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Chronic pain syndrome

Feb 01, 2015 4:03 AM

Hi all,
I was diagnosed with chronic pain syndrome (more specifically chronic neuropathic pain) 2 years ago. I got it following surgery to remove a benign tumour in my lower back (it was bloody huge, the size of a golf ball). I'm fifteen years old, and to say the least- struggling.
I was wondering if anybody could share with me their experiences of chronic pain syndrome, eg: what helps them to cope, what they do in a flare etc.
Thanks!
-Bethany.

Feb 01, 2015 4:31 AM

Hi Bethany, have fun! I'm old (55) and severely limited in what I can do with neuropathic pain - among others - but I've found the only thing to do is focus on what I can do, not what I can't, and get pleasure from hobbies etc (I no longer work).

Drugs, TENS etc have little or no effect for my pain.

I empathise, but you're far from alone, even if the isolation seems insurmountable sometimes.

Feb 03, 2015 9:12 AM

Hi Bethany. Perhaps if you put on music you love and get totally lost in it. You could also meditate, try acupuncture, acupressure, etc. I'm sorry you ended up in so much pain. It can be exhausting. The one awesome thing is having the folks in this community to chat with. You'll never be alone. Hang in there and good luck,!!

Feb 03, 2015 11:00 AM

Bethany, I'm sorry that this has caught you so young. What courage it takes to be only 15 & dealing with this. I am in awe of your spirit.

Jed & Alwayz had some good suggestions. I have started to use music more to help with things like blood draws (I HATE needles!) & such. I agree that finding something fun to occupy your mind can help. Challenging your mind can also help so if you were to challenge your mind in a fun way you'd be set!

Keep posting - I'd love to see what you do with all off this.

Feb 03, 2015 12:48 PM

I personally make myself get lost in a long (2 hours) hot girly bath. I also use lots of epsom salt in my bath I truly believe that the magnesium helps muscle and nerve pain. The kind of bath where the room is lit by candles and my favorite music is on my Ipod. I cannot turn my mind off to meditate -it just will not be quiet and I end up angry. I am laughing at myself as I write that. That being said, music has always been huge in my life. I found some ear buds that are water resistant (no big deal if they get splashed) so I can lay in the tub and soak with my favorite play list. This helps me relax and recharge. My biggest problem is balance. I try to pace myself and always over do it. I would hope to have figured out when to stop but it has not worked for me yet. The problem is when I am having a pain day below a 6 I try to do everything because I am happy to not be an 8.5 like most days.

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