Punished for enjoying life

WinnieBlue

Member
Joined
Jul 1, 2020
Messages
10
Reason
DX FIBRO
Diagnosis
06/2020
Country
US
State
IN
Yesterday was the first beautiful day in Indiana. 72 degrees and sunny. My mom and I decided to take a spontaneous trip to the state park since its only 20 minutes away. I love nature. When i was a kid and teenager, before developing juvenile fibro at age 16, i was outside constantly. Visiting the park was a treat.

We planned on driving around. This past year has been miserable on me. I feel like ive been flaring for half a month each month so I am very out of shape. We decided to take the smallest trail, only half a mile. We must have taken a wrong turn and intersected with a larger trail. It was MUCH longer. It took us about a half hour but thats a long time for going up and down hills and climbing over logs and stone. I felt tired but not too bad. The rest of the day I started a major spring cleaning overhaul in my house because I felt so good!

I did some crafts and listened to some music before dozing off. I slept like an angel.

Yesterday was the best day I have had in a really long time, years even. I have been so depressed and stressed. Yesterday i felt so happy and free.

I woke up this morning with some stiff muscles. The bottom of my feet felt bruised. Ow! I still felt ok so I ran some errands then cleaned some more when i got home. I tool my daily nap, had dinner like usual then BAM. Suddenly i feel like Im hit by a freight train.

9pm comes around. Im usuallly not even tired until midnight but i feel like im in a daze and i cant keep my eyes open. My arms are too tired to even hold my phone while i type this. Im having severe anxiety. Im aching all over my back, shoulders and arms I start having hot flashes and my stomach starts turning. I feel like im coming down with the flu. Infact i start thinking, do I have the flu? But i think that EVERYTIME i have a flare.

Anyway, im kind of sad. The best day ive had in years makes me this miserable...but I know you can all relate.
 

Jemima

Member
Joined
Jul 30, 2020
Messages
22
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Everything that you described sounds so familiar, including that sadness, and I'm so sorry you're going through this. I read your other post here on the forum - what a battle you've had. My symptoms don't exactly match all of yours, but I can relate to having been mysteriously ill for a really long time, and then ultimately ramping into full-blown fibro symptoms a few years back. I know that there's no simple fix - and sometimes we just need to feel crappy for a while (which is totally OK) - but I'll share what's helped me a little. Take what feels useful, and ignore the rest!

Last year, I worked with this really wonderful psychotherapist. Whenever I had a flare, I was tumbling into anxiety and panic attacks - having a big stress response to the pain and frustration that I felt. He told me that I needed to practice "radical acceptance", learning to totally accept what I was experiencing. He taught me breathing and visualization exercises to rebalance those haywire stress-chemicals, but fundamentally said that I needed to learn to sit with those sensations when I was feeling awful - not pretending my symptoms were not there or obsessing over them, but accepting them, and allowing them to be present. I was sceptical as hell, but actually, practising this approach until it finally stuck helped me to curb the anxiety, and the vicious cycle that it tended to trigger.

After my fibro symptoms really kicked off, I lost all physical conditioning too. This made me crazy as I used to be a real adventure sports nut, always doing wild and fun stuff! Since my health went increasingly sideways, every time I tried to do something active it would set me into a flare leaving me incapacitated, and I was furious about it. Then, I started to do the most tiny, gentle volumes of exercise - the kind of thing I used to scoff at - like 10 minutes of calm walking or gentle swimming, a few times a week. I stopped trying to do too much, and gave myself permission to go at a snails pace. Over months, I realllly slowly built it up, and now I can confidently walk 45 mins each day without triggering a flare. I think the consistent movement has actually reduced my pain symptoms, but I had to crank it up infuriatingly slowly, so as not to set myself back to the start. Once again, radical acceptance was required for me to let go of being able to do big impactive stuff - not easy, but getting easier.

Finally, I'd just say that no matter how awful you feel today, your fibro cannot take that good day away from you. That wonderful day is yours to keep, and there will be more in the future. If you can, try to focus on knowing that those days are possible, and keep working towards a daily balance that takes you closer to having those days more of the time, and further away from those really angry flares. It's not going to be perfect (sometimes it will stink) but it will get to feel like less of a life sentence. I still feel nowhere near fine, and I'm still trying to better understand what's going on in this body of mine - but I do feel so much more in control, even if that means being OK with having to surrender to my limitations! I hope that makes sense.

Good luck ❤️
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,129
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Finally, I'd just say that no matter how awful you feel today, your fibro cannot take that good day away from you. That wonderful day is yours to keep, and there will be more in the future. If you can, try to focus on knowing that those days are possible, and keep working towards a daily balance that takes you closer to having those days more of the time, and further away from those really angry flares. It's not going to be perfect (sometimes it will stink) but it will get to feel like less of a life sentence. I still feel nowhere near fine, and I'm still trying to better understand what's going on in this body of mine - but I do feel so much more in control, even if that means being OK with having to surrender to my limitations! I hope that makes sense.
WinnieBlue, I understand your frustration ever so well.

And I think that the above advice from Jemima is excellent! I don't think I could have put it better myself.

I would only add one thing: try not to think of it as being punished. It's not punishment, it's just consequences, and sometimes consequences are not what we like. But you can have great days, and even if you know that you may pay for it later, having those good days is worth it, right?

All of us here understand what you are experiencing. We are here to listen and support and offer help when we can. Hang in there, and do your best not to let things get you down. You are not alone.
 

WinnieBlue

Member
Joined
Jul 1, 2020
Messages
10
Reason
DX FIBRO
Diagnosis
06/2020
Country
US
State
IN
Thank you for both of your support. Ive been in the process of accepting and living with the symptoms and its helping. My sister was just diagnosed too and when I was talking to her about it she said shes not accepting it and shes not going to live with it. I went through that phase and it made things worse then I learned that i have to love and accept myself and treat myself how I would a loved one who was sick. I wouldnt push them, blame them or tell them to ignore it. I realized accepting it allowed me to care for myself and to love myself. It also decreased thr anxiety a lot and I wasnt so scared and surprised all the time by the symptoms.
 

MommaSJones

New member
Joined
Apr 2, 2021
Messages
3
Reason
DX FIBRO
Diagnosis
06/2019
Country
US
State
OH
Awwww! It seems you've taken a page straight from the book of my life! I'm curious, how did you manage to get a diagnosis at such a young age?

I didnt recieved mine until a couple years ago bit I've suffered all my life. Childhood was rough, had to have notes for my teachers from my drs because I'd fall asleep in class.. drs just said I suffered from severe fatigue and needed to stay hydrated and be given a snack... that advice never actually helped...lol! Not to mention the many days of missing school from pain and flu like symptoms... my mom would have to appear before the truancy board on several occasions, luckily I was able to keep the grades up or else those hearing may not have gone in our favor!

Fast forward to getting my fibromyalgia diagnosis and life has been able to be better managed. I noticed that what I ate played a significant role in management. If I eat junk food or fast food I severley pay for it with pain or a flu like flair up... or both... usually both...lol yay...not!
Also if I dont do yoga morning and night i will severely pay for that too... kinda like the move it or lose it phrase...lol

What do you do to manage? Are you on any medications? Do you watch what foods you consume?
 

WinnieBlue

Member
Joined
Jul 1, 2020
Messages
10
Reason
DX FIBRO
Diagnosis
06/2020
Country
US
State
IN
I wasnt officially diagnosed until last year but Ive had bad symptoms since I was 14 and they escalated to the point of trapping me in bed when I was 17. I have IBS as well and when everything hit me the pain and sickness was so bad I lost a ton of weight and was bedridden for an entire winter. I got down to 96 lbs (im 5'7) and I was so weak I couldnt walk.

When i was a kid I had symptoms but noone thought much about it. I had asthma unrelated and my parents focused more on that. When I was born my lungs filled with fluid. My body wasnt naturally expelling things. I almost died but my mom demanded they relocate me to a childrens hospital that saved my life. I was on steroids through a breathinh machine for a year and a half. I had apnea as a baby and several times a night my breathing would stop. I was actually in a machine that had an alarm that sounded when I stopped breathing.

When i was in grade school i still had asthma and i had some symptoms such as heat and cold intolerance. I also had bad morning sickness and I would throw up on the bus. Needless to say I wasnt very popular.

Ive been seeing docs since i was 14 and ihave been through multiple tests over and over. They always said it was just anxiety and IBS. A couple years ago I started getting pre synscope when standing too long. I had to leave work becauce I could hardly sit or stand without crashing. I went back through another round of doctors. This time they started considering POTS. But they still wont confirm that. My internist evaluated me for Fibro. The pressure point test he did on me had me yelping in pain. That mixed with my symptoms and the fact that my mom, great grandma and sister have all been diagnosed he concluded that I had fibro.

The women in my familt have some sort of dysfunctiom in our nervous system. They say fibro is caused by central sensitization or an overreactive nervous system. Thats thr cause behind ours. Thats why I also have ibs, sleep apnea and heart arrhythmia, both my central and automatic nervous systems response inaccurately by either too much or too little.

I dont take medication because I always have severe side effects. I eat clean, no dyes, artificial flavors, preservatives or chemicals. I stay away from all chemicals in cleaning and my beauty hygiene care. I wont even let harsh chemicals in my arts and crafts. They make me very sick. My self care is still in the works!
 

MommaSJones

New member
Joined
Apr 2, 2021
Messages
3
Reason
DX FIBRO
Diagnosis
06/2019
Country
US
State
OH
Wow! I was diagnosed with vasil vagal syncope at the age of 15 ...and I also have gastro issues and heart arrhythmia... I've actually already suffered from 3 minor heart attacks and was on nitrates for that pre kid... they only found that I had suffered from the heart attacks from some testing they did for my syncope and they found the scarring.

I am the same with chemicals... even some clothing bothers my skin. And since I found the aqueous ozone laundry system I can finally wear my clothes without breaking out in hives! That system is detergent free if you're unfamiliar I highly recommend checking it out.

I had horrible issues with my periods aswell... dehibilitating and very heavy flows... I was so thankful to have had my hysterectomy! Although I still have my ovaries... I still have some fibro pain with them when it would have been my time of the month.. but nothing like it was before.

I am so intrigued by our similarities!
 

WinnieBlue

Member
Joined
Jul 1, 2020
Messages
10
Reason
DX FIBRO
Diagnosis
06/2020
Country
US
State
IN
Hormones are a killer 😢. My ovulation time I am usually sicker than a dog. I can hardly leave the house. My PMS isnt too bad besides I get migraines. I use to have heavy flow and sometimes Id skip periods. I even had a year where my periods were every 60-75 days. That was the worst year of my life. Now my periods are normal and very consistent which I am so grateful for. I dont mind having periods as long as they healthy and normal.

We do have a lot of similiarities! Sometimes I wish I could just be normal and have a normal life. Im 29 and Im single, unemployed and live with my parents because of my health. It feels like a trap. Im still learning how not to be ashamed of myself, especially in terms of dating. I feel like men want a healthy woman who can keep up with them and isnt an unpredictable burden but the longer I live with the diagnosis the more I learn to be at peace and adjust my life around it.
 

djhsix

Member
Joined
Dec 11, 2020
Messages
27
Reason
DX FIBRO
Diagnosis
12/2020
Country
US
State
WA
Im still learning how not to be ashamed of myself, especially in terms of dating. I feel like men want a healthy woman who can keep up with them and isnt an unpredictable burden but the longer I live with the diagnosis the more I learn to be at peace and adjust my life around it.
I'm struggling with dating as well. I haven't decided if I should be upfront with my diagnosis when I first meet someone or wait until I get to know them.
 

WinnieBlue

Member
Joined
Jul 1, 2020
Messages
10
Reason
DX FIBRO
Diagnosis
06/2020
Country
US
State
IN
Thats what I struggle with. I was raised in a house where we kept our problems to ourselves and we never "overshare" but me personally, I wear my heart on my sleeves and Im relatively transparent. I think I would wait for it to come up naturally but it isnt something I would make a point of telling them right away. The thing is, having fibro effects dating so much. Canceling last minute, going home unexpectedly, being careful of where and what we eat, the inability to do active dates such as long hikes or being on our feet for hours. I feel like it has to come up soon but I dont want someone to know my illness before they know me so they just see that as my identity. Idk! Maybe something we just have to take a day at a time.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,129
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
I'm struggling with dating as well. I haven't decided if I should be upfront with my diagnosis when I first meet someone or wait until I get to know them.
That is something on which you have to follow your heart. The right answer is different for different people.

I can tell you my experience, though.
I am a very upfront, direct, and honest person. I don't beat around the bush so to me it's important to lay everything out from the start. I tell someone right away, and I also tell them that it means that at times we may have plans and if I wake up in a bad flare I will have to cancel them if they involve activity. I say, -- This is up to you, so think it over if you like. If you don't think you can work with that, you should walk away, and I won't have a single hard feeling. Being with someone who has chronic pain is not for everyone.

Sometimes a person will walk away. So better you know that sooner rather than later.

But I will also say that sometimes a person will tell you they are fine with that and then later it turns out they aren't. If that person starts giving you a hard time about it or gets mad or accusatory or doesn't believe you when you have to change plans, or whatever you have to do because of FM, then I advise getting out of the relationship immediately because this won't get better. Experience speaking, here.

It's not necessarily because they are a bad person. (Although it sometimes is). Sometimes a person thinks they can handle a thing and then learn they can't.
But overall, I think it's better to tell people right away, and let them ask questions, so that you are not stuck explaining the first time they see you in a flare and you don't really have the energy to talk about it then. Just my input and opinion.
 

Sabina

New member
Joined
Aug 6, 2020
Messages
9
Reason
DX FIBRO
Diagnosis
09/2010
Country
US
State
IL
What has really worked for me is learning how to pace myself each day. I rest in between tasks even if I’m not tired. This is key. I also set a limit on my Fitbit for me daily steps & it notifies me when I get to my limit. This way I don’t overdo it.
It’s all about managing & working with fibromyalgia. I hope this helps 🙂
 
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