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Chronic pain is not a child hood.

Aug 31, 2016 3:19 PM

I have a chronic disease called Neuromyelitis Optica. It effects are similar symptoms to multiple sclerosis. Been on steroids year and a half as my other immunosuppressent was too low but we upped it and I became anemic.
Steroids have ruined me and I've needed up in a wheelchair suffering with chronic pain and fatigue from them.

I went to the wedding on the weekend and honestly it killed me I was there the full day. I usually spend 90% of the week in bed so this was a lot in one day. Most people I come in to contact with onnthe average day is around 4.... It has exhausted me and I'm getting a huge everything flare up now.
I took morphine we had left over from a old prescription and it's doing nothing just like all the other times. I'm so desperate for some relief we have really tried most things. I'm suspecting that I could have possible fibromyalgia or complex regional pain for many reasons but I just want relief so bad. Even if I just get knocked out by meds it's good enough for this painsomiac. How the fuck am I supposed to deal with school next week for the first time in over a year. It's a brand new school too so have anxiety about that. I really just don't know what to do with myself. All panicked.

Aug 31, 2016 6:25 PM

Just breathe sweetheart... ๐Ÿค—just breathe...๐Ÿ˜š u are going to be fine.๐ŸŒน Stress will directly affect ur pain levels angel...๐Ÿซ so try to breathe and relax.โš˜
๐Ÿค” Are u going to be having๐Ÿค” any assistance๐Ÿค— from ur new school next week?๐Ÿ˜Š Im sure this is going to be a wonderfull new start for u...๐Ÿค— a new term... to show 'em what ur made of! ๐Ÿ˜‰
๐ŸŒนThis is a new chapter in ur story...๐Ÿด an exciting time๐Ÿ˜„ for u to embrace ๐Ÿค—and forfill ur true potential! ๐ŸŒนJust breathe hunni... u will be fine...๐ŸŒท there will be people to help u along the way. ๐Ÿ˜šAnd i wish u such fantastic karma for ur journey.๐Ÿค— I am really proud๐Ÿด to see how it all turns out for u angel... the bestest luck in the world ๐Ÿค—

Aug 31, 2016 6:32 PM

Hun breathe. You're young and I know it's tough, trust me. I may be older than you but when I was 14 I had my accident and since then nothing has been the same.
If you have pain companion (rather than CatchMyPain) please private message me and hopefully I can support you through this as well as give you any advice I can.

Gentle hugs ๐Ÿ’œ

Sep 01, 2016 1:21 PM

I agree. They use to say growing up that My leg pains and arm pains were "Growing Pains." I still have these pains and I know Since High School Years ago that I am not growing anymore. I am going to look up the Chronic Disease you mentioned. It is not one I'm familiar with. I got diagnosed with VCFS 22q11 Deletion disorder, When I was 24.

Sep 01, 2016 1:58 PM

I know your ordeals and I'm her for you please feel free to PM me anytime. I'm usually uo too with painsomia of some sort. I know the life u lead is hard a d I wish I had a magic bullet to help you through it. But I'd just say to you what has been said to me. Step by step.day by day..it's gonna be ok..

Sep 01, 2016 2:18 PM

One day. One doctor. One med. One breath at a time. You can do the impossible when you do it a little at a time. Hang in there. It'll all be ok.

Sep 01, 2016 2:36 PM

I tried to message NiamhNMO. I think she has CatchMyPain or an old version of the app because I couldn't message her

Sep 03, 2016 10:15 PM

NiamhNMO, I'm sorry you are suffering at a young age. Tiredinpainandinsane isn't much older than you and he has really struggled the past 2 years. He and many other of the younger gen would be able to give advice on getting through school. Unfortunately I've been out of school way to long to remember how it all functions. Just breathe deep and slow anytime you feel stressed and panicky. And focus on one step at a time. If you haven't tried it, see if your doc can give you a very mild muscle relaxer to take when your muscles are all tight and cramped up. That alone will help with sleep; I can't sleep if I'm having cramps and spasms from my fibromyalgia. I also take 1/2 of a melatonin on nights I'm struggling to fall asleep. Sending you hugs love and prayers for a much better school year than you expect! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒธ

Sep 06, 2016 8:00 AM

NiamhNMO if you can, try to update your pain companion app so that we can private message. I can also give you my other contact details e.g. Kik, Snapchat etc.

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