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)

Reply
 
Thread Tools Display Modes
Old 08-06-2009, 05:57 PM #1
sue k sue k is offline
Member
 
Join Date: May 2007
Location: Western MA
Posts: 272
15 yr Member
sue k sue k is offline
Member
 
Join Date: May 2007
Location: Western MA
Posts: 272
15 yr Member
Heart Having a real bad week, scared!!!!

I WAS OUTSIDE YESTERDAY LOOKING AT MY FLOWER GARDEN IT ISN'T DOIN WELL BECAUSE OF ALL THE RAIN. MY DAUGHTER GAVE ME A MARIGOLD PLANT FOR MOTHERS DAYGIFT IN 1988. EVER SINCE I'VE BEEN PICKING THEM AND DRYING THEM OUT. I GET TONS OF SEEDS. WELL I WENT TO TURN AROUD AND TRIPPED OVER A TOY ONE OF THE KIDS LEFT OUT. I SPUN AROUND SO HARD AND LANDED ON MY BUTT. I TRIED TO GET UP AND THE PAIN SHOT UP MY LEG. I COULDN'T OFF OF THE GROUND. I SCREAMED FOR MY HUSBAND. IT STARTED SWELLING SO FAST BY THE TIME HE GOT THERE IT WAS LIKE A BALLOON & PURPLE. THEY GOT ME INTO THE CAR AND I SCREAMED ALL THE WAY TO THE HOSPITAL. WELL I BROKE MY KNEE IN TWO PLACES. OF COURSE ITS THE LEG WITH THE RSD. IT HURTS SO BAD, THE PAIN CLINIC DOUBLED MY DOSE OF OXYCODONE. i GO TO THE ORTHO DOC ON MONDAY. THEY SAID I MIGHT NEED AN OPERATION. I AM SO SCARED. PLEASE PRAY FOR ME. THANKYOU,

SUE K
sue k is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Abbie (08-07-2009), Dew58 (08-06-2009), loretta (08-06-2009), Sandel (08-11-2009)
Old 08-06-2009, 06:15 PM #2
Abbie's Avatar
Abbie Abbie is offline
Elder
 
Join Date: Oct 2006
Location: In a DARK corner.... not looking for a way out.
Posts: 5,526
15 yr Member
Abbie Abbie is offline
Elder
Abbie's Avatar
 
Join Date: Oct 2006
Location: In a DARK corner.... not looking for a way out.
Posts: 5,526
15 yr Member
Default

( ( ( ( ( Sue ) ) ) ) )

I'm sorry to hear of your accident and bone break...

Sending soft gentle hugs your way.

Also sending prayer for quick healing and low pain levels...


Abbie
__________________
My avatar pic is my beautiful
niece Ashley!

.
Rest in Peace
3/8/90 ~~ 4/2/12
Abbie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
loretta (08-06-2009), sue k (08-07-2009)
Old 08-06-2009, 07:24 PM #3
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default

Dear Sue -

I am so, so sorry to hear this. I agree that immediate pain control is the thing to be done first.

First things first, if the oxycondone is not doing the job, even at the higher dose, you may want to ask your PM doc about a stronger narcotic than oxycodone, say methadone, Meperidine (demerol hydrochloride syrup), or even oral Dilaudid (hydromorphone). Just make sure you get an appropriate prescription med to counteract what could otherwise be an immediate shutdown of your GI track: lately they seem to be doing a lot with very small doses of opioid antaganists, which keep the gut working but aren't enough it leach into the blood stream and thereby counteract the property of the opioid in the first place. I was regularly using Naloxone Hydrocloride (Narcan) taken via an oral syringe, until the price went from between around $140 a case - roughly a 40 day supply - to just under $800 in less than a year (it's generic, but there's only one manufacturer) so I went off in favor of over the counter products, only to have my combination of Oxcycontin/oxcycodone basically stop working, at which point I was switched to 30 mg. of methdone a day, and a couple a weeks later, I had two hernias to show for it!

I'm probably preaching to the choir on this one, but this is what I have learned in the past few weeks since it became apparent I needed surgery for the double hernias: putting aside the question of the appropriate sugeon, the procedure as a whole has to be done in a hospital where you can get a pre-op consult with the anesthesiologist to go over your drug list and the recommendation of your pm doc. concerning the anesthetic component of the procedure, blocks, continuous regional anasthesia, etc. Turns out, it's a simple yes or no question on whether such consults are available. If they aren't, the advice I've gotten from a very well regarded general surgeon in a "regional medical center" was that I had to move on down the road to a university medical center or other tertiary treatment facility. Otherwise, what happens at many places - including his hospital - is that you'll have an anesthesiologist assigned the day before the procedure, who will just be looking at your list of meds a few minutes before they bring you in. My internist told me that in that scenario, he was personally familiar with situations where such randomly drawn anesthiosiolgists, looking at lists of prescription drugs far shorter than my own, had thrown up their hands and refused to go forward, not being 100% sure how any particular general anesthetic would react to all the meds the patient was on. And that's not even talking about having the special precautions taken that are appropriate for a CRPS patient entering surgery!

I'm sorry for going on so, but I hope that some of this information may be news to you and therefore potentially useful.

You are very much in my thoughts. As well I'm sure, of all of the old-timers on this board, and then some.

Mike

ps Dubious is 100% correct in his comment below. There is no reason to wait until surgery to attack the barrage of pain signalling current hitting the dorsal horn of your spinal cord for which pain killers provide no protection at all. Perhaps a hard hitting series of bilateral lumbar sympathetic blocks, where even though your CRPS is chronic -on account of which there may be little or no pain signalling "from" the leg even though that's where it is surely "felt" - the knee issue is brand new, and should be responsive to blocks for the same reason that prophylactic blocks of one sort or another help prevent spread in the OR.

Last edited by fmichael; 08-06-2009 at 08:03 PM.
fmichael is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Abbie (08-07-2009), Dew58 (08-06-2009), Dubious (08-06-2009), loretta (08-07-2009), Mslday (08-06-2009), sue k (08-07-2009), SunshineGirl (08-16-2009)
Old 08-06-2009, 07:40 PM #4
Dubious Dubious is offline
Member
 
Join Date: Jan 2009
Location: Paradise
Posts: 855
15 yr Member
Dubious Dubious is offline
Member
 
Join Date: Jan 2009
Location: Paradise
Posts: 855
15 yr Member
Default

Quote:
Originally Posted by fmichael View Post
Dear Sue -

I am so, so sorry to hear this. I agree that immediate pain control is the thing to be done first.

First things first, if the oxycondone is not doing the job, even at the higher dose, you may want to ask your PM doc about a stronger narcotic than oxycodone, say methadone, Meperidine (demerol hydrochloride syrup), or even oral Dilaudid (hydromorphone). Just make sure you get an appropriate prescription med to counteract what could otherwise be an immediate shutdown of your GI track: lately they seem to be doing a lot with very small doses of opioid antaganists, which keep the gut working but aren't enough it leach into the blood stream and thereby counteract the property of the opioid in the first place. I was regularly using Naloxone Hydrocloride (Narcan) taken via an oral syringe, until the price went from between around $140 a case - roughly a 40 day supply - to just under $800 in less than a year (it's generic, but there's only one manufacturer) so I went off in favor of over the counter products, only to have my combination of Oxcycontin/oxcycodone basically stop working, at which point I was switched to 30 mg. of methdone a day, and a couple a weeks later, I had two hernias to show for it!

I'm probably preaching to the choir on this one, but this is what I have learned in the past few weeks since it became apparent I needed surgery for the double hernias: putting aside the question of the appropriate sugeon, the procedure as a whose has to be done in a hospital where you can get a pre-op consult with the anesthesiologist to go over your drug list and the recommendation of your pm doc. concerning the anesthetic component of the procedure, blocks, continuous regional anasthesia, etc. Turns out, it's a simple yes or no question on whether such consults are available. If they aren't, the advice I've gotten from a very well regarded general surgeon in a "regional medical center" was that I had to move on down the road to a university medical center or other tertiary treatment facility. Otherwise, what happens at many places - including his hospital - is that you'll have an anesthesiologist assigned the day before the procedure, who will just be looking at your list of meds a few minutes before they bring you in. My internist told me that in that scenario, he was personally familiar with situations where such randomly drawn anesthiosiolgists, looking at lists of prescription drugs far shorter than my own, had thrown up their hands and refused to go forward, not being 100% sure how any particular general anesthetic would react to all the meds the patient was on. And that's not even talking about having the special precautions taken that are appropriate for a CRPS patient entering surgery!

I'm sorry for going on so, but I hope that some of this information may be news to you and therefore potentially useful.

You are very much in my thoughts. As well I'm sure, of all of the old-timers on this board, and then some.

Mike

All the advice sounds good to me. I would only add that you should talk to our PM doc about the efficacy of epidurals, ganglion blocks, etc., anything to keep the pain signals from hitting the spinal cord.

Good luck, happy thoughts and prayers to you!
Dubious is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Abbie (08-07-2009), Dew58 (08-06-2009), fmichael (08-06-2009), Mslday (08-06-2009), Sandel (08-11-2009), sue k (08-07-2009)
Old 08-07-2009, 05:22 PM #5
bobber bobber is offline
Member
 
Join Date: Jun 2009
Posts: 497
15 yr Member
bobber bobber is offline
Member
 
Join Date: Jun 2009
Posts: 497
15 yr Member
Default

Mike
how did switching from oxycodone to methadone cause your hernias? does it weakin the stomach walls or cause more constipation? Thats a notable thing to know, it will keep alot of us from running into the same problem,,,,,,,,,,,,,,,,,bobber
bobber is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (08-07-2009)
Old 08-07-2009, 11:48 PM #6
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default

Quote:
Originally Posted by bobber View Post
Mike
how did switching from oxycodone to methadone cause your hernias? does it weakin the stomach walls or cause more constipation? Thats a notable thing to know, it will keep alot of us from running into the same problem,,,,,,,,,,,,,,,,,bobber
I was started out on what I understand was a fairly hefty dose of Methodone, 30 mg./day. Unfortunately, my pm doc. didn't know that I had discontinued the use of Naloxone HCL, taken orally 1/mg. every time I took an Oxycontin/oxycodone, due to the extreme cost issue, when I had found that Senaokot-S, a good over the counter stool softener that he had also reccommended, did the trick when I just took 4 tablets at bedtime. Turned out, that was nothing against Methadone, which completely shut me down. Then it was just a matter of straining to produce results, and that's all it took. That said, I was later advised by a pharmacist that I would have had better luck taking the Senokot-S with the each of the three daily doses of Methadone, as much as 8 tablets a day.

Live and learn.

Mike
fmichael is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
loretta (08-09-2009)
Old 08-09-2009, 05:49 PM #7
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
Default

Thanks Mike,
i was going to ask the same question as bobber, about your hernias. My husband had double hernia surgery, no fun. Isn't it outrageous how a med can skyrocket within one year. Not acceptable, but what can we do? Take care, your friend, loretta
loretta is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (08-11-2009)
Old 08-16-2009, 07:19 PM #8
lexiemae1 lexiemae1 is offline
Member
 
Join Date: Sep 2008
Posts: 144
15 yr Member
lexiemae1 lexiemae1 is offline
Member
 
Join Date: Sep 2008
Posts: 144
15 yr Member
Default Dear Fmichael<

Quote:
Originally Posted by fmichael View Post
Dear Sue -

I am so, so sorry to hear this. I agree that immediate pain control is the thing to be done first.

First things first, if the oxycondone is not doing the job, even at the higher dose, you may want to ask your PM doc about a stronger narcotic than oxycodone, say methadone, Meperidine (demerol hydrochloride syrup), or even oral Dilaudid (hydromorphone). Just make sure you get an appropriate prescription med to counteract what could otherwise be an immediate shutdown of your GI track: lately they seem to be doing a lot with very small doses of opioid antaganists, which keep the gut working but aren't enough it leach into the blood stream and thereby counteract the property of the opioid in the first place. I was regularly using Naloxone Hydrocloride (Narcan) taken via an oral syringe, until the price went from between around $140 a case - roughly a 40 day supply - to just under $800 in less than a year (it's generic, but there's only one manufacturer) so I went off in favor of over the counter products, only to have my combination of Oxcycontin/oxcycodone basically stop working, at which point I was switched to 30 mg. of methdone a day, and a couple a weeks later, I had two hernias to show for it!

I'm probably preaching to the choir on this one, but this is what I have learned in the past few weeks since it became apparent I needed surgery for the double hernias: putting aside the question of the appropriate sugeon, the procedure as a whole has to be done in a hospital where you can get a pre-op consult with the anesthesiologist to go over your drug list and the recommendation of your pm doc. concerning the anesthetic component of the procedure, blocks, continuous regional anasthesia, etc. Turns out, it's a simple yes or no question on whether such consults are available. If they aren't, the advice I've gotten from a very well regarded general surgeon in a "regional medical center" was that I had to move on down the road to a university medical center or other tertiary treatment facility. Otherwise, what happens at many places - including his hospital - is that you'll have an anesthesiologist assigned the day before the procedure, who will just be looking at your list of meds a few minutes before they bring you in. My internist told me that in that scenario, he was personally familiar with situations where such randomly drawn anesthiosiolgists, looking at lists of prescription drugs far shorter than my own, had thrown up their hands and refused to go forward, not being 100% sure how any particular general anesthetic would react to all the meds the patient was on. And that's not even talking about having the special precautions taken that are appropriate for a CRPS patient entering surgery!

I'm sorry for going on so, but I hope that some of this information may be news to you and therefore potentially useful.

You are very much in my thoughts. As well I'm sure, of all of the old-timers on this board, and then some.

M
ps Dubious is 100% correct in his comment below. There is no reason to wait until surgery to attack the barrage of pain signalling current hitting the dorsal horn of your spinal cord for which pain killers provide no protection at all. Perhaps a hard hitting series of bilateral lumbar sympathetic blocks, where even though your CRPS is chronic -on account of which there may be little or no pain signalling "from" the leg even though that's where it is surely "felt" - the knee issue is brand new, and should be responsive to blocks for the same reason that prophylactic blocks of one sort or another help prevent spread in the OR.
Mike Can u explain how your gi tract shuts down due to pain.. Never saw anything on this before.. PM me or whatever please..Thanks Sunshine
lexiemae1 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (08-17-2009), fmichael (08-16-2009)
Old 08-16-2009, 09:00 PM #9
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default

Quote:
Originally Posted by SunshineGirl View Post
Mike Can u explain how your gi tract shuts down due to pain.. Never saw anything on this before.. PM me or whatever please..Thanks Sunshine
No problem. What I was saying is that it's the narcotic that shuts down the GI trak via opioid receptors in the bowel. The trick is to give just enough of an opoioid antagonist to keep the opiod-receptors in the bowel from shutting down while not allowing enough of the opioid receptor to enter the blood stream and counteract the analgesic effect of the narcotic. See, e.g. "Fixed-ratio combination oxycodone/naloxone compared with oxycodone alone for the relief of opioid-induced constipation in moderate-to-severe noncancer pain," Simpson K, Leyendecker P, Hopp M, Müller-Lissner S, Löwenstein O, De Andrés J, Troy Ferrarons J, Bosse B, Krain B, Nichols T, Kremers W, Reimer K, Curr Med Res Opin, 2008 Dec;24(12):3503-12.

Leeds Teaching Hospitals, Leeds, UK.
OBJECTIVE: Opioid therapy is frequently associated with treatment-limiting constipation. Naloxone is an opioid antagonist with low oral systemic bioavailability. This Phase III clinical trial assessed the safety and efficacy of an oral fixed-ratio combination of oxycodone prolonged-release (PR) and naloxone PR compared with oxycodone PR in relieving opioid-induced constipation.

STUDY DESIGN: This double-blind, multicenter trial was conducted in specialist and primary care centers in four European countries in an out-patients setting. The study included 322 adult patients with moderate-to-severe, noncancer pain requiring opioid therapy in a range of >or=20 mg/day and <or=50 mg/day oxycodone. Following a run-in phase patients were randomized to receive oxycodone PR/naloxone PR or oxycodone PR for 12 weeks. The primary outcome was improvement in constipation as measured using the Bowel Function Index (BFI). Secondary/exploratory assessments focused on pain intensity and additional bowel parameters. Trial registration: NCT00412152.

RESULTS: A significant improvement in BFI scores occurred with oxycodone PR/naloxone PR compared with oxycodone PR after 4 weeks of double-blind treatment (-26.9 vs. -9.4, respectively; p < 0.0001), observed after only 1 week of treatment and continued until study end. A significant increase in the number of complete spontaneous bowel movements and decrease in laxative use were also reported. This improvement in bowel function was achieved without compromising the analgesic efficacy of the oxycodone component; pain intensity remained constant throughout the study. The incidence of adverse events was comparable in both groups and consistent with those expected of opioid analgesics. As the study was limited to a dose range of up to 50 mg oxycodone equivalent per day, further research on higher doses would be recommended.

CONCLUSION: The fixed-ratio combination of oxycodone PR/naloxone PR is superior to oxycodone PR alone, offering patients effective analgesia while significantly improving opioid-induced constipation.

PMID: 19032132 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
And for a free full-text online (and quite readable) article on the subject, check out "Patient assessment of a novel therapeutic approach for the treatment of severe, chronic pain," Nadstawek J, Leyendecker P, Hopp M, Ruckes C, Wirz S, Fleischer W, Reimer K, Int J Clin Pract 2008 Aug;62(8):1159-67, at http://www.pubmedcentral.nih.gov/art...medid=18705820

There is another drug out there, Methylnaltrexone (Relistor), which is even better than naloxone where, in any dose, it apparently doesn't effect the analgesic properties of the opioid in question. The problem is that it's currently available only for use via subcutaneous injection, although I've heard that an oral version may be available as early as 2010. See,

"Methylnaltrexone: the answer to opioid-induced constipation?" Cannom RR, Mason RJ, Expert Opin Pharmacother, 2009 Apr;10(6):1039-45:
Opioid-induced constipation is a significant problem particularly for end stage cancer patients, methadone users, patients suffering from chronic pain as well as surgical patients. Until recently, there were few efficacious treatment options that did not have significant side effects. Methylnaltrexone is a promising drug for the treatment of opioid-induced constipation. It is an opioid-receptor antagonist that blocks the peripheral gastrointestinal opioid receptors responsible for opioid-induced bowel dysfunction. Due to the drug's polarity, it does not cross the blood-brain barrier; therefore, it does not block the central opioid receptors, thus, retaining effective analgesia. Methylnaltrexone has been recently approved by the FDA in the subcutaneous form for the treatment of opioid-induced bowel dysfunction, whereas the intravenous and oral forms remain under investigation.

PMID: 19364251 [PubMed - in process]
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
Please note, however, this is a totally separate concept from giving "micro-doses" of an opioid antagonist (1) without the opioid, in order to stimulate the production of endogenous opioids by the body or (2) with smaller amounts of the opioid, the analgesic effect of which is increased or "potentiated" without triggering any side-effect on the GI track, due to the lower opioid dose.

Hope this is helpful.

Mike
fmichael is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (08-17-2009)
Old 08-16-2009, 09:34 PM #10
bobber bobber is offline
Member
 
Join Date: Jun 2009
Posts: 497
15 yr Member
bobber bobber is offline
Member
 
Join Date: Jun 2009
Posts: 497
15 yr Member
Default

thanks mike
that reminds me too,,,ive had about 8 surgerys in the last 5 years,,i used to come out the next day constipated,,bewteen the anesthia and the pain pumps and oral meds [high volumes,,i learned to take stool softners the nite b4 surgery,,,it works every time,,,,
bobber is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (08-17-2009)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
A week ago the Hospice nurse gave Dad 1 week Twinkletoes Sanctuary for Spiritual Support 92 02-10-2009 02:30 AM
ERUOPE only..."Real Life Real PD Survey" (European Parkinson's Disease Association) Stitcher Parkinson's Disease 0 11-08-2007 08:40 AM
How It Works About Us Contact Info Share real results with real patients for real dis SallyC Multiple Sclerosis 0 05-24-2007 12:56 PM


All times are GMT -5. The time now is 08:41 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.