Have you had such a bad experience with fibromyalgia treatments that you just assume things won't work, or that you'll have nasty side effects? Apparently, that's common enough in us that it could be skewing drug trials.
You've probably heard of the placebo effect, which happens when people put enough faith in a treatment that it works better than it should. In fibromyalgia, a new study has revealed what researchers call the "nocebo" effect, which means that we are so skeptical that the treatment is less effective than it aught to be. In fact, they found that about 10% of fibromyalgia patients on placebo dropped out of trials due to side effects.
I can definitely relate to that kind of skepticism. I've taken one FDA-approved fibromyalgia drug and several things to help me sleep, and all of them have caused horrible side effects. I'm so doubtful of these drugs now that I refuse to take any of them.
Compared to the long-timers with this illness, I've tried relatively few drugs. I can only imagine how strong the doubt is in someone who's tried dozens of different treatments over the decades without finding anything that works and is tolerable.
If you know you've got this kind of attitude toward treatments, it might be a good idea to get some counseling for it, or see if you can overcome it the next time you're faced with a new treatment option. It's a hard line to walk - we don't want to put too much hope into a treatment only to have it fail, but we can't afford to have this type of disbelief get in the way of successful treatments. Definitely don't sign up for drug trials if you know this about yourself, as the effect could really hamper research.
Are you skeptical of drug treatments for fibromyalgia? What has your experience been with medications? Which belief is stronger - that it won't work or that you'll have side effects? Leave your comments below!
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You know what sucks? When you get your prescriptions filled for the two drugs that actually do work for you (Oxycontin for pain and Xanax for sleep) and the pharmacist looks down his nose at you. I’ve tried everything else…everything. Yet it comes down to two of the most controversial drugs that help me.
But I’m so tired of being treated badly and made to feel like I’m a bad person for taking these drugs. So I am weaning myself off of them. It’s ugly and I hate hurting and not sleeping. But which is the lessor of two evils? And besides, maybe in the end I’ll be healthier for it. At least that’s what I keep telling myself. I guess that’s my placebo effect
All I can say to you is. Who cares what you pharmacist thinks. Go to a different pharmacist if it bothers you. If it helps you live some kind of life, to heck with them.
I’ve had horrible and atypical side effects to pretty much everything – Gabapentin, Lyrica, Cymbalta, Savella, Trileptal, etc. I’m allergic to opiates & NSAIDs give me ulcers. I’ve just finished a series of Vitamin-D megadoses because I was deficient (like many Fibro people), despite taking daily supplements. The side effects of that were totally unexpected and awful — I had to stop taking calcium because I was getting toxicity symptoms.
Right now I’m having good luck with SAM-e; it’s killed the depression and has lowered my baseline pain level by a couple of points. I’ve also recovered lost feeling in an arm (due to a long ago accident) since beginning SAM-e, which has been a big surprise. Neurogenesis is cool. But the thing is that I go in willing to try pretty much anything because I can take some kinds of meds with zero side effects, while others are awful. I never know. So, I try something, I log what it does, and then I report to the doc. The key, I think, is keeping my hopes high but expectations low, because disappointment is *exhausting* but actual successful treatment is awesome.
I wonder if they really dropped out due to “side effects” or if it’s possible that they went through a flare-up of symptoms that they misinterpeted as side-effects. Our illnesses fluctuate with the weather – they fluctuate day by day and hour by hour.
I also wonder if anyone in the trial DISCONTINUED any medications or switched to a different medication in order to qualify for the trial.
Honestly, though, the flare-ups alone could do it. Or, ironically enough, if someone BELIEVED that they were on a new medication and had a ‘good day’ – maybe they increased their activity level. Or even the extra work of having to travel to the research center may have caused a flare up.
I do not think we’re an easy group to study. Our illness is complex for sure!
I’ve tried just about all of the big pharma drugs that were supposed to be the great hope of FM sufferers. None of them worked. Most had terrible side affects. Anything SSRI related messes with my heart. I tried Oxycontin and couldn’t handle the side affects that grew to be intolerable even if it helped the pain some. I had the doc who prescribed the oxycontin suddenly refuse to treat me because he decided to stop seeing patients with my insurance coverage. He left me to withdraw from that drug on my own. I’m not sure what was worse, withdrawing from SSRI or Oxycontin.
So, to say I don’t trust either the docs or the drug companies they sleep with would probably be an understatement. It is safe to say I won’t skew any studies because I won’t join one.
I have done better since walking away from much of that. I just try to take each day as it comes and if I feel bad, I rest. I’ve lost 73 lbs and that has helped my joints.
I’ve accepted that this is my life for the rest of my life.
perhaps u didn’t try the med long enough before judging weather it worked or not, I am guilty of that. u always want the one magic bullet that will make us normal again. unfortunately it takes a few different drugs for the different problems. personally I don’t want to take oxycontin, heard to any stories of people getting hooked and having to go to rehab to get there life back. Have u tried tramadol2 3 x a day, with cymbalta, I find it was the answer to my FM pain and mood lifting, but still can’t sleep. pill after pill after pill, 11 pills trying to go to sleep.
Ridiculous! I don’t have any caffinatedanything, gave up chocolate!!!!! so stopping ambien cr as it just makes me eat an hour after I brushed my teeth. going to increase my zanax that I take for panic attacks and hope it will get meto sleep with gabapentin,muscle relaxer and benedryl.
cymbalta is a srn well not a ssri which I agree the ssrididn’t help
mebut thecymbalta makes it so i have to take less pain meds.
other than the “someliver problems proved fatal” it’s really good.
and I’d rather bemore painfree nowand live,then worryabout something that may not happen withthe liver. wish they had this drug years ago. it really has helped.
Just to make doubly sure that neither occurs in my case, I don’t read the side effects unless or until I start having trouble with medication. I’ve ended up with side effects ‘to the T’ as described on the information sheet. There are some of us that have rather serious side effects to a fair few drug types. …and it’s no joke or psychological issue either. Far from it. I think it’s a matter of really getting to know your body and ruling all possibilities out rather than just a possible issue with medication. After all these years dealing with this illness, I basically have this list I go through when trying to decide why I’m getting certain symptoms. e.g. could it be my menstrual cycle, flu, infection, medication, allergies, etc. When you get to know your body and take note of how it responds to certain problems then it becomes easier to decipher what could be the real issue.