Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-25-2007, 11:55 PM #31
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Default Thanks

I do feel so much better since I joined this site. I had my dad over today that lives about 4 hours away by car and 6 hours by Harley/Indian (that's what he rides). He rode out here and we spent about three hours of time together. I haven't done that with my father in I don't know how long!

After he heard that he would be having his first grandchild, he has been very different. When he arrived I showed him my pictures of my RSD and showed him this site. He read all the way through these posts. He is an alcoholic and has been sober for almost 7 years. He has been attending 6 AA meetings a week for those 7 years and reaches out to people and sponsers them daily. It has changed his life.

Long story short, he read ALL of your posts (relating very much to VIC) and thanks GOD that I have found support. He saw where I lived for the 1st time and saw what I was going through. I think it broke his heart reading all of this because he doesn't have an attention span, and he was glued to the screen.

For the 1st time he sees that his first born is not a Party-Hardy, Crazy, In-Trouble, drinking/drugs, kid anymore. He knows the seriousness of RSD now that he sees IT. I felt so good when he was here and so loved. Like I said, for the 1st time in a long-time, and it felt good.

Thanks to all of the support. I feel understood and loved by all of you and now by my dad. I feel GREAT! Now I need a good ultrasound on Friday and we are rockin!

Thanks!

BTW, VIC there is a good possibility that I could have twins! LOL
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Old 04-26-2007, 12:41 AM #32
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Does that mean you'll give us one?
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Old 04-27-2007, 10:03 AM #33
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Ok Vicc you asked for it...the kids are coming your way...lol. My husband loved your post about your wife and the gun...But truth is I could never part with any of them, the 12 year old is already thinking she is grown up (haven't figured out how to stop them from growing). I am nowhere ready for the teenage years. (maybe Vicc can take them then). I remember all the evil things I put my parents thru...I have a feeling it's finally going to come back and bit me in the ______.
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Old 05-04-2007, 06:17 PM #34
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Default Found out I'm PG 2 wks ago, and I'm on fentanyl (or was...)

I hope it is not offensive for me to have joined your group...I was doing a search for "pregnant on fentanyl" and it brought me here. I don't have RSD...I have a bladder disease called interstitial cystitis (IC), fibromyalgia, arthritis, and a host of other physical problems, but those are the ones that cause the most pain.

Anyway, I've been on 150 mcg fentanyl w/ lortab for breakthrough pain forever (it seems). My husband and I checked w/ my OBGYN and my pain doc about a year or so ago, and both said all my meds (I take a bunch of other junk, too) would be okay during a pregnancy. Imagine my shock when I notified them I was PG, the pain doc deferred to the OB re: what would be okay to take, and the OB says the lortab is okay but the patches (that I depend on to FUNCTION) are out. They didn't even ease me off of them...I got the old cold turkey treatment. I went cold off of Oxycontin before, and it was bad, but nowhere NEAR as bad as this. I am in agony, and haven't slept in several days, and have been searching high and low for info b/c we are so worried that the meds may have hurt the baby.

To add insult to injury, I started bleeding a bit after a few hours of withdrawal...we are sure it is from the stress my body was under. It wasn't much, and it stopped after about 16 hours, but it still freaked us out. My progesterone levels have been low (progesterone is like the glue that holds your PG together) and I'm on a supplemental cream, but they had told us if the cream didn't help, it was likely I would miscarry (and they can't do anything about it at this point).

Anyway...I don't want to scare you, I just wanted you to know you are not alone, b/c I have felt very alone (except for my husband, but it's not the same since it's not his body...all the guilt I feel, that he tells me not to have...he is really awesome). My advice would be that if they make you go off of your patches, BEG to be weaned off instead of just stopping suddenly, b/c the tremendous stress on your body cannot be good (as I've demonstrated).

Also, I agree w/ the people who say it probably hasn't hurt the baby...I can't find anything anywhere about anyone having a child w/a birth defect due to fentanyl, and I think one of us would find it if it was out there, b/c I have found info on BD for several other meds. As my friend said, the doc just wants to CHA. I really like & trust my ob, but I am still very frustrated. I did find that some studies were just released 4/2007 on this topic, but I can't find the full text of the studies. The gist of those seems to aim more towards women using fentanyl at the end of their PG for back pain, labor pain, etc. and the effects on the newborn (not good...not defects, but their breathing is not good & strong, and the poor little things go through WD). I wish I'd known more before I got PG, so we could have formulated a better plan. They did say the lortab is okay, but it doesn't do near as much as the patches.

I hope all is well with you...our thoughts and prayers will be with you & your family.

Last edited by 3blessedbe; 05-04-2007 at 06:27 PM. Reason: accidentally posted before I finished
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Old 05-04-2007, 07:46 PM #35
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Default I'm Back!!

Hi everyone...

I am back. I am sorry that I have been MIA for a few weeks. I am 7 weeks prego and had to be put on Progesturone till 15 weeks. My levels were low also.

My OB is happy that I stopped all meds except for my Morphine Sulphate and 75mg patches of Fentanyl. He seems to think that it's okay. I am seeing my pain doctor on Monday and he and my OB will be working together on this. I tried to take off my patch last night and couldn't do it. I woke up this morning already detoxing and in pain. I have been through so much stress lately and I can't do that to my body.

I am still concerned that the meds will affect my baby, but I am happy that the person above me gave some good advice. Thanks so much!

Love you all,
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Old 05-04-2007, 07:49 PM #36
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Quote:
Originally Posted by 3blessedbe View Post
I hope it is not offensive for me to have joined your group...I was doing a search for "pregnant on fentanyl" and it brought me here. I don't have RSD...I have a bladder disease called interstitial cystitis (IC), fibromyalgia, arthritis, and a host of other physical problems, but those are the ones that cause the most pain.

Anyway, I've been on 150 mcg fentanyl w/ lortab for breakthrough pain forever (it seems). My husband and I checked w/ my OBGYN and my pain doc about a year or so ago, and both said all my meds (I take a bunch of other junk, too) would be okay during a pregnancy. Imagine my shock when I notified them I was PG, the pain doc deferred to the OB re: what would be okay to take, and the OB says the lortab is okay but the patches (that I depend on to FUNCTION) are out. They didn't even ease me off of them...I got the old cold turkey treatment. I went cold off of Oxycontin before, and it was bad, but nowhere NEAR as bad as this. I am in agony, and haven't slept in several days, and have been searching high and low for info b/c we are so worried that the meds may have hurt the baby.

To add insult to injury, I started bleeding a bit after a few hours of withdrawal...we are sure it is from the stress my body was under. It wasn't much, and it stopped after about 16 hours, but it still freaked us out. My progesterone levels have been low (progesterone is like the glue that holds your PG together) and I'm on a supplemental cream, but they had told us if the cream didn't help, it was likely I would miscarry (and they can't do anything about it at this point).

Anyway...I don't want to scare you, I just wanted you to know you are not alone, b/c I have felt very alone (except for my husband, but it's not the same since it's not his body...all the guilt I feel, that he tells me not to have...he is really awesome). My advice would be that if they make you go off of your patches, BEG to be weaned off instead of just stopping suddenly, b/c the tremendous stress on your body cannot be good (as I've demonstrated).

Also, I agree w/ the people who say it probably hasn't hurt the baby...I can't find anything anywhere about anyone having a child w/a birth defect due to fentanyl, and I think one of us would find it if it was out there, b/c I have found info on BD for several other meds. As my friend said, the doc just wants to CHA. I really like & trust my ob, but I am still very frustrated. I did find that some studies were just released 4/2007 on this topic, but I can't find the full text of the studies. The gist of those seems to aim more towards women using fentanyl at the end of their PG for back pain, labor pain, etc. and the effects on the newborn (not good...not defects, but their breathing is not good & strong, and the poor little things go through WD). I wish I'd known more before I got PG, so we could have formulated a better plan. They did say the lortab is okay, but it doesn't do near as much as the patches.

I hope all is well with you...our thoughts and prayers will be with you & your family.
Thanks so much for your advice. I am sad that my baby will probably go through Detox, but Naloxone is said to be safe and harmless for the baby, when he/she comes out. I am hoping this 411 is correct.

So, I am still on the patches and Morphine, but I am going to just use the patches 75mg from here on out. Then, that is all I will be on...

Thanks again,
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Old 05-04-2007, 08:13 PM #37
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The withdrawals of the mother are a lot more dangerous to a baby then the drugs are. That said, the drugs really arent that healthy for the kid either

That was a stupid thing those doctors did making you go cold turkey, I would say they should be responsible if you miss carry that child. There was no reason why they couldnt take you off your meds in a safe manner. The stress of cold turkey is just to much for a small little fetus to go through.

I have you in my prayers that the little one comes through with flying colors.

Since we are on the topic of babies.............I am a grandpa again!!
My daughter gave birth to Brooklynn today! 6bs, 20 inches, dark hair with streaks of blonde. Mom and baby are doing well!
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Old 05-04-2007, 10:33 PM #38
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Hi Heather,
Have you tried Bach rescue remedy?? (it is all natural)it comes in a spray or drops? you can get it on line or in most health food stores.(GNC) puts me out like a light!! I am praying for you and your baby Heather!! demand to see a doctor ASP Love, Desi
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Old 05-05-2007, 02:43 PM #39
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Default Thanks so much!

Quote:
Originally Posted by Desi View Post
Hi Heather,
Have you tried Bach rescue remedy?? (it is all natural)it comes in a spray or drops? you can get it on line or in most health food stores.(GNC) puts me out like a light!! I am praying for you and your baby Heather!! demand to see a doctor ASP Love, Desi
I have never heard of this before. But, I will look into it. Thanks so much. I see my Pain dr on Mon. So, I will let you know what happened.

Thanks
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Old 05-05-2007, 02:46 PM #40
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Quote:
Originally Posted by allentgamer View Post
The withdrawals of the mother are a lot more dangerous to a baby then the drugs are. That said, the drugs really arent that healthy for the kid either

That was a stupid thing those doctors did making you go cold turkey, I would say they should be responsible if you miss carry that child. There was no reason why they couldnt take you off your meds in a safe manner. The stress of cold turkey is just to much for a small little fetus to go through.

I have you in my prayers that the little one comes through with flying colors.

Since we are on the topic of babies.............I am a grandpa again!!
My daughter gave birth to Brooklynn today! 6bs, 20 inches, dark hair with streaks of blonde. Mom and baby are doing well!
Congrats grandpa!!!

That is so cool, and I am so happy for you.

I am not going to go off my meds. My dr's haven't said that yet. My OB said that you have to remember yourself right now also. So, that is what I am doing. Of course, no meds is better, but then I suffer also.

There is a drug called Naloxone that helps the baby when they are born. It is an iv and it only takes minutes. It is harmless also. So, I am counting on that right now. I know is sucks, but I cannot risk myself either.

Thanks and Congrats again!
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