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Feien

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DX FIBRO
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04/2016
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CA
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I expected it, so I wasn't exactly shocked, but my doctor officially diagnosed me with fibromyalgia today.
Part of me is so relieved because I finally have an answer... I've been struggling for so long, and I just thought I was too sensitive, too out of shape, too lazy, etc. When really, the fatigue and pain had a cause... I also have mental health issues that make it very hard for me to function day to day. I get by, I work about 30 hours a week, that is my max. I can't work any less if I wanna be able to pay my bills. With that, I barely manage to clean up my home a bit (it's horribly messy right now) and I eat mostly junk food or pre-made meals because I don't have the energy to cook more than about once or twice a week.
Now I know being diagnosed doesn't really change anything, it doesn't make it easier, but at least it has a name now...

My doctor asked me to try to focus on sleeping and managing my anxiety before we start thinking about medication, because I'm already on a few psychiatric meds and she doesn't want to mess things up if we can avoid it for now. It's easier said than done though... My sleep schedule has been wild lately, varying between 2 and 14 hours of sleep per night. I am exhausted all the time. And my anxiety is way out of control. I'd appreciate any advice you may have to help with that...

Do you ever have periods of self doubt? Like on good days, when pain level is low... do you ever doubt yourself and wonder if you're faking it or exaggerating how much pain you were in during the last flare up? I do that a lot. I feel like this is going to be what I'll struggle with the most.
I was diagnosed with dysthymia, BPD and generalized anxiety disorder years ago and despite how obvious and disabling my symptoms can be, there are always times when I doubt myself and it's really tough...
 

DK_engineer

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579
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Yes, I have feelings like that. When my symptoms are bad my anxiety gets bad too. Sometimes the anxiety is worse than the pain. If I am not careful the anxiety can distort my thoughts which leads to more anxiety. And then more anxiety stresses me out, which makes the fibromyalgia worse, etc. etc. It can quickly become a downward spiral.

When I get like that I have to just focus on climbing back out of the spiral. I learned as much as I could about fibromyalgia so I could figure out what helps me. Swimming is very soothing to me, so I do it as much as I can. Walking is good too.

One of the many wierd things about pain is that when I feel it, it is hard to remember the low pain times and when it's gone it's hard to remember what it felt like. I keep a journal most days. Sometimes I'm better about it than others. It has helped me realize the middle of the day is a "good" time when the pain is low. That doesn't mean I'm not hurting bad in the morning and evening though.

I also had to change the way I thought about pain. I had to stop thinking of pain as a signal something is wrong. Instead I think of it like a fire alarm that keeps going off for no reason. Really annoying, but not necessarily a disaster.

Lot of other people on here also have anxiety and can offer some good comfort and advice. You are definitely not alone!
 
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diamond

Legendary member
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Sep 18, 2015
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01/2008
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anywhere
Yes since I got fibro i have suffered badly with anxiety although to be fair to all of us coping with random pain that's severe and changes your life at best and for some puts you in bed or on the sofa for months it's not really surprising.

We are all conditioned to think being anxious is being weak but for most people anxiety will be a response to having been put under tooo much pressure or uncertainty or in a situation that threatens your sense of well being or sense of self......we can't control where that threshold lies that pushes us into overload we can only try our best to stay as calm as possible using whatever tools we have.

Once your physical health is threatened you have lost one of the biggest coping tools a human being has ....a feeling of being safe and able to cope with what life throws at you...being able to provide for your self...and achieve the things you want.

I also agree that when the pain subsides and you are doing things you think' was it really that bad before'?...'how can it change that much'??

It's the same with the weakness where i can barely stand up long enough to brush my teeth and fall exhausted back into bed.

That used to go away for long periods and i wouldn't be able to remember how the former felt and would think 'oh maybe i could have pushed myself harder '...then it comes back and you think oh noooo it really is that bad and i really can't do anything.

Sorry to ramble but i hadn't thought about this stuff that goes on in our heads until you mentioned it.

Please don't beat your self up you have enough to deal with...i am sure you are not exaggerating...none of us are.
 

oportosanto

Distinguished member
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Mar 16, 2016
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Relative
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FL
I think it's just normal that we are out of ourselves in this situation, at the same time we need to keep our head straight in order to understand what to do next.
 

Feien

Member
Joined
Apr 4, 2016
Messages
11
Reason
DX FIBRO
Diagnosis
04/2016
Country
CA
State
Qc
Thank you for your replies!
It helps to know I'm not alone living with this. I'm going to keep researching as much as I can about fibro and try to see if changes in my diet help at all. I'm also going to focus on sleeping and trying not to exert myself... that is hard to do with my job though.

I read keeping a journal could help? I'll try to do that. FIgure out what helps and what makes it worse.
 

remnant

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Mar 11, 2016
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KYA
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Ok Feien, congratulations, I can see that you take things in your stride and at least your fibromyalgia is manageable. A fluctuation of between 2-14 hours of sleep is not normal. I think it has to do with your biological rhythm. You can adjust it effortlessly by sleeping at a particular time daily and trying to do so with waking up. Alternative sleep meds like melatonin would help here as well as a cup of hot water before going to sleep after a hot bath. I've found that walking is one of the best medical interventions you can administer to yourself with regard to pain management and alleviation of depression. Best regards.
 
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