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Nov 21, 2019 8:44 PM

I sometimes wonder why I have to go through this, like why do I have to fight my parents on getting a doctors appointment?, why do I have to medicate myself constantly? Why was my childhood spent in pain or on crutches? But then I remember everyone has hardships that the people they know don’t know about. I know that ableist/ muggles will never understand the true issues that we face with chronic illnesses which is heartbreaking and frustrating. I remember that the girl on the left Is not who I am and when my illnesses pull me down it’s important to get right Back up and continue on with my life.No one told me when I was 7 crps would change my life. No one said it would cause breakdowns or pull me in different directions. I’ve climbed so many mountains and it still feels like no one understands or knows the pain I go through. I know most of you understand but it’s still hard because no one in my life has chronic illnesses that are similar to mine. I have so many unanswered questions about my health things I know that are not normal that are occurring. I feel like I’m in this never ending battle with my own body. I’m sure many of you can relate to this frustration with in me. I know you need to move to keep your mobility but it hurts so much to move And I’m not getting better I feel so weak and exhausted from pain.

I told my stepdad my mom dosent care because it dosent feel like she does sometimes I know that she does it’s just she waited 6 months and then I had to go to the hospital to get pain meds then they give me ketamine and send me home it hurts to move but they go to work and leave me here alone where I have to take care of the animals. No one understands people try to but most people don’t have to live at a pain level of a 7 everyday paired with neausa and ton of other symptoms that I don’t even mention because what’s the point? I always pretend I’m fine because I hate it when people feel bad for me but at the same time it’s frustrating seeing people not have to go through all the stuff I have to deal with

Nov 22, 2019 7:54 AM

Talia14, may I suggest blogging. WordPress has free platforms. Your writing voice it perfect. I blog as funnytailbones in their .com. you can write under a different 'name' and set up a separate email. A domain isnot needed. Any help u need to set the site up i can help u with. There reallyneeds to be a voice out there for CRPS at your age. As far as i know there is not on. And another change you might want to consider is to not refer to your pain a chronic, but intractable. Look up the difference, my nurse advocate said that I needed to use that word with doctor's instead of chronic since my pain is daily, every second and has been going on now for 5 years. Also, since there is no chance of it going away except for a miracle.

Nov 22, 2019 10:15 AM

Hi get this guys. I was being in pain all the time head ach more an stiff ness , also spasms more and not going out as much it was eh to me...
I ask my nurse on the Chart about fibromyalgia bc, my dad who passed away had it my niece had it . She says we will look in to it on your dr visit 5 dec. I maybe getting my answers . Hmmm
I was even hurt by some one touching me. Hmm that was drive me crazy... only ice pack warm to and messasge work for me ..
I thought about it last night and everything... I look it up online wow same symptoms I was have .... anyways I found ? Something out I’ll check dr the 5 .. I’ll let you guys know then... I thought this out myself even lol ... hug gently to all Shore bye 🌈🙏🙏❤️ I habe my therapy today emotional one I’ll even tell her ... gtg )))) 👋

Nov 22, 2019 11:28 PM

Weddinfshore200 it's good that you may have the possibility of a diagnosis. A lot of times we have to do our own research and be our own advocates. I too have Fibromyalgia so I know the discomfort of the disease although it can impact different people differently. My disease is coupled with PMR as well as many other diseases. Life is no picnic! You will be on my prayers.

Nov 23, 2019 12:13 AM

Hi ty it’s not for sure But it ? Something.. ty for your prayers I need it ..Bc I’m not sure 🤔 about it just yet if this is what it really is.. I am just frustrated at it for now is all .. huh gently night Shore 🌈🌈🙏🤗 can you tell me about your symptoms maybe that would help me more to figure it out . Dec 5 is my Dr visit ... I’ll let you know to.. later

Nov 24, 2019 8:58 PM

Shore, Glad your taking an active role in your health. Dec 5th isn’t to far away. I hope you talk with your doctor and receive some answers or she at least looks further into your health. Let us know how you faire. Many years ago I to was diagnosed with fibromyalgia that was only the beginning of many more diagnoses.
Zetarlov nice to see you back on. You’ve got a great point there. I to have referred to
My condition as having “chronic” pain. You hit the nail right on the head when you refer it to retractable pain! A few of my dc are;Osteoarthritis,AS, Stenosis, Autoimmune diseases, polyneuropathy, Parkinsonism. Just to name a few. They all are intractable and are not going to go away ( except as you stated; a miracle!”So we would be listened to better from our doctors and understood better by others if we refer to our pain as intractable. Not gonna get better and constant every single day without complete relief. The only thing we can hope for is a decrease in the level of pain. Thanks for the insight!

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