Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness


Aug 03, 2014 7:31 AM

Teenager living with CRPS. If anybody else has this, I'd love to hear how you manage you pain. My pain is getting worse and worse and I feel like nobody understands.
Anyone else out there living with this condition? If so plz let me know that I'm not alone

Aug 04, 2014 6:50 PM

Hi. I'm in my 20's and got diagnosed with CRPS about two years ago. I am on a lot of meds including cymbalta, gabapentin, some muscle relaxers, pain medications, and sleeping medications. I have terrible muscle spasm all the time, and it is very hard to deal with. I recently got a spinal cord stimulator. It does help me with my pain, but it doesn't help as much as I would like it to. I know it is hard to describe this condition to others. It's like nobody knows your pain; only you can feel your pain. My family and friends are a good support group for me. I keep in constant contact with my pain team. Have you tried nerve blocks? My pain doctor told me that CRPS is the hardest thing to treat because everyone is different, and different things work for different people. I would recommend that you talk to your doctors and try and figure out what is helping your pain and what steps you need to take to improve your pain relief.

Aug 05, 2014 3:54 AM

What started your CRPS? Today I actually had a lignocaine infusion with is supposed to act as an anaesthetic and give some pain relief. Similar to the ketamine infusions if you have heard of those. so far I have no had any pain relief, but fingers crossed it starts to work.
I agree 100% it feels like nobody understands. I have a great bunch of friends and my family is great but as much as they say they get it, they really have no idea.
Would you recommend the spinal cord simulator? I'm desperate to try and reduce this pain, even if it is just a little bit. I'm in my last years of high school so it's pretty tough missing heaps of school and being a teenager I really just want to be able to go and hang out with my friends.
Love to hear more about you. So good to know I'm not alone :)

Aug 05, 2014 4:47 PM

My CRPS started after one of my ankle surgeries. I was lucky enough to get diagnosed right away. the thing that annoys me the most is that some people think that the pain is all in my head. My pain specialist gets so excited when my foot is red or purple because he says he doesn't get to see CRPS all the time. I'm like well at least someone is excited about it. My doctor has talked to me about ketamine infusions, but something about it makes me nervous. I would definitely recommend doing the spinal cord stimulator trial. I think to do the trial you need some physical therapy, an MRI of your spine, and you have to see a psychiatrist. At the psychiatrist you just have to do this little test thing; it decides if you're in pain along with several other things. My results said I was in pain, have anxiety, have depression, have ADHD, and have insomnia. I am sure it is rough missing a bunch of school because some days you're better than other days. It is like one day you can do something, and the next day you can't. I think that's what makes it difficult for people to understand about CRPS. Have you heard of the McGill Pain Index. I think it is a good way to show people how CRPS rates compared to other things that causes pain. I hope that you know that you are not alone; even Paula Abdul has CRPS.

May 05, 2015 1:15 AM

I got diagnosed at 18 yrs old I was induced into a colma for several weeks i had double pheumonia. I awoke to severe nerve damage taht they said was temporary months later i was diagnosed with CRPS 7 yrs later anow 25 they say theres no cure and i may never walk again.My heart goes out to anyone suffering from chronic pain its worse ghan death and would never wish it on anyone. Blessed are we♡

May 05, 2015 11:12 AM

I'm sorry to hear you're in the same situation.
I'm 14, also have CRPS.
Right now, I can only handle 2 hours at school each day which is pretty tough.
If you're a "kid" there are some programs available for CRPS/RSD in particular.
There's something called legacy but it sounds hard, basically the method is push you way past the pain you're already going through.
Depending on the doctor/specialist, there are case studies where Low Dose Naltrexone can decrease CRPS, or even reduce the nerve damage.
I had to start with a little bit, but if opioids (ex. Kratom) help a ton, you can have withdrawal if you don't wait between the meds.
I don't know how my CRPS started, but I'm pretty sure it's been in my wrist since I was tiny.
One other thing that helped me is gallium, which is used with horses to cure arthritis, but it works for me.
I've also heard there's no cure, but I'm not entirely convinced.
I'm walking again, so I believe it can change.
Also, my PT has worked with kids with CRPS for a long time, and she seemed really happy because "I can actually help you!"
One doctor told me I had carpal tunnel,even though I had stopped using my hand COMPLETELY for 3 months.
Good luck,

May 05, 2015 12:06 PM

Thank you i will look into naltrexone i have just been too afraid to get injections but i am at my witts end with all this pain and need some sort of revolution . It sounds like you have a plan i have just been tolerating pain for 7 yrs.

Ready to start relieving your pain?

Join Community