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CatchMyPain Community and Pain Diary App to manage chronic illness

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Oct 25, 2016 6:37 PM

I am interested in hearing about others pain journey. I am at a difficult point where I am debating about SCS or other treatments.

Anyone willing to share their story and help me with my decision, please private message me. I love this new feature!

Oct 25, 2016 8:20 PM

Private message is great but if you truly want to read our stories posting them here might give you a better response. I think that if you did a topic search you would find some have all ready shared their stories. In fact I think one such post was done last week. I will see if I can find it for you.

Am so sorry you are dealing with pain issues.

Oct 25, 2016 8:24 PM

I agree with Mimi, you should post about your pain. This is a great community and we're all here to support one another, Pugger!

Oct 25, 2016 8:38 PM

I found the post I was talking about. If you have trouble locating it let me know. Will gladly share my story when I have rested from PT. Ugh.

Oct 25, 2016 8:46 PM

Sorry, I wanted to protect people's privacy in the community for those who want to share their story but maybe not publicly

Oct 25, 2016 9:16 PM

Pugger, welcome to the family! I've been lurking in the background lately thanks to my hands not liking me lately. I have EDS type 3. Also known as Ehlers Danlos Syndrome hyper mobility type.

It took me 43 years to get the answers that my family and I sought for the pain in my life. My shoulders started dislocating when I was a baby, but because they would go back in without being manipulated the doctors wouldn't believe my Mom. As a teenager I'd sprain my ankle several times a year by simply walking. I could touch my thumb to the top side of my forearm as well as the bottom side with each hand. My knees bend backwards as do my elbows. My fingers bend back over my hands. I wear wrist splints to bed every night to help keep my wrists and thumbs from dislocating while I am sleeping. I have been disabled and unable to work for most of my adult life.

Some days I get very discouraged and feel useless, but thankfully that feeling doesn't last very long.

Oct 25, 2016 11:58 PM

Very sorry to hear about your pain experience. What other treatments have helped?

Sometimes just having a close support network makes things better.

Oct 26, 2016 12:36 AM

Pugger -
I do have a spinal stim for the pain in my neck and shoulders. Its been a couple of years. What I really noticed was a side benefit as it took away my constant steady headache I had been dealing with for over 20 years.. After a year the headaches were back and it wasn't helping to keep the edge off the pain. I finally just turned it off a year ago. (although being the optimist that I am I do turn it on For a couple of weeks every couple of months just in case the results have changed. :) I do know a few others though that this procedure turned their lives around. The trial that you go through before surgery will at least give you an indication of if it will work..

Oct 26, 2016 12:59 AM

That is inspiring. Is the trial process easy? The Boston Scientific rep made it sound very easy. The implant is obviously more complex.

I wish I knew the costs of doing the trial to see if it will even work for me

Oct 26, 2016 1:16 AM

Trial is fairly simple.. But a tad uncomfortable as you are attached to wires. Actually that wasn't uncomfortable but the questions and stares were annoying at best. ;) the surgery itself is a serious one and so by doing the trial you know if it will work or not. No sense pushing through a surgery if you know it's not working. Hope that made sense. You can always ask. I don't think there are many doctors who would agree to do the implant without having the patient run a trial on it.

My Stim was done using MedTronics company. I do wish that following surgery the reps would have checked in to help make sure everything was still on track and any questions were answered. I think I have only met with her three times and I initiated 2 of those. I have heard that Boston Scientifics St in is a newer one and in many ways an improvement. :) haven't researched it though to make sure.

Oct 26, 2016 9:00 AM

ScaryAnn, was wondering where you'd gone Sweetie.. glad you're lurking. Thinking of you and sending gentle {{{Hugs}}}💕😊

Oct 26, 2016 10:09 PM

I wear ring splints during the day, they help more than I ever drempt they would. I have braces for my fingers, wrists, knees, and ankles. Some I wear during the day, some at night, and some only when I need them. When I am going to be doing a lot of walking I have crutches that I use in case my ankles, knees, or hips go out while I'm walking. I have knee socks that I have cut the toes out of so I can wear them on my arms when they ache.

But distraction is my biggest help. I make the ring splints that I wear. I am currently making wire Christmas decorations as gifts for my family. I enjoy reading and playing computer games.

Thanks Alwayz, it's nice to know I'm missed. :-)

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