Living with Fibromyalgia comes with a lot of advice about sleep, food, and exercise. Unfortunately many of the people giving advice have never experienced fibromyalgia

What life is really like living with Fibromyalgia

Today I stumbled across a Fibromyalgia article found here about living with Fibromyalgia. I have to admit, I gagged a little bit when I read it. I think this embodies all the problems with living with Fibromyalgia advice in one lousy article. These are the suggestions that were offered for coping with Fibromyalgia:

Living with Fibromyalgia: Simplistic advice

Living with Fibromyalgia 1- Get more sleep
It’s not that easy folks, people with Fibromyalgia have difficulty getting to sleep and staying asleep. Add to that painsomnia, and it makes for a lot of sleepless nights.

 2- Just exercise more

If I had a dollar for every time I’ve been told exercising would fix my health, I’d be a millionaire. Here’s the problem though, Saturday was a beautiful day so I spent 20 minutes weeding my flower beds which were in dire need of some attention. Here it is Monday and I am still in so much pain I can hardly walk, all from spending 20 minutes pulling weeds. Imagine what would happen if I tried to run or lift weights. Not to mention the current opioid hysteria makes getting treatment for pain very difficult. So if I exercise I’m going to feel worse, and then if I dare mention it to my doctor I’ll be accused of being a drug addict.

If I had a dollar for every time I've been told exercising would fix my health, I'd be a millionaire Click To Tweet
When you have Fibromyalgia you get a lot of unsolicited advice. Doctors advise about sleep, eating, and exercising even though they don't always know what living with fibromyalgia is like
Three woman sit at a picnic table with open books. Above: what life is really like with fibromyalgia

3- Make adjustments at work

It’s not that people with Fibromyalgia don’t want to make suggestions at work, it’s their employers who aren’t willing. Society in general is not willing to cater to the chronically ill and disabled.  Thanks to virtual employment there are more options than there used to be,  but it’s still difficult to find a salaried job as a virtual employee. When an employee becomes chronically ill they are often unable to get their employers to adapt to their disabilities. This leads to loss of employment often with no recourse. There are very few protections out there for people with chronic illness. In most cases if you can’t physically keep up you either quit your job or get fired.

Society in general is not willing to cater to the chronically ill and disabled. Click To Tweet

4- Eat healthy food

This advice is too simplified. Of course it is incredibly important to eat healthy, but there is no diet that cures Fibromyalgia. People with Fibro can exist entirely on organic juice and kale, but they still won’t be cured.

5- Find ways to control pain by asking a  doctor

If only it were that easy. Many doctors are reluctant to hand out pain medication because they are afraid of getting in trouble. Especially doctors who treat many chronic pain patients because they have to worry about being investigated for handing out too many narcotics.  Also, many patients who ask for pain medicine are labeled drug seekers, and then it’s impossible to get help after you get that label. Just ask anyone whose ever tried to go the the ER because they were in pain, I can guarantee you DRUG SEEKER is forever labeled on their file.

Some propose alternative options such as physical therapy and massage, but they are not covered by health insurance and therefore are not affordable. Additionally, if alternatives worked no one would ever need pain medication. Pain treatment has existed in one form or another since the beginning. Clearly a time existed when we saw a need for pain treatment, even if we’re ignoring that now.

Make alternatives to pain killers affordable and then we can talk about how they're actual options for controlling pain. Click To Tweet

 6- Get support from your friends and family

This isn’t bad advice in itself because of course support from friends and family is important. Unfortunately  many people can’t handle being friends with someone who is chronically ill or disabled. People who are sick are not considered fun, they are considered to be draining and depressing. Additionally many people are in situations where their family and friends think they are faking since Fibromyalgia is not a easily identified disease.

My point with all this is that life is not as easy as these articles try to make it, and when people write simplistic articles like this one it only hurts Fibromyalgia patients. I’d appreciate an article about real concrete ways to live a better life with chronic illness. If a news organization can’t write that article then they shouldn’t write anything at all.

There is no diet that cures Fibromyalgia. Anyone who tells you differently is selling something. What you can do is find foods that lessen your symptoms

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12 thoughts on “What life is really like living with Fibromyalgia

    1. Yes, I really wish more people understood how hard it is to sleep when you’re hurting.

    2. Try Puddles Pity Party on YouTube … I’m NOT joking. Puddles’ voice has helped distract me from some really terrible pain episodes.

      While on YouTube you can also search for WhispersRed ASMR

  1. I have heard all of these comments, too! I have fibromyalgia & Lyme. The worst is family who doesn’t believe you. I’ve had to cut them out of my life! Peaceful now!

    1. Yes I agree. When you exhaust what little energy you have trying to get people to understand. I’m just so sick of people thinking it’s not real. When sufferers say I’m exhausted – we mean it- it’s an exhaustion that you can’t possibly understand unless you have fibromyalgia. I’ve lost so many friends and family. It’s sad.

  2. so sorry for everyone who is suffering at this moment , I too am in constant pain from the moment I get up and before, I feel like I will never be out of pain again in this life but I know God still loves me and even if I am not healed I am still loved even when I am advised to do everything from daily enemas! to living on veggie smoothies and doing hot yoga because after all ” we can choose to do the right things and stay healthy or don’t do the good stuff and stay or become sick ” yes guys ………………………I can hear you raving from here and no wonder , but I was good and just listened politely and smiled …………. treasure chest in heaven for me I Think because I didn’t biff it one , but anyway …………………be kind to yourselves out there, be careful, stay loving and as positive as possible because as the movie says “we are not alone “

  3. cured

    Aiden Lucas
    I was diagnosed with fibromyalgia for 3 years, and it was very painful some days. I was taken methocarbamol to relieve the pain. Sometimes it helps and other days it doesn’t. it was killing me for 3 years, doctor said there was no cure. So I tried to live with it and it wasn’t easy.My childhood friend introduced me to Dr George (Good health herbs home),Dr George fibromyalgia herbal remedy cured me within 6 weeks of usage ,am fibromyalgia free now 100%

    1. Yeah right

      You and Dr George can go kiss it …

      (sorry for anyone reading this who thinks I am being mean. I am in pain right now!)

  4. Well MR. SWIFT– I would say PFFTTT to your reply. You obviously know nothing about FIBROMYALGIA – because there is NO CURE.!!! I find it sickening that you CLAIM this and some people will fall for it because we ALL are desperate for relief from this pain!!! Please just stop!!! You don’t have FIBROMYALGIA NOW BECAUSE YOU NEVER DID.!!! Shame on you!!!

    1. You tell ‘me Sis!

      Reminds me of those God Awful commercials on tv … the one where she takes a magic pill and all of a sudden she can climb Mt Everest. (Ok, I made that part up, but you know what I am talking about) I tried that pill – didn’t work.

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