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CatchMyPain Community and Pain Diary App to manage chronic illness

New here, looking to give and receive support..

Jul 17, 2016 3:13 PM

Hello!! I'm a 49 yrs old who honestly can never remember a time without pain. My family says even as a baby I was in pain, diagnosed with underdeveloped joints, different leg length legs (I had those ugly white high top shoes forever!!!) Eventually my knees started to dislocate, and to 'cure' me my Orthopedic Surgeon, a respected sports doctor, performed (on each leg) a bilateral tendon transplant--at the age of 12 and again at 13, he took the tendon from the back of my leg, removed the cartalidge from the knee and made a place for the patella to sit, then used the tendon to hold it in place. No one considered that I would be bone on bone. At 25 I had my right quad repositioned. Neither of these procedures are done any more.

I also have been diagnosed with Metabolic Syndrome (type 2 diabetes, among other things). Would have been nice had that diagnosis and a treatment come before a hysterectomy LOL.

So, I walk with a cane (which, hey a walker, crutches or a chair might be better when out, I need a gait assessment), I try very hard to be a glass half full type of gal--but, I am on day 3 of pain being a 10 of 10 since that is the rating with no relief. I tried the cortisone injection into the back (won't be doing that again). I did this before, but I didn't have this response. Actually, I had no response with it, but it was higher.

I know this is long, and I apologize. I sincerely hope 'if I can give someone support I won't concentrate on my own pain' (how is THAT for the strangest advice you have been given for dealing with pain?????). I reall have been in pain for so long, that my 'baseline' is a 7-8, and an excellent day now is a 6 (yeah, I don't have those really anymore 😢)

Thanks for letting me chat a little!! Hope everyone is having an ok-ish day!!!

~Jill

Jul 19, 2016 9:18 AM

Welcome to the community family Poods! I'm sorry you've been through so much at such a young age. I'm 54 and other than a broken leg as a child I was healthy, even through 2 spine surgeries in the 90's, until fibro started in 2007, followed by a 5 in 1 surgery in 2010. That took me out of the working world and my life has been constantly changing health issue since. But like you I try to stay positive. You'll find many of us use positivity as a coping mechanism, along with relaxation, stretches, exercise, hobbies, etc. I had to give up my hobbies due to my neck & hands & upper back, but I still try to enjoy life when I can. My faith in God is my biggest coping methods, through 20+ surgeries, including one on may & one Aug 8th. But finding this community and being able to know I'm not alone and there are others who understand and don't condemn or judge, making new friends & acquaintances, that has been a major blessing in my life! Hugs & prayers as you find ways to help & be helped, to cope and get through the hard times, to share laughter (yes we enjoy that), to be part of our family! 🙂💕🙏🌸

Jul 19, 2016 1:07 PM

Thanks for the welcome!! Sounds like you are a glass half full type person as well!!

Jul 19, 2016 2:40 PM

I have sensorimotor axonal peripheral neuropathy and that sounds like a month full and that is more like a pain full and I have controlled type 2 diabetes and that is no fun I had a fall last night and I took a spill and I'll need some prayers please! I hope that doesn't happen tonight wish me well as a big favor please, thanks! ;)

Jul 19, 2016 4:40 PM

Yes I am Poods. Even with previous surgeries, other than migraines, OA, DDD, and TMJ, I was practically 90% healthy until my fibro symptoms started in 2007. Having to give up my job was very hard. Every year since 2010 I've had something new to deal with. But I refuse to give up or give in. Trust me, on bad days I do rest and feel guilty at times for being lazy. But on good days I make the most I can of it. I battled with depression and anger over my whole situation and having to give up my job completely. Then in 2014 I realized and accepted there's no turning back the clock. It is what it is, but all of it isn't who I am. Finding this community helped me not to feel so alone & isolated. But I really hate knowing there are so many of us. I can't take most pain meds so my pain has to reach a 7-8 before I take rx tramadol. Otherwise I get through it one day at a time. I've been in a flare since Thursday, but today's been better, so hopefully I'm on the upswing. I hope you have a good day too!

Jskunky, I'm sorry you took a fall. Hopefully you won't have a repeat of that.

Hugs & prayers for all! 🙂💕🙏🌸

Jul 19, 2016 4:45 PM

Thank you so much that is very sweet of you this is music to me ears and true kindness keep it up we can do this together and enjoy each others company, God bless you!

Jul 19, 2016 4:47 PM

God bless you too 🙂💕🙏🌸

Jul 19, 2016 4:54 PM

I hope all goes well and when you're in pain you turn to get the assurance us so we can preoccupy you and others take care and have a great day!

Jul 19, 2016 5:28 PM

My Aunt was a Mother Superior and used to say 'God never gives us more then He knows we can handle. I just wish He didn't have so much faith in me' lol. She had chronic pain too, her Rosary Beads were quite smooth from her prayers!!! She was quite an example!

Last Wednesday I had that stupid cortisone shot in the spine you can get every 2 weeks, my pain went to a 5 that day (from the lidocaine) to a solid 10 since. I'm getting lots of meditation practice in!!

I'm learning Reiki (energy healing), I am in MN and would love to set up practice times with you guys if you would be willing, just 5-10 minutes, and all you do on your end is relax as much as possible, and invision a ball at at time we would set up--let me know if you'd like to try!!!

We are very strong--you are right FlappysLady81, it's too bad there are so many of us. But at least we can support each other!!!!

Hope you are staying cool!! It's almost 90 in MN and will not cool off for a few days!!! 🌡🌝🍨

Jul 19, 2016 5:37 PM

Keep strong and hang in there tight and never ever ever ever give up we know what we're going through and we're not giving up we're a team and me are the winners and pain are the losers keep the winning streak alive all of you, you can do this together and do not quit

Jul 19, 2016 7:36 PM

And I'll give reiki a try as you offered and I'm in with you on the idea of reiki let's do it! I'm in.

Jul 19, 2016 10:00 PM

I found an obsidian ball which I have used in my first time trying reiki as I looked into it I started to see a bright light around my head and it was so soothing and it relieved my neuropathy pain! I love it, I should do this more oftena and everyone should try this martial art of enlightenment!

Jul 19, 2016 10:14 PM

Hats off you have strength and pain tolerance more than you think and I admire that, keep it up you're doing great!!! Going what you're going through I'd go insane, I hope all goes well!

Jul 20, 2016 7:23 AM

Poods, it's been hot & humid for 2 months with only a few rare cooler days; 95-100, with heat indexes over 100. We finally got our first good rainfall in 3 months yesterday! Our grass, plants & trees are literally dying &/or losing leaves. This weekend it's supposed to be 100+ temps...ugh! 😰

Jul 20, 2016 7:32 PM

OMC FlappysLady81, how do you not melt????? No wonder you have chronic pain--not enough fluids!!!! 😉 I am learning the Reiki, and I do lots of youtube meditation videos....or repeats of Ghost Adventures, or I just found one called Ghost Asylum I tell the hubby I'm going to lay down and meditate, pop in the ear buds and watch shows he rolls his eyes at but I like to watch...ah to guilty pleasures!!!! Stay cool!!!!! Sending *hugs* and positive thoughts!!!!

Jul 20, 2016 7:41 PM

I know how fun it really is to do reiki every time before I go to sleep I do it to hip hop music and ahh relaxing and I melt away to sleep and it works so well I wake up to awareness and waiting for what the day will bring and YES! IT KILLS PAIN!!! Thanks for your post and God bless you have a splendid day

Jul 20, 2016 7:45 PM

And I did not know I was doing reiki before I'd go to sleep!

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