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 02-13-2010, 10:34 PM #11
Wilbyfree Wilbyfree is offline
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Default Hi KS

I like you also have a severe sensitivity to medicine and have been left in the dirt with pain. For the first time in eight years, my doctor put me on oxycontin 20mg twice a day. I had the prescription for three days before taking it. Finally, it was a Saturday, my husband was home and I took the little shooter. Nothing....I couldn't beleive it, so about six hours later, I took a vicodin, which I am prescribed for breakthrough anyhow, I just couldn't stand the pain. A few hours later, I took another oxycontin as scheduled and I noticed my level had gone down. Now, two weeks later, it doesn't affect me at all, it is like taking a placebo, but my pain had kind of leveled out. I still take the vicodin for breakthrough twice a day.

Now today I had a really, really bad day, so my answer to your question is no I have not tried morpine but right now I would like to. LOL. They say the longlasting medications are better for this type of pain. Like you, I was afraid to try them, but overall, I think it has reduced my pain. Good luck, keep yourself calm, and just the medication do its job. Let us know how this works for you, I will keep you in my thoughts and prayers.

Jeanie
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Old 02-13-2010, 11:17 PM #12
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Heart You all warmed my heart..

Quote:
Originally Posted by Wilbyfree View Post
I like you also have a severe sensitivity to medicine and have been left in the dirt with pain. For the first time in eight years, my doctor put me on oxycontin 20mg twice a day. I had the prescription for three days before taking it. Finally, it was a Saturday, my husband was home and I took the little shooter. Nothing....I couldn't beleive it, so about six hours later, I took a vicodin, which I am prescribed for breakthrough anyhow, I just couldn't stand the pain. A few hours later, I took another oxycontin as scheduled and I noticed my level had gone down. Now, two weeks later, it doesn't affect me at all, it is like taking a placebo, but my pain had kind of leveled out. I still take the vicodin for breakthrough twice a day.

Now today I had a really, really bad day, so my answer to your question is no I have not tried morpine but right now I would like to. LOL. They say the longlasting medications are better for this type of pain. Like you, I was afraid to try them, but overall, I think it has reduced my pain. Good luck, keep yourself calm, and just the medication do its job. Let us know how this works for you, I will keep you in my thoughts and prayers.

Jeanie
Hi everyone... I am warmed right to my little toe with all of your responses..it makes me giggle to see that you picked up on the fact that I am really putting off trying the morphine..something about touching the burner when it is red HOT ya know yur gonna burn yur hand...so I am thinking of what days it would be best to start ..actually when will the bathroom be free?? Once the kids are in school, I gather.... Honestly... it is so evident what important our meds play in our RSD management..everyone is different..with what they take and their reactions to them..some of us...the ole' cold turkey route... I promise I will give this the ole' school kid try..what is the worst..it may take a few days to recover..I will be back to where I am now....RSD solo..and I'll continue with the half empty..half full..thinking..life is a gift..we are dealt some stinky cards sometimes..but really matters is how to play those cards...and when it is all said and done..I am the luckiest lady out there because of such wonderful friendships and support you all share with me!!!!

Have a nice rest tonight, my friends...Sleep tight.

Luv,

Kathy
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Old 02-14-2010, 12:38 PM #13
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If you're going to wait that long, why not get a script for the Promethazine and try it at the same time? Ask your doc how to maximize the effectiveness of the nausea med when trying the morphine.

Pete (who posted the suggestion for this med) knows his stuff...he's been doing this for a really long time, like 20 years or so. I've learned so much from him. If he's taking something for nausea for meds that he takes for his RSD and other chronic pain conditions, then I would suggest that you may want to pay really close attention to what he has to say (not to diminish what others have to say....).

Just a suggestion, since you seem to have time to work on this...

Happy Valentine's Day my friend. XOXOX Sandy

Last edited by SandyRI; 02-14-2010 at 12:46 PM. Reason: spelling
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Old 02-14-2010, 03:30 PM #14
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I second that notion on taking something for the stomach upset. I think most people have this type of reaction to some degree with pain medication. It could make a world of difference for you. I take Omeprazole once a day, but it has counteracted some of those awful side effects at least minimize them so you can have some relief with the pain. Sometimes, I drink chamomile tea after I take the medications if a feel a sickly side effect coming on. But, it has been awhile since I have hurled around the ole toilet bowel. Especially, with the new medication I was prescribed (oxycontin), never did I think my stomach would tolerate that. I pray this works for you, I hate to see you dealing with so much pain and never getting some sort of pain relief. Mentally, you have just gotto be fried!!! Best of luck.

Jeanie
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Old 02-14-2010, 05:07 PM #15
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Quote:
Originally Posted by Wilbyfree View Post
I second that notion on taking something for the stomach upset. I think most people have this type of reaction to some degree with pain medication. It could make a world of difference for you. I take Omeprazole once a day, but it has counteracted some of those awful side effects at least minimize them so you can have some relief with the pain. Sometimes, I drink chamomile tea after I take the medications if a feel a sickly side effect coming on. But, it has been awhile since I have hurled around the ole toilet bowel. Especially, with the new medication I was prescribed (oxycontin), never did I think my stomach would tolerate that. I pray this works for you, I hate to see you dealing with so much pain and never getting some sort of pain relief. Mentally, you have just gotto be fried!!! Best of luck.

Jeanie
that I am..I try not to get short fused with people but I am exhausted..does not help our sleeping is off also between the constant pain and lack of sleep..but I am still smiling.....

I love the idea, Sandy about the anti-medic..I am going to call first thing tomorrow ask if they will call it in for me..I will wait until I can take them together..Great thought...I thank you...!!!

You are all cuter than a little bugs ear...

Hugz, Kathy
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Old 02-14-2010, 06:52 PM #16
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Confused 7 months since diagnosed with RSD and getting worse I Need help !

I was involved in a terrible car accident in july 09 and had emergency surgeries on my left leg leaving me with RSD/CRPS. I've been on Oxycotin and Roxiecoedone and the pain is so aggressive and unrelenting. I noticed when active with physical therapy and picking my mind off my condition the days were manageable. 7 months later the pain is very intense and im looking if anyone can reccomnend doctors in or around New York or really the best doctors because im finding doctors that know less than me about this condition ! thanks to anyone with any input

I was put on MsCotin (morphine) 30 mg's 3 times daily to see if it was the oxy that didnt work and that stuff was even worse on my system physically and i really felt it did no justice to my pain.
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Old 02-14-2010, 08:00 PM #17
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In NYC Try the Hospital for Special Surgery. Dr. Richman/Dr. Seth Waldman 212-606-1015
and St. Lukes/Roosevelt Hospital Dr. Ronny Hertz 212-523-6367

On Facebook there is a site called Ketamine Klub. If you go to the discussions board there is a link for a doctors list. That is where you can find this information. I put in the info for NYC. But if you want info about any other area it is there for you.

Good luck to you.

XOXOX Sandy



Quote:
Originally Posted by RsdnScared View Post
I was involved in a terrible car accident in july 09 and had emergency surgeries on my left leg leaving me with RSD/CRPS. I've been on Oxycotin and Roxiecoedone and the pain is so aggressive and unrelenting. I noticed when active with physical therapy and picking my mind off my condition the days were manageable. 7 months later the pain is very intense and im looking if anyone can reccomnend doctors in or around New York or really the best doctors because im finding doctors that know less than me about this condition ! thanks to anyone with any input

I was put on MsCotin (morphine) 30 mg's 3 times daily to see if it was the oxy that didnt work and that stuff was even worse on my system physically and i really felt it did no justice to my pain.
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Old 02-14-2010, 08:23 PM #18
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Quote:
Originally Posted by RsdnScared View Post
I was involved in a terrible car accident in july 09 and had emergency surgeries on my left leg leaving me with RSD/CRPS. I've been on Oxycotin and Roxiecoedone and the pain is so aggressive and unrelenting. I noticed when active with physical therapy and picking my mind off my condition the days were manageable. 7 months later the pain is very intense and im looking if anyone can reccomnend doctors in or around New York or really the best doctors because im finding doctors that know less than me about this condition ! thanks to anyone with any input

I was put on MsCotin (morphine) 30 mg's 3 times daily to see if it was the oxy that didnt work and that stuff was even worse on my system physically and i really felt it did no justice to my pain.
I am so sorry for your pain..We all understand the intensitivy and life altering hurt this is.... I have to ask..where in New York??? New York City or more Northern New York...as is a big State... Thank you for your information on the morphine..I am so doomed.... please know we are all friends here and will do our best to give you support and help....Hang in there as RSD is just mean...again..I am sorry!!

Kathy
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Old 02-15-2010, 08:18 AM #19
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Smirk Be carefull of the morphine line of meds.

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Originally Posted by keep smilin View Post
As many of you know..ouch..my system is very ultra snesitive and I can't not try meds as my Dr. recommends..so he has recommended morphine now.. Anyone one taken that with success of lower or managing their pain?? Any advice about what to expect?? My RSD is noted as a very aggressive form..and my system can not withstand pain meds. but I need to keep looking for help...

Hugz,,Kathy
Just a note if you are taking morphine or any other narcotic medication and you develop a dry mouth notify your dentist. Dry mouth comes from morphine more than the other type of pain medications and a dry mouth can really do harm to your teeth. You need the saliva in your mouth or decay will increase even if you brush many times a day. There is a medication which brings saliva to the mouth and helps with the dry mouth. I forget the name I believe it started with an "R" . I will try and find the exact name and post later.

Good Luck

Gabbycakes
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Old 02-16-2010, 12:15 PM #20
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Frown Kadian - Current Medication

Just thought I would jump in the conversation...

I was put on so many different pain medications and I either got sick, broke out with hives or it knocked me out. My PM put me on Kadian and after adjusting the dosage over the past few months it has helps to take the edge off without whacking me out too much. I am currently on 60mg twice a day. I make it about 10 hours before break through pain puts me on edge and I just ride it out until I can take my next dose.

It does make me really sick to my stomach so I take Promethazine twice a day to help with that and I also battle constipation (have meds for that too). It is a push pull situation with my stomach and bowels because the Lyrica and Savella I am on gives me waves of nausea and a runaway tummy so in the end i guess it's a wash.

This form of morphine is been said to be not as habit forming as other types of drugs. I personally think all of these drugs are very bad and dangerous. It does give you a really dry mouth and my teeth do hurt.

If I had a choice, I would NOT be on any prescription medication but RSD has taken away most of my choices in life.
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** W/C injury...Diagnosed with CRPS w/ nerve damage in Apr '09, after a long 2 ½ yr battle with a knee injury. RSD has now spread to entire body.
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