If you live with fibromyalgia, you may often hear suggestions friends and family about how to treat, cope with or even “cure” your fibromyalgia. These suggestions can be frustrating if the person is neither a medical expert nor has fibromyalgia, and doesn’t know what the condition really feels like.
According to The Mighty’s Fibromyalgia Condition Guide, fibromyalgia is a complex chronic disorder that involves three main symptoms – widespread pain, chronic fatigue and cognitive trouble. There are a variety of treatment options available for fibromyalgia, but currently there is no cure. While people may have many symptoms and side effects in common, fibromyalgia affects everyone differently.
This also means people with fibromyalgia manage their symptoms in different ways. What works for one person might not work for another. Loved ones may offer well-intentioned suggestions after seeing a particular medication or treatment strategy help one person with fibro, but that doesn’t necessarily mean it will benefit another person going through the same symptoms.
Though friends and family are generally trying to help, these “suggestions” can often come across as unsolicited advice, and may be frustrating or even hurtful for those with fibro. To gain some insight on why these suggestions should be avoided, we asked our Mighty community what “suggestions” they’re tired of hearing, and what they wish others would say or do instead. Unless your friend or loved one asks for advice, try offering a listening ear instead.
Here’s what our community had to say:
1. “Have you tried yoga?”
While yoga can be a great way to reduce stress and stretch out your body, there’s not enough evidence to conclusively prove that yoga can benefit everyone with fibromyalgia. For some people, it may help a lot. For others, it could be more harmful than helpful. Everyone is different. Either way, yoga is not a “cure,” and it can be frustrating to hear that recommendation if you’re already working on an exercise regimen or treatment strategy with your doctor.
“‘Why don’t you do some yoga? It will help your mind too.’ I’m medically not allowed to do yoga due to the severity of my fibromyalgia and most people who offer me this ‘advice’ already know I’m not allowed to do it. I wish they would say, ‘Is there anything that does help that I could do with you?’ Or, ‘Has your doctor offered you any more techniques to help pain?’” – Hannah W.
“Yoga! Pilates! Exercise! Sleep! Ugggggggh.” – Kristen R.
2. “You’ll feel better if you change your attitude.”
In the past, fibromyalgia was mischaracterized as a mental health disorder. While there’s a strong overlap between fibromyalgia and mental illness, particularly post-traumatic stress disorder (PTSD), fibro is not a mental health condition itself. It’s important to recognize that the symptoms of fibro are not “all in your head.” While some may find that a certain mindset or attitude helps them cope with their symptoms, “thinking positive” can’t cure a chronic illness.
As Mighty contributor Denise Reich wrote, “You can tell us to think positive, but you should know that it’s not going to give us the support or empathy that might actually help us. We don’t need to be told how to think or feel on top of everything else.”
“I hate people saying that it’s all to do with your mindset and you will be better if you change your attitude. How I’d love for those people to have fibromyalgia for just one day!” – Amanda L.
3. “Check out this great solution!”
Fibromyalgia symptoms can be difficult to understand unless you’ve experienced them yourself. There are plenty of products out there that might help you manage your fibro, but it can be aggravating for someone to promise you a “solution” when they don’t understand the full scope of fibro or how it affects you. Not everyone is the same. What might help one person with fibro might not help you.
“Anyone but especially ‘friends’ trying to sell me a cure for profit with little to no education or information about my health battles. Oils, powders etc. It devalues my struggle as well as thousands of others who fight each day. Every single one of us is different, there is no cure. What works for Sally’s cousin Fred’s sister Carol may not work for me. Respect that.” – Diana D.
4. “You should continue working.”
Working is sometimes not an option if you have fibromyalgia, but it can be difficult for the people around you to understand that. As contributor Alyson Knop described in her essay, “Our society is one that values work so highly that what one does becomes one’s identity.” Those who don’t understand the effects of fibromyalgia might not recognize why it can make work difficult or even impossible, and encourage you to continue for financial or personal reasons. What some might not realize is how difficult it can be to be unable to work. It’s a decision that needs to be respected.
“You must go to work and then you can visit your psychologist every week to let out your frustration. Do not make excuses.” – T. S.
“Not really advice, but when they say, ‘oh sucha-body has fibro too and she still works.’ Believe me, I’d rather be in work earning a decent living than getting stressed out having to fight because I have no income since the benefit people don’t think I’m ill enough to justify receiving £73 a week.” – Katie S.
5. “You should try changing your diet.”
For some people with fibromyalgia, food can have an impact on how they feel. However, a change in diet isn’t always going to fix everything. It can be incredibly frustrating when the people in your life suggest that the latest diet trend can “cure” all your symptoms, because only you know what’s best for your body.
“‘Try yoga.’ ‘Go gluten free.’ ‘It’s not permanent, it will get better.’ Yoga isn’t advisable for me since I’m constantly hurting myself. I tried lessening my gluten consumption and while it helped my stomach, it did nothing for my pain and I’ve had fibro for 12 years. If it was going to go away, it would have by now.” – Amy C.
“‘Fibromyalgia just means you have more aches and pains than the normal person, but a plant based diet will cure you. It cured my husband of diabetes.’ I’d rather never get any suggestions from anyone, except other ‘fibromyalgics.’ Nobody can get what this feels like or how many different things we’ve tried, except someone in our shoes. Even then, it’s different for every one of us.” – Shannon M.
6. “You should exercise more.”
Exercise isn’t always beneficial when you have fibromyalgia. Contributor Sharon Patterson explained in her essay, “With too little movement I would become worse and rapidly gain weight; however, with too much movement I would land in bed for a few days… unable to accomplish even simple daily tasks without severe pain.” When someone suggests that you should work out, they probably don’t realize how complicated exercise can really can be for someone with fibromyalgia. Those with fibro should always consult their doctor before beginning any new exercise regimen.
“I wish people would stop saying I just need to work out more. I wish they would just say ‘stretch when you can’ or ‘walk when you can.’ Having fibromyalgia, you change day to day. ‘Do what you can,’ sounds better than, ‘oh just do this or that.’” – Ella M.
“[I’m sick of people] telling me to exercise. I know my body and what it can or can’t do. Every time I would start a exercise program, I would do good for a while, but after a couple of weeks it would backfire and send my body into a very bad flare-up. I’ve tried this over and over and my health did not improve but instead, it declined. Don’t assume people can exercise just because you read it in a magazine or heard of someone else doing it. Every person’s illness and body is different. Don’t judge.” – Jenny S.
“Exercise. Exercise doesn’t help everyone’s condition and causes me to have immediate unbearable flares and I am so tired of people telling me to just exercise.” – Mary M.
7. “Don’t let fibromyalgia control your life.”
The word “chronic,” by definition, means “lasting a long time.” So when you have a chronic illness such as fibromyalgia, it means your illness is persistent and lifelong. Fibromyalgia doesn’t necessarily have to “control” your life – but it’s also not something you can always put on the back-burner. A chronic illness often requires constant management and treatment, but this is done to improve quality of life.
“I am sick of hearing ‘you can’t let it run your life.’ Well I can’t just ignore it either!” – Heather S.
8. “My friend tried this and it helped her.”
There’s no right answer or “one-size-fits-all” treatment when it comes to managing fibromyalgia symptoms. Many people with fibromyalgia may have to experiment with different combinations of medications and treatments for years to find something that works for them. Just because one product or treatment strategy helped one person with fibro doesn’t guarantee it will do the same for another person with fibro.
“Someone else had [fibromyalgia] and they [did this] and now they are all better!” – Micca B.
“When someone starts with, ‘I know someone who has fibromyalgia and they just did (insert whatever juice cleanse/diet) and it completely helped them.’” – Dani S.
9. “You’ll feel better after a good night’s sleep.”
The National Sleep Foundation calls sleeping with fibromyalgia “a double-edged sword: the pain makes sleep more difficult and sleep deprivation exacerbates pain.” While getting a good night’s rest could potentially help ease some of your fibro symptoms, it’s not necessarily the easiest task to accomplish.
To get restorative sleep, you need to reach a deep stage three and four delta wave sleep and rapid eye movement (REM) sleep. Because fibro causes your sympathetic nervous system to stay locked in a hypervigilant state, it’s hard to reach deep sleep because your body wants to stay alert in case of a threat. This makes it extremely difficult for many with fibromyalgia to get refreshing sleep.
“I get, ‘just get a good night’s sleep, you’ll be fine tomorrow.’ What’s a good night’s sleep for a start?” – Jo A.
10. “If you go to church, God will heal you.”
For some people with fibromyalgia, religion can be a helpful coping tool and may lift their spirits on difficult days. However, it can be extremely hurtful when others suggest that going to church, praying or practicing religion will “cure” your chronic illness.
“[People suggest that] if I would just pray, go to church, and give it all to Jesus, I would be cured.” – Jason P.
11. “You shouldn’t take so much medicine.”
For many people with fibromyalgia, medication is an important part of their treatment strategy. Whether or not a person takes medication (and the amount of medication they take) is up to them to decide after having a conversation with their doctor. More than likely, they have already weighed any pros and cons and are making the best decision for their health.
“‘You shouldn’t take so much medicine!’ Instead, how about not shaming me? I don’t want to take any medicine, but I have to get through the day. Offer to get me a glass of water or just don’t comment at all.” – Shannon M.
“My daughter was advised by her rheumatologist to exercise [because] they don’t give kids meds… She is 15.” – Debra R.
12. “I don’t have fibromyalgia, but…”
Trying to relate to someone’s experiences, while perhaps a well-intended gesture, can actually be unhelpful or even dismissive of that person’s experiences. Sometimes, offering support and a listening ear can be much more beneficial than offering advice when you don’t really “get” fibromyalgia.
“I wish people would just stop giving advice all together. We within the fibromyalgia community give ‘tips’ to one another because we have similar symptoms. However, not every ‘tip’ helps because our bodies may react differently. For some reason, people that don’t have fibromyalgia give advice like they are experienced with our disease. It is extremely aggravating; we’re doing the best our bodies will allow us to do.” – Jeffrey D.