"What does Fibromyalgia Feel Like?
I will start by saying that the truth is that every patient with Fibromyalgia is different. No two of us experience the exact same symptoms, levels of pain, levels of fatigue, or physical challenges in the same way. There are some symptoms and challenges that many of us have in common, and in the next few minutes I’m going to share with you a very common set of symptoms and experiences faced by a great number of PWF’s (Person With Fibromyalgia) on a daily basis. It is important to remember that EVERY PWF is different! Therefore if you want to love and support your PWF to the very best of your ability, you have to have the courage to sit down with them and ASK them what it’s like for them personally. Make sure to have a pen or pencil and some paper handy while they’re talking to you because taking notes about what they say will come in handy later.
There are going to be days and times when your PWF will have to cancel plans, rearrange schedules, or lean on you for support more than usual. There ARE going to be times when the symptoms and challenges of Fibromyalgia will be inconvenient, a pain in the rear, upsetting to both of you, and very frustrating. At those times, I want to encourage you to take out your piece of paper and read it again. Read it slowly and imagine you are the one with the symptoms and challenges written down there. Think about how would you like others to react to you if you were in those very same circumstances. What type of understanding and help would you want to receive if it was you instead of your PWF?
You have to think about it ahead of time, and resolve to yourself that you will take action to do your very best to “go with the flow” and work around it all. If you don’t make that choice, the stress, disappointment, resentment, and frustration will build up inside you and most likely inside your PWF as well.
Keep in mind that the more unresolved conflict and stress your PWF has, the higher the chances there will be for a full blown flare up in pain and fatigue to happen to them. What that means to you is this; more stalled or rearranged plans, more interruptions, and more let downs for both of you. If you both resolve to “go with the flow” then you will have a higher chance for success in being able to manage and overcome the physical symptoms and challenges your PWF has and be able to enjoy more quantity AND quality time together doing the things you both enjoy.
Okay, with that said, here is a very common set of circumstances, symptoms, and challenges that many PWF’s experience every day.
Most of us living with Fibromyalgia experience this:
Imagine having a really bad case of the flu, but the only symptoms you have are extremely bad body aches and pains, hot flashes and cold chills and nausea. Imagine that you have a fever but you can’t feel it on your skin. It’s INSIDE your muscles and bones but your skin feels cool to the touch.
Now imagine that you just had a strenuous work out the day before and your muscles are really sore. Or better yet imagine a bad bruise you’ve had before and how it hurt to even touch it a little bit. Now imagine those types of bruises all over your body.
Imagine that you didn’t get a lot of sleep the night before or that you have been up for 48 hours straight. Imagine you are having a really hard time concentrating and you find yourself daydreaming and being really forgetful. You are soooo tired, you can’t make sense of things sometimes, you can’t keep your eyes open, you feel dizzy and strange, and all you want to do is lie down and sleep for as long as you can. Imagine you get the opportunity to take that nap that you’ve been craving to take all day long and when you lay down all of a sudden you can’t get to sleep to save your life. You can’t figure out why, because your body and brain feel like they’re going to drop at any moment. Why wouldn’t you be able to sleep??? You get frustrated and angry because all you want to do is drift off and rest.
Okay, now imagine that for some reason, you just can’t hold onto objects very well and you seem to be dropping a lot of things for no reason that you can determine. Imagine a time when you were really nervous and your legs and arms felt like spaghetti. You trip over things and can’t seem to feel sure of your footing.
Now…add all of those together and you get what most PWF’s feel 24 hours and day, 7 days a week.
And guess what else? Those are just SOME of the symptoms we live with. Some of us also experience sexual challenges, irritable bowel syndrome, migraine or stress headaches, blurred vision, weight gain, and much more.
Imagine trying to tell someone how you were feeling, trying to describe it, but you look completely normal. They can’t see any “evidence” of your pain, no bruises, no breaks, no virus, no anything. They give you “that look”. The one that says “you’re just making this up to get attention or because you’re lazy”. Now imagine it’s a doctor you’re desperately coming to for help to alleviate your pain and fatigue and it’s THEM giving you that look. Yeah…it’s NO fun.
It’s humiliating, it’s embarrassing and frustrating. Ultimately once we PWF’s get past those emotions of rejection (IF we get past them), then more often than not, we turn to anger, bitterness, and or resentment at not being trusted or believed. We retreat into ourselves and guard ourselves from the emotional pain of not being believed. We begin to endure our situation with this pain and fatigue in silence and personal isolation. We become distrusting and depressed. The only other people who seem to have any understanding or compassion at all are others living with Fibromyalgia and/or Allodynia or any other type of illness that is chronic.
If you don’t become an advocate and a supporter for your PWF, you could very well contribute the above emotions and reactions I just mentioned. If you love your PWF at all, don’t be one of “those people” in their lives. Believe them, believe them, and believe them. Don’t condemn them to a life of isolation and rejection on top of the horrible pain and fatigue they are enduring as well. It is hard enough to fight for their quality of life, but having to go it alone is a cruel and unjust life sentence that you could save them from.
You see how important you really are? VERY important.
Now I want you to imagine having all of those symptoms of pain and severe fatigue piled up on you, and you have to get up to go to work, or you have to take care of your kids or do housework, or repairs in your home. Imagine having an important date or vacation scheduled with your friend or loved one(s). One you’ve been looking forward to for a while and you already have reservations and some money invested in it. You have to be there.
The truth is, you just want to lay there in your agony. You have no energy, no willpower, and no motivation to do ANYTHING. It doesn’t matter if you lay down, sit, or stand, nothing helps. Even getting out of bed to go to the restroom seems like a monumental task. You don’t want to tell anyone because it seems too “lazy” and unbelievable. After all, you were fine just yesterday and you were able to function pretty well. Who is going to believe you? Why all of a sudden is this pain and fatigue piled up on you like this? What proof do you have?
And… if you are a man, a single parent, elderly and living alone, or a teenager whose parents, teachers, or friends don’t understand what’s happening; the pressure to perform is even greater! The truth is, in most cases, many of us who are women have someone in our lives to help us, but these four specific categories of Fibromyalgia patients are susceptible to a great deal more strain and stress to endure their symptoms. Most often they feel the most helpless, isolated, and alone in their pain and fatigue.
We PWF’s miss out on a lot of activities and opportunities because of this “thing” we are living with. There is a true sense of grief and loss connected with Fibromyalgia. Some of us have even resorted to becoming suicidal because of desperation and longing for relief both physically and emotionally.
This is a very real, very serious truth that those of you who love and care for PWF’s MUST come to terms with. You have to ask yourself if you are willing to be a supporter of this person through good and bad, thick and thin. Are you willing to accept the challenge and be a hero in this person’s life?"
For more information and help there are several links on the right hand side of my blog that will at least get you started.
I wish you the very best today,