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Chronic Pain, or fuck the Doctors - 2/19/2009 10:17:20 PM   
Hippiekinkster


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Well, not quite. This is a post I made on a chronic pain board. It should be edited, as there are parts which don't really hang together, but this is part of my stance on how people with chronic pain are treated in the US.

"I know many of you out there reading the posts on this site identify with what others have written.  Don't be afraid to join in. This is one of the very few places (IMO) where one can vent. Forget about the fact that the site owner has a book to sell. It costs money to host a site, and I, for one, do not begrudge him this.

I have just achieved decent analgesia. The bottom of my left heel is split open. It's likely another problem from "cellulitis". Now, I have gone through bactrin (is that right?), some IV stuff in the ER, 2 courses of doxycycline, a course of levaquin, and a course of amoxixillin. This is getting ridiculous. I'm not even a doctor, and I know enough to type the bacteria I'm fighting.

It's painful. Not "where's the gun" painful like I had when I had my retinal detachment surgery (somehow he managed to make my trigeminal nerve complex announce its existence), but more like "just another glass of wine, just another 1/4 tablet, maybe I can get some relief.

But this has been going on since early September, and it's really starting to tick me off. What is wrong with these big brains who have gone through Med School and Residency and whatnot? Can't they admit that sometimes they don't know what in the f**k is going on?

Which leads me to the pain guys and gals. I'm really impressed that they are fellows of the American College of Whatsawhosis. Have any of you all ever looked to see what that means? Usually means he/she/it sat through a weekend of lectures, had a cursory test, and that's it. And that qualifies Joe Blow, MD, to treat my pain?

Well, it's better than nothing. I think there should be some way to induce severe pain in prospective pain doctors, so that they have an idea of what's going on. Sure, we'd love to go playing golf and tennis and go ballroom dancing and climb K2 and see Macchu Piccu, but it hurts too much. WE chronic pain people have an understanding of what it's like to lead a normal life, even one that is lived on the backs of us, but the docs, I think, are clueless as to what it's like being in pain 24/7/365..

A friend sent me an article, "Neurontin for Everyone", wherein the scope and depth of the subservience of doctors to the Pharmaceutical insustry is laid out pretty well.  (I started a thread about it, but it went over like a Led Zeppelin ) The same thing goes on on the Pain Treatment Industry. And it IS an Industry, do not doubt. Evidence-based medicine goes out the window when Blue Cross will reimburse 400 bucks for a series of 3 epidurals, which take maybe 1 hour total. OH, that's the doc's cut. The total charge is much more. And the efficacy is, at best, 70% for a particular dis-ease (according to the developers of the tech; yeah, belive it or not, there is hardly any Federal oversight. The studies which show that xyz not only doesn't work, but causes teens to kill themselves, are never given to the FDA. The drug/med tech companies do NOT release the studies that show their drug/therapy is fucking worthless/  VIVA CAPITALISMO!  NO REGULATIONS! CAVEAT EMPTOR! Oh, our drug killed your daughter? Tough shit. Fuck you.)

I really want to know why the medical industry spends so much time and money on developing these so-called "therapies" when a couple percocets would do just fine. The mu and sigma and kappa receptors are what they are, and no amount of "research" will change that fundamental fact of human physiology. Except doctors don't make much money on 10 cent a tablet prescriptions.

WE pain sufferers are at the mercy of these people. From the time when we crawled out of the primordial ooze until around 1930, plant remedies were absolutely fine, and NOT AGAINST THE LAW. What changed? Well, that's the topic for another rant; suffice it to say there was no good Medical reason. We have to be obsequious, and deferential (ass-kissers), and put up with all kinds of invasions of privacy and physical indignities, as well as being used as human guinea pigs, just to get relief.

I don't know about y'all, but I'm really tired of the status quo.

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 9:16:55 AM   
Termyn8or


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I could agree with most of that, but I am a firm believer in finding the cause of the pain instead. I am quite against living one's life dependant on any pill or anything.

Would I rather die ? Well I'll burn that bridge when I come to it. Recently my resolve was quite tested (detail in Gallstones thread over in H & S).

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 9:23:45 AM   
Lynnxz


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I'm not reallll sure what the basis of this rant is, but it seems to have something to to with your foot hurting, and you being jacked off about it.

You said you wanted a couple of percosets. Ok. It'll numb the pain for a bit, you'll put too much pressure on it, and it'll split more. Don't you think that you should be trying to control this apparently resistant infection instead of trying to cover it up? Is it related to diabetes, and if so, could you be doing more to control your diabetes?




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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 10:16:25 AM   
Lockit


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I am living in  a new place... my medical records were not looked at... I was not examined and I was denied the medications I have been on with good reason for the last seven years.  To say I am suffering isn't enough to cover what I am going through.  With the medication I could have some sort of life... without it... no life at all.  Yesterday I moved a light weight plastic bin with toys in it... pushed it and it slid easily... I put some video's on a shelf, vacuccumed about four feet square and took the trash outside to the bin a few feet from my door.  I had to stop and do nothing the rest of the day and now today... I could strangle the doctor I saw who would not help me and basically looked at me like an addict trying to get high without an examination, without looking at my medical records... just assuming I had fooled the last doctor's I had.

Now I am at risk of many deadly things because when the pain is on... my blood pressure is very high, I cannot sleep or eat or move.  They wanted to give me a medication that could thin my blood and cause a bleed and said it was okay to do even with the cadasil... and yet... there is documented proof that a 39 year old man had a bleed and stroked too after two weeks of one asprin a day.  Even low doses will get you with this disease.

Am I tired of the medical community and risky medications they expect people to take rather than a narcotic?  You bet my life I am... and I am betting my life on it.  I cannot afford all the test to prove to this new set of doctor's that I am telling the truth and have a real need, just like I have had to do with each set of new doctors.  What are medical records for it they won't use them?  What... no test?  Nothing but... you must be an addict... go away and get your high from someone else.  I don't want a high... I want my life back.

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 12:31:48 PM   
hizgeorgiapeach


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Lupus and Fibromyalgia - chronic pain is a given with either one, and with both it's beyond a given.  I gave up trying to get allopaths to do anything other than play suckup games with the pharma companies.    It's not going to happen, and I decided years ago that it's not a battle worth attempting to fight.  So what do I do?  I horde what few scrip painkillers I have for the days when if I don't take something I'm Going to shoot myself in the head to get it over with, and the rest of the time I'm particularly careful about planning and time management so I can take breaks, dose myself with effective (if definately Not FDA approved) herbals, and acknowledge to myself that if I go do what I want this week, I may not be able to get outta bed for a few days next week.
 
Frankly, I don't want my various Symptoms treated - I want the Core Problem addressed and treated so that the Symptoms go away without having to be individually treated.  Unfortunately, it's never going to happen.  There is no money to be had in Cures, or treating the Disease - only in treating (and indefinately Prolonging) the symptoms, preferably via the use of chemicals that will create their Own set of problems, which will - of course - require yet More chemicals to treat those Side Effect symptoms........ which will come with their own list of side effects needing to be individually treated, each one with yet another chemical..... etc ad infinitum.

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 1:02:09 PM   
lovingpet


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I have to agree that the OP needs to get to the root of the problem (ie infection).  This actually has the potential to kill you and no amount of pain relief will help that. 

However..... And some folks on these boards know this is going to be a big however..... I have to sound off with my fellow chronic pain sufferers that the whole thing is a real mess and our very existence is caught in the balance.  I don't want painkillers.  Yeah, there, I said it!  I don't want them.  I want to be well.  I do not want a pill.  I do not want a repetitive treatment.  I want the answer.  That is where things are now.  I am trying to get the ANSWER!!!!  You would think I was asking for a piece out of the moon.  I have a diagnosis of fibromyalgia and a vitamin D deficiency.  The vitamin D is not being maintained by my body despite the huge doses.  All treatments for fibro have failed and most only relieved one issue while making other things worse.

There have been no legitimate advances in medicine (read this as CURES) for anything for decades.  There have been innovative treatments.  Ahem... with the less sophisticated tools of our forefathers, they won the battle against many horrible diseases.  How many dollars get throw at cancer research?  And still NOTHING????  What a load of... oh that's right I am a proper lady!

Fine, I may be a little bitter.  Imagine that.  Add to that, that the most effective treatments for many chronic pain conditions is ILLEGAL in the US and it makes even more sense why I may be a bit miffed.  I don't want to be a pothead.  Like I said before, I want a cure, not a drug.  I also want to be able to live my life free of the pain, fatigue, and general sickness I currently experience.  If that means very careful doses of whatever, I will give it a go only and only if it is somthing that will help me on the whole, not just with one thing while aggravating everything else. 

Yeah, yeah I understand.  Think of the kids.  Oh my, someone might abuse this drug or that.  I can't help the lack of parenting and the stupidity of others.  I will also say that, frankly, it isn't as though regulation of ANY kind has kept those who wish to abuse a substance from doing so.  After all, folks have even managed to take something as simple as an allergy pill and make it into one of the most potent recreational drugs available, making it necessary for me to talk in that awful, froggy nasal tone to the pharmacist just to get something to keep me from sneezing and nearly wetting my pant.  Honestly!!!!!!

Oh, and if the issue is that the lovely FDA is going to help with purity standards, then think again.  Look at cigarettes and I have nothing more I have to say.  Aresenic, fiberglass, tar, and what all else and this is considered good regulation for the safety of the consumers????  Please!!!!!!

I am not about to say that all drugs should be legal and that all restrictions should be lifted.  Of course, if that's my choice between what we have now and actually being able to get the help I need, then so be it.  I will teach my children to respect their bodies and make healthy decisions.  I will take care to be wise in my choice and use of any kind of substance whether it be heroin or Twinkies!  Okay, rant over!  Don't hold me to too much of this... I'm in pain and that puts me in a bad mood.

lovingpet


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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 1:11:53 PM   
camille65


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Lockit I could duplicate your first paragraph as something I am going through right now too.
This is something I wrote on a chronic pain site: (sorry for length and swearing lol)

He is going on about how I need to accept the pain. Become friends with it.
Rattles on about how I can make the pain go away if I destress properly...
That I can make the pain of Lupus, Fibro, TMJ go away if only I learn to breathe properly. That I can tell myself I don't have pain and golly it will go away... yeah.

His favorite phrase is "Lets think the pain away!"

Yeah. I am almost in tears because I hurt so much, in a flare up. Can't actually sit or stand. GRRRRRRRRRRRRRRR. Explain that I couldn't even do basic water therapy which means standing in a warm pool and waving my arms n legs. "Lets think the pain away!"

I tell him that the reduction in meds is NOT working and you got it.. I need to think the pain away!

That since 'Breakthrough pain only lasts 2o minutes, just think that pain away!'
Um dude? My breakthrough pain lasts for hours upon hours. Not 20 minutes. I have auto immune problems and arthritis and TMJ. I cannot think it away cuz believe me I have tried.

Exercise in frustration.

Just realized why it pissed me off so much, it was like someone saying "Oh lets pray.. and it will change" and "Oh, it is in your head, just change how you think and you will be better"

He totally tried to invalidate my medical problems... and THAT PISSES ME OFF BIG TIME BUB. I already went through that before auto immune shit was accepted, patted on the head and sent to a shrink when it was my ANA level. Not my mood level!

The medical doctor that I saw for a brief 15 minutes cut my morphine in half, told me that if I use my prescribed (by old doctor) breakthru meds I will 'be fired as his patient'. The only test he did was a urine test/drug screen, no ANA testing, no thyroid testing etc.

I worked for 5 hard years to get to the place I am, and they are undoing that work.

Sadly I was genuinely excited about the combination of medical & physical therapy & pain management therapy. But after leaving yesterday with an armful of drug addiction and alcohol (I'm a non drinker) material, being told for an hour that I can breathe the pain away... well I am discouraged. I've slid back by years worth of improvement, the pain level has become once again unmanageable and fir the first time in a long time I simply want to lay down and give up.


I saw the therapist slash social worker yesterday, I literally could not sit in the chair because my body hurt too much. He told me that the pain is simply marijuana withdrawl!! I really don't get angry often but I am really angry at this crap. Yes I had 3 days of 'awww gimme my doobies back' but the physical pain has a medical reason and no breathing techniques in the world can make it disappear.

Next week he wants to start EMDR with me, something that has no medical backing nor documentation of success. So I am trying to find a doctor here that can both prescribe the medication I've taken for years and understands that auto-immune problems are NOT psychological problems but instead are actual medical problems.


End rant...ugh.

Edited for copy/paste issues


< Message edited by camille65 -- 2/20/2009 1:13:48 PM >


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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 2:01:39 PM   
ncprincess


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Don't you just love being told it's all in your mind?? I'm on the beginning end of the situation. I haven't been diagnosed with anything as of yet. Unless you want to consider each time I go to my dr. and complain of the pain I'm given a script for antibiotics and told I have another sinus infection.  Needless to say, I've made an appointment with another dr that may actually listen to what I'm telling her.

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 2:04:59 PM   
DesFIP


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If they prescribe pain killers, they get their licenses to practice medicine pulled. It is that simple. Despite the fact that we are an aging population who survive with chronic illnesses instead of dying young, doctors who treat pain are presumed guilty of selling drugs for illegal purposes.

You even get this in a hospital where a patient is only days away from death, and only morphine prescribed by the pain specialist can keep them comfortable. The resident will see that the level is too high and order it cut, requiring family members to be there at every shift change to fight for their loved ones.

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 2:09:18 PM   
aravain


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Parts of your post have really resonated with me, camille.

And parts of others' as well.

Chronic pain is horrible, debilitating. Sometimes it hurts my *knees* to sit. Sometimes it hurts to even think about keeping my legs straight.

For a few years I'd go to see doctors... and they said I was imagining it. There was no way I could have the symptoms (swelling, pain, loss of balance, buckling) with how young I was. There was no way there was anything wrong. They told my mother I was faking to get more attention, to get out of school, and who knows what else. For a while... she believed them, despite *seeing* my knees swell to almost twice their size, feeling the strange reactions of the joint movements when I use them, seeing that I'd get physically ill from pain, etc. etc.

And I worked passed it. I self medicated with tylenol and things of its ilk, caffeine and even, for a while, cigarettes, which helped. Then I went to a doctor after getting to college because it was just... unbearable. I couldn't take any more acetaminophen and I just felt debilitated.

SHE was the first doctor who took a look at my knees, at my *physical* symptoms, as well as taking detailed descriptions of what hurt, when, why and how. She told me it was a type of arthritis, but the individual type was inconsequential, what I needed to do was work with the pain, and fix the problem, know my limits, and (especially) push them occasionally. She gave me tips and tricks for when I had to go on long walks, especially with inclines, and effectively told me not to do more than a flight or two of stairs in a day. She gave me stretches, and physical therapy type things to help me work through it. I denied pain medication when she told me that I could still self-medicate, but gave me precise instructions.

And the pain didn't go away. Never away, but it's better. I do the stretches, I watch my limits, I use the tricks. My knees are now (except for rare occasions) no longer a truly limiting factor in my life. They just change it, a little.

Fast forward to now, with this hive and auto-immune disorder (whatever it is) and it's hard to even get most physicians to understand. My specialist told me that I should never *ever* go to the ER anymore with specific symptoms, because they won't be able to help me (versus a quick call to him can get me help within a few hours in the form of medication, or an ER visit WITH him present). He understands and empathizes with the pain caused by it, and has dedicated himself to helping me subvert it as best I can.


But, y'know what? I just don't want to be in constant pain, anymore. I can't remember what it's like, despite the fact that I KNOW that I wasn't living with constant pain around 13 or 14. I just want a cure, I don't want to take pain medications to get through the day (either for migrains, arthritis, OR these hives). I would just like it to not happen!

And you'd be surprised with how many people don't believe me! They don't believe that I can have any of these problems, or don't believe I suffer from all of them (only those they can see). They think it's an excuse and I've (apparently) gotten a slew of doctors to cover for me .


That's another major problem with it. Those people who DON'T deal with this pain, the people who *don't* have these problems are those that are making the laws regarding pharmaceuticals, the policies and such regarding how to deal with patients. They're the people who are making it (in some cases) illegal for some doctors to just *help* us.

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 2:34:44 PM   
Vendaval


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Fast Reply -
 
I have heard similar sentiments from friends and family members and patients.  The U.S. medical system deals with chronic pain patients very poorly and in some cases the underlying causes can be treated and in others it is a lifelong condition.  And no one who has not had the experience can really understand the crippling effect it has on the body and mind. 

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 2:36:44 PM   
ncprincess


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This happened recently with my dad. He was in hospice care last April before passing away. One dr. would lower the amount of pain meds they were giving him. I could always tell because he would be restless and his blood pressure would skyrocket. I'd become a royal bitch at that point until they'd call another dr. to ok giving him a shot to ease his pain.

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 2:48:39 PM   
Lockit


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Kick the doctor in the balls really, really hard and tell him to breath right and think the pain away... let's see how well he does.  They have no idea...  Oh let's give you this medication that will change your brain chemicals, will help you sleep... you only need sleep... you are only depressed... but if this doesn't work... we will call you names... imply you are a lying criminal and at most will give you some new medication with more side effects than what you need the medication for.  Oh yes... it all makes sense.  I can take a narcotic that will help me have some life and be responsible and not become a lying, cheating addict or I can ruin my body with new drugs that may or may not do me more harm because they must get their research money back at any cost.  Yes... I get the picture.  It isn't them in pain.

Many years ago a doctor was making the tv shows who said his wife had fibromyalgia and all that was needed was some over the counter medication... which is dangerous for long term us.  A few years later... I saw his wife wasn't doing so well.. because he sure changed his opinion... and advised narcotic's.  The problem is... many were listening to him during those years and many suffered because of it.  I do ask you... have you ever had a doctor say they were sorry when they cost you in your life and comfort in life or made a mistake?

I have heard... oh... you really are sick... you aren't crazy... oh... you need a narcotic... um gee guys... thanks.  Thanks for the abuse and suffering... year after year after year...

Destress?  Yeah... when they stop acting like prideful idiots and actually treat patient's.

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 3:06:24 PM   
lovingpet


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*passes out joints to everyone on this thread to chill out and feel better*  Just kidding...

um... sort of... well....
not really.... kind of.... maybe!

lovingpet

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 4:32:27 PM   
hizgeorgiapeach


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Lockit, I sat here giggling as I read your most recent comment on this thread - you have NO IDEA how often I've considered a quick knee to the nards of some twit GP or resident.  Fortunately, when I Do break down and go see the allopath, it's a rhumy specialist who is Very familiar with Lupus and Fibro - and who has known me for nearly 15 years, since he treated both my mother and grandmother for the same problems.
 
For those of us with an autoimmune problem, the simple fact of the matter is that there will never be a cure, even if they eventually release something as a cure for things like cancer.  Autoimmune illnesses, while they follow patterns and have specific symptoms, affect each individual sufferer slightly differently.  Any "cure" would have to be tailored to the individual taking the treatment, rather than on a mass basis like you can do with bacteria or viri, or even things like apendecitis or heart attacks having specific things that will treat Any individual who happens to be diagnosed with that problem.  Autoimmune illnesses are a product of modern society, technology, poor diet, polution, and stress = all combining in just the wrong manner, mixed in with genetic predispositions, and stirred in the cauldron which is today's western world.

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 4:40:46 PM   
camille65


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Pffffffft.

You're just not breathing properly! And your mindset is all wrong!



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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 6:15:43 PM   
kiyari


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Fast Reply, and so to none in Particular:

I agree, that allopathic 'medicine' is little more than an arm of Big Bizness.

I would advise, for any who can scrape up the funds to do so, that you find a decent (there's the rub) NATUROPATH.

A naturopath (unlikely to be covered by ANY insurance plan) is a fully trained (read: allopathic training) physician,
who has AS WELL studied/been trained in 'alternative' therapies.

This would be an individual who is genuinely interested in CURING a person.
They take an interest in the UNDERLYING ISSUES which have exhibited symptomatically.

They are a marriage of (W)Holistic and Allopathic, with an interest in actual cure.

submitted fwiw

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RE: Chronic Pain, or fuck the Doctors - 2/20/2009 6:21:09 PM   
Termyn8or


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fr

Sure you could think the pain away, after years of education in the martial arts. But that type of thing is for the immediate, and even if you can hit yourself in the head with a hammer and think it away, how long can you do it ?

I would love to find the actual cure, but information is very sparse on the subject. I did read somewhere about fibro being caused by an abnormality in the upper spine/neck, but I think they have two good reasons for not seeking a surgical cure. One is money of course, selling drugs is easy, that's why so many do it. The other reason is in that area of the body one little slip can turn a person into a quadrupeligic. I would hope that any doctor would not treat that possible outcome lightly, but there is always the possibility of a malpractce suit, and it would be a large one. So money of course rears it's head as usual.

I have also read about migraines being linked to food allergies in some people. However I think they are told about it rarely, rather they go out with a prescription for pills that cost about twenty bucks apiece.

If any of you with chronic pain, or near chronic pain are forced to suffer without medication, take the opportunity to try some dietary changes. Not the usual ones for body building or weight loss, I mean complete elimination of certain foods, one at a time.

If you have no choice but to make the best of it, if you find the key you can be free.

I don't know how much help I can be really, I have already looked into a couple of things on the web, and I pride myself on the fact that usually Google comes up with 1,345,046 results in 0.29 seconds, I have found valid responses and it was 1 result in about five seconds. I know how to put the keywords together, but sometimes it just isn't out there.

I also have a pretty good database on nutrients etc., but they do not mention anything about chronic pain. I really wish I could be of significant help, and that is only partly philanthropic. I would also like to see doctors and drug companies make less money. They have plenty.

Perhaps people via the internet can help each other. Possibly by comparison of diet and environment something can be found. Any ideas ? Post your diet for a week or two along with the flareups or whatever. Some may already have tried it, but if not, I think it's worth a shot. Err, in this particular venue let me reword that - it might be worth a try.

I wasn't going to go on right now, but because of the nature of this thread I should say, with the net, and maybe someone who knows Excel, or some similar spreadsheet program, data could be correlated and commonalities of sufferers of certain ailments could be found. Just a thought. After all, what the pros are doing isn't really working is it ?

I wish everyone well, and to get well. I would also like to see drug company execs and doctors in the unemployment line with the rest of us.

T

(in reply to camille65)
Profile   Post #: 18
RE: Chronic Pain, or fuck the Doctors - 2/20/2009 6:24:18 PM   
Hippiekinkster


Posts: 5512
Joined: 11/20/2007
From: Liechtenstein
Status: offline
quote:

ORIGINAL: Lynnxz

I'm not reallll sure what the basis of this rant is, but it seems to have something to to with your foot hurting, and you being jacked off about it.

You said you wanted a couple of percosets. Ok. It'll numb the pain for a bit, you'll put too much pressure on it, and it'll split more. Don't you think that you should be trying to control this apparently resistant infection instead of trying to cover it up? Is it related to diabetes, and if so, could you be doing more to control your diabetes?



No, I am not diabetic. If you actually read what I wrote, you'd see that I am actively treating the infection (which my be Proteus; I have a "rescue" dog that came to me a couple months ago, and we were at the vets yesterday for an ear infection). You would also have noticed that all that was prologue to my main theme, which is the piss-poor state of pain management in the US.



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(in reply to Lynnxz)
Profile   Post #: 19
RE: Chronic Pain, or fuck the Doctors - 2/20/2009 6:24:38 PM   
lovingpet


Posts: 4270
Joined: 6/19/2005
Status: offline
A point well taken, but these are more difficult to find than a decent GP and there is the added expense that can become crippling in its own way over time.  Serious disorders will take serious money to correct.  I am to the point I have already nearly lost every penny as it is, so cannot afford this route.  I could barely afford it before I got so bad I can no longer work.  Don't even get me started on insurance companies and that whole mess! 

lovingpet

(in reply to kiyari)
Profile   Post #: 20
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