hugs Desi
 

http://www.fda.gov/Cder/drug/infopag...ragesicPPI.pdf

http://www.bchealthguide.org/kbase/t...342/detail.htm

http://www.medicinenet.com/fentanyl-...al/article.htm

http://www.springerlink.com/content/k87661525g307087/

http://search.healthcentral.com/quer...pain&x=10&y=11

Gosh I'm so sorry Desi!!! I' didn't mean to scare you out of your wits! :eek: By "big gun" i meant "really powerful". Fentanyl is usually only prescribed when all the other opioids have failed.

And by 'don't go cold turkey or it could kill you' - actually - i really did mean that part. My friend with RSD went through horrible withdrawal when an extremely dumb nurse told her it was ok to just stop, rather than taper, off the fentanyl. She had a huge psychotic episode and her blood pressure and heart rate went berserk, and could have caused heart failure. This is true about any powerful narcotic drug though especially one you have been on for a long time.

People with RSD need to be especially careful to taper so as not to put extra stress on their hearts. Because RSD creates inability to regulate body functions such as temperature and blood pressure, people with RSD more likely to have stroke and other cardiac events in the later stages.

I'm so sorry if I sounded panicky, but it's only because I feel so protective of all my friends with RSD!! please forgive me...
:hug:

Hi all!
First, Avery- no cold turkey! I know that at times you get impatient with the weaning off process, but you at least have to step down some before going off of a medication completely. It gives your body time to get used to not having as much opiates in your system. Or any med for that matter! And if you go off of a med too quickly, your pain will get worse! This is because your brain stops making as many endogenous, or natural, opiates. It figures, hey- I've got all of these drugs coming in already, why would I expend the energy to make my own? (The brain is lazy!) So if you stop too quickly, you not only cut off the drugs coming in, but your brain isn't making as many of the natural counterpart. So you're not only down the artificial meds, but you're down from your natural levels of neurotransmitters! So the result is increased pain (if we're talking about painkillers) or increased depression (if you cold turkey anti-depressants.)

Also, I'm on a really high dose of Cymbalta too. It's the only anti-depressant that has ever worked for me. I've been through them all! And yeah, the carb cravings make me eat too much. But instead of Lyrica, I'm on topamax. It's a GABA agonist like Lyrica, which means that it increases the levels of the neurotransmitter GABA. (I'm assuming that you have no background in neuro, so if you do and this sounds condescending, I'm sorry! :o ) But what I have found is that Topamax and Cymbalta are the perfect combo! Topamax suppresses your appetite and Cymbalta increases it. So somewhere in the middle it kind of levels out. Talk to your doctor about it. Neurontin and Zonegran are other GABA agonists, but I have found that they have many more side effects than Topamax. When I was just on Topamax and not Cymbalta, I had to remind myself to eat- I'd set a little alarm on my cell phone! I could literally forget to eat for a whole day.

I just wanted to say that I am so sorry for your loss of your little angel. When I was younger my best friend's little brother died of a brain tumor when he was 10. We also lost his other little brother from leukemia when he was 7. While I can never comprehend what it is like to lose your OWN child, I've got a little window into what it is like, and what it did to the people that I love. If you ever want to talk, just let me know. Also, my degree is in neuroscience and I'm a nursing student, so if you ever need help navigating the technical world of RSD just let me know!

Desi! Yeah fentanyl is a big gun! That's what they put you on during surgery for surgical pain. But all of the opiates are pretty big stuff. But if you use it properly you should be fine. It's just like anything else- the horror stories happen if you misuse it, but if you're responsible with it everything goes fine.
Linnie

Hello,

It's me again:)
Molly, Fentanyl is a very strong pain medication and for those who are not opiate tolerant they sure can kick like a mule:eek:
It seems that those who have been requiring heavy duty meds over a long period of time do not often experience the extreme "knock out affect" that Fentanyl can produce.
I just wish that more of our doctors would learn better how to titrate out drugs when starting on them and how to wean when coming off:(
Some just don't think:mad:
Love Tayla:hug:

Thank you Linnie and Molly, Wow I don't know what day I am in anymore....but now scared to try taking any breakthroughs or Opana Er's for the fact that I know that you need to be on Morphine or something like that before stepping up to Fentanyl, or Opana. I was on Avinza for quite some time, then on to Fentanyl....but could never keep my eyes open (would wake up every hour or so, which I also do now because of the RSD pain....but would constantly fall asleep.) I really don't mean to sound like I am just complaining, I just could not take the way the meds made me feel anymore. I was like a zombie, did not want to see anyone, talk to anyone, didn't care how I looked, or what anyone thought....didn't even care if my house was clean. I am still feeling very jittery, weird skin sensitivity almost like if you touch my skin i am bruised, nausea, headaches (which they are checking me for brain tumor....everyone keep me in your prayers on that one please), very very moody....I thinkin I really screwed up and don't know which way to go now. I do hurt severely from the RSD but with all these drugs I just feel like a zombie with the flu and my arm still hurts really bad. They don't seem to help me much anyway.

Linnie what is topamax??? My dr seems to like just a few drugs and that is what he uses. ie...Fentanyl which let me just say when he changed me from that to Opana ER I still had withdrawals for a little over a week and it was awful, but he said I would just have to deal with it, and it the long run I did make it through all of that. Which is why I got the bright Idea that I could do this all bymyself. He also seems to love Opana, Cymbalta, and Lyrica....does not really talk to me of much else even when I ask if I can go down to something that makes me actually feel like a human. He says"you have RSD you will feel like this for the rest of your life".....I just can't believe that is true. Yes I amy have pain but I refuse to give up on life. Thank you all sooooo much and love and hugs to all!!

Avery

Topomax is used mostly for epilepsy. It is now used for nerve pain also. Especially when Neurontin & others don't work.

The people I know who take it swear by it. I tried it but I had bad reactions to it so went back to Neurontin. It helps with the nerve pain, but I do fall asleep alot due to the amount of pain meds I do take. But since I don't work that is ok. My doctor also prescribes me Provigil to take when I want or need to stay awake. I could take them every day. They usually give this med to people who have narcolepsy. And Provigil does work really well. I only have to take half a pill twice a day & I can stay awake fine.

Good Luck,
DebbyV