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Learning to live and respond with your new normal

Nov 10, 2015 7:35 AM

Hi all Hope your having a low pain moment or even a low pain day. My question today is this.... How long did take once u knew u had fibromayalgia that I began to respond to pain questions with your new normal.
For Example. Some ask u how do u feel today or do u feel better? My response is NO!! ..however what they mean is do u feel better now as apposed to the morning before your meds or after a nap..
For me I still always respond no I don't feel better because even if the pain is lower there is still pain. So do any of u ever respond yes u feel better using those guidelines?
Hopefully I made since with my question?
If not please let me know. I would love some input on this. Thanks all.

Nov 10, 2015 7:43 AM

It took me almost 2 years honestly. Everyone could look at me and just tell I was miserable. I just put a smile on now most days & just say I'm here so that's a blessing..or I say I'm doing good, (which is better than being in a wheelchair). I think of it sometimes as a blessing I'm going thru this and not cancer, or instead of a loved one...its not a blessing by no means but if it saves someone else whom I love going thru it, I'll keep it & keep fighting like a boss..;) gentle hugs

Nov 10, 2015 7:48 AM

Newfibrogirl, your question made plenty of sense. I always answer when someone asks if I'm better, no. I am in a range of 7-9/10 pain levels daily and on my medication and I can't get it to go any lower. I know people can't understand that these things aren't going to get better. I have degenerative joint and disc disease. Folks don't seem to understand that degenerative is just that and it is continuous. (Sometimes slow, then during a flare it Happens faster). There's not much we can do because it is what it is. Thanks for the interesting question. Sending {{{Hugs}}} 🌻🙏🏻

Nov 10, 2015 7:50 AM

Thanks trtbaker.. I understand totally.. I've only been diagnosed last week and its only been about 10 months that its had me incapacitated so I suppose I have a ways to go. But I too try and smile through my pain. Which gives a false impression that I'm in no pain.. Boy if they only knew. Lol

Nov 10, 2015 7:56 AM

Alwayz. For me that's one of the hardest parts for me. Trying to and continually having to explain to people what this is and how it works. As u know for me I have to deal with the fibromayalgia and the tumors in my abdomen so people are baffled by the fact I have two totally separate issues that are equally horrible. But yet I still get the same question.. How do u feel..lol I'm like duh...I feel like crap. Ha...

Nov 10, 2015 8:07 AM

I know, Hon. It's horribly frustrating. I have been diagnosed with over a dozen pain causing diseases and if one thing is not causing horrible pain then something else is. I can't stand it because people are always saying that I "look" great.. Ok, so what the hell does that mean? Is that suppose to mean that I can't possibly be in horrendous pain?? Sadly, because our pain never goes away, we have to "get used to it" for lack of a better term. Well, we get up, get dressed and put on our best face and head out to function like everyone else only to be told how good we look and that we "must be feeling better". Uh.. No idiot.. I just don't walk around in public with a permanent scowl on my face or tears in my eyes. Ugh... People can be so frustrating at times. Oh well.💕

Nov 10, 2015 8:12 AM

New, I get that same question asked of me almost daily. My answer is almost always the same, "No, but I'm hanging in there." My issue is degenerative as well, and sadly there is no fixing it. I also hate being told that I look great. I have to force a smile on my face just to go out in public most days. It frustrates the hell out of me.

Nov 10, 2015 8:36 AM

Depending on the person (teacher or classmate vs close friend) they hear "I'm okay" "I'm fine" or, "I'm sleepy/alive/pretty awful"

My new normal keeps changing, but I used to say "it hurts" back when it was an everyday 8-10 (I know ten is worst pain ever, I've never had anything worse than full body crps though) so now that I'm mostly down to 3-6 I'm okay. Surviving, even on days like yesterday where I feel pretty bad from my period, a 7 or 8.

Also, my emotions are more obvious than they used to be, but people don't always start a conversaron with "why are you so sad?"

My grandma (mom's side) always checks in on me, how are you feeling, are you alive? I get kind of sick of it sometimes, but at least I know she cares...

Nov 10, 2015 6:54 PM

I sometimes answer, "I've had better/worse days, but I'll survive." My psychologist asked me what goals I have and I honestly answered, "to get through each day one at a time. I don't make goals anymore." 🙏🌼

Nov 10, 2015 6:57 PM

Flappys.. I know what u mean. I don't dream anymore I don't plan anymore and I have to say that worries and bothers me.I use to live to plan and I loved order and to think of things I wanted to do. But now I can't seem to see nor even look past what I'm doing right now. I really want to find a way to get my hopes back.

Nov 10, 2015 7:59 PM

I totally understand! I was completely organized in every aspect of my life. Who is this disorganized stranger in my body, and where did me go to? Lol 🙏🌼

Nov 10, 2015 8:05 PM

They might say we are faking sick, but I fake being well, I can be good for me in the morning and can barely walk by evening. I am better in summer then in winter, I am always in pain so if the ask how are you I say high pain day, or the same or ok depending on how much I want to talk about it. The hard one is at the check out in the grocery store. One day this nice woman asked me how I was and I just started crying. She huge me and bought me flowers. The day in the life.

Nov 15, 2015 5:02 AM

I'm glad u posed this question. I'm asked that question every day by someone. But do I answer honestly and appear that I'm complaining or making excuses for not getting anything done in my day or that I'm a "debbie downer". Do they really want to know how I feel or are they asking so that I know they care about me. My husband will ask me at least once or twice a day how I'm doing. Sometimes I elaborate the truth and other days I don't want him to worry and try to find something positive to say about what's going on.
I honestly think that if anyone really knew the amount of pain and anguish I am in or the things that run through my head every minute of every day it would scare them.

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