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Someone to relate to? Diagnosed with chronic pain at 13.

May 12, 2015 2:30 PM

Hello all!
My name is Bethany, I'm now 16, and had 2 benign tumours removed from my back and side when I was 13. This surgery injured my peripheral nervous system (as all surgery does, as it cuts into you). However, the majority of people heal completely, my body- didn't.

Due to this injury, my nerves in my back and my brain no longer communicate properly, and I'm in intense pain every day of my life.

My hip has recently (well, for the last year) been playing up. When I say playing up, I mean going very stiff, becoming immobile, going cold, getting shooting pains, going numb etc. Its very scary, as I have no idea what's wrong with me. Seeing a surgeon on Friday, but if anyone recognises these symptoms, please say!

Deep love and acknowledgment to anyone suffering from chronic pain x

May 12, 2015 7:05 PM

Hio Bethany,
My name is Trinity, and I'll be 15 this summer.
I've always had a small amount of chronic pain, but then I stopped being able to tolerate Ibuprofen.
Now, I've been partially diagnosed with CRPS/RSD.
I say partially because I'm going to see someone at the children's hospital at the end of June.
CRPS is also neurological, and is usually caused by an injury/surgery.
I recently ended up in a wheelchair, after my leg stopped working.
First, it burned like bacon grease in a pan.
It hurt terribly, and then got stiff.
The next step was frequent toe muscle spasms.
I was scared when my leg felt numb and frozen.
I started disassociating from it, and could not move.
I'm usually a restless sleeper, but my leg was more than I could handle.
I went to pain management, and there was a team of specialists who all talked to me.
I did not get any medication, which I was happy about.
They got me into a physical therapist who has experience with CRPS.
I hope you get some answers at your appointment!
T

May 16, 2015 4:19 AM

Dear Bethany, my name is Dan. I am 45 but when I was 29, I had a major accident. It took my foot off. They were able to put it back on but I had the same situation but nothing like what you experience. When I healed up, meaning my foot was mended back together with my leg. I still had problems. Every time I would walk on it, it would swell up and turn hot. My scars would turn color. It would burn. There was not much they could do for it.

They explained to me that it was that my sympathetic nervous system wasn't working properly and that anytime I was using that part of my body, the brain would think it was being injured again and act according. It would be nice if they could come up with a drug that could effect that part of the brain but I guess that would also be a little scary to be tested on. I hope you can get some relief. I am sorry that you are experiencing so much pain. I just thought I should tell you the reason I gave you my name and age is so you know who is talking to you when it comes to some man. The Internet can be a dangerous place. Please be careful..

May 18, 2015 10:28 AM

Hello! I'm so sorry that this has happened to you! I can't exactly relate to your specific situation, but I can relate to how it may affect you at your age. At 15, I injured my sacroiliac joints and they are now hypermobile. In the MRI process, I discovered that I have congenital spinal stenosis, which explained the lack of back flexibility and back pain I'd had my entire life. At 18 I was also diagnosed with Fibromyalgia and now, at nearly 22, my rheumatologist is beginning to treat me for arthritis. I'm no stranger to chronic pain. I spend most of my days laying in bed, drugged up on pain kkiller sand muscle relaxers, staring at the ceiling wondering if my life will ever return to the active social butterfly I once was. It's difficult to be in a position of chronic pain in general, but it's especially tough when we're teens because our friends still have some learning and maturing to do and don't always understand why we can't do what they do. If you ever need support, I suggest the "Chronic Pain Support Group" on Facebook. They're very uplifting and caring. Plus, I'll be there too :)

May 19, 2015 9:33 AM

Bmrdawson, hello Bethany. I'm sorry you are hurting at such a young age. It's very hard on us older generations because of the isolation and loneliness. It's got to be much harder the younger someone is. I remember how active my teen, twenties, thirties and forties years were. At 53+ I'm pretty much sedentary and have to decline more invites than I like due to my chronic pain and multiple health issues. I'm not tech savvy so that isolates me even more. I've been hacked via email accounts and my FB so I'm Leary of online things. But you are young and in the most tech savvy generation which gives you more options to not feel alone.

As for friends, I'd suggest total honesty in letting them know how your pain affects you. Share the "spoon theory" with them. And when you can alter how you sit in order to hang out with friends, do so. I purchased a coccyx pillow to use on hard chairs due to my Lumbosacral and sciatic pain. Maybe your parents can get you one. Mine came from Amazon. I'll be praying for you & your friends, that they'll become more supportive. If they go out for ice cream and you can't go maybe they could bring you one and visit awhile. 🙏🌼

May 20, 2015 9:12 PM

Hi Bethany, WOW!!!! you're so brave

May 21, 2015 11:23 AM

Wow Bethany I too am so sorry you are going though this but especially so young. I hope I'm missing a bunch of steps and you aren't being sent to a surgeon for this hip/leg issue before they tried other options. But no doubt you and your parents have a handle on that. While it didn't work for me and it was a long time ago many of these options have helped others, they did nerve blocks as well as trigger point injections on me among at the sympathetic nerve system. They also tried a family of medications developed for depression I think, that have a side affect useful for normalizing the symp nerve system and increasing natural pain fighters imipramine was one I forget some of the others, I wasn't able to take them, that might be worth looking into. You have the benefit of family around to keep aware of any ill effects. This may all be mute and ideas already tried or ruled out, if so sorry but I figured worth the info. Hope your appointment is successful.

May 23, 2015 12:03 PM

Hello Bethany,
I'm 16 and have been suffering since 14 with a complex and unknown condition. If you'd like to talk, I'm more than happy to kik, email, snapchat etc.

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