep disorder has probably been the worst for me. My doc says it is at the ROOT of my FMS/CFIDS problem.

    About 5 years ago, my doc suggested adding 25 mg Seroquel (Quetiapine), a tiny tablet – smallest amount available – to my established sleep med routine. Surprisingly, it helped me greatly. However, I would be afraid to take any more than that, because it is very powerful. The other meds I take for sleep are: 10 mg Ambien (Zolpidem), 100 mg Neurontin (Gabapentin) and 1 mg Ativan (Lorazepam). This combo has worked 90% reliably for me for years. I take some at bedtime and some in the middle of the night to go back to sleep.

    We are human “guinea pigs,” but experimenting is the only way to find out what works for us individually. I wish there were one simple “magic bullet” that helped everyone equally – like insulin for diabetics. FMS/CFIDS/ME is “Millionaire’s Disease” – we lose the ability to earn a living, while racking up medical bills, and searching endlessly for meds, supplements and treatments to help us function like normal people do automatically! (They should be so grateful!)

    I am very thankful for the internet, because when I was diagnosed in 1982, the brief reference to “fibrositis” in the Merck Manual at the library just said to give the patient antidepressants. As a newbie, it was an lonely and bewildering time filled with extreme suffering and losses on all levels of life and no emotional support – just misunderstanding, stigma, and even ridicule!

    I share many tips for coping with FMS/CFIDS/insomnia at http://www.fms-help.com. Cort, your site is AWESOME!!!!! I send a lot of people to you! Bless you for keeping us up to speed on the various and changing modalities.

    • Cort Johnson
      Feb 27 - 6:03 pm

      We are human guinea pigs aren’t we. Your doctor was quite innovative to try low-dose Seroquel for sleep five years. Thanks for the tips, for your nice words and for sending people over to the site. I don’t know how I missed your information packed site for so long!

    • Carole
      Mar 01 - 5:18 pm

      I cannot believe anyone takes this much medication to go to sleep at night. You are destroying your body. Aren’t you a Zombie during the day? These have to be habit forming.

      I am just blown away that any Physician would prescribe this much medication at one time to sleep.
      Don’t know how old you are-but if I took even one of these-every night. I would
      be gone-FOR GOOD.

      Please question your Dr. on the safety of this or get another opinion.

      Carole

      • Susan S.
        Mar 02 - 6:41 pm

        Carole,
        For some of us with CFS/FM sleep is non-existent. Yes, we’re zombies, but that is because we are unable to sleep. This kind of tinkering is unfortunately necessary or we will go days (weeks) without a restful night and I don’t have to tell you how that impacts other parts of the body’s functions. It does seem ridiculous, but that just shows how out of kilter our body has gotten. I went from a 10pm to 7am sleeper, waking without an alarm for my entire adult life, to an insomniac, walking my house when I finally couldn’t stand lying in bed anymore. After a week or two of that, you’ll try anything to get some sleep. Until you’ve experienced it, it’s had to believe that the body can go so haywire. It’s the equivalent of turning on every electrical appliance in the house full blast and then wondering why the meter won’t slow down to a normal level. We’re desperate to find the appliances and as we do, we turn them off one at a time as we can. Gradually, as we find that we are getting some sleep at all, and then better sleep as we continue to tinker, we get positive feedback that allows us to function to some extent again. I HATE taking the combinations of drugs I have to take, but I hate not sleeping much more.

      • Dominie
        Mar 16 - 1:11 pm

        I feel fine. Thanks for the concern, though. My “sleep clock” has been broken for many decades. My doc and I had to tinker with what would help me sleep for several years to find what worked. I feel great nearly every day – no hangover or side effects. It sure beats the 20 years I lived as a sleep-deprived zombie! This agony was a “living death” that affected many systems of my body. (Sleep deprivation is used in POW camps as torture!) I can sleep and function now almost like a normal person. (BTW, there’s a condition called Fatal Familial Insomnia where people die from not being able to sleep!) I am extremely thankful for meds and for docs who care enough to help patients like me with difficult conditions.

  4. Jacque
    Feb 27 - 5:53 pm

    Interesting, but from my experience with Subutex I will stick with that. The Subutex has also seemed to help with my “depression”. Not sure why….maybe because I am finnnally sleeping I would guess… I was unable to work or do much of anything… and ONE Subutex pill has gotten me out of the bed 80% of the time, and I am able to work PT… I sure wish the US Docs would catch on to this drug as they have in Europe for chronic widespread neuropathic pain (which is what Fibromyalgia is)!

    • Cort Johnson
      Feb 27 - 5:58 pm

      I would stick with Subutex, too. That’s another unexpected result from a drug. Drugs.com says Subutex is NOT to be used for chronic pain (lol).

  5. Laura B
    Feb 28 - 3:12 pm

    I have a previously healthy friend who started taking Seroquel for depression about twenty years ago. Shortly after starting it, she began feeling achy all over and had to discontinue the Seroquel. But her pain never went away and she ended up diagnosed with fibromyalgia.
    Very weird, but I guess you can have a drug reaction like this that becomes permanent.

    I have tried several antidepressants and am sensitive to meds. Am able to take Cymbalta and Lamictal, both of which help but I can’t go high enough on the dose to get as much benefit as I need. Anyway, a friend just sent me a Verilux light box that she isn’t using. I’m hoping for good results and it will be nice to try something that isn’t a medication.

  6. Rene Causey "fibro suffer"
    Feb 28 - 7:38 pm

    My son has taken seroquel for his bi-polar for years and struggles with the extreme fatigue side effects, but is unable to tolerate any of the other meds, so he has to deal with it. Which is why I find it very interesting, and somewhat confusing that it would work for ppl like ourselves that suffer from not only horrific daily pain, but severe chronic fatigue. I would be very sceptical to try this medication without first having read some pretty convincing evidence from those that have tried it and found it to be helpful. I am one of the guinea pigs as well, and usually I am game to try anything with the hope of any relief. Once again Cort, I thank you for what you do, you are a wealth of information to those that do in fact get left feeling very alone in these illnesses that it seems the only ppl that understand what we live through is our fellow suffers. I do still find hope that since my diagnosis there is so much more research being done, but I am afraid we are still a long time away from a cure, let alone just enough relief to enjoy a piece of our former lives.

  7. Rowanmaya
    Mar 24 - 10:10 am

    I’ve been taking Quetiapine for type 2 bipolar disorder but I also have Fibromyalgia & CFS. It has only helped the insomnia a tiny bit and I’m on 175mg at the moment. It has reduced the pain somewhat but not the burning pain. The downside is that I’ve put on weight, my vision keeps blurring and if I don’t get out of bed by about 7.30am (having taken the tablets at about 6pm & 8pm) I get a kind of hangover & have great difficulty getting out of bed. I’ve tried gabapentin, pregablin (lyrica), amitriptyline, Tramadol (still on that), lorazepam (developed a tolerance), zolpidem (good but only prescribed short-term), zopiclone (as zolpidem), carbamazepine, duloxitine (sorry about the spelling) & a few other things. I want to come off the Quetiapine now because of all the side-effects but it has helped my mood & anxiety attacks :-/

  8. Depression
    Apr 24 - 9:44 pm

    Being able to handle one without exacerbating the other is a fine line. Most pain meds do tend to cause depression and depression can cause us to feel more physical pain. Treating them both safely and effectively would be an incredible feat if it can be done without any side effects.

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