I know without a doubt she will start feeling better, and that the pain pump will probably work better than just pain pills.

One thing I have noticed is that my brain is alot more clear without the pills. Food tastes better, in fact my waist size increased about 3 inches due to my love of food again lol.

I am hoping I can get my bottomless pit feeling under control here before I turn into the pillsbury doughboy

She will be in a bad mood for a few days a she gets used to the lower doses. The doctors should reduce the dose every few days by a little bit, not by half at a time. Unless they will give her a faster acting opoid to help with the wd's. I know they must go faster because she is in the hospital. This will all be a memory soon, and she will love the new her.

I sure hope you're right, Allen. So far she's not noticing much reduction in pain. They did decide not to reduce her oxy any further for a couple of days, and increased the diluadid in the pump. Tonight the doctors were not very happy with her response, and we were afraid they were going to drop her case. One doctor said she should smile more, and talked about how mental attitude is a big part of pain. I'm not sure what they meant. She's trying hard, but she hurts a lot. Her dad did say today that it was good to have her more alert. When she's not in terrible pain, he said he's beginning to see glimpses of her old personality, in between the crying in pain and the grouchiness. And that's so good to see!

They are giving her IV dilaudid to help every so often, and it does seem to. They want to get her totally off oxycontin. Do you think that another week is long enough to do that? She's supposed to have the permanent pump in 3/26.

Tayla4me, how long did you feel rotten when you got your pump? I know AJ would like to know. She just can't see any light at the end of the tunnel yet. I guess it's only been 5 days, but they sure have seemed like long ones.

AJ's mom

That was the first thing my family noticed was my old self coming back, even though I didnt notice because of the pain at first.

She has to realize that her brain has grown accustomed to a high amount of pain meds. That means the natural pain receptors have atrophied, and in there place receptors that accept pain meds have grown.

Meaning that her brain now has to replace those receptors with new ones that accept her natural endorphins, and the new meds taking the place of the oxy. It is a very uncomfortable time, but really she should try to make the best of a bad situation. As I said earlier, there is no pain med I know of or tried that works to take the pain away. If you ask her if the oxy's really took away the pain, I am sure she would say no because of what she is trying to have done now.

Her body is in a transition, and there really is nothing that she can do about it. It is inevitable that she was going to face this time in wd's, far better it be in the hospital under doctor care, and getting some meds to help with the wd pain.

She could have had what happened to me happen to her. Just run out of meds, and not be able to get anymore. Then face the wd's alone, and under no doctor care.

It was 6 loooong days with no sleep, and loads of pain. Restless legs were driving me out of my mind. First hot and dripping wet with sweat, then freezing, back and forth like this for days! I even was crying out to Jesus the first 2 nights ready to go. It was very intense, and I was scared I was gonna die. It was a full month before I even began to feel a teeny bit normal. It has been a little over 2 months now, and the restless legs quit I would say 3 weeks ago, and the headache 2 weeks ago. Still the body pain is atrocious! But I expected that as the pain was pretty bad even with the pain pills.

So believe me, she is in the very best place. Dont let her ruin it. If they decide to stop and send her home, she may wind up being labeled a drug chaser. If that happens she will find herself in my shoes. Please tell her to make the best of that situation, cause under the circumstances she is in a very good position. Truly!

Keeping you in my prayers

I think I had a strange type of headache for about 3 weeks but it got a little better every day.
I started to become clear in the head after about 10 days and felt as though I was back in the land of the living.
I did have some quite bad nausea as my body got used to the intrathecal morphine, this was also the cause of the headaches, anything which can alter the flow of the spinal fluid can give these symptoms.
She is only early days yet so please reassure her that day by day from now she will feel just a little better.

When I withdrew from the 50 mg fentyl patch + 8 oxycodone/day - it took a weekend in the hospital where I thought I would die from the pain and opiate withdrawal symptoms. It was a different pain than the rsd symptoms - different but just as painful.

It took me 4 months to get completely off all opiates. I first went down to the 25 mg patch, then went from 8 oxy's/day for 1 wk to 7/day for a wk then 6/day for a wk and so on. It was very long but it did work and I finally got off the opiates and the scary feelings from withdrawral ended.

I feel so badly for you and you daughter. It is a horrifiying experience to live thru. I really felt like I was going to die. It's difficult to explain - allen does a great job of it.

Just know that in time the withdrawral symptoms do go away.

Peace and hope,
Lisa

Hi,

I have 3 children, my youngest being 14. To watch your lovely daughter go thru this must be total hell.

I have had RSD for 5 years now. My 2 year mark was the roughest ever. Worse than delievering my 3 children natural childbirth. I have been on just about ever pain tablet from A to Z. But today I am only taking Valium.

I have told ever MD I want the root of the problem.

She has 2 things in her favor. Youth is on her side which she has a higher chance of remission, she also has a very loving mom.

I hope today she is doing better. Love, Roz

Thanks, everybody. I'm so exhausted today I can hardly see straight, much less type, so I hope this post makes some kind of sense!

Today AJ brushed her hair, for the first time in over a week (and she takes good care of her hair normally!) When they cut her oxy dose again, down to 240 mg a day, she didn't panic, and she laughed a couple of times. These are all good signs! She still hurts a lot, more than she did before the surgery, but she's better than she has been the past week. We are beginning to have hope!

AJ's mom

AJ'S mum,

That sounds very promising, she is turning the corner.
I distinctly remember there being a day when it seemed as though the fog had lifted and there was a light at the end of the tunnel. Lets' hope that is where she is at!!
Thinking of you all.

Please let AJ know that there are a lot of people really pulling for her. This battle is a marathon and not a sprint. Be there for her and keep her encouraged!

God Bless,

How is AJ?? I am praying for her and hope everything is well!!