Too scared to enjoy a good day?

Joined
May 18, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
LA
After three long months without having what I would consider to be a good day, yesterday I felt great! My pain levels were down, I actually felt like communicating with my co-workers instead of acting like a recluse in my office all day and even laughed, but it was always on my mind-what did I do yesterday to make me feel like this? Can I repeat it if I do everything exactly the same? What if I overdo it today and tomorrow is twice as bad as a normal day? I think it's sad to always have this illness on my mind. I really am going to try and enjoy the next good day I have, but I was wondering if everyone else feels like that. Do you have any tips to help not be so afraid or consumed with thoughts that you allow yourself to appreciate the good days when you have them?
 

femfatigued

Member
Joined
May 9, 2021
Messages
19
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
Congrats on having a good day! I rarely have a good day, but I have other conditions that contribute to that. I actually haven't been diagnosed with fibro yet. I think like you though. I am consumed with constant worry about whether I will get worse or will I ever get better. It's exhausting. The unknown is very scary. I hope you have many more great days!
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
How long have you had your symptom for? The dr in the hospital made me ashamed told me it was all in my head till years later when I told my g.p had lots of tests not m.s ones no ones give me those.what other health problems you got(if you don’t mind being asked) I have autoimmune thyroid too
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
I’ve had ba day or 2 where it’s gone completely and it makes me think it’s gone for good but it never does I found leaving gluten and coffee alone helps ,as for the stress I get down a lot, seems like no.one understands unless they got it
 
Joined
May 18, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
LA
THAT IS SO TRUE! No one understands and most think you exaggerate the symptoms. I've changed my whole diet to the 3S's-smoothies, salads, and supplements. I allow myself to have cheat days on the weekends but plan to remove gluten completely next. I lowered my stress as much as possible, but still have not found the motivation to exercise on a regular basis. Just hoping to start having more good days.
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
I hope you have lots more good days ,I just make the most of my ok days and do more,what part of Fibro do you find worse ,fatigue, pain or both?
 

Jemima

Active member
Joined
Jul 30, 2020
Messages
91
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
After three long months without having what I would consider to be a good day, yesterday I felt great! My pain levels were down, I actually felt like communicating with my co-workers instead of acting like a recluse in my office all day and even laughed, but it was always on my mind-what did I do yesterday to make me feel like this? Can I repeat it if I do everything exactly the same? What if I overdo it today and tomorrow is twice as bad as a normal day? I think it's sad to always have this illness on my mind. I really am going to try and enjoy the next good day I have, but I was wondering if everyone else feels like that. Do you have any tips to help not be so afraid or consumed with thoughts that you allow yourself to appreciate the good days when you have them?
Hi crystalrosepaul,

I totally relate, and feel for you so much on this. The mystery element when we can't figure out why we feel better or worse on certain days is really frustrating. That feeling of fear is something to watch out for, because it carries stress with it - a huge trigger in itself!

I was stuck in a vicious cycle of being afraid of my body, and having a really massive stress response whenever my symptoms either flared up, or did something I couldn't figure out, which in turn triggered my fibro. A therapist helped me make a massive breakthrough by introducing me to the idea of "radical acceptance". Emphasis on the radical!

He got me to sit with my pain, tuning into my body, and to try to accept that each feeling is just there, but that it can't hurt me. As awful as we might feel, that pain is just a sensation - it can't damage us in any way - and it will recede again. When we have a good day, we can try to just live in the moment, and enjoy it as much as we're able. The more we accept how we feel, the less likely we are to trigger ourselves more by dumping stress hormones into our systems.

Of course, trying to pace yourself physically when you feel better is wise, but once you begin to trust that a flare will always go down - and that triggering one is bound to happen sometimes - you can begin to let go of the tension that might be making it all even worse.

Since I grabbed hold of the idea of accepting my pain, it has actually been much more manageable, and flares have been much further apart. *I'll add the caveat however that over the same time period I've experimented to find supplements that seem to help, worked on stress management and sleep, and slowly built up a daily walking routine.

You'll come across sunkacola talking about radical acceptance here on the forum too - it's a powerful thought, so perhaps give it a try. I also wish you many more good days ahead!
 
Joined
May 18, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
LA
Auriel-For me it's probably more fatigue than pain. I've never been one to ask for help or say no to someone that needs my help, but I'm learning to slowly change as I listen to my body and put my health first. With the diet change and supplements, I think I have the horrid brain fog under control. What about you?
 
Joined
May 18, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
LA
Thanks, Jemima. I'll do some research on "radical acceptance." Hoping you all have more good days coming your way soon!
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Same, pain I can just about tolerate but fatigue takes all of my energy away I take gabapentin it helps a bit ,makes me sleepy tho.i was reading about a treatment they’ve been trying for c.f.s it’s usually used for narcolepsy.im gonna ask my doc about it
 
Joined
May 18, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
LA
I too, take gabapentin. I had back surgery two years ago and contracted MRSA and had to have another surgery to debride the tissue, then was on some serious IV antibiotics for about 6 months. (This is how my dr thinks the fibro started.) I also take Norco, but I don't think it helps. I've read that it can actually make your pain tolerance more sensitive. My next step is to remove those from my daily routine. Good luck with the CFS treatment.
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
What is norco? I’ve been given lyrica ametryptene they didn’t work, I’m gonna ask about xyrem (sodium oxybate) the new thing I read about for chronic fatigue oh my goodness contracting mess must have been horrendous!
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
I meant contracting mrsa ( my phone keeps changing my words it’s annoying!)
 
Joined
May 18, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
LA
Norco is hydrocodone (an opioid) used to treat pain. Yes, MRSA was quite an experience. I say now that I am my dog's therapy human because she was definitely my therapy dog while I was bedridden for months anchored to an IV pole.
 
Joined
May 18, 2021
Messages
17
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
LA
Xyrem looks interesting. Have you tried CBD or Delta 8? I don't know the marijuana laws where you live, but I recently discovered Delta 8 and am sleeping much better at night without the 30 - 60 minutes of fighting RLS first. Actually starting to get to that deep sleep where you dream vividly.
 
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