Last night was awful. It reminded me of the first night I skipped the Ambien. Here is how the last few days have been. Friday I had an Am and PM. Saturday an Am and PM. Sunday only AM. Wasn't a wise idea I should have did half in AM and half in PM it was to soon to just drop down to one all day. Around 5 my pain was sky rocketing and I felt the hives coming on.
There is an argument between my allergist and my therapist that anxiety causes my hives but I say and the allergist aggress stress does not cause hives but it definitely exacerbates them. Every time I have some "break through" pain my hives appear. Like the pictures you saw two days after surgery. I live it so I know, it comes out with the more severe pain.
Back to last night, I was so miserable that I got my stim unit out and tried all the programs again. With no sleep my body is not thinking straight so not sure if I mentioned that I have been sadden since Friday night that the new programs were not helping at all. Saturday I didn't turn on at all. Some of them were actually uncomfortable. So out of desperation I tried again last night and 1 out of the six had changed a little and seemed that it may be helpful. I let it run until I was ready to lie down. I wish I would have used some of the things I read on the internet to be helpful but my mind wasn't working right. It's like there buzzing in my head and legs had control of me. Something holding my eyelids open.Like taking a warm shower or bath. A muscle relaxer. Only if you've experienced this before (withdrawals of a medication) it seems odd what I'm saying. Watching TV didn't help it was only aggravating.
Last time I saw was 3. Turned the clock over then I remembering D tell me good bye and feeling like I had never slept.
Today I took muscle relaxer and the neurontin. I was weak all day. Spent most of it on the couch except for taking a hot shower. That did seem to help. No appetite at all and when I did try to eat to get some energy it went right through me. The one program is mildly helping with the back pain. It's the closest its ever been.
Mr. R is out of town :-(. He great though. He emailed me right back to let me know that he would have his replacement get in tough with me. I got a call form her this morning and she will be in Baton Rouge on Wednesday so we set something up. Hope I'm over some of this other nasty stuff. If she and I are successful maybe I can stay off. Through more readying I know that I'm really being impatient on finding the exact program. But I know that's what their there for and if I need to go once a week I will. It's not like I had the right one and something changed through scar tissue or movement. That's likely also. We just need to get a little closer its so close now but it's complicated to just pick out right one because there are so many combinations to try. I have high expectation that we can find one or two until I reach my 3 month mark which is where most people experience the stimulator to really be starting to help. Hives still around today but in control compared to had bad they can get.
I hope I can sleep a little tonight. I may try leaving my stimulator on. It will take a little fine tuning because lying down makes it increase. Tomorrow I drop down to one half in the AM and nothing in PM. Hopefully only another 36 hours of these symptoms. I need to be strong enough to drive to the clinic to meet with the St. Jude rep. the following morning.
I also made an appointment with my therapist for Thursday morning. I haven't seen her since the week before my surgery. I know that will be helpful with these blues I'm having. I'm really hard on myself. I guess after everything I've been through I expected to just bounce right back and it feels like forever even though its not even been a month. 4 weeks on Wednesday. I need to be more patient.
Thanks for being here. Even though I haven't had many comments I know someone is checking in on me because I can see the page views daily. On the 11th I had the most ever in one day 65. Total to date is 761. Your support helps me know there are others I may be helping.
Sweet dreams to those of you who sleep :-)
2 comments:
Just discovered your blog. I hope you find some relief soon.
I too have chronic pain...neuropathic pain in my Lt shoulder and thoracic spine. Currently, I'm taking neurontin and cymbalta and Butrans patch. It's not perfect, but it's given me hope. I Have you tried Tegretol....it's an old drug, but amazing for pain. It gives me terrible headches. i'm a nurse, but unable to work. I miss having energy and find it hatd to stay postive for my family.
I will contine reading your blog, thanks for sharing
Hi Susan! Great to hear from you. That's what this blog is all about, not just for SCS patients but for people who are suffering from Chronic Pain. This has also become like a journal for me. Like you stated its hard to stay positive for our families and it gets depressing to not be able to play with my grandchildren.
I'm not sure about the Tegretol? Is that what they give heart patients when they are released after surgery? Once after my spinal fusion when I was having a huge flare up that I could not control with the endocet they prescribed it to try. It didn't help, but that was 3 years ago. I have been on both neurotin and cymbalta in past. Also Lyrica. Right now I'm taking Savella and even though it doesn't my back pain but it it definitely controlls my leg pain. Something the Lortab did not.
I continue to be encouraged from my doctor and St. Jude rep that I need to be patient and it will get better and better as time goes on. I'm slightly seeing that now. Believing and being patient is all I can do. This was my last option. I'm happy for you something is working despite the side effects of headaches.
Just curious, how did you find my blog? Thanks for stopping by and hope to hear from you again.
We have to give each other support.
Theresa
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