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Posts: 3
Reply with quote  #31 
I would seriously hesitate to ever claim that mmarijuana is responsible for CVS.  I know there are some really weak studies out there that link it but did you ever read the studies?  one of them started with 18 people, 9 of whom refused to participate. It ended up testing 5 people which I don't call a test at all.  That's not research.  I have heard so much anti-marijuana hype out there from various doctors.  They will all tell you it's the worst thing you can do for any reason -- even the reasons it is known to work really well.  The truth is that we will never know until such time as they allow marijuana studies in the US.  At this time, it is illegal to even test it to see if it helps or hurts anything.  Because of that, I wouldn't believe them.  I know in my case, I didn't use until after I had the CVS and it is the only thing that helps me at all.  I'm fortunate that it is legal to use medical marijuana in this state but still every ER doctor I've seen has said it's all the pot!  I know it's not!

Adam Davis

Posts: 8
Reply with quote  #32 
I can really only speak as to my own experience with marijuana and CVS. I am 26 years old and have been suffering for nearly a decade now. When I first started getting these attacks I would have them maybe once a month and I would go to the ER and the doctors would be upset if I had marijuana in my system and they would not want to give me the pain medication that that is really the only thing that helps the severe pain.Early on when I first started getting the CVS pains I was kicked out of the ER several times-being labeled a drug seeker- once by a doctor who refused to even give me fluids saying that I was just an addict there for drugs and kicked me out. I was forced to go to another hospital where they actually treated me right and gave me the hydromorphone and I stayed there for 3 weeks trying to get rid of this episode that was being exasperated by a kidney infection that I had. I am so appalled I'm beginning to become depressed frankly,at how I have been treated by certain doctors over the years especially after being treated properly. Over the years many doctors have acted like bullies when they find out that you do marijuana and it's very frustrating because they don't even take the time to understand the illness even when its their job to treat me.One doctor even went so far as to go into my room after he had already been seeing me suffer and at the hospital weekly for years and say that I must be confused, that I have cyclic vomiting syndrome not cyclic pain syndrome and that he will not be prescribing anymore narcotic pain medications -and will not treat me at all if I continue to smoke-which of course is depressing because hydromorphone is really the only thing that helps a severe attack. So I decided to give up the marijuana use for a couple of years so that when I went to the hospital they would treat me like a human being but I've gotten worse to the point where I'm having to go weekly to to the ER with anywhere from three to six episodes a month so I started smoking again and now that I have it has helped but I'm getting the same problem from the doctors at the hospital refusing to treat my pain. Smoking marijuana helps but it is not the thing that most alleviates my pain though, that is the hydromorphone and I assume that this is also true for most CVS suffers with extreme pain. I have experience witha lot of doctors some that are very caring and that just want to help and some that are very critical of marijuana and dilaudid use and treat you like a drug addict just for trying to alleviate your symptoms. I am currently having a terrible episode right now that has lasted over 2 weeks now because they keep sending me home from the hospital early without my pain being treated property and the episode being aborted so I basically go home suffer for a couple days as much as I possibly can until I am forced to come back.I'm in the hospital now and yesterday I saw a gastroenterologist that told me that the marijuana use was actually causing my symptoms to worsen and that it was going to literally kill me and then after he left he recommended to the General Hospital Dr they they stop giving me the dilaudid. This is horrible and many doctors have this way of thinking about them that is bigoted and it only ends up making us CVS suffers suffer more. Are any of you sufferers out there experiencing anything similar I would love to hear some thoughts from my fellow survivors?

Posts: 277
Reply with quote  #33 
Hey Cvssufferer2457,

I don't post here anymore as the tone on these boards with regards to cannabis is much the same as in the ER— that is why they have this topic buried in a password protected segregated forum—....i.e. , I have been told by Ruth Novak "we know marijuana makes it (cvs) worse".....when we know no such thing, that is absolute BS.  But your post rings an all to familiar bell with me so I wanted to respond, found this in my email this morning.  A good deal of my posts hear over many years have been on cannabis topics.

I am 43, first onset at age 4.  I have been on every pill out there save the ones I refused to take outright in my teens and late 20's.  NONE of it helped.  I have largely beaten my CVS over the last few years with nothing but diet and cannabis. Cannabis, for the 30 years I have been using it, is the ONLY thing that "works" on a day to day basis, always.  I can count on it when I can count on little else.

The doctors are full of SHART.  PERIOD. they act like they know about cannabis when they are not trained in plant medicine and actually have NO IDEA how cannabis works in the body for the mostpart. The doctors will kill you with conventional pharma long before the herb gets you! Doctors are unable to study cannabis, so how on earth could they know more about cannabis than the people that actually use the substance? they DONT. Marijuana has the cabibility to put these idiots out of business....of course they are not down with it.  It threatens the very model they depend on to make their Mercedes payments.

the drug seeker stigma is real in the ER and docs office and is compounded by marijuana use, it just makes it easy for them to dismiss you and invalidate your suffering.

I live in the middle of nowhere Alaska and I cannot even find a doctor to take me on as a patient due to my records having history of opiate rx.  it is absurd, I cant even find a doc to rx opiates (I only use perhaps once or twice a year in single doses for absolute breakthrough pain, well into my episodes.) but the few angels of mercy that have rx'd me opiates over the last 20 years, now haunt my medical records and I am now being denied care simply based on that fact alone.  I am not shittting when I say I have had, in a decade, maybe 8 pills of dilaudid and perhaps a dozen percoset and a jar of vicoden rx'd to me, to deal with an amount of pain, that I cannot believe I even survived quite frankly.  I WOULD NOT BE HERE WITHOUT CANNABIS.   I get my opiates at the dentists office where they give them out like candy, and I just rathole them. I can even ask my dentist for pure oxy, instead of percoset with acetaminophen as that shittt is poison, and he is like, no problem. try that at the ER!

They charged a doc with MURDER last week for the deaths of 3 of her patients from opiates.  The docs are TERRIFIED to rx opiates right now, and if youre a "pothead", you are just going to be dismissed as a drug seeker. And that means we suffer. and we f'ing SUFFER.

I am the type of patient that tells my doc everything. I am super honest. why pay for the service and lie right? I don't tell the truth about cannabis anymore. it does NO GOOD and only hurts you in the end with the medical community at large.  So I just keep that to myself.  None of their business.  how DARE you tell me how to treat MY own suffering with something I know is effective and SAFE, so that you can give me rx poison that will not work, will harm me, and is expensive to boot.

Trust your instincts, if it works for you, F them. You have even went to the lengths of removing it and nothing improved. you have ruled it out as a causal factor.  Use what WORKS.

the pain med thing will always be a challenge for us. you cannot see our pain. it is not a dangling limb, where someone looks at it and goes, oh my, I bet that hurts like hell. Our pain is easy to dismiss, especially in the ER when they are dealing with life and death cases. They want us out of there. They don't want to see folks in the ER for vomiting.  even though ours becomes life threatening if left to progress long enough, and folks in this community do lose their battles with this illness, we are not going to get understanding or compassion in the ER.  It is salt in the wound when you are in that kind of pain and shape. 

It is nothing more than bigotry. This forum being in a pw protected subsection. the treatement from docs. it is based in nothing more than FEAR and IGNORANCE. there is NO TRUTH OR LOGIC TO IT.  Those of us paying attention, know what cannabis is capable of.  It is capable of treating SCORES of illnesses that have not responded to 100 years of pharmaceutical advances.  We knew 100 years ago cannabis was a treatment for epilepsy. We are find out now, 100 years later, it is probably the BEST treatment for epilepsy.  Compounds in cannabis CURE CANCER. this is not hyperbole.  And you are going to tell me cannabis is HARMFUL?  The substances in cannabis MIMIC your bodies own endogenous endocannabinoid neurotransmittors. they are SAFE and EFFECTIVE for that reason.  They are the only neurotransmitters in the body capable of retrograde feedback, therefor they naturally BALLANCE the system, as they are the only substances that function that way.  Things like Benzos only serve to antagonize or agonize activity on the receptor sites, burning them out and causing horrible addiction with repeated use.  Pharma CANNOT do what cannabis does. that is why pharma fails and cannabis WORKS. But the "specialists" in this community advocate the use of benzos, SSRI's, antidepressants and scores of other PROVEN TO BE HARMFUL PHARMA. some of the stuff has black box lables on it, not that the patient would EVER know that when filling an rx.  And you look to all the other communities that are finding cannabis to be effective.....epilepsy, autism, and you look at the dead end pharma all those patient are on. guess what? same shtit they give us as well. SAME EXACT DRUGS. and they fail FOR ALL ILNESS. They are bulshittt bandaides that mask and compound symptoms and cause havoc in the body, thereby leading to more imbalance and futher illness. it is the snake eating its tail. It frankly insanity. It is an approach that has been proven to fail time and time and time again, and when it fails the answer is to up the dose, not find the cause of the illness to begin with. Ours is no different from any other "mystery" illness....autism, ptsd, epilepsy, they are ALL treated with the same dead end pharma.  That is why we have made ZERO progress treating those disorders in the last century.  And that is why people in states like CO are finding that cannabis actually WORKS for those disorders, and it works safely.  Why is it so hard for sooooo many people to believe in a PLANT?  Instead, they put their trust in pills. it is absurd. Plants are part of the natural order of things, life, pain, illness, suffering, nourishment.  Pills are not. Even the best and most useful of our pills such as anti biotics, those considered to be great advances in modern medicine, have now been outsmarted by the NATURAL bacterias and virus's that simply evolve immunity and soldier on.  You cant beat or cheat nature, you can only work with it ultimately. 

Oh and what do you know, cannabis is a natural anti fungal, anti biotic, and anti viral also.

Do what works my fellow friend in what WORKS.  and listen to YOURSELF, not some idiot telling what it is like to live in YOUR own body.  And I feel for you painwise my friend, I really do.  You are not alone and it is HORRIBLE.
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