RSD'ers... anyone try...morphine??
 

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:grouphug:

Hi Kathy,
 

I tried Moraphine years ago and it just made me sick. Same with the patches you can wear for days, after 6 hours I would be vomiting. I believe they were moraphine patches. Others could tell you more about it.

I like the Methadone. Don't know if you have tried it but it seems to have the least side effects.

I believe with any med sometimes the Drs. start patients out on too high of a dosage and their body can't get use to it.

Ada

Dear Kathy,

I would also suggest Methadone...I was taking 5 mg 3 times a day for many months. It works REALLY well for nerve pain. Many people on this board take it with little or no side effects other than constipation.

Morphine is another med I use. I learned that opiates (morphine is in that family) AND methadone DON'T go together, they cancel each other out. I had been prescribed both by a RI doc, and no one set me straight until I saw Dr. Getson in NJ. (I'm still bummed that my beloved Boston doc missed that one!). I wear a 75 mcg Fentanyl morphine patch that I change every 48 -72 hours. I would like to taper down to a lower dose soon because of the constant "brain fog" and depression. The Fentanyl patch has been invaluable to me since last summer when I became so sick with head pain. For a while I even went up to 100 mcg and had Perc for break through. (One of the reasons I likely needed such high doses is because I was also taking the Methadone with it - and they weren't working well together!) You can only be prescribed Fentanyl if you have been taking opiates on a regular basis for a several months and are deemed to be "opiod tolerant."

I sincerely hope that you find something to help you...have you tried any of the Mindfulness Training that is available on the UMass website? FMichael has written extensively about it in the past, and I can provide a few links if you would like.

Good luck, XOXOX Sandy

thank you....
 

Ada and Sandy.. you are fantastic!!!! Thank you very much on your feed back..you know my story..I did fill the script but waiting for the right time to start it..that tells you a bunch also... Methadone was considered by my Dr. that day but see I do have some cardiac problems..not related to my RSD.., I think.. anyway due to my heart trouble my dr. immediately erased the thought of the Methadone and advised his Asst. to start me on a low dose of morphine..well try it anyway..As far as the patches..tryed them also..even nausea there as well can't get them off without shear pain... 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:hug:

Hi Kathy,
although I've been taking Methadone for about 20 years, due to a head trauma, I get nauseated.
My Doc gave me
"Promethazine"
(I guess that's the generic name) 25 mg tablets.
One takes it right away.
Good luck to you!

pete

I was put on a PCA (Patient Controlled Analgesia) with Morphine in it when I had an ingrown toenail removed a few years ago when my RSD first started and I was just diagnosed. It's a pump that allows you to have Morphine given every few minutes to try and control the pain. All you have to do is press a little button and it is put into the bloodstream automatically and then the Doctors can control how often you have been using it. It helped me a little bit so my Doctor decided to put me on oral Morphine but unfortunately, that didn't work as well and made me feel really sick (most people recommend taking something with it to stop nausea).

I hope it works should you wish to try it. As you know, everyone is different and no two people react the same.

Best wishes,
Alison

Hi KS.

I, like you are very sensitive to meds. Most opiods make me terribly sick. Tried Vicodin, Percocet, etc. I have been taking a synthetic morphine for the past few months called "Nucynta" 50 mg three times a day. Usually I am not sick, but when I'm in a flare my stomach is even more queasy. My Primary doc gave me promethazine for nausea and my Neuro flipped out and demanded I stop taking it immediately due to permanent muscle twiches and tics. So, my primary put me on "Ondasetron" 8mg twice a day. Generic. I'm sure my Neuro will freak again, but I would rather twitch than be soooo sick. The Ondasetron is given to pregnant women and cancer patients going through chemo. It got so bad with the nausea that I avoided going out in public. I just never knew when or where I would be when it hit me. Embarrasing!

I wish you luck. It's a horrible way to feel!

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

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

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

You all warmed my heart..
 

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:grouphug:

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

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

Fried....
 

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:grouphug:

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.

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

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:D

Be carefull of the morphine line of meds.
 

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

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. :mad:

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