I asked on Facebook if anyone would like me to cover a particular topic on the blog. Angela replied and asked me what I knew about medications for treating fibromyalgia as she was experiencing unwanted side effects and did not know what to do. I could totally relate to her issues as I had unwanted side effects when I took prescribed drugs to treat my fibromyalgia too.
I have mentioned in some of my previous posts that I do not take any traditional medications to treat my fibromyalgia. Those of you that have been following my journey will know that I instead opt to take herbal therapies and that I have also made significant lifestyle changes.
In my opinion, medication can play a role in managing fibromyalgia for some patients. However, there is no one-size-fits-all approach and often the benefits of these meds are outweighed by unwanted side effects. I also believe that taking a drug without addressing lifestyle choices will see limited improvements in a condition such as fibromyalgia.
Disclaimer: I am patient sharing my story. Always seek advice from a doctor regarding treatment for fibromylagia.
Drugs Approved To Treat Fibromyalgia
There are three main drugs that are approved to treat fibromyalgia: Lyrica (Pregabalin), Cymbalta (Duloxetine) and Savella (Milnacipran). The unfortunate truth is that, even though these drugs have been approved for use in treating fibromyalgia and have undergone rigorous testing, the likelihood of them significantly helping you is mimimal.
According to the National Pain Report, only one in 10 patients taking Lyrica (Pregabalin) will see a 50% reduction in pain. For Cymbalta (Duloxetine) it’s one in 6 patients and for Savella (Milnacipran) it’s on in 8. These are hardly amazing statistics. In fact, they are the complete opposite.
The unfortunate truth is that only a minority of patients will see any significant improvements from taking these drugs. The benefits are likely to be minimal to moderate for most and many will actually find no benefit at all. This highlights the need for more research into treating fibromyalgia as there needs to be better options available. To me, especially with the improvements I have seen with Vital Plan, these statistics are just not good enough.
There are of course other medications that are used to treat fibromyalgia “off label”, such as Gabapentin (an older, similar drug to Pregabalin). “Off label” basically means that the drugs are licensed to treat other conditions but doctors will often prescribe them to treat fibromyalgia. However, the success rates for these drugs are also questionable.
Unwanted Side Effects
The biggest issue with medications used to treat fibromyalgia are the unwanted side effects. Even if you do see benefits from taking a medication, you are likely to experience one or more side effects. As with all medications the list of side effects for each drug is long. The worrying aspect, as far as I’m concerned, is that some of the listed side effects are actually the same symptoms that we already experience due to fibromyalgia: dizziness, sleep problems, drowsiness, tiredness, headaches, joint or muscle pain…
This can make it difficult to ascertain whether our condition has flared or if we are experiencing side effects from our medication. This was certainly the case for me when I took Gabaptentin. Here’s some of the unwanted side effects I had: headaches, fatigue, sleep problems, memory problems, anxiety… and for what benefit? My pain was dulled and it reduced my neurological symptoms (though it pretty much numbed everything!) but nothing significant.
My pain was still there. I basically traded off a slight reduction in pain for the worsening of many other symptoms. I think you can probably see why I decided to stop taking it. It wasn’t until I stopped taking this medication that I realised the extent of the side effects I was experiencing.
My question is: how many people take these drugs and experience side effects that they believe are due to a worsening of their condition? And how many put up with awful side effects for little benefit? I know I can probably speak for the vast majority when I say that any reduction in pain can be worth it… but at what cost?
A State Of Managed Illness
Many might consider this a controversial statement but my concern is that the drugs used to treat fibromyalgia are creating a state of “managed illness” rather than empowering patients to feel better. The trade-off between side effects and benefits is concerning and I question whether these drugs are really improving the quality of peoples’ lives. They might for the minority but in my opinion that’s just not good enough.
We need improved treatment options and the healthcare system has to learn that there are perhaps different, more effective ways to help someone with fibromyalgia above and beyond writing a prescription. More research is needed, not only to better understand the condition, but to help doctors better understand how to treat it.
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If you are not happy with the medication you are taking, my advice would be to speak to your doctor and see if there are any other options available to you. If, like me, you try more than one medication and decide you are no longer willing to take them for little benefit, my advice would be to do your own research.
The book “Suffered Long Enough*” and the Vital Plan Restore Program* have been imperative to me feeling better; my pain is now minimal, which is amazing!
I highly value this program but I appreciate that we are all individual. When it comes to any new treatment, speak to your doctor first.
Further reading:
I’m so glad there is somebody else that doesn’t take anything for their Fibromyalgia! To be honest, my new doctor said that it’s unfair to put me on a ton of medication, at my age. Which I’m fine with as I have a fear of taking tablets that aren’t freakin’ tiny anyway!
I think it’s definitely possible to manage the condition without medications and if you are coping okay then there’s no reason for you to take meds. It’s all down to what suits the individual where fibro is concerned 🙂
I agree with you about the medications creating a state of managed illness. Lyrica made me feel even worse with brain fog, fatigue and extreme weight gain. I don’t really believe drug companies want to improve our illness, instead they want lifetime dependency for their drug. The only medication I take is to help me sleep. I tried to sleep with natural treatments but nothing worked. Since sleep is so important for me to feel my best I weighed my options very carefully. I take a very low dose of amitriptyline, which has been on the market for years. It helps me get the restorative sleep I need and I don’t have any side effects from it.
You make a very valid point Sue about drugs companies. Sleep is so important to feeling as well as possible and it’s great you have found something to help you with that.
Hi Donna, I’ve only ever been given amitryptoline (and I’m too scared to stop taking it as I struggle as it is to sleep) and pain killers when I really need them. The I others have never been offered but I’m super happy without them 🙂 can I ask what you take, of anything, to aid sleep?
Hi Melissa, this is a really good article on insomnia worth reading: https://vitalplan.com/conditions/sleeplessness
I actually started sleeping better through having alternative therapies, such as Bowen and Reflexology (though I no longer do these) and through following the protocol I wrote about in this blog post. I could actually do with updating that post as it was written in 2013 but it’s exactly what I did to help sort my sleep out.
More recently I began taking 200mg of L-theanine, which is an amino acid, and this has most definitely improved my quality of sleep. I wrote about it here. I also think improved sleep has been a by-product of the herbal therapies and diet changes I have made.
Can I ask where you buy your L-theanine from please. It’s the sleep because my neck and shoulders seize up over night that seems to keep me awake. Thanks
Hi Richard, I buy mine from Amazon, you can find it here. If you have neck/shoulder problems I would highly recommend a Tempur pillow. They are expensive but definitely worth it!
Thank you for the post. I’ve been “treating my Fibromyalgia with: healthy diet, meditation and self hypnosis. I only follow positive people and websites on social media so that I can easily be put in a happy mood by visiting those sites. I am also striving to get all harmful chemicals out of my house. Last year at this time, my pain was between 6-8 and I was using a walker. Now, I sleep like a baby and my pain is between 2-4 on any given day. However I feel I improve with every healthy choice I make.
Wow that is an amazing achievement Chantal, big well done to you! It’s amazing how these changes can make such a positive improvement over time. Stick with it, you are doing great 🙂
I love this. I DO take Cymbalta but I also have significant anxiety and with it being an SNRI I know it helps to manage that (and I’ve been off it- I KNOW it helps the anxiety) Its possible that it has the side effect of helping my pain? But hard to tell. Doctors keep wanting to up my dosage of it and I keep having to fight to stay where I’m at. I’ve been on Savella and Lyrica too and they did JACK DIDDLY but make me feel worse. Actually- the drug that helps my fibro the most? Topamax. And that was prescribed for my migraines. Go figure right? I’ve got like 4-5 different Dx and I feel like half my fight is telling doctors “I’ll listen to you about this new drug you want to put me on. But you have to CONVINCE its gonna do more good than harm” (Not fibro related but the side effects of my POTS drugs were even worse!- including depression and anaphylaxis- only to be “rechallenged” by my doctors.)
Gosh, yes, side effects can be hard to tolerate. I don’t have any issue with using medication to help manage conditions but for me, the side effects tend to outweigh any benefit. It sounds like you have a great mindset, making the best decisions for you and advocating for your needs.
Hello, I have had terrible side effect with all three medications, Cymbalta- Irritable mood, teeth grinding, complete loss of libido (that was the worst off all side effects), Lyrica- terrible panic attacks and stomach aches, and Neurontin – I was so dizzy I couldn’t even walk straight. Unfortunately the Cymbalta actually helped me, I was 100% pain free but the side effects almost cause my boy friend and I to break up. Now I don’t know what to do. I’ve tried the life style approach but its hard. How can I exercise if I only can barely walk? I am only 32 years old and in otherwise very healthy condition.
Hey Laura, I am sorry to hear that you too have suffered from terrible side effects. It’s such a shame that Cymbalta helped you to get to 100% pain-free but the side effects were intolerable. Lifestyle changes are hard. When it comes to exercise, I try to think in terms of movement rather than the typical things we think of as exercise. Restorative yoga could be worth looking into, as well as Qigong. I really love this youtube channel and I also have Donna’s book. I literally had to start with 1 repetition of 1 movement and built from there. It’s frustrating but it does get easier.
For me, diet changes, herbal therapies and gentle movements help. I also wear and use a Quell every day (which I will be writing about shortly) and apply the hemp lotions from the Fay Farm daily too.
I am so glad I am 1 that has a pain reduction with Lyrica, it changed my life if I don’t have it I can’t get out of bed and never seen a rain storm Lyrica is a wonderful drug for me I love it and the improvement it has made in my life. I did have to get my dose to 150mgs to see a difference however so keep that in mind but don’t knock it if you haven’t tried it
Hi Jeanie, that’s wonderful that Lyrica works so well for you. I am not knocking anything, simply sharing my personal experience and including some statistics to help people to understand why they may be like me and not feel the benefit they are looking for. I will advocate for the fact that fibromyalgia patients in general need better treatments with a higher success rate.
Hey guys, I’m 26 and in constant battle with my docs that seem to think just throwing any and every pill poss at me will surly find something to work, so far every single prescribed pill I have tried has done nothing besides exacerbate my current issues. Gabapentin was the only think that slightly took an edge off but also made me so sleepy I was struggling to keep my eyes open and when sole caregiver to a 5 ur old I cannot be doing that! They also gave me antidepressants which actually made me have more suicidal thoughts that ever before believe it or not! So stopped those straight away. I have been diagnosed with joint hyper mobility which essentially Iv had all my life with no issues but cause this is a diagnosis the docs are just running with it and saying it’s the cause of my problems 😩 at my wits end with it all as I feel no one will listen and I’m suffering more & more everyday. Does anyone else find their pains worsen with stress? My worst part is the complete unpredictableity of my pains, can come from nowhere and affect anywhere. Which kills me inside as it’s really started to affect the quality time I’m able to spend with my son playing like we used to and I’m struggling to keep myself together. Just need some good vibes around me I think and someone who can enlighten me more. I feel fibro is what I have but the docs just won’t diagnos it which kinda makes me feel lost in limb…. o
Hi Nichola! I wish that the medical system offered us more than a written prescription 🙁 Though they can be helpful for some, it’s not the answer for everyone. I completely empathise with what you say about Gabapentin. I found it made my fatigue worse too. The cons outweighed the little benefit I was getting from it so I decided to stop. It’s pretty much been trial and error for me ever since. But, I am with you re: stress. Stress has always had a massive impact on my symptoms. I can relate to the frustration of not getting a diagnosis too (see this post here… much later on I found out I had Lyme Disease). If you are in the UK it might be worth asking your GP for a referral to your local pain clinic?
Hey 🙂 thanks for your response. I am currently waiting on my appointment with MSK. have been waiting almost 6 months for it! Just keeps getting passed around which is even more frustrating. I was advised to try CBD Oil and can say that for the moment my pain is high, after 10 mins of taking the oil it does seem to significantly reduce the pains (granted not fully, but more so that any prescribed) also hate to admit but have also gone back to smoking (not cigs) on a nighttime to allow me to get some form of rest! Obvs this is NOT ideal but nothing else to turn to as it stands. Makes me feel disappointed in myself but I can at least get a couple hrs undisturbed sleep if I do which has been lovely!!
It’s such a shame that referrals can take so long. I hope that your appointment comes through soon. That’s great to hear that CBD oil is helping you 🙂 Please don’t be disappointed in yourself. Sleep is absolutely everything and I can fully appreciate the need to do what guarantees it for you. Hopefully, you will get some help in your appointment with MSK on the sleep issue. Good luck!
I just stumbled across this post and I have to say, I am glad to see there is others that feel this way.
I have just been prescribed Lyrica and though I was told it would take a few weeks to kick in, I am struggling to believe that it will help.
Thanks for sharing!
Hi Samantha, if you feel like it’s worth the try then try, I was given those too with the same promise, will take few weeks but shud work… every week that went by they just kept advising me to increase the dosage. I would do that and still no improvements. Honestly I still struggle every min of every day but do feel like I was more fatigued and tired wen on the meds than without them. I have also tried CBD oils which can help to slightly reduce my pains and stiffness but unfortunately stil not enough at the moment. Good luck tho and I hope u find some relief
Hi Samantha. I think with everything, it is worth giving it a good try but if it isn’t for you, it isn’t for you. And, that’s okay. Hopefully, the next thing you try (whether medication or otherwise) will help you. It’s unfortunate that we have to go through such trial and error but everyone is different and what helps on might not help another. Good luck!
Has anyone tried the legal pill version of medical marijuana? My doctor suggested it but I said no. I can’t find any evidence based support of it.
Hi Laura. Unfortunately, I haven’t tried this as it isn’t legal where I live. However, I have heard of others’ experiences and they seem to be positive with regards to pain relief.
Hi Laura, in terms of the pills – no. In the UK they are not legal however CBD oil is and i have had experience with these, you should definiately do research into this before buying as there are now ALOT of counterfeit products circulating. One thing I would say is it’s quite expensive and there’s diff ways of processing the oils which can also effect the quality. IF IT SEEMS TO CHEAP there’s probs a reason for it!
https://www.projectcbd.org/guidance/cbd-users-manual
Maybe this link can give you a bit more information to allow you make a decision 😊👍
I was diagnosed fibromyalgia 6months ago . I took alot of medicine and also did the injection for 3days morning and night. but there’s no improvement the pain still there and i ll suffered alot of pain .i couldn’t concentrate to work . So depressing 😞
I’m so sorry Cherry, it’s hellish, it really is. If it gives you any hope at all, I wrote this post in 2015. Sitting here in 2023, my life is completely different and I consider myself recovered. I’m not the person I was before chronic illness but I have a new normal that is more than I would have thought possible for myself back then. I truly hope for the same for you.