What is "Normal?"
 

I have had my SCS for five weeks now, and have experienced a 60-75% reduction in pain. Not only was I able to get off Oxycodone, I've been weaning off of the Hydrocodone for the past week. My goal was to be all the way off of it in a couple of weeks. So far, so good.

Until today.

It started yesterday with just a nagging ache in my back. I thought it was just the position I had been sitting in to cross stitch. Last night when I went to bed, I turned my stim UP higher than I have been using it because of my increased pain. When I woke up for the second time around 3 am, I was in excruciating pain. It wasn't unfamiliar pain - it was my old familiar pain, and boy, was it bad. I got in the recliner, and that did nothing to alleviate it at all. I'm contemplating taking my normal dose of hydro, instead of the half-dose I've been taking.

But here is my question. I know that I'm still an SCS newbie. I don't know what is normal, and what isn't. So is it normal to be going along just fine, and then have such horrible pain? To me, it feels like a set back - like I've done something wrong (which I haven't, that I can think of). Does this maybe mean I just need to call my rep for a re-programming? Should I be concerned? Or, are bad days every now and then just the norm?

Ok - that was more than one question, sorry!

Thanks for any insight that y'all can give. I'm trying not to be discouraged, but it's hard. We are supposed to go to our daughter's baby shower on Saturday, which is an eight-hour drive there back, and I was so excited that I was feeling better and was going to be able to go. Now just the thought of walking into the kitchen to get my morning coffee seems daunting.

Blessings to all.

=Becky

dear friend
if you don't mind me saying
i still opt out to have one
that is me
if you contacted the rep
should you not receive at least
a call
i would not want to be in the pain
again that is me
however if it is unbearable
take the meds
and fix what has to be fixed
so sorry to hear of your pain
i understand it the "monster"
pain
take care

Fix what has to be fixed
 

Thank you, dear Eva, for your wise words. I will take the pain meds that I despise, and that I have worked so hard to get away from.

I did call my rep and will see her about my programming tomorrow.

I'm just trying to figure this all out . . . I want to have realistic expectations, thereby avoiding crushing disappointment. If truly horrible days every now and then are normal, then I will expect them - and not be destroyed by them.

I just don't know what is normal . . .

=Becky

Dear Becky
The greatest thing I read
is the 60-70% coverage
that in itself is awesome

my response as the fix it thing
I just read how much tweaking
so many have to go through

My concern is
and as my doctor tells me
not to allow any kind of pain
get out of hand

respectfully your

Hey
 

Hi Beckie
My rep and PM doctor have both told me that nearly everyone who receives an implant wants to be completely free of the drugs, and while it's an excellent aim, the reality is most of us will still need to continue taking of the dugs we have grown to hate. So, in my limited experience, I have been told when the pain begins to swing, take the medication and don't let it get to screaming stage, because once it reaches there, it's much harder to get a handle on it.

Probably not the news you want to hear, but remember, the implant hasn't cured us of our original condition, it's another aid to help minimise the pain and take control of our life.

I do hope you enjoy the weekend and the drive there not as tough as it sounds.:hug:

Becky
 

Pam is correct in suggesting not to let your pain get out of control. Take the meds you have available to you. Hopefully you are simply dealing with some breakthrough pain. I get this a lot, especially if I've over-extended myself the day before.
Like you, I also get about 70% pain relief from my unit, which is fantastic, but it still leaves the other 30% needing some kind of pain relief to fall back on.

For me, there have been times when I've turned my unit up higher during the night because of breakthrough pain and the next morning I feel even more 'sore', as tho the higher stimulation did a number on my nerves and muscles.

It's good that you called your rep. Let us know what they say.
Try not to get discouraged, altho it's understandable if you do. Our bodies can be very unpredictable that's for sure.
Even the weather has an effect on my pain levels!

Take your pain meds to the shower and don't be afraid to take them. That's what they are there for.

I hope you have a joyful time on your trip! 8 hrs is a long time on the road I know. Take frequent breaks to stretch out. Bring pillows. Bring 'muscle rub' relief if it's ok for you to use.
Wishing you the very best and looking forward to an update!

Rae
:grouphug:

the BOMB
 

Rrae...I could not have said it any better!!!! U R the bomb!

Stay ahead of pain...it will scramble your brain for real!!

Pam and Rae
 

Thank you, too, for your replies. It truly is comforting and encouraging to have everyone's input, and to not feel so alone - floating in an ocean of uncertainty while the sharks of pain and sleepless nights circle around. :Sinking:

Eh . . . not my best word picture, but I'm kinda tired!

Pam - I know you're right. As much as I want to be free of the pain meds, it will likely never happen. Instead of being discouraged by that, I will instead choose to be encouraged by the fact that I am now taking WAY less of them. I will choose to be thankful for pain relief - no matter how it might be achieved. Thank you for the reality check - I really needed it!

Rae - I really found it interesting that you had had a similar experience of increased pain after turning your stim up at night. I hadn't even thought of that as a possibility, but it makes complete sense how that could possibly cause a problem.

I did meet with a rep today. My rep is about an hour away, but the person who trained her works closer to my neck of the woods, and I met with her. She is AMAZING. I feel like she did a great job on my programming, and at a much lower power setting, which means maybe I won't have to charge every single day! But, the real test will be tonight when I go to bed. I DREAD going to bed every night, as I know that it will be fitful, restless, and that I'll wake up in pain. I'm so thankful to be staying in bed longer than I was able to do before my SCS, but I truly hope to one day just be able to go to bed like a normal person, snuggle down in my pillow and quilts, and just dream the night away - awakening with a smile on my face instead of a groan on my lips.

We are really excited about the trip on Saturday, and seeing our daughter! She is such a teeny tiny little thing, and she is so cute with her little baby belly! My hubbie and I usually trade out driving - I'll drive up and he'll drive back - but he said that this trip I'm not allowed to do any of the driving - that my job is to sit back and relax. He is so sweet! We wouldn't be having to make it a one-day trip, except we have about 100 baby chicks right now, and those little buggers eat a LOT! We've got to get back home to take care of them, as well as the rest of the chickens. So we will definitely be taking some "stretching" breaks on the way up there and back, and I'll make sure to pack my pain meds - and take them as needed.

Wishing everyone a blessed - and pain free - tomorrow! :grouphug:

=Becky