Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
When all this started, I had no idea how much things would change. When my problems started I feel like I had to rebuild my whole life.. Now some days I feel confident that I'lll make it and some days I could just flat out give up.
And lately, I've felt like giving up. I've been through so many doctors that have told me to just go to a therapist, that it's all it my head, etc.. But I went to a neurologist this morning that gave me some hope for the first time in a while. I've told you guys that I have a syrinx and had a tethered spinal cord up until I had surgery last year but I didn't know why I was still having pain. Apparently since my spinal cord had been damaged so much the myelin was stripped from a lot of my nerves. Unfortunately I don't think it'll ever be fixed.. He did point out, though, that I'm lucky because my nervous system is still developing for a few more years so theres a chance that things may improve slightly. And since my CSF flow has been messed up lately there is a chance my psuedotumor may come back alothough it's not extremely likely. Anywho, he gave me Lidocaine patches, put me on Cymbalta for neuropathy and mood, and ordered a nerve conduction test. (I'm so happy about it.. but why the hell has it taken these doctors a year to do this? I knew a long time ago that this is what I needed just by doing my own research.) The Cymbalta will take a while to kick in but I can already tell these patches will be a small miracle. So glad there's a doctor that's actually on my side for once.. I'm determined to finish the semester and keep my 4.0 even if I have to work my butt off to get to school every day.
Even though I've gotten a lot of grim news lately it's better than nothing. I needed something to get my anxiety down.. I'm sure you guys know how bad anxiety can effect pain and I've sure been stressed out lately. I need to start doing some more relaxation stuff. But anyway, the point of this whole post.. How has your pain changed you as a person? What things do you think about to keep you from getting discouraged?
Hope everyone is keeping their pain managed this week! Today has shown me that help is possible even if you have to go through a ton of doctors.. Don't ever give up. (Also.. my friend finally got out of the hospital even though she's not in very good shape. Thanks for the prayers/positive thoughts.)
And lately, I've felt like giving up. I've been through so many doctors that have told me to just go to a therapist, that it's all it my head, etc.. But I went to a neurologist this morning that gave me some hope for the first time in a while. I've told you guys that I have a syrinx and had a tethered spinal cord up until I had surgery last year but I didn't know why I was still having pain. Apparently since my spinal cord had been damaged so much the myelin was stripped from a lot of my nerves. Unfortunately I don't think it'll ever be fixed.. He did point out, though, that I'm lucky because my nervous system is still developing for a few more years so theres a chance that things may improve slightly. And since my CSF flow has been messed up lately there is a chance my psuedotumor may come back alothough it's not extremely likely. Anywho, he gave me Lidocaine patches, put me on Cymbalta for neuropathy and mood, and ordered a nerve conduction test. (I'm so happy about it.. but why the hell has it taken these doctors a year to do this? I knew a long time ago that this is what I needed just by doing my own research.) The Cymbalta will take a while to kick in but I can already tell these patches will be a small miracle. So glad there's a doctor that's actually on my side for once.. I'm determined to finish the semester and keep my 4.0 even if I have to work my butt off to get to school every day.
Even though I've gotten a lot of grim news lately it's better than nothing. I needed something to get my anxiety down.. I'm sure you guys know how bad anxiety can effect pain and I've sure been stressed out lately. I need to start doing some more relaxation stuff. But anyway, the point of this whole post.. How has your pain changed you as a person? What things do you think about to keep you from getting discouraged?
Hope everyone is keeping their pain managed this week! Today has shown me that help is possible even if you have to go through a ton of doctors.. Don't ever give up. (Also.. my friend finally got out of the hospital even though she's not in very good shape. Thanks for the prayers/positive thoughts.)
What great news that you finally have a doctor hearing and validating you!
....that's one of the changes right there..:-)
My first impulse is to rant that it took so long...that we need validation at al...and so on.
I've learned that all that..no matter how true..
Doesn't serve myself ..or others..as much as focusing on the good news.
Know what I mean?
Yep...it might be grasping at straws at times..
And..we all know, that there are times when there aren't even those straws to grasp at.
But..this life ( with CP) .. is So hard....so tiring...
Can degrade'the strongest spirits at times..
That...I've found I HAVE to grasp at the little victories.
Speaking of victories..and this is no little one..
Congrats on maintaining a 4.0. !!
That's not easy under the best of circumstances..
That you've done it under yours speaks volumes about your character.
Kudos.
Hugs.....jc
i quit a great career, and went on permanent disability, and social security.. but i guess i still held on to my dreams, and deep inside i never gave up hope that someday i would return to work..
9 long years later, and many surgeries the last being a double fusion, i was able to somewhat pick up where i left off.. it feels like starting over, but with another chance..
what im trying to say, is you can say you've given up, and you can even feel it, but keep your dreams alive in your heart..
your doing so wonderful in school, and just think of this time as a little break, until things get better..
your doing great!!
~stinke~
So sorry u have to deal with horrible pain at such a young age :(
Xoxo MLC
Glad you found a good Neuro that listened and helped, that's always a good combination.
Just a word about the Cymbalta, it can cause manic episodes or agitated/anxious states so be aware of that. Neurontin and Lyrica are the same types of meds without that particular side effect if the Cymbalta becomes a problem.
Take care,
And thanks for letting me know katlyn, I'll watch out for that.. It's been giving me MAJOR nausea but the doc said it should wear off soon. Other than that I haven't had any side effects thus far.
So glad you found a doctor who is listening to you. Validation is so important. For some reason, it's harder for women to get treated for CP, and also the fact that you are so young. Still, your MRI and your particular conditions seem a little hard to easily dismiss.
Congratulations on your A average!
Take care.
Jeri
it has also changed my whole life as i was one that "just did" everything that needed to be done and helped others that couldn't do.
i have had to learn to humble myself and ask for help.
i feel frustration at being unable to do until i just break down, not because of the pain (altho that happens also) just from feeling so helpless.
i used to be so outgoing now force myself not to isolate.
pain has changed me in many ways!
it has also shown me that i can bear more than i ever thought possible.
so it has caused some good and some bad changes, i hope more good than bad because pain can bring out the worse in me if i allow it to.
CONGRATULATIONS on your 4.0!!! i just got my B.S in 2008 at 53 years old so i know what work that is---good job!
Emily, it seems to me that the Lyrica or Neurontin would work better since they are in a classification called anti-convulsants that drs find help with neuralgia. Cymbalta is an antidepressant that is also approved for fibromyalgia and other nerve issues. Good Luck!
I agree with you jarca. I've come down to earth some, by necessity. I, too, like many here, wore the cape and managed other's lives. In the beginning of my cp, I thought for sure my pride would kill me because I was the one who took care of people. It was hard to ask for help but I couldn't do it on my own anymore.
Pain is a great convincer. Of course I still have rough days but have also learned to be patient with me for the first time in my life. Especially when I feel decent and decide that maybe, just maybe I CAN work the north forty......
A good sense of humor helps too. I was having one muscle spasm after another one day. I was oohin' and ohin' every other second. I just started laughing when I wondered how it would sound with music.
Every day is not a cake walk but neither is it a vale of tears anymore.
jarca - I do understand how awful the frustration can get. It's an awful feeling to realize how much you've missed out on. And I feel like I was more outgoing too and then changed once I had to worry about my pain rather than my social life.. It's great that you managed to get your degree despite all of it. :)
gr8ful2b - I agree with both of you guys, it sucks to have to take care of yourself so much more than others. Makes you feel selfish sometimes. :/ I tried Lyrica last year and it really had no effect on me. The Neurontin, however, helps a lot with the burning in my hands, but I have to stay on a relatively low dose because it makes me so drowsy and unfocused. I've heard that they have an extended release kind now though that might work better.