Too many medications for fibromyalgia just don’t work. There are so many medications for fibromyalgia, and while they all work for a small percentage of those living with the illness, too many don’t work for the vast majority of those living with fibromyalgia.
For all that the drugs have done for Fibromyalgia (FM), the evidence suggests that none of these drugs are particularly helpful for many people with FM. Dr. John Quintner of the National Pain Report points out that the Number Needed to Treat (NNT) for Lyrica indicates that only one out of ten FM patients taking Lyrica is likely to receive a fifty percent or greater reduction in pain. It’s one out of six for Cymbalta and one out of eight for Savella. That means only a small percentage of FM patients can expect their pain levels to drop really significantly on these drugs. via Prohealth.com
I’ve tried them all, you probably have too. The three major drugs approved for Fibromyalgia: Lyrica, Cymbalta, & Savella.
I’ve always understood that for a drug to get approved it has to help 50% of the people 50% of the time (basically if half of the people see a 50% reduction in whatever symptom, it can get approved). According to Dr. John Quintner at the National Pain Report, the reality is much worse.
Of course, medical studies to approve medications typically do not include a diverse group of patients. There are good reasons to keep the patient group as similar as possible. The problem is that the reality of the patients used to test a medication and the patients who actually end up taking that medication are vastly different.
According to Dr. Quintner, the number of patients who are helped even a fraction of the time are often as low as 1 in 10.
“For Fibromyalgia patients, the NNT for Lyrica is 10; for Cymbalta it is 6; and for Savella it is around 8-10.
This means that only one out of 10 patients taking Lyrica (Preglabin) will have pain relief of 50% or more. Only one out of 6 taking Cymbalta (Duloxetine) will have relief of pain and only about one out of 8 taking Savella (Milnacipran). –National Pain Report
Outside of the main three approved medications for fibromyalgia, there are many others that are used off-label by doctors to treat various symptoms. Unfortunately, they typically work at about the same rate.
I had no luck at all with the Big 3. I think the longest I lasted on any of them was about six months (for both Savella and Cymbalta) before the side effects became intolerable. I didn’t last a week on Lyrica. The improvement I did get from Savella and Cymbalta was minimal. The only med I’ve seen any real improvement with is Gabapentin (Neurontin), the older cousin of Lyrica. It seems to help my nerve pain. After more than a decade this is the only fibromyalgia medication I still take.
Medical marijuana for fibromyalgia
I often wonder why and how they can get away with marketing medications that show so little real improvement. The reality is that the likelihood of getting relief from one of these meds is not much higher than that of a placebo. Yet, so many medications remain unavailable that have shown much stronger efficacy. Medical Marijuana is one such drug, that has been shown repeatedly to reduce symptoms of fibromyalgia, yet it is still not widely available.
The number of states that have legalized medical marijuana continues to grow each year, leaving us hopeful that perhaps we will see it fully legalized within the next decade. As of this update, medical marijuana is fully legal in 36 states; of course, it’s used illegally in the remaining 14.
The 2018 Farm Bill brought us the the widespread legalization of everything made from hemp, including CBD oil, and Delta 8 THC. Both elements can provide the benefits that you see with marijuana in a form that is legal in most states.
CBD is one component of marijuana and can help with some symptoms without the high that is often associated with marijuana. I’ve been taking CBD for several years now and I have found that it helps me sleep well at night and also reduces anxiety during the day.
Delta-8 THC is the trace amounts of THC found in the hemp plant. Since legalization many CBD companies have found ways to extract these small amounts of THC and process them in such a way that they can be consumed in any of the same ways other forms of marijuana are taken. This type of THC typically has less side effects, while, for some, providing more benefit than Delta-9 THC (the form found in marijuana).
Too many meds for #fibromyalgia just don't work for most patients. What have you found to successfully treat your symptoms? Share on XSo, what say you? Have you tried medical marijuana? Does it work for you? What medications for Fibromyalgia have you tried that actually worked? (Share your thoughts in the comments below).
Related Posts:
- Evaluating the Effects of Lyrica for Fibromyalgia
- Medical Marijuana and Chronic Pain
- Cymbalta Side Effects (Sweating, Flushing, and more)
- Marijuana for Fibromyalgia: Does it work?
Josephine Orta says
I have participated in a clinical study, and I can tell you why the results are skewed. I was discussing the study with my daughter, whose business typically employs young women. She told me a number of them have also done clinical trials because it’s an easy way to make a little money on the side. She revealed that they all state that no matter what the effects of the tested treatment–dizziness, nausea, headaches, weight gain and worse–they never report adverse effects but just power through the trial. They’re in it for the money. If they report negative symptoms, they’re cut from the study. So they lie and get paid.
I was shocked, so I guess that shows how naive I was. I was in that study because I suffer from the condition and want an effective remedy. But evidently, many study participants lie about their eligibility for clinical trials because they’re willing to take anything for a few bucks.
If the eligibility criteria were changed, and ONLY the subjects’ doctors could refer them for trials because the patient is invested in a successful treatment, then the results might improve. In the meantime, this is only a part of the crisis that prevents effective treatments from being successfully tested and approved.
Loraine Ertelt says
When I was diagnosed with fibormyalgia, my doctor said Lyrica; and I looked at her and said whey would I take something that takes more time on the TV ad to tell you the side effects than what good it will do. I was diagnosed in Mar 2016, and have taken no prescribed meds since the beginning. I told my doctor to tell me what I could do naturally, and I would do it. My diet is sugar free, glucose free, caffeine free, and lactose free. I east mainly fish, pork, and fresh vegetables and fruit and no BEEF. The next thing she said was “motion is lotion.” Exercise and walk. I do gentle yoga 3 times a week and strength and stretch for seniors 3 times a week. I walk about 2 miles every day. The last thing she said was hot soaks once a day with epsom salts. I do take one tylenol when I get up and one before bed. My husband’s pain doctor (my hubby has had 3 back surgeries) told me to add turmeric and magnesium before bed time. I’m not saying I don’t have bad days (I live in northern Colorado where the weather seesaws (today it’s 53 and sunny and then three day with snow coming), and I can definitely feel the weather changes (also have osteoarthritis in almost all my joints), but I keep moving and follow my diet. I also have bouts of fibro fog which means I don’t move as much and stay in my recliner more. The last thing I did for myself was buy a heated massage pad that covers the entire chair for my recliner. I use it faithfully 2 to 3 times a day for about 30 minutes. I will be 75 years old on Friday and am a full time caregiver for my husband, but I will continue to win against fibromyalgia!
Julie says
Sounds like you are on the right track. I also found that diet and lifestyle changes were the best medicine overall.
Stephanie says
This an easy one; marijuana will win out every time. I’ve tried all the prescription drugs and I had no clue if they helped the pain, my brain was gone. Most of them completely intolerable or horrific side effects. Fibromyalgia has taken away my body, I certainly don’t want my brain taken away as well with the exception of fibro fog days where Ive learned to just not make any major decisions. I’m also in a state that will be the last to legalize marijuana. Once people realize the long term effects of alcohol vs marijuana vs prescription drugs, marijuana will win every single time. Helps with my osteoarthritis pain as well without the side effects of Celebrex which I take if i have an obligation. Klonopin is the only prescription drug that helps my nerve pain, I’m scared to know my future since the long term side effects of it will catch up with me one day.
Julie says
Stephanie, I’m right there with you and probably in the same state (or very nearby).
Taylor Walker says
Marijuana is the only medication I use for my Fibromyalgia and it is all I will ever need.
Donna Grant says
I, like you, think it is shocking that the medications they prescribe to treat fibromyalgia help such a small percentage of people. The only one I tried was amitriptyline and it did nothing for me other than turn me into a zombie. I hated it and only lasted on it for a couple of months. It put me off trying any other medication, which turned me down a more ‘natural’ route but I am yet to find something definitive that helps hugely on that front either. I have just had a Skype appointment with a nutritional therapist, who is going to be trying different supplements but also a natural drug made from plants. I can’t remember what it is called (I will get a full report by the end of the week and then do my research to see if I was to try it). It just seems to be a ‘try this and see if it works’ approach with fibro. It’s a good job we can cling on to hope and keep positive.
Julie says
It really is trial and error at best. Good luck with the nutritionist, I hope they help you find a good mix that helps. I did amytryptiline, so I know what you are talking to. I was a zombie that wanted to eat everything in sight.
Elizabeth says
Thank you for bringing attention to this! I have tried all three and am currently just taking one: Cymbalta. It helps a little with the pain, but I mostly take it as an antidepressant. I take it with low dose Morphine. Gabapentin has also been successful for me. Savella was SO expensive and I never noticed any improvement. Lyrica I took for a few months. It helped, but the side affects were too much so I asked to be taken off. I gained a lot of weight, I was sick a lot, and it felt like my body needed more and more so the dose was having to be increased every time. So frustrating that these are the best we have :/
Julie says
Elizabeth, I’m so sorry that you are going through this, too. I hope you find something that works better. I also found that both Savella and Cymbalta did more for my mood than for my pain. However, when I really needed a good anti-depressant it was being on one of those (I think it was Cymbalta at the time) that kept me from getting the real help I needed. Instead of trading it for a better one they tried to stack them and I ended up just shy of Serotonin Syndrome (in the ER twice with extremely high BP). On the upside that was the beginning of the end for me with the meds. Going through that hell was what drove me to dig deeper for better answers, and search outside the box.
HarleyL says
I have Lupus (SLE) on top of Fibromyalgia – to say I know pain is an understatement (as I’m sure all of y’all know how that goes) and I’ve been on every single med the pharm companies can spit out. Nothing, and I mean NOTHING works better than Mary Jane. Nothing. It calms the nerves that are constantly firing (I get muscle spasms and cramps throughout my entire body this flare.. lucky me), and the only side effects are the munchies and a good, long nap, something each and every one of us can use! It sickens me that folks in pain don’t have access to the great greens! It truly is the best, hands down, “medication” for FM (as well as SLE, MS, CP, Crohns, etc).. This is why it needs to be legalized. It simply works, but since Big Pharmacy won’t make money on it, they fight it tooth and nail. Additionally, with full access for patients (thankfully I live in CA now, and Hawaii part-time, where it’s good and legal with a piece of paper), you have a whole slew of strains of medical pit to help hone in on what works best for you and your situation. I’m a hybrid girl, although I tend to lean towards indica heavy strains that limit the munchies and help me sleep – all chronic patients should be free to make that very same statement. Again, this is why we, the People, need to step up and DEMAND medical pot. It works with little to no side effects. Simple as that.
Julie says
Harley, thanks for sharing your experience. I live in a state where I have no access (and won’t for a long time). During the height of my pain I did try it once and it did give me some relief (and that was at a time when I was also taking multiple Fibro meds to no avail).
Deb D says
I am very fortunate to live in a medical marijuana state. I have tried it, and continue to use it, and it does help. A LOT. I hate smoking it, but vaporizing is very useful. But even more effective (for me at least) is use of either a tincture made with glycerin and MMJ or a coconut oil based type of “butter” product actually made for putting into capsules. The coconut flavor covers the flavor the the cannabis to where I just take a dose by mouth and wash it down with some water. Takes longer to feel the effects when used by mouth (45 minutes to an hour), but relief is more like 6-8 hours versus smoked or vaporized which lasts between 1-2 hours but takes effect within a couple of minutes. I do have a state issued Medical use card, there are hoops to go through every year, but honestly, the orally ingested coconut product helps my sleep more than any other drug I have tried, but often will cause rather vivid (but pleasant!) dreams. Considering that I had to use Xanax to sleep through night terrors I will take that anyday! My sleep issues are so closely tied to how I feel. In the past I tried: Rozerem, Lunesta, Ambien. Restoril, name one and I probably tried (and failed!) it. MMJ works the best, and I don’t feel like a chemical zombie the next day.
I do still take Cymbalta, which definitely helps with anxiety. The problem with MMJ is the social stigma. It is technically illegal to drive while using it, so I do not use it as often as I would like to keep the symptoms at bay. Regular use will cause a positive test for it for several weeks afterwards. I am also under the care of a pain management specialist who is aware but does not approve of my usage. (NOTE: Every MMJ state I am aware of most “reputable” docs wil NOT prescribe it, since they risk losing their Federal prescribing license to do so, so you go to a “MMJ” doc/clinic each year to have exam, records review, and their “recommendation” to use it since they cannot legally “prescribe” a Federally banned substance). Makes for an interesting pain contract. Bless those doctors for taking the risks that they do! Pain doc does still prescribe opiates for me, and for that I am grateful since I am quite limited in using the MMJ. Try explaining to your grown children how you can babysit your grandkids or function while using it. Try to explain to your social circle how you use it. I am almost Medicare age and there are so many legal and social barriers to its use, and I hope as states begin legalizing recreational use some of the barriers will fall.
Like many, I used Lyrica for several years on and off, but too many side effects. Especially the “out of it” feeling, which I do NOT get from the MMJ. Try to tell that to Big Pharma…I have not tried Savella since the stomach upset is so common the doc simply won’t recommend it for me. The MMJ helps me the most for sleep, and muscle spasms. I do find substantial pain relief as well, but I’m not sure if it is true relief or just a distraction affect. But, on a really bad day, even opiates barely take the edge off. As I get older I am worried about possible opiate overdoses, but not an issue with MMJ. I feel much safer vaping a bit more or swallowing some extra oil than I would taking extra opiates.
I hope this too-long comment answers some of your questions. There is no doubt that as more studies are done that the benefits will become more publicized and accepted. Canada has a drug called Sativex for MS that is made with MMJ and I suspect part of the reluctance to produce usable products from marijuana has as much to do with being unable to patent “plant medicine” as anything else. As for obtaining it, our state has MMJ dispensaries, but it is about $200 to 300 per ounce. However, personal use growing is allowed and is very inexpensive once the right techniques are learned and followed (maybe $40-70 per ounce). An ounce made into coconut oil or tincture could last a month or two, maybe more. As I get older and symptoms worsen, I am getting more open about using it and educating people. It is a true natural medicine, and millions have been brainwashed with negative information about it. It has been documented in human usage for over 3000 years. I am not touting it as a cure, but considering costs, effects, and risks it is more useful to me than many traditional meds. I think we have to be proactive patients and this is one way to be one!
Julie says
Thanks for sharing all the great info. I think that much like Fibro itself, education is the key to reducing the stigma associated. I applaud you for being open about it.
Tracy Lee Karner says
I’ve tried a lot of medications, none of which was effective and ultimately I didn’t want to deal with the side effects. Opioids worked (tramadol and hydrocodone), but I quit using them because of the physical addiction issues (and they work less effectively over time, creating a need for stronger doses for the same effect).
My doctor would prescribe medical marijuana for me. Right now I’m using CBT, pacing, exercise, relaxation exercises, nutrition, attitude, and a every other thing I can think of to manage my life and deal with the pain. It takes a ridiculous amount of time and attention, but my life is calm enough that I can cope.
I’m writing a blog series, “an alphabet of help for living well, despite everything–meaning, fibromyalgia, chronic pain, and any adversity that makes life feel unmanageable; writing it helps me remember that I have all these options.
But inevitably there will come a day when life will turn more stressful because of things I can’t control–death, accidents, stuff happens!–and I might just need to turn down the pain so I can function.
And I agree with you–it’s ridiculous that companies are allowed to advertise medications as “effective” when they clearly are not very effective. On the other hand, the placebo effect is real, and sometimes taking a pill makes someone feel better because she believes it’s going to help. I’m just happy she found relief.
Julie says
I think we all need things we can call on when we need them. I rarely use pain meds but it’s good to know they are there when I might, like this weekend when my back/neck have decided to go crazy again.
Rosemary Lee says
I couldn’t take Lyrica. The weight gain was enough for me. It wouldn’t have mattered if it helped the pain. I have never done Savella and Cymbalta because I’m afraid of them. You have to wean yourself slowly off and if the side effects are bad? I just stop taking it so I’ve never done them. Look at Tonix Pharmaeceuticals. They are in trials with a low dose cyclobenzaprine. This holds hope. I had an interview with the Dr and waiting for the post to come back so I can publish it.
Julie says
I went off both Cymbalta and Saville without weening. Well, one of them at least, the first I just switched from one to the other. The second I just quit without weening. But, I’ve never had a problem not doing that with a myriad of a/D drugs I’ve been on over the years. That was part of my issue with Lyrica, however. IMO, if it takes your body weeks to “get used to” a drug what changes is it making in your body and how much harder will it be to get off that drug later. I lasted about 6 months on each before the side effects got bad. I can’t recall what they were on the first one, but on the second I did fine then all the sudden started having what felt like inner-ear issues (almost a light version of what I went through during the first few days on Lyrica).
Kay Boyajan says
I too have tried them all, none really worked for me. They did for a little while then had to up the dose which again worked for a bit. When I stopped taking Lyrica I was maxed out. Now I’m on gabapentin and a muscle relaxer along with Norco for pain. Most of the time everything works well together except when I push myself which we all seem to do when things need to get done.
I seem to always run out of spoons before work is done, but tomorrow is another day
Julie says
I’m also on a light dose of Gabapentin and a muscle relaxer (at bedtime). I can/ do up my Gabapentin when things get worse. It’s nice to know I can do that.