Terrible Pain... Flare-up?i
Posted , 4 users are following.
I had the spinal cord stimulator placed 3 months back from a really bad accident effecting my leg and back. I was finally diagnosed with CRPS II. Since having the SCS, I've been having great days, but I'll have days where I'm hurting badly and so fatigue unable to get out of bed.
Last night I was awake all night, and in a great deal of pain. I don't understand how I've been able to resolve pain and I'm able to walk...some days, and other days the pain is unbearable?
0 likes, 12 replies
ukila1219 glxpassat
Posted
Hey glxpassat,
I have had a SCS for about 3 weeks now. The Dr and the Rep explained to me that the SCS will not take away all of the pain or symptoms and that I will sometimes have bad days (flare ups). There's no cure or fix for CRPS so we will live in some type of pain for the rest of our lives.
I'm sorry you're having a bad day and hope you get relief soon. I've had a flare up since my SCS and it was horrible. I just tried to stay still as much as possible and take my meds. Do you have cold or hot CRPS? I have both. I put a heating pad on my cold CRPS limb to help with the pain some. There's nothing that is really reliable for the hot CRPS. Hope that help you some.
Ukila
glxpassat ukila1219
Posted
I have the "cold" form of CRPS. it's so weird how having nerve damage... One day the SCS takes care of it and i feel like a million bucks, and other times I'm hurting so much. So it must be different types of nerves playing a role in things?
I'm glad you are having success with your SCS! I'm thrilled with mine, just confussed about how it can block messages at times and other times it can't.
ukila1219 glxpassat
Posted
I have been researching for a couple of months trying to figure out why half my body torching hot and the other half freezing cold. Still haven't received a good explanation other than "the nerves have a mind of their own once damaged/injured".
I questioned that too about the SCS...my mom told me it don't matter she just glad I'm not crying in unbearable pain every day now. But my Dr explained it as the stimulation felt blocks the pain signal to the brain thus making you feel less pain...the more I hurt to turn the device up as needed. I hate this because I'm very thin and when I turn it up it takes control of my arm and I can't move it. But I guess I would rather not be able to move it and be in a little pain vs not being able to move it and in a lot of pain.
I've come to terms that my body isn't mine anymore and the pain and SCS now have the upper hand. CRPS is so poorly understood in the USA that I am just grateful to have someone trying to help me through it. Thats one of the main reasons I joined the message groups, to be in contact with others like me. Although doctors are great, its nothing like being able to talk/chat with someone who knows your pain/what you are experiencing.
I hope that we can stay in touch. There are several very nice people on this site and they're very helpful in answering questions
glxpassat ukila1219
Posted
Its funny after dealing with chronic pain for 3 years that i would be thankful I now have amazing days. But then I get these flare ups and I get so depressed. I guess I get a taste of what life was before and simply don't want to give it up. *sigh* like I mentioned I just need to be thankful for those good days ? and i would love to keep in-touch... There are few people i know that even knows what 'CRPS' is?
christyl87594 glxpassat
Posted
Flare ups are horrible no doubt. I've had my 2nd scs for 8 months now and my flares are just as bad and random than before. No matter the level activity, it does what it wants and the hardest thing of all is finding something that can help ease or help you to distract yourself until it's under control again.
I hope it gets better soon and that I had a sure method to give. I just know that I was kidding myself when my new scs was implanted that the flares would be no more.
glxpassat christyl87594
Posted
I was feeling so good? So I thought all is well... I guess CRPS doesnt work like that! How do people even manage working? I had my hours cut to part time but eventually losing my job because of all this. On my good days, I feel like I can do anything... But out of the blue, I'm stuck in bed. It can be one day, or a week. There's no rhyme or reason. To it. And as I've said so many times... How can the SCS work great one day, but not the other?
christyl87594 glxpassat
Posted
I wish I was able to continue working but this put me on perm disability. Sometimes I wonder if being house bound for the most part causes more pain🤔 On my good days, my medicines make me was dragged down that I sleep a lot. It's a no win situation for me, either it's a good day and trying not to over do it and have bad day the following two days or be a couch potato and have a random flare up the next.
glxpassat christyl87594
Posted
I've been doing awesome working out... However today was an exception as I couldn't get out of bed. But usually I drop my kiddo off at school then run to the gym. I've been getting about 5 days in and i am seeing a huge change in my leg muscles. I wasn't able to hardly walk for the past 3 years...Muscle atrophy! So this is really getting me excited, as I've always been in great shape. Hoping with continued cardio/weights to strengthen my core... Mind, body, & soul; which might help with my flare ups? Maybe it can help you too?
andrea11745 glxpassat
Posted
Dear glxpassat
I don't know how it is either, but unfortunately there is some comfort in knowing we're not alone in these diverse changes. Some days I could almost remember how it used to feel (working full Time at a demanding profession, raising children, going to the gym and jogging 30miles a week), and those are the precious and very rare days and most others are pain centered and hellish.. All I know is the more people I talk to with this the more I'm heading the same things.
Had stimulator put in 4 weeks ago, and had an uneventful recovery with a few tough days but then yesterday out of nowhere, a terrible, awful day filled with tears and begging for it to be over..
I hope you can find some comfort knowing you're not alone(I'm CRPS 2 As well)..
Hang in there and hope your days are soon better than not
Andrea
glxpassat andrea11745
Posted
It's nice knowing I'm not alone! Everyone I talk with, e.g., family, boyfriend does not understand the whole CRPS thing. And how I can feel great and do lots of activities one day, then be stuck in bed for days. Shoot I myself don't understand it either. But what I do know is my leg was badly damaged and i suffered nerve damage. Nerves can create madness within your body.
Together lets keep our chins up!
andrea11745 glxpassat
Posted
Absolutely! It's an insane thing to get your head wrapped around, let alone those who love us. My husband always says 'you look too good to be that sick ' and I never know what to say..
I'm a little over 2 years diagnosed and I'm still learning so much about it, that I question my own sanity most times when things turn so quickly.. But they do and it's well documented thats not unusual. I randomly (and not all the time) send articles to him from this site and others so he can read also what others are goimg thru, especially when it's similar to something I'm questioning or going through and he's so supportive but I know it's hard and confusing to them too.
There is comfort in knowing others are going through it.
You're not alone and please hang in there.. Hope the next few days things settle for you. My heart breaks when I think of others going through that too.
Stay in touch
Andrea
christyl87594 glxpassat
Posted
You inspire me and hopeful to work out again. Before my accident I worked out daily I felt good and positive with life. Honestly I'm very scared to start back to the gym because I'm barely being sent to PT since being diagnosed 2 years ago. I'm scared of the soreness and causing more frequent flare ups, etc. my biggest hurdle is being able to wear a sock and running shoes.
My best friend, my in-laws(including my mother in law whom I was very close to) have vanished and that was very hard to accept. I've been married for 24 years and was so close to my husbands sisters and their families and to this day it very hurtful. My husband has stood beside me through all this.