During a discussion on Fibrofighter’s facebook page and private group, I had asked “What’s the worst piece of advice you’ve ever received from someone who doesn’t understand chronic pain?” Here are the top five answers from people around the world who live with fibromyalgia!!

1. “You just need to exercise more”

Probably 100% of fibromyalgia patients have been told this exact sentence by their doctor or any other health care provider. I believe exercise is important whether you have fibromyalgia or not. However, have health care providers ever stopped and asked you once how physically active you were before fibromyalgia? I never have! I used to always be on the go. I used to be able to walk for hours on end, bike ride outside during summer and ice skate in the winter. When a person was very active before their fibromyalgia diagnosis and loses the ability to take part in any of these physical activities -“just add exercise” is not the answer we want to hear.

Second of all, no one ever stopped to tell me exercising with fibromyalgia looks completely different then what we perceive as exercise when healthy. “Just add exercise” is a very vague statement. Exercising with fibromyalgia needs to be less strenuous and more gentle. We need to be taught HOW to exercise with chronic pain conditions. I am so sick and tired of this sentence from health care providers and/or friends. Yoga is often recommended as an exercise for fibromyalgia, but did you know there are many different types of yoga? I didn’t. Which yoga is better for fibromyalgia? We are never informed. “Try yoga, it help you!” I recently found out there is chair yoga – which looks to be more suitable for my physical capabilities.

2. “You just need to lose weight!”

Ummm… hello!!! Fibromyalgia affects people of all weight and sizes. Fibromyalgia does not pick and choose who to affect by weight! Anyone of any size can be diagnosed with fibromyalgia. Do people understand this? Obviously, we understand that being overweight is not the healthiest. Yes, we all know it is important to eat healthy. However, many of us with chronic pain – we gain weight for several reasons. We have a difficult time moving around due to increased pain / fatigue and other symptoms. Obviously we move around less because moving simply feels like our muscles, tendons, legiments, or our bones feel like they are being ripped out of our body. Less movement means weight gain for many of us. It is not because we want to gain this weight! Secondly, many medications used to help lower fibromyalgia pain, one of the side effects is weight gain! This weight gain shows up and is hard to lose it without discontinuing the medication. Bone pain or some extra weight. I think I would rather live with the weight gain then the debilitating pain fibromyalgia causes.

3. It is all in your head – it must be your mental health.”

Fibromyalgia is not a mental disorder. It is not a fake or imaginary condition. I personally believe depression can possibly cause fibromyalgia due to a high stress response. Depression can cause the body to have a high stress load. Stress can be a trigger for fibromyalgia to develop. Just food for thought ( my personal opinion). When I hear people tell me it is all in my head – I always state “It is in my head! My brain amplifies pain signals and reads them wrong.” Fibromyalgia is actually considered a neurological condition, not a mental health condition. A recent study, reported finding an autoimmune response which could make fibromyalgia a rheumatoid condition in the future. We are not mentally crazy. There is scientific evidence fibromyalgia exists and is very debilitating. Anyone who solemnly blames fibromyalgia on mental illnesses is not informed and educated on current findings.

4. “You will feel better if you get more sleep!”

What is sleep?! Most of us with fibromyalgia struggle with sleep disruptions or insomnia. If sleep was the answer we would have an easy cure. Sleeping when you have chronic pain is near impossible when the pain wakes you up every hour all night long. ” Get more sleep!” How do we get more sleep when scientific studies report that people with fibromyalgia do not remain in deep sleep long enough to benefit the body?! Even when I manage to get a solid 5-8 hours of sleep, I wake up looking like a zombie and feel like I have not even gotten an hour of sleep. Adequate sleep is recommended for everyone, but when you factor in chronic pain it just doesn’t fix the problem. No amount of sleep is going to fix a person with fibromyalgia. We might replenish a small amount of energy to get through the next day.

5. “You just have to push through the pain”

This comments boils my blood. Pushing through pain from a sprained ankle is one thing, but pushing through chronic pain is nearly impossible. When we push through the pain we feel with fibromyalgia, it often results in amplified chronic pain or a full blown fibromyalgia flare up! What is the purpose of pushing through the pain to only end up bed ridden? In my opinion it is not worth pushing through the pain. Pushing through results in uncontrolled symptoms. Read more on my previous blog about pushing through here.