I assure you, it is real. The pain is real. The debilitating chronic exhaustion is real. The insomnia is real. So is every other symptom that makes it a dreaded illness to contend with.
What is also real is the ignorance that people show towards it and us – the sufferers. Here are some of the common myths that people have about fms.
Myth 1: It’s all in your mind.
Truth: Really? When people perpetuate these misconceptions they add to the stigma of fibromyalgia as a figment of our imagination. We are not hypochondriacs. 20 years from now when science and medicine expose more about this baffling condition, you’ll have to bite your tongue. Don’t be part of the problem, please.
Myth 2: You can cure yourself with…wait…don’t tell me, the acai berry! No wait! what was the latest quick fix being advertised online?
Truth: There is no such thing as a quick fix. Most sufferers will tell you they’ve tried any and everything, desperate for a solution, as well as spending years to and from specialist doctors, doing all manner of medical tests.
Myth 3: Some good ole exercise will fix yuh up!
Truth: This is one of those times when I have to once again go ‘really?’ I’m not saying exercise doesn’t help but the notion that some doctors and people have that regular exercise will sort our problems is wrong. Most sufferers, including myself, CANNOT manage proper exercise.
On a very good day, if I push myself I can manage 9 minutes of graded exercise with a break in between. Then I pay for it afterwards. Sometimes we can be in bed, sore and aching for says after exercise. Every sufferer is different of course. What I will say is routine stretching and physical movement (i.e. walking the dog or rushing to work) sometimes helps in decreasing the severity of muscle pains. It doesn’t in any way affect my debilitating exhaustion as the doctor promised.
Myth 4: It’s another excuse for laziness
Truth: Firstly, let me say shame to all those who beguile the social welfare system by abusing the invisibility of fibromyalgia and other chronic pain illnesses. Such actions are ignominious and hurt the REAL sufferers.
Secondly, to the sceptics, we are NOT lazy. Just because we look well it doesn’t mean we are not in pain or badly exhausted or dizzy or hurting from one of our myriad of symptoms. We mightlook normal but our bodies are functioning with defects and abnormalities in our central nervous system. Take it forgranted that the simplest of activities tire us immensely and can encourage flare ups. For me sometimes it is having a shower, combing my hair or walking up a flight of stairs. Many of us fix steely facades on and we brave the day. We take care of families, we force our bodies to work…because we have to. Our friends who cannot manage this and depend on social welfare, are no less courageous than we are. So judge us only if you can walk a mile in our shoes damn it.
Myth 5: You just need to lose weight
Truth: If I got one pence for everytime a fibromyalgia sufferer has complained about being told this, I’d be well on my way. Certainly, as with any condition, having a healthy weight contributes to the overall well being of the individual. But to suggest to any sufferer that their muscle pains and slew of other symptoms like migraines, irritable bowel syndrome, insomnia and exhaustion would be remedied solely by weight loss, well… it is ludicrous.
Myth 6: You can live a normal life like everyone else
Truth: I wouldn’t call it a normal life, whatever normal is anyway. We TRY to live but with great difficulty. TRYING to live with chronic pain and unbearable exhaustion, migraines, cognitive impairments etc makes it incredibly hard to focus on THE NOW. And what is living if one cannot live in the present? And enjoy the beauty of now? Have you tried to think clearly or creatively when you have a bad migraine or pain? Well multiply that and imagine having to live with it everyday. We contend with something like this and I cannot call this normal. Also, please note comparing other’s ailments to ours doesn’t reduce our suffering in any way. It serves no purpose.
What other myths have you heard or had to debunk? Tell us so we can clear it up for them.
When I was 37 wks pregnant with my first child I had horrendous pains in my chest because of my fibromyalgia. I had took the pain relief that I was allowed to take while pregnant but of course it didn’t work because the pain was out of control. My husband brought me to hospital. Of course they were very concerned about the baby so they hooked me up to the monitor. The patches were all put at the bottom of my stomach and the monitor started to wave up and down exactly like I was in full labour. The midwife naturally thought that I was in labour and ready to have the baby any minute despite me saying that it wasn’t the baby it was my fibromyalgia. (I’ve had those pains for so many yrs that I couldn’t mistake them for labour pains). Of course once I was checked properly by the midwife she realised that not only was I NOT in labour but the baby was no where near ready to be born. The doctor had to be called. As it turned out the muscle spasms were so severe in my chest that the patches at the bottom of my stomach had detected them. If the patches had been put on my chest the monitor needles would have been even wilder. So to all those who do not believe in fibromyalgia – there is proof and that monitor showed how severe my pain was. Needless to say the doctors and nurse’s could not believe what they were seeing because it was a first for them. When they realised I was in so much pain they gave me an injection to ease the pain but would not harm the baby. I was admitted to hospital for a week because the pain was so severe and they were concerned the baby would become distressed due to the amount of pain I was going through. Thankfully the pain did settle some what and I was allowed home. My daughter was born healthy 3 wks later. So I guess u could say that fibromyalgia pain isn’t much different from severe labour pains. Only difference is that someone with fibromyalgia has to suffer that pain everyday of their life and they don’t get the reward of a baby in their arms at the end. Nor does anyone tell a woman that went through labour that the pain was all in their head!
Wow Sabrina!! Thanks for sharing this! I’m in awe of what you just explained!!! I’m really lost for words and can only say this is an amazing example of the kind of pain we suffer daily. I’m happy your baby came into this world healthy. Hugs x
Thank u. And yes I always thought it was a good example and it proves that fibromyalgia does exist and how painful it truly is. I wish they would do that monitor on everyone so that the myth that the pain isn’t ‘that bad’ or that it ‘doesn’t exist’ was dispelled! Fibromyalgia is a terrible condition but we fight it everyday because we have to. I’ve always said it can take my body but I will never let it take my mind. I’m currently attending uni to do social work because I want to help people like us and reassure them that its not in their heads and give them all the help I can to make their life some what easier.
That’s very commendable of you Sabrina. It’s a long way to getting fibromyalgia recognised for what it is, but it is people like us who will have to fight for it. If we don’t, we will never be heard. Hugs x
AMEN SISTER PREACH IT!!! You NAILED it! I am so sorry for what you went through but your experience is SO validating to the rest of us. Thank you for sharing. I can only hope and pray that your experience will somehow find it’s way into future medical books. Blessings!
Thank you so much Scarlet. It is always a big encouragement to have the support of people like you. Thanks for stopping by, gentle hugs and blessings:) x
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When I was 37 wks pregnant with my first child I had horrendous pains in my chest because of my fibromyalgia. I had took the pain relief that I was allowed to take while pregnant but of course it didn’t work because the pain was out of control. My husband brought me to hospital. Of course they were very concerned about the baby so they hooked me up to the monitor. The patches were all put at the bottom of my stomach and the monitor started to wave up and down exactly like I was in full labour. The midwife naturally thought that I was in labour and ready to have the baby any minute despite me saying that it wasn’t the baby it was my fibromyalgia. (I’ve had those pains for so many yrs that I couldn’t mistake them for labour pains). Of course once I was checked properly by the midwife she realised that not only was I NOT in labour but the baby was no where near ready to be born. The doctor had to be called. As it turned out the muscle spasms were so severe in my chest that the patches at the bottom of my stomach had detected them. If the patches had been put on my chest the monitor needles would have been even wilder. So to all those who do not believe in fibromyalgia – there is proof and that monitor showed how severe my pain was. Needless to say the doctors and nurse’s could not believe what they were seeing because it was a first for them. When they realised I was in so much pain they gave me an injection to ease the pain but would not harm the baby. I was admitted to hospital for a week because the pain was so severe and they were concerned the baby would become distressed due to the amount of pain I was going through. Thankfully the pain did settle some what and I was allowed home. My daughter was born healthy 3 wks later. So I guess u could say that fibromyalgia pain isn’t much different from severe labour pains. Only difference is that someone with fibromyalgia has to suffer that pain everyday of their life and they don’t get the reward of a baby in their arms at the end. Nor does anyone tell a woman that went through labour that the pain was all in their head!
Wow Sabrina!! Thanks for sharing this! I’m in awe of what you just explained!!! I’m really lost for words and can only say this is an amazing example of the kind of pain we suffer daily. I’m happy your baby came into this world healthy. Hugs x
Thank u. And yes I always thought it was a good example and it proves that fibromyalgia does exist and how painful it truly is. I wish they would do that monitor on everyone so that the myth that the pain isn’t ‘that bad’ or that it ‘doesn’t exist’ was dispelled! Fibromyalgia is a terrible condition but we fight it everyday because we have to. I’ve always said it can take my body but I will never let it take my mind. I’m currently attending uni to do social work because I want to help people like us and reassure them that its not in their heads and give them all the help I can to make their life some what easier.
That’s very commendable of you Sabrina. It’s a long way to getting fibromyalgia recognised for what it is, but it is people like us who will have to fight for it. If we don’t, we will never be heard. Hugs x
AMEN SISTER PREACH IT!!! You NAILED it! I am so sorry for what you went through but your experience is SO validating to the rest of us. Thank you for sharing. I can only hope and pray that your experience will somehow find it’s way into future medical books. Blessings!
Thank you so much Scarlet. It is always a big encouragement to have the support of people like you. Thanks for stopping by, gentle hugs and blessings:) x