RSD Outreach awareness

Zonegran??............Pacridge's Story

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Pacridge's Story continued.......

Post  byrd45 on Wed Nov 05, 2008 3:01 pm

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Hi!

Those were some tough experiences! Personally I had a lot of the same
experiences with Oxycontin. I ran out of it on a Sat, was trying to get
off of it, but couldn't, called my pain Doc and he said it was my own
fault and he was not going to renew it on a weekend (he turned out to be
a disaster anyway!). I was without it for a few days and literally
thought I was going to lose my mind. I ended up in the ER and the Docs
told me I was basically having the DT's (so please don't EVER let anyone
tell you that Oxycontin is not addictive, it is!!).

As far as the Fentanyl patches, they've been a literal God-send for me.
There is a "bandage" called Nexcare that will hold the patch in place.
You just put it in place over the patch and it holds it on through
almost anything (shower, swimming, etc). I've had RSD for almost 12
years now (also started in my foot and but has spread to almost full
body) and have literally tried almost everything, so yeah, finding the
Fentanyl is a miracle for me. But I can understand why you'd want to
stay away from it after those experiences. It's too bad that your
pharmacist didn't tell you about having a bandage over the patch.

"Pac", please be very careful about the way you feel about hurting your
family through this. It sounds very much like they love you, that is NOT
the same thing as "putting up with you". God knows we put our families
through SO much with this. I'm a very strong practicing Catholic, (I
know a lot of other people on the board are spiritual too). As difficult
as what we are going through is, we know that we're putting our families
through even worse times. But I do believe that God only gives us what
we can handle. That goes for out families too. By the way you talk you
love your family very much and it's obviously the other way around too.
It's amazing how we have to learn to take less control and let others
help us through a situation like this. Maybe that's what God needs us to
understand.I read something the other night that might help:

" Both character and holiness are found when our need for Jesus is extreme."

I think He wants us to need others too, and I know they need us to need
them too. Sorry I didn't mean to get on my soapbox, but I don't know how
I'd get through this without my faith. I finally learned (after MANY
years of this) that my wonderful husband Joe really needs me to need
him, and I was hurting him more by not letting him help. Hope this helps.

So, I'm sorry there was a while when I wasn't on, just cause I needed a
"break". I was one of (if not the) first members on this board. Thank
God for Robyn, huh??!! She's the best! Because I was out for a while I
don't know that much about a lot of the members. Tell me about your
family. How old is your daughter? What's her name? How long have you
been married? Let's her fun stuff!

I'm really glad to hear that the Zonegran is helping. We're all so
individual with what helps and what doesn't. But the important thing is
that anything that gives us even the slightest bit of relief and isn't
illegal or immoral is what we should go with. Hope it keeps helping.
Believe it or not I thought I've tried them all, but I never tried that one.

Good luck, have as pain free days as possible (to all!), and if they're
not pain-free then find something to make you smile(maybe that's the
family that's trying to give you that smile!), and remember things
really could be worse. We could all be going through all this and be in
the middle of a war and having our homes and families torn apart like in
the Middle East. So see, there's always a reason to Thank God!

Love,
Therese





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Recommend Delete Message 3 of 4 in Discussion

From: Pacridge Sent: 7/25/2006 1:44 PM
Somehow your message seems to have been messed up. Thanks for the reply.

Anyway, to clarify things, I'm not thining about hurting myself. My thoughts were much more passive. I've always considered doing one's self in a cowards way out. I wouldn't and won't do that. I just got to the point that if it happened it happened. I was tried of hurting and just didn't care at that point.

Since getting off Fentynol and changing my diet I feel much better. I'm glad to hear Fentynol works well for you. We all so different and respond to Rx's differently. I strongly suggest for any who haven't tried the 4-F's diet they should. The change for me has been really good. My ability to be active has increaased, so has my mood. I still hurt but not as much. Which has allowed me to get more sleep.

My Wife and I have been together for 27 years, married for 23 of them. We have one daughter, she's 20 and will be a Junior in the Air Force ROTC this fall.


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Recommend Delete Message 4 of 4 in Discussion

From: byrd45 Sent: 8/4/2006 12:04 PM
Hi Pacridge,
How have you been? I just read your post and feel so bad to hear what you went through. Withdrawal is awful I went through it coming off the Neurontin and that was with the doctors help. I imagine coming off cold like that would have been a horrible nightmare. I feel for you having to go through that. I have had thoughts like that too about dieing and my family. That's the depression from the RSD talking though. That was the main reason I stopped taking Neurontin I was so depressed on it. Dr. Hooshmand's diet has helped me alot too! I follow it as close as possible and also feel much better since changing my eating habits. It has also helped me to drop the weight I gained from being on Neurontin.I am so glad it is helping you too. Glad to hear that things are alot better now for you. Talk to you soon!
Love,
Robyn
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Zonegran??............Pacridge's Story

Post  byrd45 on Wed Nov 05, 2008 3:01 pm

From: Pacridge (Original Message) Sent: 7/24/2006 1:23 PM
Anyone else out there on Zonegran? I’ve had RSD in my foot since 2002. I’ve been on several Rx’s in this class, including Neurontin. About two years ago my pain management Dr. switched me from Neurontin to Zonegran. The difference was and has remained significant. It hasn’t been a cure by any means but the reduction in swelling and pain is very noticeable. I’d say I get 30-40% better results with Zonegran as I did with Neurontin.

Also- I note many on here state they’re on Fentynol (sp?) patches. I was on them for several months. I had an extrememly difficult time with them. I could never get the patch to stay on for the full 72 hours. I found some waterproof first aid tape that helped and did manage to obtain a normal cycle of use. I apply the patch put the tape over it. The next day after showering I’d remove the tape and reapply. One day while removing the tape I unknowingly broke the patch open. I reapplied the patch and went to bed. I woke up several hours later with extreme sweating and difficultly breathing. I noticed that if I didn’t concentrate on breathing I didn’t breathe. I checked my pulse it was 130-140. Keep in mind I’d been sleeping (well trying to sleep, I never sleep well), it should have been much, much lower. I checked my BP it was all over the place. One check had it at 212/144 and another at 165/93. All readings were high but none were stable. Obviously I knew something was wrong but at this time I still didn’t know why or what. I went in to use the bathroom and that’s when I noticed the area around my patch was red and swollen. I removed the patch and found the gel inside was leaking directly onto my skin. I was OD’ing!

I took the patch off and went back to bed. I remember thinking “I wonder if I’m going to wake up in the morning?” At this point I was basically to the point of simply being so tried of hurting I just didn’t care any more. I remember thinking “ screw it, I got life insurance. If I go my wife and daughter will be fine and they’ll be able to get on with their lives.” I’m sure many on you know how much RSD changes and messes up your entire life and the lives of those around you. I figured if I didn’t wake up I wouldn’t hurt anymore and they wouldn’t have to put up with me anymore. Kind of a win-win. That was the last time I used Fentynol. The next three weeks were a brutal, completely awful experience. Withdrawls from this stuff is no picnic. Add that to the pain of RSD and you’ve got a recipe for misery. I spent at least two weeks in the house on the couch. Couldn’t eat or sleep. Sweating hot one minute and freezing cold the next. I know from researching on the net I should have went in and at least got some help from my Dr to slowly reduce the dose and then go off. I was concerned about him possibly checking me into a 24 hr care center, which I wanted no part of. I also was concerned about him dropping me as a patient. As many of you know having your Dr. drop you leaves you with few options. I’ve never had a Dr. do that, don’t want to.

That was several months ago. I’m currently taking Dilaudid for break through pain and lidocaine patches. Since this episode I’ve changed my diet completely. I’m basically on the 4 F’s diet- http://www.rsdrx.com/four_f's_diet.htm. I’ve noticed a big change in my pain level and just overall health. I’m more active and I require less medication. It’s no cure but it is a step in the right direction, least it has been for me. I won’t say I enjoy getting up every morning, I still hurt. But I haven’t thought not getting up would be a good option in a long time.

Hope some of you find this info helpful. Hope everyone is having a low pain day.

Pac




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> Subject:
> Zonegran?
> From:
> "Pacridge" <pacridge@centurytel.net>
> Date:
> Mon, 24 Jul 2006 10:23:34 -0700
> To:
> "RSD Outreach" <RSDOutreach@groups.msn.com>
>
> To:
> "RSD Outreach" <RSDOutreach@groups.msn.com>
>
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> New Message on RSD Outreach <http://groups.msn.com/RSDOutreach>
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> *Zonegran?*
> <http://groups.msn.com/RSDOutreach/_notifications.msnw?type=msg&action=showdiscussion&parent=3&item=5284>
>
> *Reply*
> <mailto:RSDOutreach@groups.msn.com?subject=Re%3A%20Zonegran%3F>
>
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> <mailto:pacridge@centurytel.net?subject=Re%3A%20Zonegran%3F>
> *Recommend*
> <http://groups.msn.com/RSDOutreach/_notifications.msnw?type=msg&action=recommend&parent=3&item=5284>
> Message 1 in Discussion
>
> From: Pacridge
> <http://groups.msn.com/RSDOutreach/profile?user=Pacridge>
>
> Anyone else out there on Zonegran? I’ve had RSD in my foot since
> 2002. I’ve been on several Rx’s in this class, including
> Neurontin. About two years ago my pain management Dr. switched me
> from Neurontin to Zonegran. The difference was and has remained
> significant. It hasn’t been a cure by any means but the reduction
> in swelling and pain is very noticeable. I’d say I get 30-40%
> better results with Zonegran as I did with Neurontin.
>
> Also- I note many on here state they’re on Fentynol (sp?) patches.
> I was on them for several months. I had an extrememly difficult
> time with them. I could never get the patch to stay on for the
> full 72 hours. I found some waterproof first aid tape that helped
> and did manage to obtain a normal cycle of use. I apply the patch
> put the tape over it. The next day after showering I’d remove the
> tape and reapply. One day while removing the tape I unknowingly
> broke the patch open. I reapplied the patch and went to bed. I
> woke up several hours later with extreme sweating and difficultly
> breathing. I noticed that if I didn’t concentrate on breathing I
> didn’t breathe. I checked my pulse it was 130-140. Keep in mind
> I’d been sleeping (well trying to sleep, I never sleep well), it
> should have been much, much lower. I checked my BP it was all over
> the place. One check had it at 212/144 and another at 165/93. All
> readings were high but none were stable. Obviously I knew
> something was wrong but at this time I still didn’t know why or
> what. I went in to use the bathroom and that’s when I noticed the
> area around my patch was red and swollen. I removed the patch and
> found the gel inside was leaking directly onto my skin. I was OD’ing!
>
> I took the patch off and went back to bed. I remember thinking “I
> wonder if I’m going to wake up in the morning?” At this point I
> was basically to the point of simply being so tried of hurting I
> just didn’t care any more. I remember thinking “ screw it, I got
> life insurance. If I go my wife and daughter will be fine and
> they’ll be able to get on with their lives.” I’m sure many on you
> know how much RSD changes and messes up your entire life and the
> lives of those around you. I figured if I didn’t wake up I
> wouldn’t hurt anymore and they wouldn’t have to put up with me
> anymore. Kind of a win-win. That was the last time I used
> Fentynol. The next three weeks were a brutal, completely awful
> experience. Withdrawls from this stuff is no picnic. Add that to
> the pain of RSD and you’ve got a recipe for misery. I spent at
> least two weeks in the house on the couch. Couldn’t eat or sleep.
> Sweating hot one minute and freezing cold the next. I know from
> researching on the net I should have went in and at least got some
> help from my Dr to slowly reduce the dose and then go off. I was
> concerned about him possibly checking me into a 24 hr care center,
> which I wanted no part of. I also was concerned about him dropping
> me as a patient. As many of you know having your Dr. drop you
> leaves you with few options. I’ve never had a Dr. do that, don’t
> want to.
>
> That was several months ago. I’m currently taking Dilaudid for
> break through pain and lidocaine patches. Since this episode I’ve
> changed my diet completely. I’m basically on the 4 F’s diet-
> http://www.rsdrx.com/four_f's_diet.htm. I’ve noticed a big change
> in my pain level and just overall health. I’m more active and I
> require less medication. It’s no cure but it is a step in the
> right direction, least it has been for me. I won’t say I enjoy
> getting up every morning, I still hurt. But I haven’t thought not
> getting up would be a good option in a long time.
>
> Hope some of you find this info helpful. Hope everyone is having a
> low pain day.
>
> Pac
>
>
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