Feel like my whole body is different

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DK_engineer

Very helpful member
Joined
Jun 20, 2015
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579
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
OR
Hi I was recently diagnosed with fibromyalgia a few weeks ago. Fibromyalgia hit me kind of suddenly; I had been feeling tired and achy for several months but was basically functional. I was driven to go see the doctor when - in the space of a few days - every joint on both sides from my elbows through my knuckles was so painful that I was unable to drive or type or even open doors. I'm doing better since then, but my body just hasn't gone back to what it was. I find I am unable to do things that I could do just a few months ago, such as playing indoor soccer. My reactions have changed - I now startle more easily and severely, and being startled makes me jittery for a while. I feel like I am having to learn how to live in my body all over again and the rules keep changing from moment to moment It's like evil puberty. Does anyone else feel this way? How do you adapt to it?
 
the same with me. in 2 weeks came fb to me. we have to learn now how to live a new live. need to be strong...........
 
Welcome .u no I feel like I say welcome nearly every day .
You will find u do need to learn to live different .u have to relearn a few things. Peace yourself that takes time. In fact that one of the harder things to do.
With fibro your first try to fight it. Then your try to reason with it , but in the end you will come to terms with it and learn to live at a diffrent speed.It knocks your for six and u will have many days where u wanna pull your hair out. That when this place comes into it own. Because u no there's always someone else going through or have been where u are now. So jump in and ask away .
 
Thank you both for your understanding and advice, Zikos & Forgetmenot. Pacing is tough to practice consistently - I am used to pushing myself (as most people are, I think).
 
HI to the new members. I love this place. It is the one place that I KNOW truly understands what I am going through. I was diagnosed in 2005 and I had to learn how to live Fb. It seems like slowly your body becomes weaker and weaker, you tire much easier. If I had the chance to re-do life when I was first diagnosed, I would have slowed way down! I think in the beginning we all still push ourselves because we don't believe that we can't do things any more. We cause our own misery and add to the problem. The most valuable advice is SLOW DOWN. You can no longer do what you could before, so slow down. It is really hard, I know, but you have to slow down now. You will make yourself sicker if you keep trying to push yourself.
 
how old r u dk?
 
zikos 7, I am 46 - I almost said 47, I don't keep track very well. After turning 21 my age hasn't seemed that important any more :)

Pythonplay3, thank you! This is exactly what I needed to hear at this moment (how did you know?).

I got signed up to host a 4th of July bbq. Our friends were very enthusiastic and kept wanting to invite more people. At the same there was a sudden huge hairy problem at work that was going to last right through the holiday. I started to flare. Something had to give. I told our friends I am very sorry but I cannot handle hosting all the extra people and explained why. Everyone was understanding and gracious except one couple who are really mad at me and threatening to end a 10 friendship. Even though they are not among the ones we had to uninvite.

This interpersonal stress is making the pain even worse. I keep bouncing between being angry, being sad and doubting myself. Thank you for reminding me that it really is important to slow down.
 
Friends who are real friends wouldn't care what you did or didn't do, if there's ppl go let them walk,you are not defined by these ppl.and your illness will in turn not be beilived by these kind of ppl.
I myself lost what I thought was my best friend in the world we had known each other for 25 years from shcool.ive not heard from her in ten now.
Yes it hurts but life moves on and you soon find out that the only ppl u really need is your family.if u have that your blessed in my opinion .xx
 
Thank you for your kind words, forgetmenot. And thank you for sharing about what happened to you, it does help me feel a little less I'm in the Twilight Zone. I am sorry you lost your friend, that is hard. You are absolutely right, I am very blessed by a supportive family and all the rest of my friends who are understanding. Thank you for reminding me of that :)
 
YES YES YESSS! I too get easily startled and my whole body kind of jolts with electric shock and then it takes a few moments to recover from that. The other day I was driving and I thought an adjacent car got too close and I literally jerked, my whole body. Before I would just take a quick breath or look in that direction quickly but now I get a wave of an electric shock from head to toe. It's very strange, so new, will take some time getting used to. I've been really enjoying reading your threads DK_engineer, your concerns and experience are deeply relatable, thank you so much for sharing!
 
Thank you danceswithfibro, I have really enjoyed reading your writing as well. Your letter to fibromyalgia was outstanding :)

Sometimes having fibromyalgia still feels surreal to me. All these sudden changes to how my body works - it doesn't seem like it should be possible.
 
IF you have your family, awsome!
 
listen to your body. do the things its telling you to do.
learn about your body.

btw BOOO, just a laugh to make you stop thinking about your pains.
keep posting folks!
 
like all the above you haven't lost anything you are learning new things to do and new ways

it may seem at first were loosing everything but were chasing the old world and not

exploring the new life exercise diet listen to your body and you will find lots you can

do drink distilled or filtered water home cooked meals not processed cut almost all caffeine smoking drinking

my worst cutting back on sugar its normal nothing special diet just throwing the crap out you

will feel a difference those store bought meals instead of from scratch that stuff its personal choices

of what your willing to change the more water the more toxins get flushed the better you feel

cmetryme encourages journals what you find helps everyone is different explore it its new and

you got lots of time just learn to not push yourself
 
I think you are right on the money with that advice. I joke that I am going to outlive everyone because I have to take such good care of myself, on pain of pain :)
 
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