One of the hardest things for me about living with fibromyalgia is that the symptoms are more or less invisible to anyone but me, and hard for me to describe briefly or coherently. Maybe that I hurt everywhere, everyday. I wake up with a dull pain in virtually every muscle in my body and more acute pain in 3-6 places. These places will shift and intensify based on triggers throughout the day. Triggers are things like pressure against my body, repetitive motion, standing for too long, anything high-impact… It’s even hard to describe triggers as they are complicated. I doesn’t hurt very much to bend over and pick up one thing, but it hurts worse with each thing I bend over and pick up, until I can’t stand it anymore. There are times I reach that point and push through the pain because I have to do something, but I end up in tears on the floor. Sometimes its worth it. Sometimes it just isn’t. I also get headaches and facial pain very regularly. And no matter how much I sleep, I have a hard time feeling rested.
I am on drugs and they do make a significant difference. But it’s more of a taking the edge off than taking the pain away. Perhaps like the difference between being hit by a delivery van and being hit by an 18 wheeler, you are still hit by a truck either way. One of the things that is most difficult is that even though I have hurt everyday for years, I never get used to the pain.
Talking about it is strange. I don’t want to feel sorry for myself, and most of the time, I don’t. I do get frustrated sometimes, but not everyday or every week. I have a pretty rich life. There are days that I want to stay in the fetal position and try not to cause myself any more pain than I feel at the moment I wake up, but I am just adventurous and extroverted enough to know that I can’t live like that for long.
for what it’s worth, we know just what you mean. or at least Michelle does first-hand and myself second-. thanks for being willing to expose your pain…I know it’s not easy.
not sure how to put this, since everyone seems to have an opinion, and there seems to be 1001 ideas on how to deal with this horrible condition. it seems like we’ve tried most of them (running up our credit cards in the process). but thankfully we found one that does better than just dull the pain. after 5 years the difference is huge. I wont push it on you of course, but if you’re ever interested in learning more please let us know. the short version: it’s not easy, not mainstream, but it’s cheap and there’s a ton of help out there.
I’m so with you in the struggle to communicate what the pain is like and why I can do one thing today, but I might not be able to do that same the next day. I can remember shuffling into school to teach, having to teach sitting down because my pain was too great. Hard to keep any kind of authority sitting down I quickly figured out. I’m sorry you have to deal with this disease as well, its aweful.
But what Bob said is true. I’m basically better. I think I could teach again if I wanted to or have another job and be able to do it. I no longer shuffle, but actually exercise regularly for the first time in my life. Exercise before was always too painful. These last 5 years have been quite a journey, but I would easily say I’m 80% better, and that’s a percentage I can live with! I’m no longer an ill person, but a normal person who deals with pain sometimes. I know what I do has helped a lot of people, so like Bob said, if you’re interested let me know. And also its not easy, but its given me my life back!
Hi Kristen,
I didn’t know you were suffering with this condition. I’m so sorry.
I hate pain and am a big baby, so I seriously feel for you.
You bear it so bravely, Kristen.
Very inspiring.
Kristen,
I am so sorry you feel so bad so often…and I am so sorry I haven’t been a better friend through it all…and so sorry that we haven’t gotten together this summer…and so sorry that school starts back for me on Monday.
But, I will pray for you and hope we can visit soon!
Love,
Lori
Hey Kristen, I’m sorry you have to deal with this wretched, sucky chronic illness. I can only imagine how frustrating it must be. I’ll pray that the aches and pains will ease up and that you’ll be functioning at a higher level very soon.
I have a friend w/fm who says she is 90% better. I don’t know if it’s the same treatment your friends were referring to above, but it’s also not mainstream (my friend is from CGS). If you’d like her email address, let me know!
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Kristen, I’m praying for you all the time and I keep hoping you will be able to find some kind of relief or permanent healing from this illness.
Have you read this book? I was talking to a good friend about you and she strongly recommended this book for you.
http://www.amazon.com/Celiac-Disease-Peter-H-r-Green/dp/006076693X/
I really appreciate your prayers and well wishes and suggestions. I am reading and researching lots of options.
Just new to your blog in the past couple of weeks and was diagnosed today with this. I was diagnosed with lupus (SLE) several years ago but that joint pain and this muscle pain are very different, though both lousy. You certainly describe it very well!