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infinitymechanism

781d

How do you manage your pain and other factors affecting your quality of life? I am really struggling right now.

Top reply
    • SJP

      777d

      @SJP I manage by playing games online with people I am friends/family with, taking time to rest regularly, breaking big tasks up into small bursts of energy, eating regularly (despite the pain of eating), going to therapy, using cannabis, and trying to get enough sleep.

    • SJP

      777d

      My QOL is terrible, and I'm not supposed to live to 50. POTS is comparable to COPD, and that's just one of my over 20 conditions (I got too tired adding them on here, so slowly adding the rest). It makes me feel lonely, hurt, crazy, frustrated, unable to function, and super isolated.

      • SJP

        777d

        @SJP I manage by playing games online with people I am friends/family with, taking time to rest regularly, breaking big tasks up into small bursts of energy, eating regularly (despite the pain of eating), going to therapy, using cannabis, and trying to get enough sleep.

    • Sunshine10

      779d

      I’m interested in hearing what other people’s pain feels like to them. I get a general aching and weakness. Almost like when you have a bad fever.

      • My.rn

        779d

        @Sunshine10 I have a constant sense of feeling blah x10. The aches are dull. I feel like I’m under constant physical pressure from the outside pushing in making my skin hurt; and pressure from the inside pushing out like my organs, blood vessels, bones and nerve endings are getting ready to burst or disintegrate. I’m exhausted. I complete one thing, then have to take a nap. Sometimes I don’t even finish the one thing. I just do parts and pieces for n between naps. Mentally I go from clarity, to foggy, to confused, to not knowing anything, to complete shut down where I’m in a dream like state.

        • Sunshine10

          779d

          @My.rn I can relate to a lot of that. I feel I don’t have the extreme pain some people talk about but you did a good job of explaining some of the things I feel too. The brain fog!!! I think I have enough of the same to fit the diagnosis even though it hasn’t been officially made. Thanks for sharing.

    • Tyle_r

      780d

      I lived with my pain for years before we knew what was happening, my dad always told me I was wining and didn’t know what real pain was. I guess it made me ignore the pain I was in, so now it’s just normal to do everyday things in pain without acknowledging it.

    • lovewbug

      780d

      I have had Fibromyalgia for a few years now. I think the biggest thing about this is understanding how it affects you because it will effect each person a bit differently. So example understanding what will set off a flare up for you was there a big conflict at work or home, do you do fine in school except big tests do they set off stress and flare up an episode, did you get enough sleep if you didn't is this what set off a flare up, was there a particular food you ate that set it off I think one of the biggest things is just understanding your triggers. The next biggest is controlling after this happens. Things that work for me I am on a medication to help control pain it's called savella, I had to try alot of different ones before I found one that works for me, I got on a medication to help because the pain was so bad it was actually causing uncontrollable muscle spasms. Now this medication helps most of the time I still have days that it feels like I haven't taken anything to help the pain and there is still alot that I have to do on my end. I know most of the things that cause flare ups for me and I avoid them as much as I can. Find and do calming relaxing things especially when you are having a flare up yoga, meditation, I used to have a fish I found it calming to watch the fish, I have specific gaming apps on my phone that I play like bubble popping games and sorting the different color balls into tubes just something that is not timed and is not going to require too much thinking something in a way mind less that I can do to focus my brain on something other then the pain and it's not going to cause additional stress, sometimes just breathing focusing on the breathing and counting to 10 focusing on each number and each breath, I have found that exercise even light exercise I still have pain. I still have days that no one can touch me, I have days that the pain is so bad that just normal breathing hurts. Some days are worse then others it's just managing and getting through one day at a right time.

    • PinkPeppercorn

      781d

      I wish I had more for you. But all I have is that I completely understand and feel the same way. It affects our relationships, careers, and all other facets of our daily lives, and it’s beyond frustrating. Knowing it’ll likely only get worse is heartbreaking. All we can do is hold out hope for more research into causes and cures, and hope that we will one day feel better again. We got this!💪 (Dm me if you want to chat)

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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