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 08-09-2013, 09:07 AM #11
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It is madness when you think about logically...I mean yes, marijuana has side effects - but are they any worse than the side effects of constant morphine, or tramadol, or even ibuprofen? My bet is probably not. But if you are tested and have even a hint of THC in your blood then you are a hippie drug-user and not to be trusted with any other strong medicine. It beggars belief really.

It's a true shame of our times that even campaigning on the issue leaves you branded with a social stigma. In a hundred years, our ancestors will laugh (and probably cry) at so much of what we have done, and so many of our ridiculous beliefs and rules.

Hope you sleep well folks, I'm off to try... ouch ouch

Bram.
I've often thought how folks with RSD back in the 1800s, for example, coped with RSD and got to thinking.......There were no gate keepers. If one needed morphine one was able to acquire as much as they wanted. My wife now takes handfuls of Ibuprofen, done with the gate keepers for now. So, modern in medicine we may boast, many with long term horrible pain are worse off today perhaps than 150 years ago?
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Old 08-09-2013, 06:34 PM #12
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I keep checking my guide her waiting for it to magically appear

It is legal for medical use here. I'm looking into getting my card and already have someone who is allowed to grow and supply to help me. My pain doctor does not support marijuana, but he has no problem loading me up on lortab and other medication with no worry about me needing my organs to last the rest of my life... lol
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Old 08-09-2013, 06:55 PM #13
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Lol fbodgirl!

The closest I can get is knowing a guy who knows a guy who might know a guy who knows a dodgy dude who might be able to get him some.....for a price....nudge nudge, wink wink.....

And if I do get some I don't have many choices about getting it into my system... I can smoke it (lung crap, stinks, messy), bake it into cookies (really? What if my kids get hold of them?!), use a bong (don't even know what that is lol). I'd much rather take a neat little pill of a definite substance than risk my health smoking something which may, or may not, be marijuana. It could be any kind of strength - the gentle wafty deep thinking type, or some horrendous skunk version that will turn me schizophrenic and rot my few remaining brain cells.

Why oh why can't the law and medical boffins realise that this drug just came to our consciousness the wrong way round? Ok so the hippies mellowed out on it first. But now we know it might have medical uses, why can't we investigate it properly, make a pill that administers the stuff safely and in a measurable quantity, and just accept the fact that there will always be some folk using the stuff out on the fringes...

I am flat out scared of ending up whacked out on drugs. But by that I mean things like horrendously high daily doses of morphine that leave me unable to function normally as a human being. If MMJ were here - tested, legal and safe - I'd try it like a shot. But it isn't, and as long as the flag-waving, blue-rinsing, buttoned-up, tight-trousered brigade have a crazy manic voice in the media, we won't.

Oooh hark at me. I get like this sometimes when I find a hobby-horse to ride up and down on....

Bram.
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Old 08-09-2013, 07:38 PM #14
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Default Hi fbodgrl

My pain doctor would not support this issue either. This state does not allow it. I too am allowed pain killers, which hurt organs. I also would lose my medicare if I ever did this. So much for freedom to choose in this country, or in least the majority of the states. I am getting older, doubt it will happen in this state while I am alive. ginnie
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Old 08-10-2013, 09:30 AM #15
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My pain doctor would not support this issue either. This state does not allow it. I too am allowed pain killers, which hurt organs. I also would lose my medicare if I ever did this. So much for freedom to choose in this country, or in least the majority of the states. I am getting older, doubt it will happen in this state while I am alive. ginnie
What if it was legal in your state? Would it effect your Medicare? How would they know? I ask because I haven't had my SSDI approved yet (waiting on my hearing)
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Old 08-10-2013, 09:46 AM #16
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Default Hi fbodgrl

I don't know to tell you the truth. I do know that Obama care has a clause in it that will require drug testing for all medicare patients. My pain specialist did require this when I first went there, but has not tested me in over a year. I still am afraid, as I can't take the chance that I would lose my benefits. Just that alone hanging over my head is enough to pause. Maybe doctors are required to report, I don't know. I do know that my particular docs. would not approve even if it was legal in this state. I have questioned them. I also admitted to trying this years ago, and yep it is in my records. There is a stigma against this in my state for sure. All I really can do is sign the petition in favor of it. The whole mess is utterly stupid, over a plant, really..... do you know they classified it worse than cocaine and morphine? They consider it the worst of all the drugs. Now to me, considering all that I have read, it is only a way to control people. This is about politics, and controlling the population. Maybe we have to look up Obama Care and see for sure, if medicare would be in jeopardy in legal states. You have a right to be concerned! I also think if you get SSDI, or medicaid, they are going to require testing, as they don't want you to spend money on this substance, legal or not. What a mess...ginnie PS, my medicare part D won't even allow me asthma medication, they are never going to allow TCH!
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Old 08-12-2013, 02:31 PM #17
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Originally Posted by ginnie View Post
I don't know to tell you the truth. I do know that Obama care has a clause in it that will require drug testing for all medicare patients. My pain specialist did require this when I first went there, but has not tested me in over a year. I still am afraid, as I can't take the chance that I would lose my benefits. Just that alone hanging over my head is enough to pause. Maybe doctors are required to report, I don't know. I do know that my particular docs. would not approve even if it was legal in this state. I have questioned them. I also admitted to trying this years ago, and yep it is in my records. There is a stigma against this in my state for sure. All I really can do is sign the petition in favor of it. The whole mess is utterly stupid, over a plant, really..... do you know they classified it worse than cocaine and morphine? They consider it the worst of all the drugs. Now to me, considering all that I have read, it is only a way to control people. This is about politics, and controlling the population. Maybe we have to look up Obama Care and see for sure, if medicare would be in jeopardy in legal states. You have a right to be concerned! I also think if you get SSDI, or medicaid, they are going to require testing, as they don't want you to spend money on this substance, legal or not. What a mess...ginnie PS, my medicare part D won't even allow me asthma medication, they are never going to allow TCH!
I'm not so sure there is a drug testing clause for those on medicare because of Pot. My wife has medicare and because her very limited choice of doctors coupled with DEA threats to most Pain specialist, she no longer uses medicare or sees any chicken-chit doctor. Those narcotics did little for her but make her constipated, although in her earlier days with RSD they were of benefit. And she felt insulted every time they drug tested her. She was always compliant to a fault. She said she would not use pot as a pain killer unless it was legal. But on a federal level, not state, if they ever impose restrictions on doctors who treat those on medicare, then people should raise holy hell.
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Old 08-12-2013, 04:15 PM #18
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I finally went to my primary care doc & told her I wanted to try Marinol. I have tried every drug percocet, ultram, opana, lyrica, neurontin savella, vicodine, morphine plus many others that didnt work and took my brain away. I tried smoking, bought a vaporizer (no smoke and less toxins), candies, baked goods, tincture oil then finally one day tried a chocolate bar that works. I only take a small chunk and the effects lasts 3-4 hours. It costs $15.00 per bar which is a little pricy but worth every penny since Im no longer on other drugs. I researched Marinol and took the info to my doc. It took me 1 week to figure out the dosage. The pills come in 2.5 mg, 5mg and 10mg. It is synthetic and is not as effective as the real stuff but for $5.00 for 90 pills it is worth it. It is normally prescribed for cancer patients (nausea) and anorexia. I am in so much pain I get physically ill and do not want to eat. My use is for pain but it helps with depression also. My insurance co pays for it and my doctor supports me because she knows how much pain I am in. One last note...I can totally function and it has calmed me down so much I am crying less and have more of an inner peace which helps me deal with this horrible disease.
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Old 08-13-2013, 02:12 AM #19
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Here's a link to this documentary. Thanks for all the feedback!

http://www.youtube.com/watch?v=c-bYi-LkDTo
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Old 08-13-2013, 03:40 AM #20
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Here's a link to this documentary. Thanks for all the feedback!

http://www.youtube.com/watch?v=c-bYi-LkDTo
Thanks so much for posting this Vrae

Wow. WOW. Obviously they don't mention CRPS (who would ) but you can see the potential - calming and repairing the brain, pain reduction, seizure reduction etc are all things many CRPS sufferers can identify with.

I found myself sooooo frustrated that the research side of cannabinoids is so hampered by the 'hippie pot-head' side of the drug, which seems to be used by companies as a reason NOT to look at it seriously as a potential medical drug.

This documentary shouts loud and clear that MMJ could be an amazing medical breakthrough in many terrifying diseases - BUT the THC part of the drug needs to be taken out of the equation so that the medically active and interesting part can be studied properly. The fact that they have a strain so low in THC and high in the active ingredient, which is used medically with great success should surely mean that the doctors can isolate and use just that strain for research, and not get all wound up about the risk of patients getting high....

I find it medically bizarre that this fight is going on - unless you stop and think about the way the medical community works. Just looking at that guy with the diaphragm condition and all the dangerous drugs he used to take makes you realise what is really behind this reluctance on the part of drug companies to look at MMJ seriously. They wouldn't make as much money. If doctors are prescribing ten different strong drugs to a patient to treat symptoms, why would they want to replace all that steady income with just one?

Big drug companies make billions because people are prescribed their products by doctors. Potentially, MMJ could take away millions in revenue from them. Let's not pretend for a second that drug companies would smile sweetly and do what is right for the patients, when it would mean taking a big hit financially. Or that medical practices who have agreements with these companies would just throw that mutually-beneficial partnership out of the window.

Here in the UK it feels even more taboo and many years away from any possibilities.......

I'd try it tomorrow given the chance to use the medical stuff. I don't want to smoke or get high. But the active drug? Yes please.

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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