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, 05:55 PM #1
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Originally Posted by keep smilin View Post
Ada and Sandy..

I have not tryed the mindfulness website..If you promise it won't make me hurl..then why not?! tee-hee... Look at me chicken to start the med..just don't like being sick...again..

I so enjoy each of my friends here..I'd be lost without you...

Luv.. Kathy
Check out :

http://www.umassmed.edu/Content.aspx...d&itemid=41254

http://health.ucsd.edu/specialties/p...mbsr/audio.htm

From the UMass site you can follow the links to a variety of places - I found where there was even a list of courses offered in my area. FMichael writes much more prolifically on the subject - find one of his posts and click on his name and then you can find his older posts. He provides the name of the founder of the Mindfulness movement Jon Zabat-Kin (or something similar), and his best books on the subject. My therapist recommended another book on the subject which I ordered from Amazon - "The Mindfulness Solution to Pain," by Jackie Gardner-Nix. Basically, mindfulness helps you relax and pay more attention to how you respond to the pain in your body. Instead of tensing up and fighting it, it encourages you to feel it, explore it, and accept it. The biggest impact for me has been sleep - I am able to relax my body much better than ever before and fall asleep after waking repeatedly throughout the night from pain.

Have a nice evening, XXOXO Sandy
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Old 02-13-2010, 07:07 PM #2
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Quote:
Originally Posted by SandyRI View Post
Check out :

http://www.umassmed.edu/Content.aspx...d&itemid=41254

http://health.ucsd.edu/specialties/p...mbsr/audio.htm

From the UMass site you can follow the links to a variety of places - I found where there was even a list of courses offered in my area. FMichael writes much more prolifically on the subject - find one of his posts and click on his name and then you can find his older posts. He provides the name of the founder of the Mindfulness movement Jon Zabat-Kin (or something similar), and his best books on the subject. My therapist recommended another book on the subject which I ordered from Amazon - "The Mindfulness Solution to Pain," by Jackie Gardner-Nix. Basically, mindfulness helps you relax and pay more attention to how you respond to the pain in your body. Instead of tensing up and fighting it, it encourages you to feel it, explore it, and accept it. The biggest impact for me has been sleep - I am able to relax my body much better than ever before and fall asleep after waking repeatedly throughout the night from pain.

Have a nice evening, XXOXO Sandy
Thank you everyone for the scoop..Sandy, thank you for the websites and getting them up for me..I will for sure check the out.... Funny..yur thought of waking repeatably throughout the night... that is me sista... I hate that but I do fall back to sleep...As far as the morphine..Can I tell yeh..I am ner-val...(nervous)...

hugz all..... k
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Old 02-13-2010, 09:48 PM #3
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Hi Kathy. I also have a sensative stomach and aggressive CRPS. Began with:motrin, naprosyn, darvocet, percocet, vicodin, valium then Kadian(a morphine sulfate) supposedly has a more even release of morphine which means it is less addictive but it really messed with my head and constipation, next was Oxycontin which wasnt as bad on my stomach or head but still foggy. Didnt control my pain or spread. Then put on methadone which found it doesnt bother my stomach like the other 2 and definately better on my thinking. I called it my miracle drug. My one Dr. who was into ketamine disagrees with using opiods but I am continuing on methadone and continuing to research. The problem i have found is we all react differently to different meds. Good luck. momof4
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Old 02-13-2010, 10:34 PM #4
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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 #5
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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 #6
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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 #7
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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 02-16-2010, 12:15 PM #8
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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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Old 02-17-2010, 04:14 AM #9
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The discussion of for stomach problems is interesting. I had not heard of the drug before.

I have personally found that Marinol (Dronabinol), which is generally prescribed for nausea and vomitting following chemo, is the most effective med I've ever had for spasms. That said, it's an exact replica of one of nine naturally occuring TCH molecules so it can get you a little spaced out. But it works and was (and is) prescribed for me by very reputable CRPS specialist in LA: by no means a Dr. Feel Good.

Here's just one bit of suggested reading, in case you're in discussing this with your docs. Just the abstract of this case report may be appealing, I don't know. Deutsch SI, Rosse RB, Connor JM et al, Current status of cannabis treatment of multiple sclerosis with an illustrative case presentation of a patient with MS, complex vocal tics, paroxysmal dystonia, and marijuana dependence treated with dronabinol, CNS Spectr. 2008 May;13(5):393-403, FREE FULL TEXT AT http://mbldownloads.com/0508CNS_Deutsch.CME.pdf
Abstract
Pain, spasticity, tremor, spasms, poor sleep quality, and bladder and bowel dysfunction, among other symptoms, contribute significantly to the disability and impaired quality of life of many patients with multiple sclerosis (MS). Motor symptoms referable to the basal ganglia, especially paroxysmal dystonia, occur rarely and contribute to the experience of distress. A substantial percentage of patients with MS report subjective benefit from what is often illicit abuse of extracts of the Cannabis sativa plant; the main cannabinoids include delta-9-tetrahydrocannabinol (delta9-THC) and cannabidiol. Clinical trials of cannabis plant extracts and synthetic delta9-THC provide support for therapeutic benefit on at least some patient self-report measures. An illustrative case is presented of a 52-year-old woman with MS, paroxysmal dystonia, complex vocal tics, and marijuana dependence. The patient was started on an empirical trial of dronabinol, an encapsulated form of synthetic delta9-THC that is usually prescribed as an adjunctive medication for patients undergoing cancer chemotherapy. The patient reported a dramatic reduction of craving and illicit use; she did not experience the "high" on the prescribed medication. She also reported an improvement in the quality of her sleep with diminished awakenings during the night, decreased vocalizations, and the tension associated with their emission, decreased anxiety and a decreased frequency of paroxysmal dystonia.[Emphasis added.]

PMID: 18496477 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/18496477

Mike
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