[AJSG]

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?

[dreambeliever128]

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

[mommyjen]

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?

[AJSG]

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

[allentgamer]

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.

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

[AJSG]

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

[Jomar]

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

[InHisHands]

Originally Posted by jo55

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!!!!! How I feel your pain. Hang in there, you're going to make it!

[AJSG]

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

[tayla4me]

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.