Saturday, April 11, 2009

What Does Fibromyalgia Feel Like?

An excerpt taken from my new book coming out soon - "It's Happening To You Too - Practical Help and Support For Those Who Care For Loved Ones Living With Fibromyalgia" - Copyright 2009 by Sherri Kohls

"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.

Here’s why:

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,


Anonymous said...

This was so helpful! Thank you so much for all the information. I believe I have been battling this for 5 years. I have every one of those things.I think I have been misdiagnosed. They said it was Lupus or undifferentiated connective tissue disorder. I don't like to hear that there is no treatment. Very disheartening. But, I am so glad to know I am not going crazy.

M. Scle said...

Make sleep a higher priority than other activities. Too often, we stay up late trying to get things done that we feel we should have accomplished that day. Remember that a good night's sleep will make you more productive tomorrow, whereas sacrificing sleep today could make you crash for several days. Treat your sleep time like it's the most important part of your schedule and don't put it off for other things.

Anonymous said...

This was really helpful. I am pretty sure that I have Fibromyalgia but my doctors think I'm crazy and it is all in my head. I'm only 20 and have so many problems, but I look completely normal. Can Fibromyalgia cause joint pain as well? That is the only symptom that I have that was not mentioned. Thank you for sharing this!

Anonymous said...

Fibromyalgia is a REAL condition!!!! Dr. JON RUSSEL, a researcher and advocate for FMS found that FMS patients consistently test higher on pain scale tests than a normal, healthy control group. FMS patients scored around 2-4 with the control group scoring around 6-9. Brain scans were also given during these pain tests and consistently the FMS patients had activity in parts of the brain and a rush of blood to these spots faster and more intense than the control group, making these tests accurate for a diagnosis. Now we NEED to spread the word of this discovery to physicians, the only trouble is that it's not as easy as it sounds.

Anonymous said...

hi, i have been battling life for almost 10 years and i am 37 nows and after many exploation surgeries amoung tests out my ying yang , i recently have been told i am a PWF and i was just doing some research and i found this,,, THANK YOU for your words . this really brought tears to my eyes because this is everything i have been and still am going threw trying to medicate and nothing seems to help.. but makes me sad all these years even doctors were giving me that look and questioning me .. so again just thank you....

Sherri said...

Dear Anonymous,
I want to thank you for writing. I know how frustrating this all can be when you're trying desperately to get someone to just BELIEVE you! Oh yes!

My friend you are not alone. So many of us have been through this painful and often humiliating ordeal. I keep looking for new diagnostic tools news within the medical community that will be a definative test for Fibro...but so far there is none that I know of. I keep waiting to see what they say though.

There ARE medical professionals out there who stand by us and KNOW we are telling the truth. They face ALOT of scrutiny by their peers (shame!) and it's just as frustrating for them.

Raising awareness and our voices is the key. If we won't stop, they HAVE to listen.

Anonymous said...

I just wish I would not have to be reminding my family constantly of how I feel, because they forget, they ask things of me that it is difficult to do and I have to remind them that I can't because if I simply say I can't they always ask, why? There are times that I just do it and in the mean time I want to burst into tears because nobody can understand why and I going through, and God forbid I have a good day and want to do something fun or something that I will not be able to do any time soon because of my condition and then I get the " don't complain later of your pains" I feel so alone sometimes, I also feel that maybe I exaggerate or that maybe I will be better off alone not bringing anybody down because of how I feel. I am not depressed and I will not allow myself to get depress, is just very sad and wanted to be able to share that.

Anonymous said...

My nammee is Susan. I've had fibromyalgia for 20 years, along with 3 kinnddss off arthritiss. I'mm havinng tremorrss nnoww andd am onn klonninopinnn to cionntroll bp and heart rate. My husband passeddd awaayy from klunnggg canncerr in /august. I take care of my Mother who hass allzheimmers and tryinngg to raissee annn 18 yrr okldd daughterr who needss MY support!! 24/7. I just wanna go to bed. I can't describeee thee pauinn I've enduredd for sopooo lliongg. Ialsoo havee insiomniaaa and have sleptt 2-4 hours a night since he passed. Add that to firbroo symptommms like fatigue, aching. It's raininggg andd coldd heree and I am minserrablyy inn paiinnn. Please pray for me

Sherri said...

Dear Susan,

Thank you for writing to me, and your courage to share what's going on in your world.

Susan,...I don't have any answers that will remove the heavy burdens you are facing. It would be cruel of me to offer some trivial saying like "it's all going to be okay". Because the truth're facing some huge obstacles and challenges that must seem SO overwhelming, especially when you are fighting Fibro on top of it all.

I CAN tell you this...that no matter how hard, and overwhelming and painful, and stressful things are, The Lord God sees you and is standing by waiting for you to call out to Him and then receive His answers and help. It may not come in the form you expect or in ways you hope for, but it WILL come. The extra strength, the extra courage, the extra help, the little bit of will to go on when you feel like all hope is lost…

I am honored to pray for you and definitely will. Tonight during my prayer time I will be lifting you up before The Lord’s throne and interceding on your behalf.

May His blessing and favor be upon you to hold you up and revive your spirit, your heart, your mind, and your soul. May His comfort rest within you and breathe life into you.

Psalm 56:8
Contemporary English Version (CEV)

8You have kept record of my days of wandering. You have stored my tears in your bottle and counted each of them.

Psalm 34:18
New International Version (NIV)

18 The LORD is close to the brokenhearted and saves those who are crushed in spirit.


Your friend,

Anonymous said...

Dear Sherri; I thank God for your wonderful and truthful writings. You hit the nail on the head. I haven't come across anything else on the interent quite like yours. You speak the absolute truth, because; who you are describing is also exactly "me", and I haven't been able to really explain "me" to my family or anyone else in my life. I shall share your writings with my family, and hopefully maybe then, they will have a better understanding.
I seriously need help from my family with our home. But no one is listening to me. There is too much expected of me that I can't fullfil. Causing me more flare-ups, and the feeling of just simply "giving-up". So' I Thank you so much for your site.

Sherri said...

Hi Darlene ((((HUG)))) It's very nice to meet you :) Thank you for sharing what you had to say. So many of us out there go through the same exact frustrations and lonliness. YOU ARE NOT ALONE.

I know right now that getting your family and others to believe you and work with you is incredibly HARD and you may think there's no way...but, although I can't promise you they'll listen, I don't want you to give up standing up for yourself and giving yourself a voice. They can't force you to do things unless you let them. If they are not respecting your limitations, you have to find a way to get them to see what it's like. Next time they're sick and fluish, remind them that you know EXACTLY how they feel and that's what your body feels like every day. Don't be mean or condescending about it, just gently use it as a way for them to relate to what you're going through.

Fibro is a monster that others can't see. That doesn't mean it's not real. You deserve a voice in your home and your life Darlene. If your family absolutely wont try to help or understand, then until you make some decisions, you have to find ways to help yourself. For instance getting a long handle reacher tool, a heating pad, or other things that make doing your activities easier and more manageable. If you're simply being stepped have to make some choices. ((((Hug))))

Definitely find a support group or online support group you can talk with and confide in to blow off steam. The guys over at are masters at it and they have eachother's backs. Women need the same.

I'm so glad you found POF and I will definitely be saying a special prayer over you today.