Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Hi all... new here...

Oct 18, 2016 2:16 AM

Is it ok to start new threads here, or do you prefer ppl look for similar threads as build on those?

I did not look for threads containing my question, so forgive me if I should have done that first.

Very brief history... multiple spinal surgeries... L4-L5 360 fusion. Then years later, two levels above and one below completely collapsed. Not a lot they can do...

Had Boston scientific spinal column paddle stimulator implanted about 2 1/2 years ago. If course my trial was much better than my actual, go figure!

Continued pain led me to 8 rhizotomies on facet joints, and further rhizotomies and PRP injection in my now aching knees.

(Sorry, rather LONG "brief" history)
My family has been great... but I get really frustrated when they always ask how I'm feeling... I HATE to tell them the truth all the time, cuz the truth is, I'm almost ALWAYS in a lot of pain.. I can see it break their heart a little when I tell them this... but if I lie about how I feel, who does that really help?

What do you all do? How do you relay your hurt without hurting them?
Lately my knees are almost unbearable. Keep me up almost all night, even heavily medicated... how do you explain to them how tired you are, when you just woke up 3-4 hours ago....? Your tactics and thoughts?
Thanks!
Jason

Oct 18, 2016 2:34 AM

Welcome Jhoopy!!!
You're new we love hearing new bio! It sucks you have chronic pain. I will never say Ik how you feel because your you & it's your shoes.
No need for you to look for a new thread, we needed to know you so it's perfect!

I never ever tell anyone but my PCP (& my cats don't judge I know they won't tell anyone) how much pain I'm in. I use to, but then our conversations were ALWAYS negative. So if asked I say it could always be worse. Taking one day at a time. Thankful for the good days! The people that really really know me are like come on your hiding something so I say to them let's talk about my health another day today we'll have positive & uplifting conversation. It's worked for me so far!

Oct 18, 2016 5:44 AM

First of all welcome I hope you find this app as welcoming as friendly as I have, this feels like a very loving community.
I think it is absolutely fine to post anytime you need any advice or want to vent or even just have a good distraction.
I wish I could give you some advice but unfortunately I'm going through the same thing.
Lots of people here would be happy to give you advice.
Again welcome, I hope you're having a low pain day. Gentls hugs

Oct 18, 2016 10:28 AM

I'm having the same problem as you, how do you let your loved ones know that you hurt 😭 and not worry them? Someone here reminded me how fourtunate I am to have people in my life that care. There are bound to be growing pains when it comes to living with chronic pain and your loved ones. My husband knows when I am in a lot of pain even when I'm trying to hide it. And I can presume your loved ones can to. Be honest with them because they care. They may be able to help you.

Oct 18, 2016 11:06 AM

Hi J and welcome. Well your in the right place. I and i suspect everyone here has the same problems. I have chosen to distance myself from everyone. Who suffers from that? Me! I hate to feel like a burden (pride). So i isolate myself just because i dont want to spoil anybodies day/ evening whenever. I dont want them to see me suffer or to monotously repeat myself. People do get bored but who suffers in the end? Me! You! So unfortunately i find myself only socialising when i am good. Which isnt very often.. we just have t do and manage as we can. If someones not suffering then unfortunately its dammhard for them to understand. Yes i do feel like a burden at times in all areas of my life. Hey ho we hav to plod on though. I am a 1/4 of the man i used to be. That hurts me.. anyway keep your chin up and do what suits you chap. On a funny note i like this poster. Al the best chap. G X

Oct 18, 2016 11:45 AM

Thanks i new my user name is Krippendorf 51

Oct 18, 2016 12:39 PM

Welcome, just wanted to say I am pretty new too and this is a great place to let it all it. I have a few friends who get it but really this is the first place that has helped ... Hang in there and wishing you a decent night's sleep ...

Oct 18, 2016 1:03 PM

Jason, welcome to the family!!! I am sorry to hear of your pain and I can sympathize for sure. I don't talk much about my pain with my family because it's hard for them to understand how someone can be in so much pain for so long. It's also hard on them to see someone they care about being in pain. I'm sure that is why you don't want to chat with your family about it. However, if they are genuinely asking you how you are, be honest. Say you're having a rough day or that you're struggling Because your pain levels are elevated. Keeping it bottled up is going to cause you more anxiety and higher pain levels. I wish you the very best and hope that by hanging out with us and having some laughs, you'll be able to cope with your situation a bit better. Anything that we can help with we try.. there is a lot of information and support to be found here. I hope you settle in and find the group useful.

Oct 19, 2016 10:02 AM

Hey J ! Welcome to the group! My family never asks how I am doing! Since my diagnosis last year not one member of my family has even asked questions or an explanation?!! It's sad when we get together all their problems are up for discussion but if I even try to share someone cuts me off..I just sit there believing they don't want to know because they don't care! Your family truely cares and want to know..I would be honest,dont go into too much detail to bring them down but just let them know you are having a bad day!! Good luck and welcome again!🙃

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