Help! Please!
 

AJ is in the hospital 300 miles from home. Her dad is with her.
The doctors have cut her oxy in half, and are giving her slightly
over the equivalent of her oral dose of Dilaudid in the pump,
if I read the online conversion charts correctly.
She's in great pain, worse than before, so bad she can barely
talk. The doctors won't be in until late this evening. DH called
the doctor this afternoon to let him know her pain is so bad.
The doctor told him that she has to get out from the comfort
level of her oral meds (comfort? Does 2 years of not being
able to sleep for the pain and being stuck in a wheelchair,
count as comfort?), that she is getting more than her oral dose
in her pump (true, of the oral dilaudid she was taking, but her
oral oxy dose has been cut from 960 mg a day to 480), and
that they would increase her meds tonight, but they wouldn't
give her enough to kill her. He said it's her last chance and
there's nothing else. He is supposed to be one of the pioneers,
the best in RSD treatment.

Then he said that she is a very anxious young woman, that he
knows it's hard for parents to see their child in pain, that maybe
her dad should go home, and that if we persist in meddling, they
will not proceed any further. We really don't want to meddle, but
we don't know what's going on. AJ is ready to crawl out of the
hospital. I thought they would get the pump working before they
cur her oral meds so much. We don't know what to do. Is she
going through withdrawal? Is the RSD spreading? She's begging
us to listen to her. What do we tell her?

Hi,
 

I just wanted to say hi and to say my thoughts are with AJ. You know I sat in the Drs. office today and had to take extra meds for me to even go in to see him. My RSDS was working overtime so I get a taste every once in awhile what others that are worse off then me are going through.

It makes me so angry about these Drs. I don't think any of them are getting the jist of how much pain RSDS patients are in. There is no way unless they have it that they can even imagine what we are going through.

I don't know if there is actually any amount of medicine that can quite it completely, it doesn't seem like it.

I hope AJ can hang in there until they do something to help the pain. I feel like there are too many Drs. out there that will help us to stick with one that don't. If these don't help, don't give up hope.

Ada

I would imagine she is in withdrawl to a certain extent. WIth drawl alone will cause pain to intensify but it is temporary. Clonodine can help ease that. When I was coming off fentanyl patches I did it by changing to liquid morphine and decreasing it by 1/8 to 1/4 teaspon every week for a few months. Even at a slow titer I felt the effects. Cutting her by half would be uncomfortable. SHe is however on an extremely high dose of oxy and is probably better off in the long run to decrease it. They couldn't get the pump running on her current dose of OXY, that woudl likely depress her CNS to the point of needing a respirator or worse. They have to get her blood levelss down in order to introduce the pump which is going to blast her CNS because it is so concentrated. She sounds young......how old is she?

Thanks for your support. It does help. I do think these doctors
are good, or at least they're supposed to be. They just never
mentioned that she'd have to go through this much pain before
she knew if the pump would work. Tonight they told her even
if she quits, she'll have to wait a couple of days to reverse
everything. The head guy, the one who threatened to dump her
case, is no good with people, but supposed to be very good
technically. His associate is much better with people, but still
can't offer much for her pain.

She is in her mid 20's, but has been in pain since she was 14,
with one brief respite of a couple of years. In spite of that, she
graduated with her class, made it through junior college and
got a job, was planning to move across the country when the
RSD hit again and put her in a wheelchair. It's hard for her to
trust doctors, since every procedure in the past has made her
worse. I know that being in pain can made thinking logically
so hard, and it seems to go on for eternity when you're in it.
I don't think the doctors really know what it's like, or maybe
they just see so much of it they get a little hardened. If only
they could offer more understanding and less ego it would
be so much better.

One thing the doctor said is that oxycontin can actually make
pain worse, so you need more and more, but it becomes a circle.
Does anyone know what that is about? Does anyone know how
long the pain will be this bad?

thanks,
AJ's mom

Yes
 

I was on the long acting ms contin. Pretty much the same thing as long acting oxy. I wasnt on the amount she is taking by a long shot, only 120 mgs a day. I started at only 60 mg a day, but as time went by , and my body learned to tolerate the drug the dose increased.

By the amount you stated she takes I would think she also knows of this. The amount she is taking is pretty dangerous, and as was mentioned there is no pain med that totally covers this pain, at least not one I have tried. Now with that said, the dose I was on would reduce the amount of pain I was in. Thus giving me more quality of life then without the med.

In December my doctor decided she did not want to continue accepting my insurance, gave me 30 days of the pain med, and said CYA! Well I couldnt find another doctor, and then the insurance cut me off, which I am fighting. :rolleyes:

Anyways, in January of this year I ran out. I am here to tell you that I thought I was gonna die. The withdrawals are terrible! So if they cut her dose in half, oh man is she gonna hurt! But, it does get better in time, and if she is getting the pain pump then they will actually not want her on the dose you mentioned. If my memory serves me correctly, they will not want her on any type of long acting opoids. Probably only a break through faster acting, lower dose type.

I would think that in 3 to 5 days she would be getting used to the new lower dose they have her on. If I was the parents I would back the doctors there 100% in getting her dose down. Especially when she is going for the pump, that is awesome. I truly hope the pump works for her, I am too scared to try anything invasive like that because of what you stated earlier. Every time the doctors stick me, or cut on me, the RSD gets worse. No exceptions. So I would rather fight the pain with meds, and have some relief, then to mess around and have it spread before it would naturally.

Although I do understand the insanity of this pain all to well, and know that it drives people right out of their minds with its relentlessness. Sometimes I wish I could just project a 10th of it on my doctors while I am in their presence.

I will be keeping all of ya in my prayers :winky:

Thank you, Allen! Prayers are keeping us going!

I told AJ about your experience with withdrawal. I think it carried a
lot more weight than my words, because you understand RSD. She's
pretty angry today - the doctor just told us she'll be in the hospital
until 3/27, at least, and she was expecting to be home by this
weekend. She says she can't do it, but we're going to help her stick
it out.

I think she came to put her faith in oxycontin, and it's very scary to let
it go, though even at that high dose, she was still in too much pain to
sleep, walk, function. The doctor told her today that 95% of his patients
get better with the pump, and they're going to spend the next week and
a half getting the right meds in it. So I hope he's right, and that this
does work, at least to get her pain back to where it was, but without
the brain-fuzz oxy. They gave her a little local anesthetic for her back,
and I think it helped the back pain a little. The rash she's had is also
fading. She's miserable, but we're praying for her.

AJ's mom

I was just wondering - do the docs for RSD use combinations of a pain med and an antidepressant?

I think many of those with TOS have a combo like that - it seems the anti dep. works with the pain med so there is a better result of pain relief.
many have other meds too-

something for pain
anti depressant or anti anxiety med
muscle relaxer
sleep aid

this is just a generic sample

It seems like the Drs for RSD do try to give their patients a combination like that... in my case: anti-depressants (for sleep), pain medication and then another medication for nerve pain.

I AM PRAYING FOR YOU, AJ!!!!! :hug: :hug: How I feel your pain. Hang in there, you're going to make it! :hug:

AJ does take an anti-depressant, and topamax, and other stuff too.
I don't remember all of it. Thanks so much for your encouragement
and prayers. She hasn't seen the doctor yet today, so not much
change in her condition. Probably good we didn't know how hard
this was going to be - she wouldn't have had the nerve to go. We
sure hope it turns out to have been the right decision!

AJ's mom

I am sorry for AJ
I was in the same position when I had my pain pump put in. I had been on large amounts of narcotic orally and IM. AJ'S dose of Oxycontin is HUGE, even halved it is a large dose. Is she a big girl?
Having the narcotic thorugh the pump and large doses of oral can lead to respiratory depression, this is why they must reduce the orals.
The titration of drugs following a pump does take some time in people who are already taking narcotics as there is definitely a withdrawel problem when the amount is decreased so suddenly.
Drug withdrawel is a painful experience so they should be giving her other drugs to counter the withdrawel process.
I do hope that she will soon feel better, and that it will be all worthwhile.
:hug:

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 :eek:

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. :winky:

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 :winky:

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.:hug:

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

:hug: 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.

AJ's Gonna be just fine
 

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!! :hug: :hug:

thank you
 

All of you have been so supportive. AJ was well enough to really hear some of your comments today, and she really appreciated them. She's down to only 120 mg of oxy, and her attitude now is to stay there until she has what she needs to get back to her life. She knows she will have pain, but she can accept that. She was hoping that she'd have the surgery for the permanent pump this Thursday, but she has to wait until next Monday, which was disappointing, but still OK. A nurse came in today to explain the procedure (a 3" incision to make the little pouch the pump resides in - yikes!) and aftercare. They may keep her longer than usual because we live so far away, and they want to see her again 2 weeks later, so that's another trip. But this thing is going to work! Nothing else she tried did - blocks, meds, drips, everything made her worse, and this is going to work!

AJ's mom

AJSG you will soon have your "old" daughter back. it's just going to take time and patience.

allen...........remember when you were going thru the w/d and i posted to hang in there. well i'm sure you thought i was a nutcase at the time hehehe. now you back to the "old" you again and don't you feel like a new person?

Yes!
 

As far as my mind goes, it is WONDERFUL! I just wish I could have it both ways lol. Have all the clarity, and less pains.

That is great news! I new she would start feelin better. As Duchess says, it is real bad a first and you have a hard time seeing the light at the end of the tunnel. But when you can se just a glimmer, you know it is gonna be OK :)

Been keepin the prayers a goin :hug:

How is AJ doing? I am hoping and praying that she is well! :hug:

She's coming home Tuesday! The doctor is very pleased with her
progress. The permanent pump will be put in Monday afternoon.
They say she will be able to walk again, though it will take a
while, and that though the pain pump is working, it will take
a while before her brain and nerves catch up to that fact. But
it will work! And she's nearly all the way off the oxy, down to
only 20 mg today, I think. By Monday she should be completely off,
and except for some oral meds for a few days after the pump
implant, she should be clear. It's been a rough couple of weeks,
but we're almost there.

AJ's mom

YAY!! :D
Glad to hear she is doing well! I hope to see her around here sometime!! :hug:

I am so glad to hear that AJ is doing well. Please tell her that all of us wish her the very best. Regards, Lil