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CatchMyPain Community and Pain Diary App to manage chronic illness

Introducing Myself

Sep 26, 2015 11:49 PM

Hello, everyone! My name is Elle and I survive a number of diseases that are chronic and most are incurable, just treatable.

Every day I awake waiting to see what the day holds. I hope for the good days but survive the bad ones with as many smiles and laughs as possible. Thankfully, my significant other is hilarious and keeps me laughing.

I am very glad to have found this app for it makes me feel less alone and that there are those who understand & can be there for me.

I'm exhausted from a very stressful weekend and dealing with people who don't understand the severity of my illness. I don't think I can make much more sense. I'm sure I'm supposed to tell y'all everything I've got but i can't remember everything.

I was in a really bad car accident 12 years ago, fibromyalgia, chronic fatigue syndrome, spondylitis, neuritis, severe asthma & severe chemical sensitivity, intersistial cystitis, adenomysis, hypothyroidism and I am certain I've forgotten a few. I do know that the doctors are still searching for more answers..... Or as many as we know, diagnoses that just lead to more questions.

One last thing, I don't know about y'all but when I began this journey and was finally "officially" diagnosed with the first diagnosis, I had thought it would give me closure but then i realized it only opened more and more doors to questions. I had though oh so naively that they'd do blood work find an illness and give me a pill and I'd be all better. Hahaha. It took years for me to realize that it's an art not a science. And what works for me may not work for another. But that isn't going to keep me down. That took a while to cultivate the hope i have and the joy of living. Even though I live this life that others don't understand and often think I'm making all this up. That just makes me laugh. It used to hurt my feelings now i laugh.

Anyway, thank you for letting me introduce myself. I know I may have gone on for a while. How this wasn't too long of a post ;) (and I don't get responses tldr= "too long didn't read" Hahaha)

have a beautiful day, hopefully it's pain free but realistically what we can all hope for is support by those around us and understanding. And hey "if you can't make it better, laugh at it," Erma Bombeck

Healing hugs all around :D

Sep 27, 2015 6:19 AM

<*hugs *> welcome!

Sep 27, 2015 11:31 AM

It is reassuring to know we're not alone. I too am new here and glad I found this app.

Sep 27, 2015 12:20 PM

Thank you all for the welcomes. I apologize for the long post but I am a writer who hasn't been writing (did i write that already? Haha gotta love memory fog)

I look forward to getting to know you all.

Sep 27, 2015 10:39 PM

{{{{{Hugs}}}}} right back to you, Kitty26 and welcome to our family community. I hope your finding the support, advice about what's going on in your body. There are many, many fantastic people here ready, willing and able to give you advise, listen to you vent and give you info based on our different experiences and diagnosis. I wish you all the very best in your quest to find answers and also welcome once again welcome to the group. Please know, you are never alone. Best of luck and I will keep you in my prayers. 🌻🙏🏻

Sep 28, 2015 1:37 AM

Thank you, Alwayz. This journey has been over rough mountains and treacherous terrain, kind of like the people going out west in covered wagons. Yes, that's exactly what my journey is like but there's no end in sight. Just more doctors appointments and more mountains to climb. Wow, that sounded so pessimistic (but i suppose that's how i sound in the middle of the night being awoken by severe pain. And trying not to awake my dear bf up. He's a gem. But he's got to go to work in a few hours, I don't. And fabulous our cat is outside the door fussing, that's surely going to awake him. *sigh* as if me being on a special diet weren't enough, I've got a cat with issues lol.)

Sep 28, 2015 4:50 AM

Good morning everyone. This is all new to me but the pain is not.

Sep 28, 2015 6:26 AM

Good morning, butterfly! Hope today is one of those rare good days and if it isn't, I hope you've been blessed with a few smiles and a bit of comfort despite what ails you. :) sending you some gentle hugs and a bit of hope, okay well a lot of hope :)

Sep 28, 2015 8:54 PM

I too am new to this app, but feel a bit of a foreign body as it looks as though you guys are mostly from the USA and i am British. Im going through a mild fibro flare atm, but with added complications of a trapped nerve in my leg. Loads of other chronic illnesses unfortunately. Luckily omly been hospitalised twice -6 weeks with Fibromyalgia andc2 weeks with Asthma and severe chest infection. Its now 2.55am here and im still awake - yep, insomnia is another always present 'gift'.

Well, signing off for now. I dont know if this app is like facebook and notifies you of replies, but if anyone would like to say 'hi', i will check back later.

Gentle hugs everyone. ((X))

Sep 28, 2015 9:48 PM

Hi, welcome to the group. If your settings are set correctly it should let you know of a reply to your post. It's not prefect (or in just missing things lol both could be true).

One of my closest friends is in London and we text almost daily. You have the advantage of showing us a new perspective.

If i might ask, how did you get hospitalized for fibromyalgia? I went to the hospital and was offered drugs that I'm allergic to and basically told that i was wasting their time with my pain. My fibro had flared after a bad reaction to trazodone and i couldn't walk. I fell every day that i was on the medication and it was awful. Oh my. I have never been treated so badly at that hospital. I wish in my small town we had better options for hospitals but it isn't so. (up until this point, i had always had good experiences with the doctors dealing with my interstitial cystitis and adenomysis. Had never been told they didn't have medication i wasn't allergic to in the hospital. I mean really? I can take medications as long as they haven't got acetaminophen, ibuprofen, aluminum Lake dyes. And isn't tramadol and a few others but I'd never been up against a doctor who claims they will only give me medications with stuff I'm allergic to! )

Anyway. Welcome to the group. Please don't let the fact that you live over the "pond" make you feel like you don't belong. I am always looking into the way Europe handles certain issues because America is behind the times in treatments for some of my diseases, one of my diseases isn't even acknowledged as a debilitating disease yet here in America. But in over 17 European countries they admit that it exists and have a code in their diagnostic book. They also have added it to the list of diseases that are applicable for disability.

Anyway excuse me, I'm long winded! :)

I hope you can get some rest. I am totally with you on the whole insomnia thing. :) big, gentle healing hugs
You can call me Elle if you'd like ;)

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