When you have fibromyalgia and chronic fatigue syndrome, you've got to educate yourself about your condition and every treatment you consider. If we left it all up to the doctors, we'd be in big trouble!
I had a recent reminder of this. I'd been talking to my primary care provider about my sleep problems, including my inability to tolerate sleep aids. He brought up a drug I wasn't familiar with and explained that it's a sleep inducer -- it puts you to sleep, then wears off in just a few hours, instead of the 8 or more hours that are typical of sleep meds. I told him I was concerned about side effects like the next-day hangover, headaches, or sleep walking. He said side effects really weren't a problem because if I did have any, they'd be gone in 3 or 4 hours when the drug wore off.
I accepted a prescription, but I fully intended to do some research of my own before filling it. I can tell you, this may be a great drug for some people, but after a little reading I tore up the prescription and threw it away!
What I found was that the drug he suggested actually has an extremely high risk of side effects -- including all the ones I was concerned about and some that are even worse -- and they can even continue after you stop taking the drug. Given my own bad experience with sleep meds and the experience of close relatives, there's no way I'm taking a chance.
And it's not just with drugs. We have to do our own research even on basic information. More than once, I've had a reader here tell me she was relieved to find information on brain fog because her doctor had said it wasn't part of fibromyalgia or chronic fatigue syndrome! Seriously, how does a doctor not know we have cognitive dysfunction? I've also heard tale of some doctors diagnosing "fibromyalgia with fatigue" because they don't think fatigue is normal in us. Wow.
I've written before on double checking test results, which I highly recommend for everyone.
Have you caught your doctor sharing misinformation about your illness or a treatment? Did you learn this lesson the hard way? Leave your comments below!
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Dear Adrieene
No sleep medication has ever worked for me, none!.
I never trust doctors, and I always do my own resurch,my body
My decision. I hope you will get better very soon.
All sleep aids have had a lasting side effects for me. The only one that I tolerate ok to is Melatonin.
The worst misinformation I got was just no info. My first doc seemed to be treating me for Fibro but never called it that.. Second doc wanted to take everything so slowly despite my serious symptoms. Finally found a doc that diagnosed me, continues to follow blood work, etc.
When ever I need some confirmation or affirmation, it always comes on time. Did I ever need to read this as I doubted myself this past week. I have FMS, with just about everything else overlapping. I just switched from Synthroid to Armour about a month ago. I have the worst taste and the worst smell in my vagina. They both smell like the Armour. I had my doctors prescribe a cream for Bacterial Vaginosis, which I did not believe I had. Did my homework discussing this with the pharmicist. I hate being given misinformation just on your symptoms without a medical exam to confirm it. I tried to research earlier on the internet but all I got was how bad the meds smelled and nothing about B.O. I am so happy that I trust my instincts. I had a friend suggest I was paranoid. Paranoid enough to avoid unnecessary meds. You have to be your own M.D. Medical Detective!!
Yes, to your questions. I question every thing because I have learned the hard way. Meaning for over a decade I was misdiagnosed, was pressured to use damaging drug & other therapy and was generally mistreated in many ways and I don’t just mean medically. So kudos to you for taking care of yourself. We need to be our own advocates which is unfortunate because we, generally speaking, don’t have sufficient energy and the energy we do have should be focused on proper care of ourselves and the people in our lives. I’m a big believer in ensuring our information and privacy and being very informed about our files. I have had to deal with not only much misinformation affecting my treatment but also affecting my disability benefits. Inaccuracies, misdiagnoses, mistreatment have at times created misunderstandings between benefit agencies and myself affecting income, treatment plan and payment and relations with staff. The irony of it is I have struggled with my health well over a decade and one of the doctors at the pain clinic believes I have probably had this illness the majority of my life. I believe the more we speak up in an effective manner the more serious the health care professions will listen to the patients points of view.
Drug reps visit doctors on a regular basis to shill their goods. Most Doctors are very busy and prescribe medication based mostly on a conversation with the drug rep. Most drug reps are honest hard working people who know their stuff. Unfortunately some aren’t either.
The alternative is to have doctor’s thoroughly research every medication for every condition. They would not be getting paid for such research and would have to up cost and down the number of appointments they could provide, hence the reliance on the drug reps.
Adrienne is right. You have to educate yourself and this is no one time thing. Things are changing in the field.
Also most pharmacies put prescribing information in with a new prescription. Never take new medication without reading about it first.
I have found that many times pharmacists know more about meds than doctors do. Pharmacists can be a good source of info. if they are willing to help.
I recently watched a talk on TED.org about a man known as “e-patient Dave” Really interesting story on how he survived stage 4 kidney cancer by taking control of his treatment and meeting others like him.
This led me to PatientsLikeMe.com – there is a TON of info there for us, I just began so I’m really excited to feel some hope and a direction I can peruse instead of my MD’s same ‘ol advise: sleep, reduce stress, exercise….
Ditto re. the PatientsLikeMe.com site. One of the best things about the site: You can connect with…patients like you! (In addition to FM, I have spondylolisthesis. While I won’t say it’s a rare condition, I knew of nobody who suffered with this–and could find nobody to talk with about this debilitating condition–until I joined the site.) I feel so much less ‘alone’ now.
The best thing I have ever done for my fibromyalgia is to research for myself some ways to treat my body according to it’s needs without pharmaceuticals. I now use natural medicine for 99% of my symptoms. On the subject of sleep meds I found that Sound Sleep by Gaia Herbs is amazing! I sleep more profoundly and have no I’ll effects the next morning. I can take it for a short period of time or just when I need a good night’s sleep. To fall asleep more quickly I have found guided meditation and music therapy to be very useful. Dr. Jeffery Thompson and Beth Freschi are my favorites.
I ALWAYS check all new meds on a web site called RX-List.com. It’s a fantastic site everyone should have Bookmarked! Pages and pages of info on every med out there!
Several meds were taken off the market like celebrexand serequel, then they wait awhile and just bring them back. Serequel was killing people that were diabetics because it raised peoples blood sugar among other problems like weight gain, but hey it’s supose to be good for sleep. I could not believe they were brining them back. ofcourse cymbalta can cause liver damage and death. It works great for depression, but the people doing the commercials make it sound like liver failure or death is nothing. vioxx takers weren’t warned that they could have increased stroke or heart damage and it affected thousands before they recalled it. I stick with older meds that have proved the test of time, they r cheaper too.
I am hoping for a new sleeping pill that works for sleeping and will not make u hungry an hour after taking. with the lack of energy I sure don’t need any meds that make u gain weight as I can no longer work off the calories. I understand itt is the same location, gland,( thalamus?) soit is in charge of eating and sleeping, so it’s probably hard to do, but tylenol p.m. doesn’t make me want to eat. So it must be doable. However, Tylenol is accumulative in the liver and if u take too much it can harm your liver. But I never sleep anymore and it is just frustrating, I don’t drink or eat any kind of caffeine, even gave up chocolate at least 6 months ago. I’ve done the sleep hygene, blackened every smige of light from the room ect….I don’t want to get liver failure trying just to get to sleep night after night.
I hope they come up with something soon.
Just FINALLY got a fibro diagnosis by 3rd rheumatologist. I am also trying to have a baby so not much I can take (nothing works anyway) but new doc suggested Melatonin. I asked if it was safe to take if pregnant and he said most likely. Wow, totally wrong.
From the Mayo Clinic:
Hormonal effects have been reported, including decreases or increases in levels of luteinizing hormone, progesterone, estradiol… Melatonin supplementation should be avoided in women who are pregnant or attempting to become pregnant, based on possible hormonal effects. High levels of melatonin during pregnancy may increase the risk of developmental disorders.
Having fibro in the UK is a nghtmare. I have only rarely come across a doctor who has any idea at all about it,most have no idea at all or worse believe its simply down to lazy inactivity and is a form of depression.By doing too much I flared my fibro and was given steroids which didn,t work plus Anti depressants put up my heart rate , then calcium blockers to slow that caused pre-syncope (collapse without unconciousness ) then in hospital following collapse it was insisted that because I had Fibro and an anti depressent for pain that the whole thing was depression/anxiety and I needed the crisis team. I disagreed and was thrown out of the hospital as a nuisance patient. I came off the calcium blockers and stopped collapsing…….it was not rocket science but having a fibro diagnosis on my records threw them off completely and they were convinced it was depression despite me having no symptoms of depression at the time. It has made me very wary of telling anyone I even have fibro. The consultant wrote to my GP stating I stay in bed a lot of the time amxiously taking my blood pressure despite the cause of the problems was me doing too much NOT too little. It is a complete nightmare trying to get anyone to get their medical heads round fibro. in the UK. I see a new rheumatoligist on Tuesday but I am not holding out much hope. I treat myself with basic meds (paracetemol and tramadol ), warmer water exercise and a bit of gardening.I do a good job of keeping going and being positive and it is downright disheartening to be signed off by a Proffessor who knows nothing of fibro and insists you are a lazy anxious individual. The sad thing is my relatives believed him!! When I do well it apparently proves I am fine with nothing wrong with me and when I struggle I am a fusspot…..thats the attitude a lot of the time over here. If I sound cross about it…I am.
I check my meds on-line, too, and read the info. from the pharmacy. My pharmacist, who is normally well informed didn’t know anything about Savella, and apparently I was the only patient they had taking it. I feel fortunate that meds do seem to be working for me, and even my sleep aid – Ambien – is working with no side effects. (I use only 2.5 mg, though, which is enough, but sometimes means I’m biting pills into halves or quarters.)
I do worry about my liver and kidneys, but my PCP does the follow-up testing, and so far so good. She also was willing to try me on both Lyrica and Savella, which work well in combination for me, but not separately. The only thing I don’t like is the weight gain that seems to have decided to stay from the Lyrica, and, well, the co-pays.
I’m also getting much better at just advocating for myself, and not really getting too worked up if people don’t understand my condition. I won’t tolerate it from a doctor, though: I educate, and / or move on when necessary.
I did recently prove a medical point: I was diagnosed via MRI (I talked my PT into suggesting it to my doctor) with AC joint arthritis and rotator cuff tendinosis, after years of being told the shoulder pain was just part of FMS. My PCP said that both ARE painful conditions, and that the FMS was amplifying the pain. Now she’s looking more closely at my neck pain, and all those osteophytes at every level. I don’t know what difference it will make in treatment, but I feel more confident that it won’t be shrugged away as FMS!