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 02-17-2010, 07:48 PM #11
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Heart Kathy here again...

Quote:
Originally Posted by dreambeliever128 View Post
MrsD, my nurse also told me she was taking vitamin E. She's been my nurse for the 19 years I have had my PCP. She is about 60. I was around when she dealt with cancer but otherwise she is doing good nowadays. She horseback rides and keeps active. I don't think she is dealing with any medical issues that keeps her on meds.

Daniella, that's a good ideal on the prune baby food. I buy the regular prunes and I add water to them and boil them. You can drink the juice off of them and it softens them.

Sandy, we do learn a lot here. Reading what MrsD writes helps me a lot. She seems very knowledgeable about things. My biggest problem is that my short term memory keeps me from remembering things. I'll forget this all tomorrow.

My gastro told me that the Merilax could make things worse for me and then gave me a script for it.

As far as the Mitformin, it has really helped me. If I hadn't been put on it, I really do think I would have been even worse today. I have been on it for about a year. I did try and go off of it a couple of months back and that might have made things worse for me. I get to thinking I am doing ok and can get off of meds and it doesn't always work. I get bloodwork done often so I know it's not messing with anything.

My daughter picked me up some natural stool softners at the health food store today so along with these other suggestions I am hoping it will help. I will get some magnesium oxide.

Thanks for the help girls.

Ada
Ada..
I gotx to say I learned a bunch from this post..what doesn't cure ya..will certainly kill ya!! I hope soon you will be feeling better..the last thnig we need is troubles like this when our pain is so great... I still stand by my original thought of Raisin bran, Prune juice and apples..Horses like that!.. My favorite saying is..good luck when stopping by the pool....

Hugz, Kathy
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Old 02-17-2010, 10:19 PM #12
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Default Hi Ada

I use hemp seed oil. It comes in capsules or actual seed. They say they all work, but I prefer to use the oil, when I have severe issues with the bowels. I use the seed on a daily basis just for its nutritional value. For constipation, I take one to two tsp full and within hours I get relief. Best of luck.

Jeanie
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Old 02-18-2010, 04:18 AM #13
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This is an important topic. (The week my pain dr. tried me out on 30 mg./day of Methadone, in a cold switch from Oxycontin/oxycodone, I picked up a hernia for the experience.)

I was controlling nicely with oral Nalaxone HCL (f.k.a. Narcan) a powerful "mu-"opioid antagonist which, although available only as a serious drug injectable for use in emergency room for overdoses, when taken 1 ml. at a time via an oral syringe with each Oxycontin or oxycodone - the drug being previously transferred with a 10 ml. hypodermic needle from a 10 ml. vial into bottle from which the oral syringe could then be drawn - the effect was to neutralize the opioid receptors that would otherwise shut down the bowel without significantly impacting (at that dose) the opioids analgesic/pain killing effect.

For an abstract of a small study on the practice, see, Hawkes ND, Richardson C, Evans BK, et al, Effect of an enteric-release formulation of naloxone on intestinal transit in volunteers taking codeine. Aliment Pharmacol Ther. 2001 May;15(5):625-30:
INTRODUCTION: Constipation is a common side-effect of opioid therapy; in addition to their analgesic effect, opioids reduce intestinal secretion and motility with an increase in whole-gut transit time. Naloxone, a specific opioid antagonist, reverses these effects but may also cause symptoms of opioid withdrawal in patients on long-term therapy.

AIM: To use an enteric-release formulation, designed to produce a topical effect in the gut, with minimum systemic effects.

METHODS: Naloxone 10 mg b.d. and codeine 30 mg b.d. were used with identical placebo capsules in four sets of studies; 12 male volunteers were given the drugs alone and in combination, with a control study involving double placebo, during each of four study periods. Whole-gut transit time was calculated and compared for each treatment period. RESULTS: Naloxone, both alone and with codeine, significantly shortened the mean whole-gut transit time compared with the control period, respectively, from 53.1 to 42.1 h (P=0.005) and to 40.7 h (P=0.024). Urgency to defecate was reported by two volunteers on naloxone alone and by three on combination therapy.

CONCLUSIONS: The results show that the naloxone formulation counteracts the effect of codeine on intestinal transit, suggesting that it may have useful clinical applications.

PMID: 11328255 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/11328255

I was one this for years. Insurance didn't cover it, but it was generic and not too bad. A case of 25 10 cc. vials cost about $132 and lasted six weeks. That is, until the manufacturer apparently realized that as the sole generic producer, it would take a competitor something one the order of 2 years to secure FDA approval to get another generic on the market and in that time - hey, it had a monopoly, so why not price it accordingly. And figuring that the product - marketed to keep people from dying of a heroin OD - had what an economist would call "price inelastic demand" (which is to say, whatever it costs, ERs had to have it - the priice went up in stages every six weeks or so, as I recall first to $400 a case or so, and then more, maybe $600. That's the last time I bought it in any event. When next I looked my pharmacist was telling me that his cost was roughly $900 and I was out of the market, the price having gone up by over six-fold in under a year. (Since the price started climbing he had been selling it to me at his cost, where he made his money on my account through compounding a ketamine/lidocaine/gabapentin gel for my feet, which is covered by insurance.)

I just checked tonight, another pharmacist I know told me that the wholesale price for a case of 25 10 ml injectable vials is still around $900, so I’m guessing the manufacturer must have found a stable monopoly price.

The only good news in all of this is that clinical trials appear to be fairly well advanced on the development of an "an oral fixed-ratio combination of oxycodone prolonged-release (PR) and naloxone PR compared with oxycodone PR in relieving opioid-induced constipation." Specifically, a successful report of Phase II testing was reported in December, 2008. While the drug will doubtlessly be priced higher than you would pay for the privilege of taking generic oxycodone along with a ml of the liquid (.4 mg) Naloxone, the good news is that it should at least be covered by insurance. See, Simpson K, Leyendecker P, Hopp M, et al, Fixed-ratio combination oxycodone/naloxone compared with oxycodone alone for the relief of opioid-induced constipation in moderate-to-severe noncancer pain, Curr Med Res Opin. 2008 Dec;24(12):3503-12:
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/19032132

An FDA summary of the status of the trial is at http://clinicaltrials.gov/ct2/show/NCT00412152 and from the same manufacturer, the European firm Mundipharma Research GmbH & Co KG , the next drug in the pipeline hopes to do the same thing with Dilaudid (Hydromorphone). See, http://clinicaltrials.gov/ct2/show/NCT00992576

FINALLY, the Pain Research page of Mundipharma is interesting in its own right:
One example of our successful development work is an innovative agonist/antagonist combination. This analgesic differs fundamentally from previous opioid preparations due to its considerably improved tolerability. As the only medications of its kind, it possesses the strong, pain-relieving effect of opioids and simultaneously prevents the most frequent undesired effect of this active ingredient to date – gastro-intestinal dysfunction, with opioid-induced constipation as the main symptom. In addition, we are working on developing further agonist/antagonist combinations. And we even have a series of other promising substances in the pipeline. In total, there are currently 11 projects in the field of analgesia at various phases of development. [Emphasis added.]
http://www.mundipharma-research.com/...reas/pain.html

I imagine that the first patents in this area that make it to FDA approval will prove to be lucrative. For more on this area, I refer back to my post on February 11th in the which path will you choose? thread [post #8] http://neurotalk.psychcentral.com/sh...879#post620879

Mike
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Old 02-18-2010, 08:34 AM #14
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Default Hello!!!

[FONT=Hello
I know for my self I was really constipated one time and I asked my doctor what to do and he told me different stuff. I asked my pharmacist does he have any suggestions he said to drink as much water as I could and that did the trick. I will always do that for now on when I am constipated. I hope this helps. I know this is awful to be in that kind of pain. Take Care I hope you feel better soon.

Laraine"Arial Black"][/FONT]
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Old 02-18-2010, 08:41 AM #15
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A good natural laxative from the health food store is cascara sagrada. I have also been on Amitiza which is for chronic constipation but you need a script from your Dr. Always double check with your Dr. 1st to make sure there is no health issue/medication interference that it could occur when taking something over the counter or from health food store. Even though they are natural the Dr needs to know what your are taking. I use cascara as i need it. Plenty of water! Good luck momof4
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Old 02-18-2010, 09:36 AM #16
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Just make sure to drink enough water because otherwise the stool will be hard and not easy to pass. I would also look at your diet in a whole see if you have any foods that could also be backing you up. My old nutritionist said think of things that start with F. Like fruit,fiber,fats these assist in bowl movement.
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Old 02-18-2010, 09:46 AM #17
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Don't assume you are being tested for B12 levels. Typically doctors ignore this. Low levels will impact the nerves and cause various dysfunctions of the nervous system including the autonomic (gastroparesis).

Here is a recent post with a link to Metformin induced low B12:
http://neurotalk.psychcentral.com/sh...ight=metformin

Get your numbers also from the doctor. Do not accept "normal"
since many lab ranges include 200's as "normal" which are not! (One should be at 400 or above.)

Some doctors believe if there is no anemia, then B12 does not need to be tested. This is just not true. Many people can have very low B12 levels and not show any signs of anemia, but may still have severe neurological problems. Some patients may show slightly elevated MCV values on CBCs before any frank anemia occurs. This too, is often ignored by doctors. (this test measures the size of the red blood cells, and when it increases can signal low B12 levels). Interpretation of test results is highly subjective and many doctors do not attend to things uniformly. So it is up the the patient in this case to be an active participant.

Since B12 is so simple to take, pennies a day, injections not necessary as oral works, it is a shame to neglect this. Some of our other posters on other boards like MG and MS also take B12. Just about all our posters on PN use it.

This article from 2000 illustrates confusion regarding lab results:
http://www.ars.usda.gov/is/pr/2000/000802.htm

And this medical paper from 2003 corrects the misperception:
http://www.aafp.org/afp/2003/0301/p979.html
Quote:
Diagnosis of Vitamin B12 Deficiency

The diagnosis of vitamin B12 deficiency has traditionally been based on low serum vitamin B12 levels, usually less than 200 pg per mL (150 pmol per L), along with clinical evidence of disease. However, studies indicate that older patients tend to present with neuropsychiatric disease in the absence of hematologic findings.5,6 Furthermore, measurements of metabolites such as methylmalonic acid and homocysteine have been shown to be more sensitive in the diagnosis of vitamin B12 deficiency than measurement of serum B12 levels alone.3,10–14
Stomach acid is required to activate the intrinsic factor that transports B12 into the body. When stomach acid is gone, the only way oral B12 can get in is passively, absorbed in the small intestine. So very large doses of at least 1000mcg have to be given daily (sometimes more) to get the small amount that is actually absorbed (without the assistance of instrinsic factor).
It is best to take B12 orally on an empty stomach for this reason, so the microgram dose will not be lost in fiber from food.
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Old 02-18-2010, 11:20 AM #18
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Default Thanks MrsD,

I see my Dr. tomorrow so I will ask him about the B-12 and the Magnesium.

In the meantime, I am doing natural stool softeners, apples, bran flakes and prunes.

Thanks to all of you for helping.

Ada
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Old 02-18-2010, 11:56 PM #19
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Hi Ada
Alot of us in pain ,dont move around like we should[not that your not] pain will disable a person to limited exercise,and that will cause this problem,,also stretching helps exspecially the torso,,a stiff back will cause constipation,the back and bowels are connected,,,,,,,also , i use alot of olive oil when i cook,,its natural and very friendly and has alot of good properties including keeping regulararity,,,,,,,,,best wishes,,bobber
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Old 02-19-2010, 10:19 AM #20
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Default Hi,

I try to drink water everyday. I usually drink up to 64 ozs.

Bobber, I took a walk yesterday. I take one everyday that it's nice. I got a new pair of Sketcher Shapeups so I am trying to break them in. My right foot is the worst and I am having trouble with it with those shoes. I am hoping I can get them broke in.

I see my Dr. today. I am thinking the Nexium is making me nauseated also. I will make a list of what to talk to him about too. I am neauseated this morning with a headache.

Thanks for the help.
Ada
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