I keep wondering how much of a problem there really is. They talk of "prevalent opioid use", but nobody seems to ask if this use of opiods is necessary. And it drives me batty that the people who are being penalized and stigmatized are the people who are taking these opiiods because the first reaction of anyone when they hear that you're taking the big drugs, is to very concerned sit you down and talk to you about addiction. They don't sit you down and talk to you about how bad your pain must be in order for your doctor to prescribe the really big drugs. Maybe what's missing here is some more in-depth studies of how prevalent significant pain problem actually is. Maybe that will give us a reason why opioid use is so prevalent - maybe it's necessary. One of my favorite rebuttals is to mention that I am "addicted" to the big pain killers the same way a diabetic is addicted to insulin. They allow me to live my life. They are necessary.
You mentioned in a post a while back that if prescribed correctly, the risk of addiction to opioids is one quarter of one percent. To me, this indicates that the potential problem lies not in the people taking the drug, but in the people prescribing the drugs, i.e., do they prescribe correctly. "Solving" the problem by restricting the ability to prescribe opiate rather than by thorough education of doctors ends up penalizing people who are not the problem, i.e. people living with chronic pain.
I'm also deeply concerned that the committee that was responsible for voting this REMS plan down appeared to have been salted with members who have a political agenda. Otherwise, why would you involve people who have no experience in treating pain? this decision ought to be made by pain experts, not by someone whose motivation is suspect. Come to think of it, this entire committee is suspect.
Sorry. Didn't plan to hijack your comment box. 
Let's not forget that the main fault here, lies NOT with the people with legitimate chronic pain endeavoring to get their pain meds, but with people who do NOT have a legitimate chronic pain problem, getting heavy drugs in order to get wasted, or worse, to sell them at ENORMOUS profit....
It seems to me that this probem is two-fold. Most of us, are going to doctors covered by insurance, to fill prescriptions, also covered by insurance (if we're lucky!).
Those who OUGHT to be investigated & legislated against, are the doctors who ONLY take big buck CASH patients &/or only SELL these DRUGS at unheard of profits, from their offices.
People with real chronic pain, should be able to seek out professional medical practitioners who treat chronic pain with prescriptions to be filled at reputable pharmacies. What is happening now, is that these reputable care-givers are literally AFRAID to do what they have been trained to do, for fear of investigation &/or losing their medical licenses!
This must also be done on a case-by-case basis. History has taught us in SO many other areas, that one bad apple SHOULD not spoil the bunch, just as one bad DOCTOR, or one patient who is a DRUG DEALER, should not spoil the reputable medical practices of those who specialize in this very important area.
Starting a database of patients is in every way unconstitutional & an invasion of privacy. HOWEVER, a database of PAIN DOCTORS who abuse the privilege makes much more sense. It would be fully constitutional, because these people are getting paid to practice medicine, should belong to medical societies which focus on this problem & if they are engaging in ANY shady practices, SHOULD be thrown out of the profession.
Being a long time chronic pain sufferrer, I can't help but be tilted to the side of the patient. However, let's be realistic about this. Many of these so-called "patients" are NOT so & are making money hand over fist selling these medications which most of us couldn't possibly afford.
AND let's face another fact! A pain doctor selling pills out of his or her office, or writing prescription without regard to patient safety NEED to be put out of business, in order for those who ARE professional to go on practicing medicine WITHOUT the stigma of being a "pain doctor".
It is SO easy to tell the difference in both the patients AND the doctors, that these endeavors to shut down the "BAD guys" is a job that any ONE of US could do.
I hereby VOLUNTEER my services! Why don't the authorities ask US to help?
Karen, Thank you for keeping us alerted of the current events relating to pain.
It is truly a sad decision which has been made by our officials. Even sadder is the fact that there is such a rampant problem with " illegal" drugs and yet they want to focus on " perscription drug abuse". Every day many innocent people loose their lives due to the " illegal drug traffic" yet they seem to obviously overlook this problem.
I have posted previously that I have been trying to locate a new physician after almost 19 years with the same physician due to the fact that my husband was " retired" early and we must move for him to be able to even have a remote possibility of finding employment. After almost six months of trying to locate a new physician who will accept me. I have an impecable history and have used the same pharmacy for all these years as well. I even went to one of the best pain clinics in the nation for a month to go off my medication just to see if I could exist without it, and exist was all that I did for over six months. It was with great relunctance that I had to go back on the medication. I've never asked to increase it or ever asked for a perscription earlier than it was due. It is very disconcerning that many of us have such a poor quality of life even with the medication, and now we will face even additional requirements. It is very unfortunate that there was only one member of the committee representing patient interest. It is clear that no one on the committee has ever lived with chronic pain or had a family member who did. It makes one wonder what happened to " of the people and by the people ".
Please don't take our pain meds away I have pain 24/7 suffer from FIBROMYALBIA I would rather have hip surgery every day than have fibromyaltia for 1 day I should know since I had both hips replaced and my fibro was more painful than the surgery. I do not abuse drugs I use them to help me they do not take all my pain away but ease it so I do not have to put a wet rag in my mouth and scream!!!!!!!!!!!!!
Reputable doctors already hesitate perscribing strong pain medication to chronic pain sufferers. It is quite easy to tract those unscrupulous few that are in the business of supplying drug abusers. Pharmacies are computerized. Let technology monitor the doctors' perscription histories.
As a person with several chronic pain conditions, I want each and every member of this panel to realize what pain and suffering many of us endure. We make it through the day with the benefit of pain relieving medications. With out them, many people wil not be able to endure their pain. Some will no longer be able to work or care for their families. Many will just give up and commit suicide.
Try to imagine some time in your life when you were in real pain, or very ill. Now, how would you feel if you knew that every day, perhaps forever, that is how you will wake up? Realize that the medication you could have had to relieve your suffering is being withheld. That is what I have to look forward to.
Please think of me and others in chronic lifelong pain.
Doctors are taught to not feel your pain and the government usually defers to whatever doctors want rather then the good of people suffering pain-after all it is likely many politicians are dubious about people who are in pain.
But REMS whether it is "balanced" in the minds of the fda will undoubtedly have a chilling effect on people seeking pain medication. And the issue here is who gets to decide what the public good is- its certainly not the people who suffer pain.
It is important for us who have pain and the people who care to let the government and health care industry know we need to have a greater voice in public policies regarding pain care-failing that i wouldnt expect real change or improvement in pain care anytime soon.
From what I have seen, people that want the drugs because they want to "feel good" will get them. I know a few people personally that do that and it makes me SO mad! I know people who buy and people who sell. It isn't what most people think either. There is no way of controlling it, I have known people who are actually in severe pain, go to a PM, get the meds and then sell them because guess what - people pay a lot of money for them! These are the idiots that make it bad for those of us who really need them, but I don't know what can be done about it. If you mandate doctors, then those with a real need are not going to be getting them either. Personally, I don't have much sympathy for druggies or those that abuse them because they screw the rest of us and it isn't fair to lump everyone into the same "maybe they will" category. The real problem IMHO is that they do NOT go after the druggies. I have a sister-in-law that has 42 counts of prescription fraud this year alone; each year she acquired more and has moved from Utah thru Nevada and back again all to get drugs. She ran, she got caught, she spent 15 days in jail and was released - big frickin' deal. It happens every year! There are no stiff laws or penalties - WHY? Because they don't really care. This is just another way of the government to control us. If they really cared, they would go after people like her, lock them up for a year until they got the drug out of their system at least. It is ridiculous.
The symptom of the problem is misuse/diversion of medications. The underlying failure of government and the healthcare industry to take pain seriously and develop effective primary prevention, curative treatments and safe/effective comfort-oriented care and pain management is the cause of this problem. For if we had all the aforementioned there would be a much smaller need for old fashioned opioids and much lower prevalence of diversion
I spend every day of my life in intense pain. I am not given pain killers. I can no longer work and I am now asking for disability. I stay on a heating pad most of everyday to the point where I now have permanent discoloration of the skin on my back. When the pain is at its worst I take massive dosages of over the counter sleeping medication to keep me asleep. I have in the last 2 years frequently gotten to the point of suicide. It has gotten so bad that I have made out a will and started to save money for my cremation. I do not feel that I will ever be able to actually live. I can't go for a walk in the park, ride a bike, I can't run, or take my kids to a museum. A lot of days my eyes are so bad I can barely see. I can no longer read books to take me away. Due to my ongoing pain and illness, which doctors are not treating at all, it is better for me to just get it over with and stop torturing those around me. When I tried to address this issue (suicide due to pain and 0 quality of life) with my doctor he tried to admit me into a mental treatment facility. I guess it is more likely that I am crazy than it is that I am sick. I think that it most definitely all comes back to doctors and their total lack of Empathy. Oh yeah according to the doctors I guess my predisposition to addiction is greatly increased by the fact that I have tattoos? This should be a hate crime.
Thank you very much for your concern. I don't really know how anyone could help me I guess. I have a disability lawyer and I am going to ask him about a malpractice suit. I think the only thing that would help is more info. I am getting that from sites like this. I'm following new theories and reading other people's experiences. I have been diagnosed with degenerative disc disease, fibromyalgia, and rheumatoid arthritis. All of these diagnosis were then taken away. They went so far as to declare that I don't get migraines either. I am also having a lot of neurological problems that seem to be similar to MS. The support of others who have lived through this is helping at times when I think I can't go on. And my 3 little girls would be devastated if I was gone. I keep fighting but I'm getting really weak now from dealing with this 24/7. I think that if I had pain medicine I could at least take care of simple daily events. Fear of increased pain and no medical attention for it has very much caused me to limit my activities also. I really think that if people who are sick stand up to defend their rights it will help this issue overall. But we really need people who are not sick to stand up for us also. As most of have found out that we are easily ignored for being lesser individuals or discredited for being "drug addicts". I am 27 now and I started getting sick when I was 19. I was really young and because of that fact I am told a lot that I didn't contribute enough to society to deserve better medical care. And another thing....Why do none of my doctors speak English anymore? I don't understand this. How am I expected to explain to them what I am experiencing?
The problem is not so much the doctor's. It's society as a whole that needs more education and some tough love. We can make it impossible for legitimate pain patients to get relief, drug addicts will just move on to the next "drug" on their hit parade. The problem is how we are raising our children. It's society's lack that is the root cause. Band aid on a bullet wound. Until we address that we are not going to win, or even dent, the war on drugs.
Pain sufferers don't need tough love-they have enough problems as it is. What they could use is some compassionate and humane care and a society that cares.And doctors are certainly to blame in part, for the degrading treatment of pain sufferers as they refuse to educate themselves in pain care. And this is the most mentioned barrier to adequate pain care. In addition too many doctors are quick to dismiss people in pain as histrionic malingerers or drug seekers. Isnt that strange as most doctors push drugs..i mean medications in the first place.
I just lost my son-in-law in a car accident 5 weeks ago. He was addicted to pain medication and doctor hopped. He was very good at it. He passed out behind the wheel and hit a tree and died instantly. He had a newly filled prescription in his car along with others. He was in pain but did not take his medication as prescribed. We truly believe these medication contributed to his death. Doctors are not held responsible for their actions. And they are not holding their patients responsible for taking their meds appropriately. They just keep giving out the drugs like candy. Sorry. I truly believe there is a huge problem. PS: My daughter is 51/2 months pregnant with no husband now and is now living with us. This is not how her life should now be.
Im sorry for your families tragedy. Families shouldnt lose loved ones to addiction to pain medications its an outrage.
Society should come up with better solutions to pain and also do a better job of dealing with addictions. Pain killers have been known to be addictive for a very long time and government slow to come up with alternatives. With all the talk of REMS youd think they would talk about coming up with better system medication or treatments for pain-but government and medicine are addicted to the status quo of poor pain care-after all theres no cost to doctors or politicians for the sorry state of affairs in pain care. And to them a death due to pain medications isnt seen as there fault but rather the moral weakness of the person taking the drug- or of course the greed or immorality of a few doctors. So instead of changing their failed pain care system they blame the victims of poor pain care
While I feel very sorry for you loss, I feel this IS the problem! People that want drugs are going to get/find them irregardless. This isn't the doctors fault. Doctors are regulated, they are pursued, they are punished. How can they be sure the patient isn't doctor hopping? My sister-in-law does it all the time. This is the responsibility of the person doing it - no-one else. I am sorry for your loss, but people like your son-in-law screw it up for the rest of us. I don't have much sympathy for druggies. Yes it is sad but people choose that path. It doesn't mean that I or anyone else with legitimate pain should have to suffer because of it - but we do! Drug dealers are a dime a dozen, the only reason people seek a doctor is the drug costs less that way - I have heard all about it.
I think you are all missing the point here. He had lots of pain also. He had a neck operation for the pain which did help him but then he started having trouble with the other disks in his neck. He was in lots of pain. He was a college football player with lots of joint problems, as do I. I just choose to handle it without too many drugs. I do it holisticly. Not everyone can do that. I understand when people are in pain they need certain drugs. But I still feel that doctors are too quick to prescribe them. If I need something I can get it. I do not have an addictive personality but many people do. There has to be some control. doctors have to accept some of this responsibility. He was a wonderful guy and should still be with us. For many people there are many different routes to take to stop the pain. It is just easier to take a pill. And before everyone gets mad about that statement. Yes, I believe there are people who need drugs every day to function. I have RA and some days are unbearable for me. I am not talking about those people.
Thank you Dave for getting the point. There has to be a way to stop these doctors. I agree with you. The poor victim is blamed for wanting to be out of pain. Doctors should have much more responsiblity. Why can't there be a National System where everytime a doctor prescribe a medication it is recorded somewhere. I know it sounds whey out there but they do it with other situations. We are in the 21st. Century. JC
Well, as I said, I am very sorry for your loss irregardless in our differences of opinion. I am not sure where you live, but in my state "Utah" it is almost impossible to get pain meds. Their is ONE pain management specialist in a 100 mile radius of where I live and she is tough! I am still under medicated and it makes me mad as hell; but with all the drug abuse I believe that is the primary reason. Other doctors will NOT prescribe pain meds and that's a fact. Even the pharmacists around here are jerks about it. I had one pharmacist actually send me a letter to my home and tell me that I needed to be worrying about being addicted and blah, blah, blah, which I shared with my doctor - who about blew a gasket when she read it. I switched pharmacies, but still, I can see the way they look at me when I fill my prescriptions every month. I WISH I could find a doctor to give me what I need to be comfortable, but that just isn't going to happen. I don't know where all these pill pushin' doctors are, but they sure don't practice in the grand state of Utah.
Despite that, I work for the gov in the heart of the ghetto and I know, I could walk down the street and buy whatever I wanted for the right price any time of day or night. Would I? Probably not, if I was desparate and in severe pain without any relief? Maybe... It isn't that hard to find if you want it is my point, IF you are that desparate and willing.
It sounds as if you believe pain care consists solely of addictive pain medications. And thats hardly the case. But if it were true the use of those medications is a chose by the medical profession and government. And we can chose to require government and doctors to come up with better solutions to pain care from primary prevention of painful conditions, to safer pain medication, curative treatment. Currently only six states require physicians to have any education in pain care- we can ask that all doctors have adequate education in pain care. Currently the government spends about 1% of its research budget on pain-even though 100 million suffer from pain- we can ask them to spend 5% of the research budget on pain. Currently pain care is not a recognized specialty in medicine- we can require that it is. Currently medicaid, medicare and other insurers reimburse poorly for pain care- we can als ask that to change. There are always choices- and we can make a difference by making better choices
In my particular case, after numerous surgeries and resulting arthritis pushing on nerves, the drugs ARE the only form of pain control for me. I have non-stop nerve pain and opiods are the only thing that allow me to continues working, which I have no choice on and to live at least somewhat of a decent life. I have given up almost everything I love to do just to be able to struggle in to work everyday. There are no more treatment options - just the drugs. So yes, in some cases - that's just the way it is.
Marion
I too had pain and went to many physicians and unlike yourself their treatments werent effective in alleviating my pain but fortunately i found a way to overcome my pain.
One thing i learned in trying to overcome my pain is that there are always new things to try to deal with pain and to never give up. Many people in pain learn to get their minds around pain . Whether its prayer, fasting, meditation, quantum touch, epo, music, energy healing, jin shin do, access consciousness, cold laser, activity scheduling, treatments,hypnosis, gamma globulin, boswellia, spring forest chigong, acutonics, bowen therapy, global posture reeducation,constructive tan ren therapy, cbt- to name a few. There is no end of what people can try to overcome pain.
Its unfortunate that you believe there are no alternatives to taking pain medications but i dont foreclose on what is possible for people in pain.
If your SILaw was addicted to the point where he was doctor-shopping (you say he was good at it - do you hold the doctor responsible for not being able to see thru his act?) and driving in that condition just, exactly, how do you figure the fault lies with the Doctor and, by extension, the chronic-pain community? How can you use your SILaw's story to advocate for even less access to pain meds than we have now? If it weren't for the actions of irresponsible people like SIL vast numbers of innocent people wouldn't be sufferring right now.
I'm sorry to be so harsh but you don't know what I'm living through and I don't run stories on my doctors but they are so afraid of the jack-booted thugs that are ready to kick down their doors that they betray their oath to their profession. And it's people like you who give the media and government the prejudice they need to make war on sick people like me. I watched my wife die last spring in agony because of this and I am filled - FILLED - with hatred for all the compassionless dolts that can't see how their prejudice hurts others.
This is just what people with real pain need, more government, interference. Let me tell you of a recent incident. First with a little background info. I suffer with RSD (Refles Sympathy Dystropy) in my right leg which is nerve ending pain 24/7. Unless you have suffered this kind of pain you have no idea what it can do to you but RSD also affects the bones, muscles and skin. A light breeze hurts, anything but soft materials against my skin hurts. I cannot bend my leg much, I cannot put much weight on it. For these reasons I have screwed up my back and have pain in my lower back so go to PT 3 times/ week. On my monthly visit to my pain mgt. Doc I was told to pee in a cup. Now when I originally signed a peper with something about random testing I asked the doc about it, he said you don't have to worry. This was about 2 to 3 years into treatment. It has been almost 7 years of disability for me. I always use the bathroom before I go to the doctor's because, frankly, it's uncomfortabl;e for me to do, and I have my PT scheduled right after. I also wear a tens machine so I don't want to have to fight with that until I takeit off before PT. I go to my appt. and they have a new person there for about 2 months and the nursing asst who I see if I am not seeing the doc says she's helping get the office in order. (The office staff are wonderfully friendly people but their office skills stink. For example, countless times my monthly appt has disappeared from the computer, blood work faxed to them could not be found). But after 2 tries with pain docs, this one was very versed with RSD so it was a good fit for me. Anyway, I am told by this new person I have to pee in a cup. I say I don't think I can she says I must. I ask if I can bring it home (naive me, not attuned to the impotance of having to do it there in the office because of drug laws or whatever). No I must do it there and I must do it NOW! I try and it is not past the necessary line on the cup. She says drinl some water try again. I try several times and am hurting a bit because the toilet there is low and makes me uncomfortable. I drink 6 cups of water and nothing. She says I CANNOT leave untill I go. What is she the peepee police? I tell her I am 25 mins. away from PT appt and am in tears. I am not sure what they are testing me for and ask the nursing asst. She says they are testing me to be sure I am taking all of my prescribed drugs. I am sort of in disbelief, I don't know what to think of that statemtn cosidering I have finally gotten the right combo of drugs to give me a little bit of quality to my life. I never really have complete relief of pain but it is more manageable. Finally we come to an agreement that I can come back after appts. to pee in the cup. I leave go to PT. My hubby also takes me shopping for gifts for a baby shower we are hosting for a family BBQ/Shower for my son and daughter-in-law who are coming to visit in a few days. The are pregnant with our first grandchildren, twins. It turns my mood around, Afterwards we go to lunch and I drink enough to need to use the bathroom so we hurry back to the doc's office. I pee in the cupand am tempted to overflow it and hand it to the peepee policewoman dripping wet (my PT therapist idea, he is too funny). She apologizes for what she says is regulations. I tell her it's just that I do my business at home because it is uncomfortable for me to do so and I don't want to have to fight with my tens machine while I am out. She glances at the machine and apologiozes again. My point of this story is, do I need to bedoing this more often, or doing something that causes me pain? I am in pain enough, why do I need government interference in my medical life? It interferes enough already!! If I thought the government was going to make my life easier then that would be a different story but lets get real here, it's only going to make things more difficult with more paperwork, more peeing in the cup and more rigamrole. I don't need to be standing in any lines (painful), waiting in any rooms (did I mention that sitting up for any length of time is painful) or peeing more often in any cups(painful). Let me go in talk to my doc about what is going on, what my concerns are and get my scripts. Its bad enough that I have to go every month because of the regulated drugs I am taking. My life revolves around 2 doc appt/month and PT appt. 3times/week, I don't need anything else to affect the quality of my life. Leave it alone and let me enjoy what time is left in my days to be with my family.
Well, your not going thru anything unusual - we all do it. I pee in a cup whenever my doctor tells me too, I get drug tested at least every 6 months even tho I've been seeing her for years and it costs my insurance company 1,200 every single time! IT IS BS! But, it is the law... To me it is an invasions of privacy and a BS deal, but what are you gonna do? Gotta have the meds to be able to function. I see mine monthly also and go thru the same routine as I'm sure everyone else does. Then on top of that, I work 44 hours a week for the gov and it stinks! I am considering a federal suit because I have begged to be allowed to work from home where I wouldn't have to struggle to get up every morning, wait for my meds to kick in and then go to the office. I did work from home for a couple months after shoulder surgery and it was heaven! All I get is a big run around here tho - because other people might be upset if they let me. Tough! Anyway, it's a long boring story but it sucks. Gov is a bunch of stupid idiots and anyone who wants them in control of our healthcare is nuts!
Donna- so petition for changes in pain care. Unless you and i speak up and ask for change the government and health care industry is content to keep things the same with pain care. For forty years there has been neglect of pain care. Even infants continue to receive painful procedure without analgesia. Even last year In A Call to Revolutionize Pain Care In America"-written with support of several physicians they readily admit pain is still "tragically overlooked". Lets tell governmetn and healthcare the cruel neglect of people in pain will no longer stand. Lets not stand for it anymore. Lets work together for humane treatment of people in pain
The Invisible Project is considering a letter writing campaign for September. The American pain Foundation has one but im not clear as to what they are doing.I believe it will go to President Obama but it may also go to some key members of Congress, as well. I think most any letter indicating ones problem with pain as well as indicating what changes are desired from government/health care will do the trick. Ill update you when i know more.
POETRY -
My Curse
My pain is what Hell must feel like.
Pulling me apart inside out.
Burning, pounding, stabbing.
Feeling there should be a pool of blood swelling round my feet.
My head explodes like a meteor smashing into the ground, making a tremendous, thundering noise. Noise like no other you've heard.
Ripping apart the earth and all that had dwelled there since the beginning of time.
How is it the body can swell with pain of such magnitude that you're sure you'll die, yet you aren't allowed that reward.
Left to deal with the never-ending relentless abyss of anguish.
People who see you have no idea that you're twisting and turning with a monster inside of you.
That it envelopes you and every move you make.
You try to think, to open your eyes, but your head is sure to collapse should you move even a millimeter.
I'm sure this is Hell, my cross to bear.
No one can see, so they do not believe.
Doctors are an evil joke, the villian.
You wish you could touch them, passing yourself into them, so they can experience what your every minute consumes.
Let them be blessed with my demon for just a week. Ha!
They would curl in a corner, crying out "But I didn't know, take it away".
Only now you've my curse, take it to the grave with you, only in death will you be free.
"But I have prescription drugs for you", yet there aren't enough to drown out the drilling, suicidal pain that IS you.
The drugs must be limited for you may become addicted.
" Lest I be without this dreadful state of being, addicted to something that works a short time."
It would be easier to become a whore to the drug pimp on the street corner.
Let me drift away to a land of nothing so I can keep on living. What irony.
Does no one see or care?
I must hide my pain with something other than my true being-fearing I would scare away those who see me naked.
My pain bursting forth like a contorted circus clown, scaring babies into tears, children running for the consolation of their parents.
Not knowing what terrible thing I must have done to be in this condition, one of millions like me.
There is no recognition for us, we must be silent and on the sly. No one wants to know of us, for we may pass something onto you.
All I ask is for the ability to sleep through a single night and in the waking hours to know what it is to laugh again.
For even that gesture creates the feeling that my face is ripping apart.
Words continue to describe my despair, but to what end?
That I be taken seriously and something be done?
Maybe in the next lifetime.
But not today, nor tomorrow.
This is my curse.
That is a heavy poem, but it certainly has it's merits. So much truth in there. Sick as it is - I have wished I could give others what I feel for just one day. My husband especially - who doesn't seem to understand why it is so hard to struggle in to work every day, or why I am so trashed, or why I keep asking for help to get things done at home - to no avail. My co-workers, my boss, yeah, I'd like them each to experience it for a day. Just one day - they'd change their rude, ignorant attitudes. Their looks and glares, their all-knowing smirks when I'm late for work in the morning.
I wish I could have copy's of everone's comments, to let 'People' who don't know what's it like to spend every day & night in pain. Lets others read what or how we spend our day & night, to others who tell my Husband 'I should be working, or to on me to keep the house cleaner'. Or to let others read 'Who know what we should do, what herbs, or the Dr's we should see, to help us.' Well 'Aunt so & so did this & that, now she plays Golf everyday'. Guess were all dummies, why didn't we think of doing whatever, or were just 'faking' to have everything done for us....YA RIGHT!!
I keep thinking that some of the 'Law Makers' someday will be in the pain we are. I want them to think back, to when thay passed these Laws on, who gets Medication, & who doesn't.
It could sound 'cold' or 'hard' of me to think like that, knowing how so many of us are fighting for proper 'Pain Control'. I just want to think of an old saying...'What goes around, comes around.' It just makes me feel better, sorry.
Since I was 8yrs. old & started on my 'Pain Cycle', so I was in pain. I never let me stop me from wanting to do what I 'had' or 'wanted' to do. Mom would just make me 'swallow it' & keep on going, now that I'm older. I had a few other injures, it just takes me longer to get things done.
Yes, I deal with this too... Except that I am OCD so I push myself to do it all and then I just collapse - which pisses people off - like my husband who just can't seem to grasp what is happening here.
You would think when people that supposedly love you, see you give up almost everything that you love to do in life - they might suspect that you aren't giving it up because you want too!
I don't know - somedays I am not so sure a bullet isn't the answer. I am so tired today, so depressed, I am sitting at work miserable, hating every minute, knowing my pain meds will be wearing off soon and then I'll have two hours of misery to deal with before I am supposed to take another one - because my doctor doesn't give me enough to last. What a life, what kind of life is this? It isn't a life - it's a pile of crap.
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<!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin:0cm; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]-->I look at my own journey over the past 3 years, to HELL and BACK. There has been a time where I nearly fell of the rails. The Chronic Back Pain train, the sciatica, the internal damage, and the UNFIXABLE Central Nervice System Neural network that is so damaged and that I can't even use a Heated Pool, beach or any cold water to help with pain management.
If any part of my arms or legs touch a cold object (ie Steal or brick/slate) it is like brushing up against a row of sharp knives)
I have looked at all types of opioids over the last 3 years from patches to tens machine running 24/7.
My current level is very high in opioid intake daily just so I can have some type of life (for about 3 - 5 hours relief is all I get these days, and the next step is to have a PUMP under my skin which I wish to avoid at all cost 4 as long as I can)
A review of my condition was ordered by a Pain Clinic, the outcome of this was not to hassle my GP in relation to proscribing me the level of opioids I require.
For further review in a 12 month period. I still need to see a Specialist on regular intervals.
I am concerned about the developments over in the States, as what happens there is sometimes copied in Australia.
Karen you need to ensure this thread is included in any future consultation as many of us will not write directly on the FED site.
My pain on the COLD weather days makes my PAIN levels hit 9 - 10 of 10 and medication hardly takes the edge of some days. But the last couple of days have been 5-6, 6-7 however, my internal issues and the sciatica is playing up, some days you just can't win.
Without the level of opioid currently experiencing, I don't believe that my live would be very worthwhile. And I would be in a Hospital BED.
Most of the time Dr.'s are reluctant to prescribe the correct level of opioids to stabilise a Chronic Pain Patient. A few make it bad for the rest of us that are treated like addict’s, where 98% of the Chronic Pain patients are turning to opioids to give some quality of life, believe me 3 - 4 hours of reduced pain levels is better than 24/7 PAIN at 8-11 /10 if you follow my drift.
:) PainBack07Au :) Positive power also is helping control the pain, and keep busy...just a tip :)
I couldn't agree with you more. I am sure you are definately in more pain for longer periods than I am by what you have said, and I don't know how you do it. I have about 2 hours in between doses that I could just freakin scream, the siatica gets so bad. I cannot imagine only have 2 to 3 hours of relief a day. I feel for you, that has got to be horrendous.
I get so mad that doctor's are so hesitant to medicate us properly - it's such crap. It is all because of addicts that use and abuse and screw those of us that just want a freakin life of some kind! I just have no sympathy for drug addicts. If they kill theirselves on it, well tough. They are big boys and girls and should know that 5 at a time is probably not a good idea. I have thought about killing myself many, many times because I felt I could not stand one more minute of this non-stop screeching nerve pain. How can anyone expect us of all people to be sympathetic to that? If people are so worried about their drug addicted family members then go get them some help or treatment. Don't try to regulate us even more - that is not fair and there are many here who are under medicated! Regulating it more isn't gonna stop the druggies from getting them anyway - anymore than banning guns will stop criminals from getting them, breaking in and shooting you because you don't have one anymore. Stupid theory, but then that is how the gov works. Good luck to you, I do feel for you, as I said, I cannot even imagine...
Thanks for the knid words Marion.
Tonight I have to tell my partner that I have to give up work, I doubt with my problems that I will work again in any job. So I could travel Australia, giving lectures to medicos about Chronic Pain and HOW to Diagnose and Treat it propperlly, but if I take my break through medication (Oral Morphine) 2ml will get rid of some of the pain but I am unable to think straight, drive, or do anything much than lay down on the bed and SLEEP, it like knocks me out almost.
My body does get some rest, but not a great life style change.
Looking at full disability pension now, and I am still young.
If I was to stop all my medication like 1 doctors report said, I would be in 15/10 Pain, and would not even be able to type on a computer key board, or walk from the bed to the toilet. (Fun that would be) I think not.
I have 8 medical practioners saying one thing and 2 sellected by the insurance company saying something else.
The time to get this whole thing sorted has just dragged and dragged.
Now I am unable to work! Nerve damage to the spine is something I would not recomend to ANYONE, EVER, IT is a LIFE WRECKER....
My family is effected just a much as me.......
PB07Au
I have had every procedure known to man to reduce the pain that I suffer. I was in Physical Therapy for TWO years ( most people cannot believe that ) for three days a week, water therapy, massage and acupuncture. I did all of these before I would even break down to take a single tablet. The pain level that I have is through the roof and I was bed ridden for many years. I have a combination of diagnosis which confused the physicians and kept them from making a diagnosis. I have 4 different conditions all of which cause chronic pain that I live with each day, and they are all ( with the exception of fibromyalgia ) life threatening. If I cannot get my pain meds, then there is no hope for me. My pain meds do not even cover my pain. I'm sorry, but evidently I don't reside where the drugs are dispensed freely or either I'm not in the loop. All of my drug records are availble for any physician to review, and all who are getting their pain meds through pharmacies have such records as well. We have a record. I abide by the rules, but yet I get penalized and still have not been able to locate a doctor where we are living. My husband has to drive 7 hours one way to get my pain prescription and take time out from his work. I have little tolerance for those who abuse the system because they are doing nothing but making it more difficult for those of us who are law abiding and cannot even get the drugs to just allow us to make it through each day- not to mention there is no quality of life. Also, I had a failed surgery which caused nerve damage for which there is nothing that can be done. That is in addition to ther other diagnosis that I have. I've never shopped for doctors except in trying to locate one where I am now living. People who don't abide and live by the rules give the innocent a bad name. Each person has a responsibility to live by the rules and we all suffer the consequences of our actions and the actions of others when laws are broken. I would rather see a doctor practice medicine and treat me rather than having to try to protect himself. If more restrictions are placed on physicians, many have told me that they will simply retire or change professions as they won't be able to do what they trained to do for all of the government beauracy. I wish it was as simple as " wishing" or " thinking" my pain away, but it isn't when one has the diseases that I have and the nerve damage. I usually never express my opinions very freely, and I've been very relunctant to speak out, but my pain is very real and this is my life each and every day. I just read somewhere where someone wrote " I'm addicted to pain medicine" just as a diabetic is " addicted to insulin". I thought this was a brilliant statement and showed great insight as to what chronic pain patients live each day. I pray that one day society as well as physicians will realize the toll that pain can take on a life.
Unfortunately neither medicine nor society will know what you go thru unless we who care about people in pain work together to have our voices heard and work to get some humane response from the larger society. I personally dont suffer physical pain but it pains me to hear others in pain and so im looking for solutions and have done my share of petitioning medicine and govt. SO lets work together to see that we can obtain better care and more compassion for people in pain. The Invisble Project wants 50,000 to sign up and help others with pain. You can do this or you of course can do many other things to help yourself and others in pain. But if we dont work together i for one dont think the rest of society or medicine will get religion anytime soon when it comes to responding to people in pain.
Dave,
Appreciate all of your postings and advice. Please keep us posted as to the best action plan for us to work together to get our message heard and getting the public as well as physicians educated as to the challenges that chronic pain patients live with each day. Many other diseases with less people suffering get the attention and thereby get funding, but unless we do work together, the pain that we endure each and every day will never get brought to the forefront. I am shocked that you have such a strong interest yet you are not in pain. Thank you for so willingly sharing with us this vital information and the procedures that we should follow to let people know the type of life where we exist. Maybe one day this will help others who suffer from different types of illness that are not yet recognized for the " life changing" .
I , for one, want to thank you for your interest and willingness to help us reach " national recognition".
Thankyou for the kind words. Currently NYS has a bill- NYS Senate Bill 2723 that would require all doctors to have education in pain management. Unfortunately the Chairman of the HEalth Committee refuses to bring the bill up for a vote. Please contact or write NYS Senator Hannon to allow the bill to have a fair chance by allowing a vote on it.
While this bill for more pain management education for doctors might sound great, I\/m not so sure it is the sole answer. My pain management doctor seems well versed. Unfortunately the nature of my disability is not well managed with what is currently out there. It takes millions, (maybe billions) to research and find cures for any diseases - look at what they are going through looking for cures for anything from cancer to diabates, MS, you name it. My not very well known disability (RSD) is way down on the list and is not going to get the kind of funding needed to find out why some people get it let alone how to handle the pain issues let alone cure it. I can always hope for a miracle cure but my best bet is to put on a brave face my not so bad days do the things I love to do and on my bad days lay low and let life pass me by. I don't hold out much hope for help from our government, I just pray the government doesn't make it any harder for me to get the meds I need to make it through the day.
I disagree. The simple truth is most doctors know very little about what is available-there are thousands of treatments for pain- a recent study showed most pcps know how to use three medications for pain. Another recent study showed over 70% of pcps failed basic test of musculoskeletal system knowledge. 85% of pain conditions are musculoskeletal. Doctors and the health care industry have failed to make intelligent use of what resources are available to help people in pain. In 1985 the World health organization said much progress in pain care would occur if physicians made use of what is available- its 25 years later and sadly physicians have made little use of available treatments to help people in pain.
Well maybe that's true in some cases but in my case, with my disability and with my doctors it's not. My doctor diagnosed my problem early on but the insurance company dragged it's feet in agreeing to the diagnostic testing needed to confirm it so I could get early treatment and possibly control the pain easier. I had research all the visual signs after he diagnosed it and he was right. We have run the gamut on all possible ways to control pain while having to fight with the insurance company even with proof of possible good results. I research every possible pain treatment on my own. My doctor has told me about studies in other countries. So I know in my situation I am getting good care while having to fight the red tape every step of the way between insurance companies and government regulation. In the meantime I am the one who suffers because of the red tape and bad decisions and regulations. If some of these people could hobble, limp or stagger in my shoes for 24 hours they would shut up and quit with the regulations. I just don't trust the government to help me any more.
No one could run the gamut of treatments for painful conditions. For example i doubt youve had primal reflex release technique, neurocranial restructuring, pain neutralization technique, ozonated blood, argon gas, nitrous oxide, talk away pain, chelation therapy, neuro rehab centers release technique, platelet rich plasma injections, cell support therapy, eav, bodytalk, eft, tft, attachment point therapy, dry fasting, rapamycin, fight or flight therapy, insulin coma therapy, earthing, german new medicine, sanum remedies, rife barrr machine- to name a few. No one could live along to even do all the monotherapies for pain-let alone combine them at the same time. You have chosen to believe in certain things-which maybe not true when it comes to pain care. RSD and many painful conditions are quie challenging but i dare say you havent come close to exhausting what is available to help u with pain
You have to know what kind of pain therapies are right for each disability before you start talking about different kinds of therapies. You obviously know nothing about my disability. Like I said before I have also been controlled by what the insurance company has allowed but everythinbg that has been tried for my disability that has worked before I have done. So not all pain therapies work on all disabilities. Not all pain disabilities are alike so I think you have to consider that.
If youre referring to rsd-then obviously you have not researched all the therapies that might work. Its not uncommon for people to foreclose on what can possibly be of help. And since i keep in regular contact with some people with rsd who are in remission i dare say i know somethings about rsd. I suggest you do more research.
You certainly can do fasting on your own, you certainly can do qi gong like spring forest qi gong, cosmic freedom qi gong, dahn yoga, healing codes, theta healng, tft, eft, and you can use edta with chlorella and garlic on your own for chelation. You can do mud packs on your own. Even ultrasound you can do on your own for about $250-theres no law that says you are limited to only what insurers pay for. I know from having had a chronic pain condition it takes a lot of determination to deal with pain successfully. You can use some shamanic herbs online to reset your nervous system-they dont cost that much. Bee venom- doesnt cost much. Im not a doctor and cant give advice on treatments but one thing i do know is you cant leave stones unturned when you want to overcome chronic pain-and i am ten years free of chronic pain
Just by seeing what you wrote tells me you don't quite completely understand what RSD is. There is really no sense in going back and forth about this because quite a few of the things you mentioned I am physically unable to do. You can throw terms at me and say things don't cost much..be venom? We are really starting to scrape the bottom of the barrel when you spout off that that will help put my RSD in remission. This conversation is over because I am now sure that you think you are being helpful but my physical condition is beyond anything you mention. You don't know that I am unable to stand or sit or bend my legs or that I have tried yoga and meditation. You don't know anything about me. Like you said you are not a doctor but you think that if someone does not agree wioth you then they are wrong. You have the right to believe anything you want but that doesnot make it right for everyone. And what is much money for you may be a lot of money for me. Thanks for trying but we will not agree here.
Also mud packs? You do know that with RSD anything touch the skin is like sandpaper rubbing against don't you? I guess not or you wouldn't have mentioned it. I don't think you know as much about RSD as you think you do. I am not sure about many of the things like fasting, garlic for chelation? That may work on some kinds of pain conditions (I don't know what kinds though) but not all
Mud packs have worked for arthritis and i have heard people with rsd use it with benefit. If you want to see improvement then dont let anything stop you. Dont let your own beliefs stop you from finding answers for rsd. If theres nothing out there to help with your rsd-then find or create something that works-then youll be helping yourself and others to find a new way to deal with rsd.
Well i can understand that your pain can bias you towards what may work. You seem to have focused on just what research says. Only 10% of medicine is evidenced based. You keep saying i dont understand rsd- you wish to curse the darkness instead of light a candle. And so given your desire to foreclose on what is possible instead of continuing to look for answers- you may lose opportunities to find what works. And whether its protein quality control mechanisms at the cellular level such as the ubiquitin proteasome system or mtor, or mapk, or substance p, or pkm zeta or the nucleus annulus, the angular cingulate, chronic reactive microglioisis, or nociceptive flexion reflex, or proteoglycans- i think i know something about neuropathic pain. So agian i recommend you continue to explore whatever is available to help yourself with rsd and if you cant find something then create something to deal with rsd
You don't want to hear what I am saying. With my symptoms and my disability I CANNOT do the things you are offering. While they may work for people with some disabilities they cannot work for me because of the natire of my affliction. If you really knew someone with fukll-blown RSD you would know that they cannot have anything touch their skin where as that cause unbelievable pain. Where I have RSD - in my legs - I cannot stand for long, cannot woalk without assistance, cannot bend my legs more than 20 degrees. So I am not closing my eyes to some of your suggestions like mud packs and yoga are NOT possible. My sister and borther-in-law own a whole wellness clinic and they are certified yoga intstructors so I have not closed my mind to alternative therapies. They have helped with relaxation techniques but there is only so much I can do. If you asked any one who knows me I have a very positive outlook but there is nothing out there to change my situation at this point for right now. The things you are throwing out may just work for someone with arthritis but arthritis is Nothing like RSD. As I said you truly don't know RSD if you think I can do some of those things. But my philosophy for me now is take what I'vr been given and move on. Thanks for trying but there is nothing in your suggestions that can do anything for me. I will not be reading or responding any longer. You are very welcome to your opinions. It is not do me any good to argue with you, and I really don't want the negative feelings as it doesn't help my pain levels so I think I will end this discussion on that note.
The time is coming when it will be akmost impossible to get out of pain. These people making the decisions have never experienced Chronic Pain and how you have two choices; manage the pain, or kill yourself! Medications are made for a reason and the reason for opiods are to control pain and help people lead a functional life. It is already like giving up your firs born to get any kind of prescription, then you are considered a "RISK". I have RSD/CRPS and have never experienced such terrible pain in my life, however, the health care providers think we live in the old West and drink a bottle of whisky and just deal with it. They are totally wrong! Pain medication helps THE MAJORITY of people. Simply because a MINORITY abuses them, these panels side with the MINORITY. The logic is just not there. When I travel out of the United States and I need medication, they do not treat me as a criminal, or a drug addict. They are compassionate and truly care about controlling my pain any way they can. We live in a screwed up society.
I promise you, when it is more difficult for people to get pain medication, who really need them and cannot get them, they will turn to the street and buy whatever, JUST to get out of the pain they suffer. Instead of "protecting" the public, we are making the war on illegal drug use worse!
I am the only person responsible for me and my body. We don't live in a Gray's Anatomy program, where our physicians go home and educate themselves on our disease and how to better control the pain. Physicians are "car wash" clinics now. In for 10-15 minutes then out. If your problem is too difficult for them to manage, they will boot you out to find a doctor "with more time".
Why do we allow OUR Government to do this? I pay my taxes. I have always been in the highest tax range before acquiring RSD/CRPS. I expect them to be empethetic and understand that the MAJORITY RULES, not the MINORITY!
I heard a statistic that 25 people out of 10,000 ended up in the Emergency Room in 2006. We don't know why they are in the ER. Maybe they are 80 year old people who forgot that they took their medicine and doubled up. The Government is working on their own, stupid statistics. Let one of them spend a single day with me and that would give them a true insight as to how imporrtant these medications are to the MAJORITY of prescribed users.
Hi again Karen,
Didn't the governor nix that bill? Lord help me, this subject changes so fast that I can barely keep up!
I'm not sure. The latest thing I could find on it says it was "Referred to Health" on Jan. 31, 2011. Here's the link: http://assembly.state.ny.us/leg/?default_fld=&bn=S02723&Summary=Y&Actions=Y&Votes=Y&Memo=Y&Text=Y
Hi Karen,
I'll read through that when I've got a few extra minutes. I was referring to a "law" being pushed through the Florida Senate & which I believe the governor is vetoing....hmmm...is it possible that a Republican could do the right thing? 
As a result of my memory problems, I'll have to re-read the latest articles so that I can at least discuss it with some semblance of knowledge.
David
I have been in chronic pain for 6 years! From a car accident, i have had disk replacement i also have crushed disk in my spine that couldnt be repaired the left side of my body is deterorating. Which causes chronic pain, i have fibromyalgia and the car accident stimulated it...i have osteroarthritis, carpal tunnell! from the fibromylgia i have all the painful diseases that result from fibromylgia..after the car accident i rec, pain medication to help releive painful symptoms up until 8 months ago! When my doctor decided that i was depressed and put me on a bunch of anti-depressants.....i been suffering everyday since! i get shots of lidocane and trycycline, cordozone shots! sometimes 3xs a week my back is scarred from small needles. everytime i rec a shot theres a chance for the doctors of punchuring my lungs....im allergic to nsaids and ibuprophen!
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Dear Karen, OMG ! Our glorious gov. at work again. As I sit here in pain I could cry about this for myself and everybody who is suffering w/ pain. You can bet that this commitee will get my opinion, maybe more than once. As the population ages it's only going to get worse, because as we age our pain becomes worse. Thank you for the info. Wishing you a bearable evening, Pie.
Sioux- im behind you on that and wrote to the Commissioner of the FDA after being told by her staff that if they were interested in my opinion they would call me. Obviously the Commissioner doesnt want to hear from the public regarding the issue of pain care. As Texas Pain Inititiative indicated in their report in 2007 we have poor pain care, in part, because there is no cost to those decisionmakers. And so in September- pain awareness month I will be making phone calls and sending letters to government and health care officials telling them they need to be much more considerate and responsive to people in pain and give us a greater voice in the decision process.