High Use of Drugs Believed Ineffective for Fibromyalgia
What do you take for fibromyalgia? Does it work? Is it supported by scientific evidence (and does it matter, either way?)
A new survey shows that a lot of us take nonsteroidal anti-inflammatory drugs (NSAIDS), like Advil, Motrin (both ibuprofen) or Aleve (naproxen), and narcotics, such as Vicodin (hydrocodone) and OxyContin (oxycodone). The researchers concluded that substantial numbers of people with fibromyalgia are taking pain medications not supported by evidence of effectiveness.
So why are we taking these potentially dangerous drugs? I can think of several reasons:
- In spite of study results, a lot of people say narcotics do help with their fibromyalgia pain -- including people questioned in this survey, who gave opiates one of the highest effectiveness scores.
- A lot of us have comorbid conditions that respond well to NSAIDS and opiates, and the survey didn't appear to take that into consideration. We'd also be ineligible for studies, which could skew results.
- The lack of proper subgrouping has likely given us confusing and inaccurate study results.
I myself take both NSAIDs (daily) and narcotics (when pain is really bad.) I've tried going without them, and it has not gone well! I need the NSAIDs for myofascial pain syndrome, and without them I puff up like crazy and hurt everywhere. My personal theory on narcotics is that they probably work better for those of us with other sources of chronic pain. Because that type of pain does respond to narcotics, treating it means there's less overall pain for fibromyalgia to amplify.
The bottom line is that we have to weigh scientific evidence against real-world experience and decide for ourselves what works. Scientifically supported treatments may be a good place to start, but there's certainly not the only things to try.
What works for you? Why do you think studies show one thing while experience show another? Leave your comment below!
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Comments
muscles relaxants work for me, but I discover that marijuana, in small amount, do wonders, helps me relax without the side effects of muscles relaxants which leave me looking swollen and a feeling weird even after 12 hrs. this works for me but to over do it , is not recommended.
That’s interesting but it makes me scratch my head. Doesn’t compute with my experience at ALL. I take tramadol plus acetaminophen daily in two doses – I tried managing fibro without drugs (except for OTC pain relievers, including Advil and Tylenol) for four years, but never achieved relief until I added the tramadol.
I wonder how much is due to the phrasing of the studies – because there is at least one study on the use of acetaminophen/tramadol on fibro pain, showing it to be effective. That’s what led me to ask my doctor about it. We tried it and I was immediately impressed w/ the results.
I agree with Fabienne. The most effective treatment for my severe chronic pain (fibromyalgia, an autoimmune disease & sciatica) is, hands down, marijuana. It gives me no unpleasant side effects (unlike prescriptions) & the research for marijuana as a fibromyalgia treatment is very well supported. I believe it should be the first line of defense against fibromyalgia pain, due to its high effectiveness, very few side effects & it being all natural.
Without marijuana, I know I would not have been able to endure the pain the last few years. I would have given up. Marijuana has saved my life. I only pray that chronic pain patients like myself and others can all one day have safe & legal access to quality medical marijuana.
I am so tired of hearing about how opioids don’t work in fibromyalgia patients. I’ve suffered from fibro for almost 14 years now, and having tried everything that comes out supposedly effective for the pain, it’s only the oxycodone that really has a major effect. None of the newer products have worked for me. Not Lyrica, not the anti-seizure drugs, not Neurontin, none of them. I wish the people doing these studies would remember that we are the ones living in our bodies, and if we say the opioids work for us why isn’t that enough to go on??
I am having a hard time finding a new doctor.
It should be embarrassing for medicine as an institution that I call a doctor’s office only to be told “We don’t see fibromyalgia patients” and be referred elsewhere.
It’s not “acceptable” to see fibromyalgia patients. I think that doctor’s think we’re whiny, we can’t be “fixed”(so why try to help) and we don’t go away when you tell us to exercise and take tylenol.
And as for the medications, it’s not “OK” for us to need anything more than the “nice drugs.” Even if research says that other drugs are more effective.
That’s because the truth of the matter is, the medical institution does NOT want to listen to the researchers. They don’t want to admit that this illness exists and they think we should be happy with the “bare minimum” treatment, because we’re lucky they’ll even see us.
The doctor I see now has told me at three consecutive appointments that I am “lucky” to have him because doctors don’t want to treat fibromyalgia. I’m tired of hearing it and I’m going to see if I can’t get help elsewhere because I am not confident that if my pain level spikes, he’ll be willing to help me continue working!
I wonder how many of us are unable to work because our pain is not being adequately managed. How many of us are being put on anti-depressants… being told that they believe we have fibro while the reality is, when the office door closes, the doctors say “Oh, she’s ‘just depressed.’
We’re in pain, we’re tired, and doctors don’t help. Where’s the surprise in how many of us are depressed?
I have fibromyalgia, but also have an MRI-certified bad back. The back pain is the worst on a regular basis and oxycodone is very effective in controling it. OTOH, on a damp, rainy day, nothing does much for the FMS aches.
I’m sorry to hear gabapentin (neurotin)doesn’t work for some. This is a drug used for neuropathic pain and can be quite effective when used with muscle relaxants. As Adrienne pointed out, the failure to subgroup patients appropriately results in study results that are confounded because researchers don’t know why one thing works for some and not others – patients with organic diseases may be tired and depressed, but it doesn’t follow that tired and depressed people automatically have a disease. Whether anti-depressants or anti-anxiety meds give pain relief is debatable once again because researchers mix and match study groups.
But to refuse pain relief to someone because you yourself are not experiencing their pain borders on the unethical.
Perhaps Dr. Marcia Angell, who teaches medical sociology at Harvard Medical School and is the former editor of NEJM has the right of it:
“Few things a doctor does are more important than relieving pain… pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained”.
Something to think about:
If the pharmaceutical company makes a profit – which is the goal of all capitalistic businesses including research labs, researchers and doctor’s offices – should people be morally forced to endure intense pain because a measure of relief comes from a for profit enterprise?
No two, things work exactly the same for each person. I’ve tried the drugs that are on the market for Fibromyalgia~ They just didn’t help me, If anything they’ve hurt me!
My Dr. keeps pushing drugs that DON’T work for me…..She also prescribes me Oxycodone & Methadone which help quite a bit, but She keeps making me WASTE my $$ on various antidepressants that HURT me ! I wish that the Dr’s would LISTEN to us a little better. We know our bodies best & what seems to help us. If the FDA bans opioids it will be a travesty to ALL of the Chronic Pain sufferers!
I am taking lyerica, tramadol, 2 twice a day fish oil and st.johns wort in replace of a anti depressant and 2 paroven for my legs,
zumenon,allopurinol, simvastatin, + zolpidem tartrate oh and loratadine
I do wish I could stop some of them but then i think I have thake them all for different ailments so what do you do
But I dont know if its the good weather or the st.johns wort but I do feel a lot better and maybe not
good luck everyone hope someone gets back to me
regards
I’ve had a great amount of relief from daily pain with Amitriptyline. I was on 10mg for over a year, and we just switched up to 25mg (the next available dose). It is very inexpensive, and I haven’t had any side effects. If I miss a dose, I definitely notice!
There are some days, usually after I have “overdone” it the day before, where I do have a great deal of pain. I usually take a hydrocodone on those days (if I have to function, otherwise I just stay in bed).
I have had two opposite approaches depending on the doctor. Some try to tell me fibromyalgia does not exist and send me to a psych for depression- who tells me I’m not. Some see fibromyalgia and refuse to look for other causes of pain. I have bursitis, degenerative arthritis/deg.disc disease, bulging discs, IBS, migraines, myofascial pain syndrome, irritable bladder, edema, sleep discorder, high blood pressure. I have to work. It is tied to my self-esteem as well as financially necessary. I could not function without my vicodin and methocarbamol. also ibuprofen or aleve, trazadone for sleep, and gabapentin. Still can not find relief for joint pain (rain, cold, weather pressure kills me) and edema/swelling is intense. I get tired of being treated like a hypochondriac, even with x-rays and MRIs I get talked down to or told there is nothing they can do for me. Doctors dont listen and researchers are tunnel-visioned. Fibromyalgia is not a disorder that is by itself. It is almost always accompanied by other ailments. If I got my narcotics taken away (I wish I could get stronger ones for bad flares) I would be completely, totally disabled. Then the government would REALLY be paying for a lot to support me and three kids. They have no idea what we are dealing with.
The reason FMS is not being treated adequately is because it is caused by pathogens that lie within the cellular wall that aren’t easily cultured in bloodwork. (Check out research done by Dr. Garth Nicolson). The physicians aren’t familiar with it and the ones who are know that there is more $$$ to be had by precribing medications that don’t work and our continued office visits. It’s profitable for use to continue feeling like a mac truck ran over us. Both Drs. and big pharmaceuticals are making huge profits on all of the drugs they are pushing on unsuspecting people suffering from FMS. Treat the bacteria/viral components and you will feel better.
I’ve suffered from fibromyalgia for 18 years. After years of subpar treatment I finally found a wonderful physician who specializes in treating FM.
For a few years I did very well on a combination of Wellbutrin and Ultracet. Then my pharmacy switched me to generic versions of both drugs. I might as well have stopped taking any medication at all — the generics had absolutely no effect on me. I gave up the Ultracet all together and started paying full price for the Wellbutrin, all the while having to face down snarky pharmacists who insisted that the generics were just as good and that the uptick in my symptoms was all in my head!!
A few months ago my doctor switched me to Cymbalta, which is working very well for pain control but doesn’t help much with fatigue. We’re still tweaking the dosages, though. She gave me samples for Lyrica but she’s not a big fan — most of her patients report that the negative side effects outweigh any relief they get from the drug.
Has anyone been tested for Vitamin D deficiency? My PC had read about a study concerning this in relationship to Fibromyalgia and he had me tested. Lo and behold my level of Vidtamin D was so low it was practically non-existent. I’m now on 2,000 mg a day and while I can honestly say it hasn’t made all my symptoms go away, they have improved somewhat.
Yes, there is a lot of controversy about Vitamin D. Dr. Trevor Marshall claims it’s bad for you (but he refuses to have a peer study done regarding his research). Again, many will show a low D level, but it’s not causing the FMS. It is likely a result of FMS. Google for information regarding mycoplasma and fibromyalgia. Research shows that in over 50% of patients (even those being treated at FMS/CFS Centers) have bacterial/viral infections. This is where the problem is and until they are effectively treated, all the other drugs are only masking symptoms.
I take Talwin and Oxycontin every day. I couldn’t manage my pain without it. These people that do these studies and say narcotics don’t work for FM pain obviously don’t have FM.
Kim and Fibromite: Yes, low Vit D has been implicated in lots of things and it is definitely I would say 80% out there within mainstream thinking. I have written a mini-article I would like to get published about Vitamind D Defiency and what it really means. From personal experience, if you test in the low normal range, I doubt that 2,000 a day would bring you up. D3 rather than D1 or D2 is the recommendation now and what you will find in most bottles of Vitamin D at health stores. However, when my Vit D was tested, I tested in the abnormal range. I took a prescription 50,0000 IU (of Vitamin D2, ironically) soft gel once a week for three months. When tested again after taking that 50,0000 IU AND 4,000mg, I am now at the low range. I am on my 3rd round of taking 50,000 IU for 3 months (within 2 years). Supposedly, it is the climate I live in. Though, when I tested initialy, I had been at the pool nearly every single day for two months prior. Go figure.
For what it is worth, the daily dose my fibro doc recommends to me is 4,000 mg of D3 a day.
Something just doesn’t add up. Me getting sunshine has nothing to do (or very little ) to do with my vitamin D production.
Christina: I hear you, hon!
I was wondering if everyone would answer a question for me? Do you ever just feel sometimes like you need to take a deep breath? I do, and I think there is something to it.
I actually have CFS/CFIDS, but have some of the fibro pain. Right now, my legs are killing me! Compared to other more strenuous weekends lately, this weekend wiped me out. I can already tell I am going to have a bad week.
For pain: The newest for me was getting tramadol/ultracet. It takes the edge off and sometimes I will need 100 mg instead of 50. I take it upon waking and at night incase pain precludes me from restful sleep. Tonight I am going to take another 50 since I am aching so bad.
I also get kidney stones. For that I take hydrocodone (when during my pregnancies) but it tends to make me nauseas. Percocet is the best and strangely it is a little energizing. I use it when the non-kidney pain is bad, too. I asked for something non-narcotic that would help me during the day when I am the only caretaker for my children.
I took amitryptiline once after a surgery and it did help with pain (before dx). I have thought about taking it again.
As far as me having an infection, my titers indicate mild HHV-6 and full-blown, recurrent EBV. Of course my initial diagnoses my IgM was positive. A year later my IgG was 10. 2 years later it is badk at 1:1280.Obviously I am producing more antibodies to EBV and dang gum it, that stupid afternoon slight fever…99ish is back. AND I am hypothyroid!!!!
Guide Note: the vitamin D dosages mentioned in this post are considered dangerous and possibly even toxic by many experts. Please work closely with your doctor to determine the optimal amount for you. ~Adrienne
Narcotics have always worked the best for me in terms of pain control, and I am currently taking 30mg of Methadone twice a day. I’ve been taking Methadone for almost two years, and I’ve noticed that it has not become less effective as time goes by, like vicodin, oxycodone and fentinel did. It’s hard for me to explain, but Methadone helps me in two main ways:
1. I don’t seem to care as much about the pain I am experiencing when I take Methadone, but I’m not sure if the pain is any less than when I don’t take Methadone. When I don’t take the Methadone, the pain is about all I think about, and I become more depressed and inactive, irritable, moody; and the other numerous fibro symptoms become much more pronounced, especially IBS.
2. My mood is much better when taking Methadone; much less anxious, irritable, feeling like I’m going to jump out of my skin.
Luckily I have a very understanding primary care physician who understands what fibromyalgia is and has no trouble prescribing Methadone, as long as I follow the rules that I signed before starting it (which I’ve always done). The other thing about Methadone is that it stays in my system for 12+ hours, so I don’t get the up and down effect that I had with Vicodine. Sometimes I just don’t need to take it because whatever is left in my system is doing it’s thing! Thank you for your emails – I always look forward to them. Take care,
Patrick
I have been diagnosed with fibromyalgia. I admit that some of the aches and pains are just that. I have severe hip pain that starts in the middle of my buttock and all the way down my leg. I had a nerve block performed quite a few years ago because of endometriosis. The Dr. hit my sciatic nerve 5x’s. Now I have permanent damage to my sciatic nerve. But, I also feel a knot in my hip that makes a popping noise when I walk. MRI’s don’t show a thing, so the Dr.’s are telling me it’s fibromyalgia! Now my Dr. isn’t giving me opioids and has prescribed me something called Savella. Does anyone know anything about this medicine? I can’t take antidepressants because they give me really bad side effects. I am taking Lyrica, but it’s not helping! I’ve even put on weight and haven’t changed my eating habits. Anyone with advise would help me out tremendously!
Kimmy,
First, with your leg pain I’d recommend asking about myofascial pain syndrome (MPS) or ITB (illiotibial band) syndrome. Either one could cause the hip pain you describe. Most doctors don’t know much about MPS or think it’s the same as fibromyalgia, but it’s actually very different and a lot easier to treat. Here’s more:
Fibromyalgia & Myofascial Pain Syndrome
About Savella, the manufacturer likes to say it’s not an antidepressant because it’s not approved as one in the U.S., but it IS an approved antidepressant in a dozen or more other countries. It’s an SNRI, just like Cymbalta, only it raises norepinephrine more than serotonin.
Savella Profile
If Lyrica’s not helping, you might want to talk to your doctor about weaning off of it. Don’t quit suddenly, though, as it can be dangerous.