Myths About Fibromyalgia

 


Fibromyalgia is a long term chronic health condition. Sometimes referred to as Fibromyalgia Syndrome (FMS). The condition causes widespread pain all over the body amongst other symptoms. Other symptoms include:

  • Sleep problems
  • Fatigue (extreme tiredness)
  • Digestive issues (irritable bowel syndrome (IBS))
  • Cognitive processing issues (also known as brain fog or fibro fog) for example memory issues and poor concentration.
  • Pain sensitivity
  • Stiffness
  • Migraines/ headaches

 Diagnosing the condition is difficult as there is no specific test. People with fibromyalgia do not have all the same symptoms and all have a different experience which also makes diagnosis difficult. Blood tests are done to check for other conditions as there are many other conditions with similar symptoms to fibromyalgia so these need to be ruled out first. Physical checks are done for example to see if there are any swollen joints as this can indicate arthritis. Other examinations like x-rays or an MRI maybe done to check for conditions like multiple sclerosis (MS) and rheumatoid arthritis. Even though someone may get diagnosis with one of these other conditions, they may still also have fibromyalgia. There is a criteria that needs to be met to be diagnosed with fibromyalgia, the common criteria being:

  • Severe pain in 3-6 different areas of the body, and/or 7 different areas of milder pain.
  • The symptoms have stayed a similar level or increased in severity over at least 3 months.
  • There is no other cause for your symptoms.
Pain areas used be assessed by applying gentle pressure to tender areas to evaluate the extent of pain, but this is now less common.


Myth #1: "You're just tired"

Those of us with fibromyalgia will tell you, that no matter how much sleep we have, it does not "cure" us! Yes a night of good quality sleep may give us a better day, and our pain levels maybe reduced somewhat. Allowing us to do slightly more than other days, but this is not guaranteed. It is more to do with the increased pain sensitivity, when we are feeling less tired our pain receptors are not full alert. This does not mean we are not still in pain, but may mean we aren't in as much pain.


Myth #2: "My Aunt's, best friend's, Sister also has that and was cured by this pill. It will work for you too"

There is no magic cure for fibromyalgia, if a person you know has found something which suppresses their symptoms, that's awesome to hear for them. It does not mean it will work for everyone else.  There are medications which help us manage our symptoms and normally it can take a long time to find the cocktail that works for us as an individual. Then those medications also have a half life, meaning the need to increase dosage or change the mix. Normally they won't manage all symptoms, they will allow us to function each day more "normally" but they can also come with some nasty side affects.


Myth #3: "It's all in your head"

Yeah... no. it's really not! there have been studies done which show those with fibromyalgia have areas of the brain and body that "light up" on CT scans and MRIs etc showing pain. Plus for those who suffer from fibromyalgia the pain along with other symptoms is very real.


Myth #4: "It's nothing else so must be this" diagnosis

As mentioned above although difficult to diagnose, fibromyalgia has a set criteria for diagnosing. Yes, other conditions have to be ruled out but the reason for this is some of these other conditions can be life threatening and have very similar symptoms.


Myth #5: Fibromyalgia sufferers are stupid

Now if you're a close friend of someone with fibromyalgia you'll know there are times where we just can't process information or hold a standard conversation, We'll "zone out" or look like we're just not paying attention. You might have to tell us things multiple times, making sure if it's an appointment we write it down etc. And even after all that we still might not remember what you've told us or understood. We are not stupid though, as mentioned above one of the symptoms of fibromyalgia is brain fog/ fibro fog. Brain fog just makes your brain feel heavy and full of cotton wool (speaking from personal experience) it's like when a normal person has flu but worse,  we feel like we're walking around in a haze constantly trying to remember what we're meant to be doing, what we're meant to be saying etc. The times I'm in a conversation, and I've already lost the point of what I'm trying to say to respond half way through is uncountable. Believe me when I say, it frustrates us as much as it frustrates you!!!


Myth #6: "It's just stress or depression. If you stop stress/ be happy you won't be in pain anymore"

Wouldn't that be nice? to not be stressed at all? all day everyday. Or be happy all the time? and it also cure our pain and other symptoms? I mean WOW! can you just imagine that? Erm.... nope! Even if there was a way to not be stressed and to be happy all the time, we would still be in pain and have other symptoms. There is some truth in the statement, in that stress and mental state can make our symptoms worse. We are more susceptible to pain, especially when we are tense due to stress or unhappy for whatever reason, but on "good days" where we are less stressed, we're happy etc, we are still in pain but are more able to function and cope with pain levels. 


Myth #7: A change of diet will cure you

As of writing this there has been no study which shows a certain diet will reduce symptoms or cure fibromyalgia. There is some that show a reduction of caffeine, fast/ processed foods and red meat can help manage the condition especially digestive issues. And a healthy balanced diet may help with weight management when mobility is reduced.


Myth #8: Fibromyalgia sufferers are just lazy and flaky

We really aren't lazy or flaky. We want to work if we can't work, we want to work out, we want to do more with our kids, husband, family, friends. The list is endless, and we want to do it all!! But our bodies hold us back, we push ourselves through the pain and other symptoms, then we end up in bed for days, just about able to crawl to the loo. We send a text with a reason you most likely know is not true because we are too proud, too determined, too stubborn, to tell you the real reason that we are having to cancel. Because if we put that reason we are afraid you won't understand, or you'll try to encourage us out etc. When we know we just can't, we've probably had a few better days and caught up with all that normal life stuff, like housework, cooking, washing our hair, looking after the kids and actually being able to get on the floor to play with them and now we are feeling it. We're exhausted, fatigued beyond hope, no pain relief is touching it and we're waddling, just making a drink is feeling like we want to pass out and unfortunately that means we've had to let you down, again. And again we are sorry.


Myth #9: "If you just exercise, you'd feel better"

Yeah.. I'll get right on that! Between the fatigue, the pain, and the brain fog I just can't. I have tried, I used to go to the gym 3 times a week during a remission, then switched to walking more and even doing workouts at home. As the condition had progressed it gets harder, especially when a workout can put you in bed for a few days and then it becomes counter productive. I don't get stronger in my wrists, I've tried and am still trying with physio help. I do, do yoga when I can, I find it helps my mental health and stretching can loosen some areas. But that's just me, I know fibromyalgia suffers who are runners and they are still in pain, I've  known some who used to be very active weightlifting etc but due to the progression of their condition they had to stop. As I keep saying it affects everyone differently, and those who do exercise now might not be able to in future and those who can't exercise right now maybe able to in the future. This condition can fluctuate and come in waves of severity.


Myth #10: Being overweight has caused the fibromyalgia

If anything it's the other way round. Having fibromyalgia has caused us to gain weight, especially those of us whose mobility isn't what it used to be. Trying to lose weight with fibromyalgia can be difficult, we tend to lose weight slower than someone without it and this can then cause us to fall off the diet wagon. 


I have many other myths, which I will debunk at a later stage. Please subscribe to keep up to date with my latest posts.

Love Emiibo xx


Some information gained from https://www.nhs.uk/conditions/fibromyalgia/

Disclaimer: I am not medically qualified, all information in my blog is personal opinion and experiences and by no means is the same as getting medical advice from a professional.

Comments

  1. good information and I am not familiar with this. thanks for sharing

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  2. Some really good info here, not something I knew a lot about before so love that you're raising awareness!

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  3. Great work on these myths. All of them can be so upsetting for sufferers.

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