Karen Lee Richards has captured my thoughts and feelings on this matter quite succinctly
I literally go through of hundreds of Ibuprofen when I'm in pain. I fear asking my doctor for anything to manage my pain because it will make me look like a drug abuser, weak or unmanly. It certainly is not a constant need, but there are times when it would certainly make life more bearable.
Don't EVER feel unmanly when it comes to anything you may need your doctor for. My brother has suffered from migraines for years. He wound up in an ER one day and the doctor did not believe my brother needed pain medications. Per haps, because my brother was a long-haired musician which shouldn't even matter. Anyway, my borther told the doctor to stick his manly part, to keep it cleaner, in a drawer and slam it on him a few times and that would be the extent of my brother's head pain.
I went to a conference once on chronic pain conducted by Dr. Joel Saper of the University of Michigan medical college, who specialized in migraine and fibromyalgia among other chronic pain disorders. He sent someone around to collect any questions we may wish to write down and then chose a few to answer. Mine was one. I asked why am I treated like a drug addict because of severe migraines and, in one case, turned away from a hospital with a note on my permanent record that I should never be given any pain meds. At this point, after seeing many neurologists and basically being a guinea pig, the only thing that would make this pain go away was a narcotic. My husband was livid but we had no choice than to leave -- and then get stuck with a hospital bill for nothing.
Be your own advocate. Cry if you have to. But be firm about your pain. It's the only thing I know that works. Take someone close to you if you have to to help advocate your very real problem. Men seem to forego treatment more often than women. If you would all speak up the sttistics would be astounding and doctors would have to stand up and take notice. Good Luck!!
Karen, Thank you. This has been my Mantra for so long. I guess it came from growing up in a law enforcement family, then going on to work with law enforcement myself. I can't get it out of my head.... guilty until proven innocent. I'm so frustrated. How does one prove innocence, and why should they have to prove it to get the treatment they need? Why should the innocent suffer for the sins of the guilty?
I'm so busy. I read the posts here, but don't often get a chance to comment on them. I'm making the time today.
I saw the dark side of those who deal in drugs and those addicted to them in jail. I also have seen the dark side of fear... fear by physicians that they have no control over what happens to those prescriptions once they leave their hands. Fear they will lose the jobs they gave years of their life for.
Yes, there is a war on drugs. Yes it is a tough one and a just one. It would be nice if getting the illegal users off the street were the priority - - no demand, no supply - - instead of going for the easy targets (registered physicians leaving a paper trail) without concern for the collateral damage that results.
It's only pain, right? And pain never killed anyone, right? (donk!)
Well Said Karen,
I found out I have sacral nerve root cysts and sending me to a NeuroSurgeon.So my pain doctor gave me 1 more pull a day.LOL!!These don`t work no more cause i`ve taking them for years.So anyways I hope the GOV will start helping us instead of covering up our problems.If there is anything I can do to help let me know.Hugssss Ya!
Pam
I have just been diagnosed with RSD (Reflex Sympathetic Dystrophy). Unfortunately, this diagnosis came after 8 Months of being treated for Fibromyalgia! The only medicine I was given by my Physician is Lyrica. I cannot tell you how terrible this drug is. It has ruined my teeth, I was 155 pounds, now I am 210 pounds and it would knock me out worse than taking 50 MG of Valium (always at the wrong times). Yet, it did not help my pain, but I was afraid to stop taking it, thinking my pain would get worse.
I live in Paris, France and my Mom was terribly concerned about my condition, that she found this specialist in the USA. He is a "Physical...something Specialist". He ordered these tests, including a nuclear bone scan, to finally determine that I had RSD and NOT Fibromyalgia. So, I finally thought "Good, now we KNOW I am in pain, so please give me something to stop it immediately". Well, I was wrong. This Doctor is AMAZING; he is a great diagnostician, his memory is incredible and he graduated from Harvard Medical School. What more could I ask for? Nope!
He sent me home with this "packet" of steroid pills, that I have to take for six days. He also gave me a prescription for "Lidoderm Patches" and finally, he is sending me to Physical Therapy. Yipee! Nothing he gave me made me feel better than when I was in his office. First of all, I am still tapering off the Lyrica 450MG to zero. I have to cut them down by 50 MG per week. The patches he prescribed are very small and my Insurance only pays for 30 per month (I heard that they are well over a thousand dollars to purchase). I have to decide where I hurt the worst and then stick them on, ignoring all of the other painful places. Guess what? I have not noticed one bit of difference. As for the steroids, I am almost finished with the pack and the only thing I notice are side effects. UGH!
Something I did not mention in the beginning, but I think it is important now, is that I was in Medical School for the first couple of years. I learned a lot, but not everything. However, the one, most important thing I do remember, that all physicians learn; The very first thing you do for your patient, no matter if you are in your office or in the Emergency Room, is "Stabilization". You must stabilize your patient and make them comfortable and OUT OF PAIN, even if that means giving them NARCOTICS! A Doctor must always err on the side of making the patient comfortable and stable. That is a Doctor's job.
So, I hope my story might be read by at least one Doctor, who is going to get that patient, who is in terrible pain tomorrow and do the right thing!
Antoine
Dear Antione,
I know this is a month behind your response but I hope you'll still be able to read this. Your side effects from Lyrica is what caught my attention. Well, I shouldn't say that, your whole response caught my attention, the side effect from when you were on Lyrica gave me some questions!
I've been taking Lyrica for some time now & have had the same weight problem as you said you had. I could run anywhere from 130lbs-150lbs,(depending on how active I was able to be), but since starting the Lyrica, I'm up to 220lbs now! I honestly do NOT eat that much & my greatest sweet tooth consists of Lite Yogurt & Graham crackers.
The Rheumatologist that prescribed Lyrica to me said, the med only has a 10% weight gain effect. I'm finding more patients having this type of reaction. -Since quitting the Lyrica have you been able to lose weight or notice any change in your body or symptoms? You also mentioned that this med had an effect on your teeth, would you mind telling what it has done to them? I would like to be aware for myself & others whom have asked me questions about being on Lyrica.
I have been DX through the years with Fibromyalgia,RA,Lupus & RSD. I can truly sympathize with you dealing with a chronic illness & pain. I hope you find someone whom is willing to do the right thing & DOCTOR you & your PAIN!
I have my own "war" story, what I've had to go through to be DR'ed, DX & treated. Not only having the stigma's with having a chronic illness but you throw chronic pain in also, makes you quickly find out who you can count on. -Finding out who you can't count on is just as painful as the illnessess pain...if not more at times! I know I'm not the only one to be shocked to find out that the one persons we're taught to trust & help us, can be one of the people you CAN'T count on!
Treatment for people with chronic pain has to get better, I wish I new how I can do more to help! I don't want anyone to have to go through what I did.
I'm happy you finaly have the correct diagnosis, I wish you best luck in becoming pain-free too. Take care & gentle hugs!
peace, laughter & miracles,
Bambi
I was never in chronic pain until a car accident in 1980. A kid in a BMW cut me off trying to beat the light. I could not miss him and hit him broadside. Then came the lovely experience of a Personal Injury lawsuit that went on for weeks and months and years! No broken bones - how much pain could I be in? Doctors could not a single find reason to do surgery - so after weeks of physical therapy they still could not tell me why I was in so much pain. So, he prescribed me Soma - an addictive drug. I never filled it.
I called my attorney and told him that I was sick of idiot doctors just wanting to pad the bill to make more money when I was the one who was suffering. He sent me to a rheumatologist who then put me into the hospital for three long weeks of intensive bed rest. More padding of that bill. He also gave me shots of cortisone and lidocaine into my back, into my neck, even up into my skull! They definitely helped, but I had no idea how dangerous cortisone is to take too frequently. When I was to be released I had one of the worst muscle spasms in my back that I had had ever, but I told the nurse to not tell the doctor. I wanted out of the hospital. I would return to the doc's office for more shots every six to eight weeks.
I finally told the attorney I was sick of doctors and getting no relief from pain. Then I was told that there was a ceiling on the kid's auto insurance policy on how much I could win for my injuries. What? I am left with permanent injuries that will follow me through life and this kids gets off with no injuries at all and a 'ceiling' on what his insurance will pay me for my suffering? There is no justice for our pain.
In 1997 I fell at work becasue they washed the floor during the business time of the business day in a very busy furniture company. I was running for the phone and down I went in a twisted mass of legs and arms landing right on my right knee cap. Oh, there is a physics formula that could have determined how many pounds of pressure per square inch of my body when I fell, but all I knew was I was in agony! Did the people I worked for come to my aide? No. Did someone call 911? No. Was I sent to a doctor? No. Was I sent home and told to go to the hospital? No. Did anyone care that I was suffering? No. Oh, except the poor, new kid who was told to wash the floor. He was crying about how sorry he was over and over and helped me off the floor. Management did nothing. I went back to work in pain. Felt like somoen stabbing me in the back all day long. I popped aspirin or whatever I could find like candy. I had no idea that there was someone called Worker's Compensation that would have required me to go to the hospital right away if mangement cared to follow the rules of the law. I continued to work for eight months suffering from incredible pain and migraines that I had never had before. Then my body could not hold it together any longer and as I was pulling down a bed side table for the customer my right hip went 'pop'. Yes - you could hear it! The woman customer was furious that I was required to move furniture alone. I would not tell the owner as I knew they would fire me. Did they care about my pain? No. Did they expect me to walk it off and keep working? YES! I iced it all day Sunday and on Monday the boss expected me to help him move a dresser and I couldn't do it. I was in pain. He asked me why i would not help him and I finally blurted out that I had hurt myself again. He got angry at me for not telling anyone. I told him I was telling him now. Did he really care about my pain? No. I was fired a week later. I got an attorney.
If you have never fought a Worker's Compensation case, well, you have not experienced how the system does not care about your pain nor your injuries nor anything else. In fact, the Work. Comp. system would love to see you go away. They'd love to find you a fraud trying to rip off the system. Do they care about your pain? No way! You are guilty of getting injured while on the job. You are this side of being a criminal for this act of treason against that company. You are guilty until proven innocent. It was 6 long years of intense pain, lack of decent medical treatment and having the doctor give you drugs to kill the pain.
It is also years of the worst humiliation, degradation and being treated like a criminal for having been injured. Did they care about my pain? No. Did they try everything they could to prove me a fraud? Yes. Did my employers lie on the stand in Work. Comp. court? Absolutely! Did they flirt with the female judge. You betcha. Did I get treated unfairly and unjustly? You bet! And did I see the waiting room full of other injured workers who were also being treated the same? Yes - I did - every time I had to go to court - which was six times over six years. Did the court care about their pain and suffering? No! Most of them were never going to get paid anything for their injuries and suffering becasue they did not know any better.
I did know . . and I fought back. I did research. I refused to settle for pennies. My atty. was a total wimp who would not fight for me. Did he care about my pain? Doubtful. It was all a money game to him. I had to do a lot of his work for him. In the end I got some money, but I was left in chronic pain. Six years of my life were stolen from me by a government system that did not care if I was in pain nor if I was permanently injured. The system is broken - just like the thousands of injured workers are broken. Is there justice for those of us in chronic pain? No. Not in my case and I am sure not in a lot of cases.
Did I win? Yes and no. I got some money, but it was not even close to being enough to repay me for six years of my life nor for my pain and permanent injuries. Am I still in pain? Yes. And I will be in pain for the rest of my life. I just do the best that I can, take Advil and if I am in agony 1/4 of a Percocet. No more. I went to a Pain Mangement Clinic - that helped a lot. Acupuncture helps a lot. I am getting an inversion table this week. I am positive that will help, too. I try to stay positive and refuse to let this pain steal more of my life away from me. It is hard to do, but I keep on doing my best. Justice for all? Not necessarily for us who are in chronic pain.
I feel every bit of your story. I was injured at work a year and a half ago. I have had nothing but trouble with Workers Comp. I was scheduled for surgery and they woud not approve it for months and months until my attorney threatened a hearing. Because of the surgery delay there was so much more damage that now I am facing a much more extensive surgery. I am lucky that I have a good attorney who does care. I sympathize with all the pain and anguish you have gone through. Keep staying positive.
Thanks DaisyGirl:
Worker's Compensation is a total joke. It was created to help injured employees so that they could get immediate medical care to get them treated and back to work as soon as possible. HA! Does not happen. I live in California. My accident was in 1997. The law stated that the employer was to get me immediate medical care. They were also suposed to give me the paperwork to file with the Work. Comp. insurance comapny tha the employee is supposed to have for all employees. That did not happen either. In fact the place I worked at did nothing by the books according to the law of the state of California. And the worst part is . . no one cared! I called CA-OSHA - which is supposed to make sure there are not safety issues in the building that could casue an accident to an employee or customer. My employers had so many infractions that broke the California Labor Codes it wasn't funny, but did the state cafre? No! Did CA-OSHA care? No. Laws were created and did not matter apparently when they were broken. I was also informamed that once I settled a Work. Comp. lawsuit I could not come back and sue the owners of the company in a civil suit. So, in other words . . employees do not matter.
I do not know what state you live in, but my suggestion to you is to look up the Labor Codes and the Insurance Codes and the Civil Codes for that state. There will be a section on either Work. Comp. or Employer/Employee Rights. For all of those that your employer infracted (broke the law) xerox that page and then hi-lite that section. Do this until you have found them all. Put them all into a folder with explanations of how your employer broke these laws and give it to your attorney. That could help him/her deal with your employer's attorney.
What kind of surgery do they want to perform on you? Before you do anything make sure you get a second and even a third opinion regarding that surgery. Go to a doctor of your choice - the best you can find for that sort of condition. Why? Because surgery is serious and sometimes not the best option.
The doc on my case wanted to do spinal fusion on my neck. I looked it up on the internet and it was not guaranteed to relieve my pain. In fact in some cases it could make it worse. If the surgeon is not the best there is it could go wrong, too. My neck, my spine, my life . . one slip and it could be bad news. Having my neck fused is permanent, too. I told him no way. But, I did want my shoulder done to remove the bone spurs, fix the tendon and make sure the rotator cuff was not torn. It was approved, but the insurance company then got a brand new insurance adjustor. She decided to go back to the beginning and review everything that had been done for about three or four years time. She reversed all surgery approvals. So, I continued to live on Vicodine (pain), Prevacid (stomach acid) and Wellbutrin (depression).
This is your life and your body. Do your homework and research, research, research. Go the the very best hospital websites like John Hopkins Medical Center, Harvard Medical Center, Stanford Medical Center, New York Presbyterian Hospital (University Hospital for Columbia and Cornell) and the like. Search your medical condtion and see what they have to say.
I did not get any surgery done until after the case settled. It was 2004. By then I had applied for Social Security Disability, got rejected two times before I learned that you must hire an attorney to be able to win and get S. S. Disability which qualifies you for Medicare. Medicare paid for the surgery, but I could not let them know it had been a Work. Comp. injury. They would then go after the insurance company to be paid. The Work. Comp. Ins. Company I fought went belly up.
You have to learn how to play the game . . and it is a game I am afraid. We are but the pawns in this game, but we can be tenacious and we can win. Your employer's attorney is going to make it really hard for you because he wants you to give up and settle. You will be maligned, humiliated, degraded and worse. They will try to find just cause to prove you are a fraud trying to rip off the Work. Comp. Ins. comapny. It is not true, but they will try - especially if you hold out and do not cave in settling for pennies. So, be strong. Be absolutely sure about your having surgery because you cannot go back and undo it once it is done. Do whatever you can do to keep your power and stay positive! CARPE DIEM!
Yes, the inversion table did work for me. I used it almost daily for 10 minutes at first and working up to 20 minutes at partial inversion. I bought a Teeter inversion table as it proved to be the very best buy for the money . . and I did months of research. There are two other companies that make quality tables, one from German and the other from Sweden or somewhere near there, but they are far more expensive. I was able to go to NYC and walk without pain in my hip and lower back that used to cripple me and make it hard to walk more than a block. I have also had tremendous relief from acupuncture, meditation with thes tapes I got that are supposed to alter the way the brain deals with stress and going to the Pain Management Clinic at Kaiser Permanete in San Francisco. They taught us many different ways to deal with chronic pain without having to rely on drugs. The only pain medication I take right now is Advil and a muscle relaxer at night, Flexeril - 1/2 a pill. There is one way that helps that is called 'pacing yourself' where you should not do one thing for a long time - you should sit for so long and then get up and do something else for an amount of time and then go back to what you were doing to vary activities all day to avoid stiffening up and making the muscles go into spasm or into knots which cause pain. Taking classes in the Feldencrist technique is another excellent thing to do. It teaches you how to move your body more efficiently to avoid pain. It does work! I found great relief from all of these things, but I can still have flareups from the Fibromyalgia if I get too stressed out or do not get enough sleep. I need to sleep 8 - 10 hours a night to feel my best. I also have done a lot of research into vitamin and herbal suuplements to find help with chronic painand have developed my own daily supplement regimen that helps me, too. I am constantly looking into anything and everything that I can find to try out to find relief. The unfortunate part of being in chronic pain is that it is invisable. There is no blood, no bruises, no broken bones that give others a visable cue that a person is in pain. It is all hidden inside of us. I have people tell me 'oh, you look so healthy . . how could you be in chronic pain?' That is why we are so discriminated against because no one can feel what we are feeling and they cannot see the pain we are in 24/7! Oh, and here is an interestting piece of information I just found out when I did some investigation into long term health care insurance - if you have Fibromyalgia you do not qualify for it! I was shocked. Anyone else find out things like that?
I hope that some of this might help you find your own relief. We are all differeent. Our systems deal with pain, medications and treatments differently. What works for me may not work for you. But, it is always worth trying different things out to find what works for you. Take a look at the following sites for some more help if you have Fibromyalgia: http://www.fibromyalgia.com ; http://www.fmaware.org katsnme
I can personally say that people who suffer from pain are discriminated upon. I still have yet to find a pain mngt dr. Everytime I try I am scoffed at and looked upon as a drug abuser. Mind you, I have all medical documentation to present to the physician. 1. Cervical cancer. 2.prior left knee surgery( torn tendon) that was unsuccessful and requires me to wear a brace to keep knee cap in place. 3. Titanium pins in right ankle from where I had a rare bone marrow disease. Now, mind you each and everyone one of these are very painful. What blows my mind is that I am in pain from the waist to my toes and cant get help legally. The reason I state legally is because I will not let some prejudice organization(America) dictate whether I am worthy to have relief from pain. Honestly I have tried and am still trying for several years to legally maintain a happy healthy power over pain lifestyle. I have to buy my medication illegally. No I am not happy about breaking the law but, I have to believe that the law doesn't have the best intentions. I f I were to follow judicial guidelines I would be less than a human. Stuck in a bed. Thats not living. When it only takes several pills a day to change the outcome radically. I almost feel like me again when i am on my medication. Even though I am forced to buy it illegally I never abuse it. 1 every 6 hrs. which has changed my quality of life to a more peaceful and positive one. Mind you, I am still on the search to alleviate my pain the law abiding way. So Mr. law man can you look past your judgemental attitude and accept compassion, understanding and the reality that peapole really do suffer from CHRONIC PAIN. Which is more than a word to me. It is my existence. Thankyou and God bless. I am not afraid to stand up and fight. Afterall isn't that how America came about.
Heather:
Where do you live? I am serious . . where? I have been dealing with this pain thing for a long time, but I have never been refused pain medication. Addicts take pain meds to get high. We take it to stop the pain. That is a major difference. People using it to get high take more and more of it as time goes by. They are addicted. Some people who take pain meds for pain do get addicted, but not everyone. I am very conscious of not taking too much. I was in the hospital for two weeks after my hip surgery taking massive doses of Dilaudid. I became very sick. No one knew why. In fact - no one seemed to care that I was sick. I could not eat. I felt lousy. Then on my last day in hospital I woke up feeling crappy and they gave me the Dilaudid. I noticed that in about 10 minutes I felt normal. I knew then I was becoming addicted to the Dilaudid. I told the nurse to stop giving it to me and get me back on Vicodine.
If you live out in the country away from a big city it can be difficult to find help. But, if you live in or near to a larger city - call all of the major hospital's doctor referral to see if they can recommend a Pain Mangement physician. All larger cities have at least one doctor who does pain management.
I am confused . . if you have so many different serious conditons that have created a chronic pain situation for you - why aren't you on Social Security Disability? You definitely qualify. You more than qualify. You would get it the first time you applied for it if you have a Social Security Attorney helping you do the filing, etc. and it is retroactive back to the date you file for it. Have you considered doing that?
I have been scoffed at by people I thought were my friends, but I have never been thought to be a drug addict for taking pain meds. Why do you feel that people look at you that way? You certainly have been through one hell of a lot in your life medically.
Cervical cancer is very serious . . one of the most dangerous for a female. You must have had chemo and possibly radiation. That destroys your body and make you really sick. Did you have to go through that alone? Are you in full remisson?
Tendon pain is very painful. I have tendonitis in my shoulder and it can be unbearably painful. And the doctor screwed up the surgery so you have to now wear a brace to keep the knee cap in place? And then you have a rare bone marrow disease that damages your right ankle? Wow! You have been to hell and back again with all that. How could anyone doubt that you are in legitimate pain?
Now this is where I have trouble understanding. Why do you say that you cannot get help 'legally'? You say that "I will not let some prejudice organization (America) dictate whether I am worthy to have relief from pain." Where are you living? I am 57 years old. I have never had any problem getting medical care even when I did not have health insurance. I went to a California County Medical facility and got treated by UCLA doctors. All prescriptions were free. So, I really do not follow what you are saying. Can you clarify? If you have tried and are still trying to "legally maintain a happy healthy power over pain lifstyle" . . why are you having issues legally? This is very confusing and not very clear.
I have not heard of anything like it before. You intimate that you are being forced to buy your pain meds illegally. Why? I have never known of anyone who is suffering from serious, chronic pain who has been forced to do that. Please, help us understand why you say this sort of thing. I feel that there is a lot more to your story that you are not telling us. Why do you say the "law doesn't have the best intentions"? "Judicial guidlines"...you would "be less than a human"? Can you explain in more detail so that we can fully understand? Please.
I was on disability for several years. I was cut off without a warning. The reasoning being that I could work at a desk. I currently do have a lawyer whom will get the ssd back. We have been fighting ssa for 2 years now. Seems unbeleivable-huh. Meanwhile, I am refused proper treatment (cancer) unless it invades a major organ.(how comforting) The reasoning being I am uninsured.
As far as the pain management search goes maybe just bad luck. I DONT KNOW, but I wish I did. God knows I have exhausted every avenue. It could be that I am only 31. I DONT KNOW. I have been accused in the past by medical professionals that " I couldn't possibly have all of these issues being so young." Well I sure did not ask for my physical state. I was born with several defects and some were added as life progressed. I just try to do the best I can. Please dont ridicule me for that. Its almost like you are questioning my integrity. If I am wrong I sincerely apologize.
As far as the local county health dept. goes: 1. Primary care only. 2.Policy prohibits controlled substances. 3. Without insurance you cannot get a referral. They have to have an approved dr. on their insurance list. The pain management drs. in FL will not touch you no matter how much medical documentation you have wiothout a referral.
What does a person like me do. Wait in pain, I think not. As far as everyone else I guess the "right" thing to do would be to wait for ssd. How much longer I often ask myself. Its already been 2 years. I have a hearing coming up thank god, but the judicial guidelines can last up to 14 more months. What would you do in my position? I am not asking this question sarcastically. I am asking out of help.
Until then I HAVE TO do the BEST I CAN with the hand I ve been dealt.
Wether you choose to believe these words doesnt alter the fact that i live them each and every day.
God bless you. The lesser the stories like mine, the better off the world will be. So lets concentrare on not tearing each other down. Instead lets unite and build a great nation.
Heather:
Thanks for getting back so soon. Along with the degrading experience dealing with Worker's Compensation comes the degradation of trying to get SSD (Soc. Sec. Disability). We work for years and years paying into the Soc. Sec. System every time we get a paycheck for our retirement, but if, by any chance of fate, we get injured or sick or whatever that makes us disabled . . . and we have to fight tooth and nail to get what should be legally ours to have. And believe me you are not fighting for a lot of money!
I worked for a lot of years making great money (39K), but the last year (after losing my career job), where I got injured, I was working a sales job that paid $9.50 an hour. Did the SSD base my benefits on my great paying job? No. They based it on my last full time job as a sales person where I made little to nothing. I have been getting less than $800 per month since I first qualified in 2000. Now, exactly how does the Soc. Sec. Syst. think anyone can survive off of that? You can't. And they do not care.
In fact they look for any reason they can find to boot you off of SSD if they feel you can work doing any meanial type of job. The first time I applied they told me that I did not qualify because I obviousy could sit and string beads for a job. There was total disregard for my injuries.
Problem is with a chronic pain problem, as you well know, no one can anticipate how you are going to feel one day to the next, even one hour to the next! I cannot sit for too long, stand for too long, walk for too long wihtout having pain. Every year when anyone on SSD gets that packet of paperwork to fill out to get reevaluated by SSD to be able to keep your benefits I sweat bullets wondering if they will boot me off this time. I now write letters to SSD that I send or take in with the forms telling them how I am doing from my point of view. I am sick to death of the discrimination against people suffering from chronic pain (but who look healthy) and refuse to just lie down and let them kick me once again.
So, I know how this sick game plays, Heather. It is so incredibly unfair, unjust and in my eyes unethical, immoral and despicable. Those people who need the most help are treated like their pain does not matter. We are considered frauds, fakers, phonies, liars and hypochondriacs. No one understands because they do not want to understand. And some do not want to understand because they, too, suffer from chronic pain, but are being total martyrs because they are unwilling to stop working to get the help they need. They suffer in the silent agony of martyrdom and hate those of us who have actually had to stop everything going on in our lives because of the ceaseless, never ending and unbearable pain.
One thing I can suggest is never minimize anything to do with your pain. In fact, make it larger than life when it comes to fighting for your right to get back your SSD. Fibromyalgia has now been proven and accepted by the AMA to be a neurological condition that has to do with the pain receptors in your brain. By the way - a County Medical Facilities is for people who do not have health insurance. I guess not all states have the same program as in California, but they should. As an adjunct there should also be a County Mental Health Clinic, too. I got diagnosed there and got my meds there, too, for free. I did not have health insurance either back then.
I have not met a person yet who is not suffering from chronic depression as well as chronic pain. Use it. I was diagnosed with Clinical Depression when I was fighting Worker's Comp. It was congenital in my case and runs on my mother's side of the family. But, getting on Wellbutrin was the best thing that happened to clear my head of the fog that followed me through life. Without it I have no idea how I would have coped. It helped me to get focused on what I needed to do and to fight the system for my rights. Also, I did not take allow anyone to abuse me anymore - especially doctors and lawyers.
So what if you are only 31. What does that matter? You have had verifiable illnesses! You have had cervical cancer for God's sake! You were born with physical defects that have caused you pain. How dare any doctor for not taking you seriously. They take an oath when they becomes doctors "to do no harm". Remind them of that if they start to blow you off. Report them to the medical association they belong to and to the state you live in. Take your power back and stay strong.
Trust me, Heather, I am definitely NOT ridiculing you. Far from it. I have been fighting the medical community since I was a child of 6. I have tried to tell them what is wrong with me and been blown off as a hypochondriac or having psychosomatic illness. I have test after test after test before I was 18 trying to figure out why I was so tired all of the time and did not feel well. I also had chronic digestive problems. I knew something was wrong, but not one doctor believed me. I also had depression, but no doctor diagnosed that either. My own mother was not diagnosed with Bipolar Depression until she lay dying in a hospital at 84 years of age.
So, no, I would never, ever ridicule you because I was you at one time. I just was shocked at how you were being treated and needed to hear more from you to understand what was going on as you had been a bit vague. I may not have had cancer or the other problems you have experienced, but I have been demeaned and humiliated by doctors and the system since before you were born. I am always stunned by the horror people like yourself have had to put up with to get someone, anyone to believe them and help them - me included. It is just so incredibly wrong on far too many levels.
Oh, now I finally see that you live in Florida. Well, having gone to school in Miami I do know that they do have county hospitals in Florida. They are depressing to go to, but if you can tolerate the long lines and waiting - you can get medical care if you do not have health insurance. But, it has been a long time since I lived rthere so manybe it has changed. Check it out in your area.
How does your family react to your pain issues? Are they supportive? Are they willing to help you? IF so - would they help you get some kind of medical insurance? If not - what about another relative: aunt, grandparents, brother, sister?
Do you feel that your attorney is really fighting for you and is compassionate of your dilemma? You have cancer . . that must hold some weight as it is cervical cancer - one of the worst for a woman. How can they dispute that reality?
I know this is hard for you. Truly I do. There is no way around it - it sucks - and does not suck very well. University of Miami has a medical school. Pull up their web site and see if they have any studies going on for pain management or cervical cancer treatment. Call them. Tell them your truly sad story and see if they can possibly help direct you to someone or someplace that could help you now - not later. It cannot hurt to try. You never know when a small miracle might come your way if you keep on trying and never give up.
SSD hopes you give up. They will drag this on and make you suffer in the hopes that you give up and go away. One thing I learned - if you are telling the truth your story will never change. So, you go into that hearing with your head held up high and just tell them the truth - all of it. Like I said before . . never minimize your suffering and your pain. Don't tough it out like an athlete walking off their pain to keep on playing in the game. You hurt! Make sure they know it. If you feel you are being denied health care when you have cancer that in unconscionable.
"What would you do in my position? I am not asking this question sarcastically. I am asking out of help." Oh, Heather, I wish I could give you the right answer to your question, but I do not know what it is. I cannot believe that your attorney is not helping to find you medical care. Get angry and tell him you need medical care NOW!
Also, check out the Florida County Hospitals. I know there was one in Miami, but there has to be others throughout the state. County facilities are not supposed to be allowed to turn anyone away if they do not have health insurance. Make a stink. Call up the Florida District Attorney and tell them what is happening to you. I know that Florida's laws could be a lot different than here, but there must be laws protecting basic, human, civil rights.
I believe you, Heather. And we all are living similar situations to your own each and every day to some extent. I wish there was some way we could take this to Washington D. C., just like so many other people and groups do, to tell the courts that our pain is real and we deserve to be treated with respect and given the care that we need without question. Keep writing in and do the research to find out what Florida really does have to help those who do not have health insurance. Calling the District
Attorney for the state and in the city you live in could really help you so call them. Never give up, Healther! It is your life you are fighting for. And you matter - a lot! Never, ever forget that.
HUGS and SUPPORT! Wendy
Katsne,
Heather,
Tone can be difficult or impossible to discern from emails / messages, but your words were unmistakbly almost without compassion. You may feel compassion, it seemed like you were trying to offer solutions, but you need to work on your delivery to boards where people are divulging their most vulnerable feelings and situations until you can actually show compassion and be gentle. Take a course on learning to communicate better. Never EVER put the person who is suffering in the position of having to educate you about not tearing them down.
You are very out of touch with how many chronic pain patients have to live their lives. Some Pain Mgt. doctors won't even prescribe the appropriate level of pain medicine, even they are prescribing a pain med, so the patient still has to get the medicine illegally. This person is OBVIOUSLY intelligent, articulate, and has tried a LOT of things to no avail.
What's more, you are very naive in thinking that pain patients, even in big cities, can always find a pain doctor who will treat them. IF they have the insurance to see the dr. Many, many MANY places in this country do not have free or even sliding scale medical clinics anymore. Have you heard ONE WORD or the health care debate in this country over the last 10, 15, 20 years??? You may have never known anyone in America who has had to get their pain meds illegally, BUT THEY'RE OUT THERE. And the dr.s who are in pain managemt are the same cross-section of people who are out there in the world. Some great, some mediocre, some sadistic. Some assume if you ask for a pain pill you are an addict -- so why are they in pain mgt., where a large majority of people will need pain meds, serious ones? Who knows. Because life can suck, and we all know that pain managent is in its infancy and the "war on drugs" has dr.s running scared at the very least.
Don't EVER question another's post in the manner you just did. If you want more information, ASK, but don't interrogate. And never, ever, EVER assume that because you haven't heard of it, it doesn't happen and happen a lot. It's obvious you have NO IDEA just how bad it can get for pain management patients, much worse than this person's, or you would have never posted that inexcusable reply.
Anonymous:
Wow! You are one very angry person who is more than just physical pain. I am really sorry you are suffering so much. I read your response and then reread my last letter to Heather as objectively as I could. I do not know why all of your rage is now directed at me. I offered Heather understanding, compassion, relayed my own story and made many suggestions that might help her as I once lived in Florida.
Now, my first response may have been different. I really apologise if it offended or hurt anyone - especially Heather. I have been a part of many different on line support groups for many years, but I have never been so throughly torn apart by someone who will not even sign their name. I can only assume that you have been through hell and back again trying to get the help you need and are in a tremendous amount of pain. I am truly sorry and saddened if that is your reality and that is why you reacted so angrily.
I have heard everything that you have said here. Yes, it is very difficult to discern 'tone'
in an email. Misunderstandings can often occur because it is written and not spoken.
I have been dealing with chronic pain since 1980. I do a ton of reading educating myself about pain and what can help reduce it every day. I am an avid researcher on medical issues that plague me or my friends and family. I have never intentionally hurt a living thing or a human being, especially someone in pain, in my 57 years of life. And I do not agree with your assessment of me from my reply to Heather's post.
I am truly sorry that you are in so much pain and felt the need to lash out at me because of your frustration and anger over not being able to find the help that you so desperately need. I do know how hard it is. I do know that kind of anger and frustration. I have been demeaned, belittled, humiliated, degraded and accused of many things by numerous doctors, attorneys and even people I once called friend. I do know how it feels to be shunned, rejected and dismissed by those who are supposed to be helping me - the medical community that once took an oath "to do no harm". I have written letters, made phone calls and fought for what I felt was my right to live without pain.
I do the best that I can do each and every day because I never know one day to the next if I am going to wake up in pain nor how bad the pain will be. I am willing to try different things in my quest to find a way to relieve the pain. I used to live on Vicodine until I became allergic to it. I then found relief with Flexeril - which actually help more. I have taken many potentially addictive drugs over the years to keep the pain in control. I now take Advil six times a day, have Percocet in case of a flareup and use Flexeril at night to help me sleep.
I found the most help in relieving my pain from being in a 12 week class at the Pain Management Clinic at Kaiser-Permanente in San Francisco, CA. It changed my life. It changed a lot of people's lives, but not everyone who attended was able to keep the pain away. I have sought out help from homeopathy by using herbal remedies. I take all sorts of vitamins & supplements that I have researched which were proven to help relieve chronic pain. I will never give up the fight to find relief for pain. I refuse to give in to the pain and allow it to steal away my life. I am incredibly sympathetic, understanding and compassionate of anyone who is suffering the injustice of chronci pain. I always will be.
And to you, anonymous, I truly hope you find the help that you need so you can deal with your pain and your anger.
Wendy
Ms. Richards, This was a very good report-probably one of the best I have read to date. My partner, Charles (he is 53 yrs. old) has been on prescription pain medications for over 8 yrs. because of two botched 'experimental' spinal surgeries. (The dr. that performed this surgery paralyzed the 2 pts. before my partner, lost his license in FL and a yr later started practicing in AZ). It was 18 months of hell for Charles, between the 2 surgeries (12 wks apart), the rehab. in which involved extreme pain, infections, etc. Two yrs. ago we found out that Charles has osteoporosis and the 'cage' either cracked from removal of the bolts to early or it never healed. Most days he uses a walker or a cane.
He is still seeing the ortho. surgeon that he had been seeing for 4 yrs. This dr. is 200 miles from where we live. They have had several appts. to discuss the possibility of doing more surgery. The surgeon is not optomistic about the outcome and has already told Charles that he has to pass all medical testing with flying colors before he would even consider it. It would require 2 surgeries lasting 20+ hours and only a 35% chance it would help. And it could possible make him worse.
We have moved twice in the last 4 yrs. and have finally settled. With every new dr. we go in straight forward and armed with medical records. While in this area, he has seen 2 drs. The 1st one told him he could help him no matter what. After 6 wks of various duplicate and expensive testing, my partner ran out of his pain medication. The day he went to the drs. office for a refill on his prescription the dr. told him he could no longer see him, that the organization that he worked for told him he could not write prescriptions for narcotic pain medicines. He offered no alternatives at all--not even help finding a new dr., not a prescription to help with the withdrawals. My partners prescriptions are for a month, however he does not take them every day-most days he just lays in bed.
We found a dr. to write one half of the prescriptions he was taking. (half is better than none-though quality of life is NOT a thought with drs.) He has been seeing this dr. for 3 months. This last time Charles went to pick up his prescription, the nurse 'insinuated' (just enough that a medical board would not do anything) that if Charles does not have the back surgery the dr. will not fill anymore of the medication. His doseage was cut down from 30 mg. of oxycodone every 4 hrs. to 15 mg. every 6 hrs. I would almost bet there is not a law that protects the patient from a dr. that would force a patient into a surgical/medical procedure and not allow the patient the opprotunity to make a reasonable, informed and competent decision on his/her own.
In July Charles fell down the stairs and broke his arm. The wrist has nerve damage. He needs full use of his arm, hands and wrist if he has this back surgery because he will be using a walker for a long time.
If anyone watches the shows Animal Cops you know that people that do not seek help for an injured animal are put in jail--which I am all for. Why is it that drs. that help injured people are always under threat of a revoked license or prison? Why is it that veternarians receive many more hours of pain management for their pts. and medical dr.s receive less than a weeks worth?
But, what really bothers me is whenever you read an article printed by the government the always refer to narcotic pain medication as prescription 'drugs'. That sends a negative message. I have read countless articles from the older generation that are afraid to take pain medication because they are afraid to become addicted. I can't imagine where they would get an idea like this?? If medication is taken appropriately, what are the chances of becoming 'addicted'?
Thank you for your article. It is an injustice that countless good citizens have to suffer for the few 'bad apples'. There has got to be more that can be done.
This was a very good article, and just about every pain patient, can relate! I am a 50 year old female who has been in chronic pain for 8 long years due to hardware failure in my cervical spine. There was nothing more they could or would do for me for fear of leaving me a quadriplegic. Although it has been 8 years of pain, I have had enough experience with doctors and medications to last me more than a lifetime. It had gotten to the point that I was wearing 2 (100 mg)fentanyl patches, and 4 of the strongest (1200 mic) actiq suckers, along with other medications that cost me over $800.00 in co-pays per month with my medicare. I was implanted with a morphine pump just 1 year ago, and consider the doctor that implanted me a hero! I know the pump has problems, and is not perfect, but it has given me back much more than I have time to write and tell you about. I give him much thanks for taking me as a patient knowing that I was 1500 miles away from home and living in hotels for ten months while going through tests and procedures that in the end left me with a morphine pump, that has left me in much less pain, on much less medication, and costs me a lot less money every month for my medications! He did for me what no one in the medical community would do for me at home! I am now on what would be considered a fairly low dose of morphine, I can go 6 months between fills! I also have some loratabs and muscle relaxers that I can take for break through pain. My medications now cost me $35.00 a month! I now have a doctor that fills my pump about 60 miles from home, but I continue to be randomly tested for other drugs that might be in my system! I do not have a problem passing the test, but am wondering what other types of doctors refuse to see you unless you consent to random drug tests? I can answer that for you, it is quite easy, NONE!
I believe a real problem exists in our country with diversion! You have young kids sneaking it out of grandmas medicine cabinet, and then you have the person that sells their medication to someone else, making a hefty profit! There are also the online pharmacies that will dispense medications without a prescription. These are all problems, and because of them, it is extremely hard for an honest person to get help when they need it. It would be extremely helpful, if they could come out with medications that are traceable to the person who received them from the pharmacist! It might not stop the problem all together, but when they found medical grade drugs in some one's possession, they could not only go after that offender but find out who had received those specific medications from the pharmacist and then try and find out how one person ended up with the other persons medication in their possession.
I have been in major chronic pain since 2002 when I had my first hip replaced. I was on a drug that destroyed my joints and have had both hips and both shoulders replaced. One shoulder twice because of a recall. I also have neuropathy from in my legs feet and hands from being a diabetic.... Thank-God I have a wonderful physician who went to bat for me and I get relieve with oxycontin. My pain is so bad I take 15 (80mgs.) every 8 hrs. to control my pain. There is no way I could live a halfway decent day-to-day life if I wasn't on an opiod narcotic med. I also have kidney stones regularly and have to take oxycodone for that... I read all the other comments and didn't realize so many people are suffering like this. I truly feel for you and may I make a suggestion to you by saying --- keep going to other Dr.s who can help you! This makes me appreciate my physician much more!
I have been taking pain meds for over 10 years for two back surgeries. One of them caused a problem with my sciatic nerve and I can barely walk any distance at all without severe pain. I had one pain mngt. Dr. that gave me oxycotin and oxycodone which help me to maintain working. My employers were concerned about my taking pain meds while on the job, and I tried to explain to them that the meds did not give me that great high feely you hear so much about, but helped me forget about the pain so that I could do my job.
Well eventually that Dr. had a patient that was seeing another Dr. when she went to him for medication for pain. She did not inform him of other pain meds and she died because of his meds and the other meds. The Dr. lost his right to give out pain meds and I had to find another Dr. to help me. The other doctors only wanted to give small amounts of morphine, which caused be to be in pain constantly and I started to call in sick more and more, until I lost my job because I could not get any relief.
I then had to file for SSDI and was not able to afford medication until my payments started coming which took ober six months and I could not get the medical portion for 18 months. I am seeing another doctor now, he is very understanding, but will only give me morphine and only up to a certain amount of mgs. I have had all types of treatments and to this day no real relief. I have even gone as far as to cry in front of a pain doctor and beg for relief only to no avail for they are so afraid of the GOV. coming down on them.
I have gained over and extra 150 lbs. and have had a lot of problems with my teeth due to taking all the medication, that really gave me no relief at all. I do not feel that there is any real help out in the medical world, only in death will I find true pain relief.
I am so glad that someone is thinking out of the box for a change. I am 43 years old and I have severe pain caused by stones in my pancreas, which took three years for the doctors to find. The damage that was done by the stones, can not be fixed. I have days when it hurts to just breathe. I have had to use morphine for more than 14 years. I have most of my friends that understand. However, I have some that think that a pill is supposed to "cure" you. They do not realize that doctors can only treat symptoms, and that doctors are very limited. We have been raised in a society that makes think that when we become ill, the doctor will fix it. More times than not, I have been sent around in circles trying to find a doctor that truly understands what chronic pain will do to a person. We need more active people to speak up, and realize that there are more than one way to help people whom are ill, and in severe pain. I have some folks that just think that I should be able to keep up with a person who is not ill. They think that if you use narcotics, then you must be a junky. Well, I have to use at least 100 mg of Oxycontin, and Percocet every single day, and other than the physical limitations I have with pain, I can outthink most people who do not have to use the medication. I also do not sleep very well from the pain, and I do not to get to eat properly. Our society needs to wake up!!!
Norma Salin
Sun City, Az
I agree with this letter about not being able to find a Dr. to help me with my pain. The Dr that I had before was great I was given the right amount of meds to help relieve my pain, then they went out of buisness, they did not want the responsibility of perscribing narcotics because the insurance was to high. SO myself and 15 other patience were left stranded. No one would help me. Finally my Nuerologist did because she was the the one that had refered me to them. Problem there was her Co-Dr's were not to happy with her perscribing me these heavy narcotics, plus she really did not know much about pain management. The Dr and I agreed that I shoud keep lookin even if it means driving an hour one way to get to the nearest pain Dr. It s hard because there really is no way to prove the pain physically so then ther is another obstacle what do you do ? New Dr who does not know me is reluctant to medicate me for fear that what if she is lieing and just wants the drugs to use for drug habits? not the case what so ever My pain is so sever I can berelly walk and my insurance keeps deying me for use of a power scooter because I dont look sick from the outside and my age (35) to young to be this sick. ( they say) If only they read my 5 inch thick medical report.
i have been in relentless pain for a year now wich affects my mobilty, it all started with a standard anterior cruicate ligament reconstruction where nerves were cut by mistake.ive lost my job my independance as i need a lot of help on bad days and the bad days have sent me in a ambulance back to hospital,i feel like a human guinea pig with lots of diff meds that only seem to add to my problem withside effects, i have gained weight im either totally spaced out still in pain but havent a clue what im doing and with in the treatments of nerve blocks and serial casting to try get my leg striaght the crps spread from its original site to the whole of my lower leg.
i have two dogs and if they get hurt or need help they get treated and helped not to be in pain i had horses till this they needed a vet the vet was there and they were treated
here if u neglect a animal or leave it in pain you get took to court and fined or in prison
it is way beyond me how laws protect animals and yet let people live in pain every day with hardly any help what so ever and if what they do give you dosent work they look at you like its your fault and ur doing something wrong when so many of the drugs and treaments cause more side effects then actually help
My anesthesilogist (she who prescribes my opioids) made this statement to my wife during last visit: "Your husband sure likes Percocets". I've been seeing her for six years and had thought she understood. I'm in constant pain (5+) and take morphine sulphates 30, 3 times, and 4 Percocet 10/650 daily. I'd give anything to not need them!!!
C.A. Buckman
North Carolina
I hear you! You would think the "medical" community would be more aware of pain issues & pain treatment....especially those whom deal with this on a daily basis in their profession. -Would you believe that my pharmicist, who is totally aware of all my health issues,(or should be from what I've been prescribed through out the years)! After going to the same place to get my med's for over 20+ years, still felt the need to tell me that I would be better off taking moriphine over methodone, simply because of the stigma with methodone...........as he whispers, "you don't want people thinking you're a druggy!"
How sad, if people who work at the pharmacy could think that, then imagine what other random people might think. Chronic pain patients, -we have enough on our minds, we don't need to be worried about what other people are thinking. Nor do we need to waste what treasured energy we do have, trying to explain/justifying ourselves!
Hang in there! Maybe your DR was trying to make light of a not so happy momment.....or at least we can pretend that in our head! So it's not so maddening.
Take care & gentle hugs!
peace, laughter & miracles,
Bambi
I agree with the you and with most of the comments that have been posted, it is terrible to be in chronic, debilitating pain and have medical professionals treat you as if you are a drug addict or exaggerating your pain for sympathy.
I have been in pain for over 40 years and lived on increasingly strong pain medications until I was existing on opiates in order to keep my demanding work schedule. In 2000 I started seeing a pain management specialist, who for the first time spoke to me as if he understood what I was experiencing and was interested in helping me.
After a few months of treatments, such as steroid injections and epidurals, and stronger and stronger medications, this doctor suggested I consider an intrathecal pump. I looked into it and had one implanted in my abdomen a few weeks later.
This pump distributes morphine, bupivicaine, a local anesthetic, and baclafen, to my central nervous system, via my spine, on a 24/7 basis, and for the first time since I was a young girl there are days that my pain is under control. I can even say that there are days that I am hardly aware of it at all.
One of the great benefits of getting medication this way is that I don't have to deal with the ups and downs of oral medications; meaning that when you take meds orally it takes about 1/2 hour for the pain medication to take effect, then you have a few hours of relief until the efficacy of the medicine begins to lessen, and until you can take it again and start the cycle over.
The pump provides a constant, even distribution of medicines so you don't go through this, or any, cycle. I have to get it refilled every seven weeks or so, which is no problem at all and is much better than taking pills every few hours. If you are in chronic pain I urge you to find out if this is an appropriate method of pain management for you. It doesn't work for everyone, but I thank God and my doctor that it works for me.
One problem is many doctors don't know about these pumps, in fact many doctors don't know about pain. It is not a mandated subject in many medical schools, which I believe it should be. Unless you experience chronic pain it is impossible to really understand what it is like to live with it, but medical professionals should at least learn about it and make an effort to understand at least a little about how it impacts a person's life on a daily basis.
Until doctors begin to learn more about the physiology and treatment of chronic pain, and forget about trying to assess it with a 1-10 pain scale, I don't believe we have much hope of being treated as patients and less like drug addicts when we complain about pain. The 1 to 10 pain scale is perfectly reasonable for acute pain but woefully inadequate in assessing chronic pain, which requires some quantitative information as well.
You can learn about the pump by going to; medtronics.com The pumps are used for baclefen for MS spasticity, for pain, and in some cases for diabetes or other chronic illness. I am now on my second pump, this is larger and I don't have to get it filled as often, and I honestly don't know how I managed without it.
Good luck to everyone.
I coun't agree more and when (and if) I ever get my extreme chronic pain dealt with properly, I intend to go to law school to work within the system to have new laws passed which WILL help Doctors to see that just because a patient cannot literally show them what is causing pain, it doesn't mean that pain doesn't exist. For now though all I can think about is where and how I am going to get my next pain relief and deal with the utter panic that sets in when I only have the day left worth of the pain pills I have purchased from those who obviously and sadly really DON'T need them since they are selling them to me at the cost of pretty much everything I've ever worked for.
Yeah, that is pretty sad and aggravating when you see people that get narcotic's for their pain and then turn around and sell them. And here we are, all us writing comments back and forth, lost in a broken f'd up medical system. I also know people who sell them, and yes I have bought them a few times out of desperation. I even told the Dr. boy was that a mistake, in his eyes I really am a druggie, whatever I no longer care. I went through 3 pregnancies and delivered my children without pain control. I did not know what a pain pill was until I developed the disease I have. Its sad the way Dr's are letting others control the way they care for their patients.
My experience for the last 6-7 years has been a true nightmare. I would have been better off, much better off, if I had not sought out medical care for severe joint pain and chonic uveitis. I have been treated with nothing but suspicion, disregard, disrepect, and downright discrimination. Some of the Doc's I was sent to, by my primary physician, were nice to my face, but, when I decided to obtain my medical records and read them I was shocked, felt betrayed, and have come to dislike the medical community. Many inaccuracies were discover. From the wrong amount of narcotic medication perscribed to me to outright distortion of facts. Comments such as, It was made clear to the patient not to ask other Dr's for pain control. This was never made clear. I have a condition that flares up, it is called uveitis/iritis (severe inflammation of the eyes), I was given a shot of toradol by a Dr. who works within the practice where I recieved care. I was accused by the pain specalist of obtaining other narcotics. Toradol is not a narcotic and if the uveitis is left untreated I could go blind because the retina can detact from the swelling.
This is the same Dr. who so generously gave me pain control in the form of methadose/methadone 5mg twice per day. I was told this is the best medication used for chronic pain. It was a hassle every month to get it filled, I felt like a child asking to go to the bathroom. Regardless, when I read his notes (my records by the way) I discovered that, lo and behold, I was supposedly getting a higher dose than I was accually getting or had ever recieved. I confronted the Dr. and I'm sure I was not very popular at that point. Of course the 'pain control' was taken away. and yes I did end up in the hospital, the pysch. ward to be more specific, just where they would like us to go, away. Did you know that chronic pain sufferers are the last population that Drs want to care for? Do some research, it is true.
Yes, I believe the government will have to take the reins when it comes to pain conrol. Why is it, if you have two different people with exactly the same medical condition (that causes chronic pain) one is given the choice, depending on his Dr., and the other is not, when it comes to obtaining narcotics to treat/manage chronic pain? I no longer take narcotic pain control because it led to depression, reduction of my self esteem, feelings of guilt, and that I was somehow doing something taboo by asking for treatment for chronic pain. I am in serious pain, but, my experience has been so negative in trying to get treatment for it that I have simply given up. The addiction rate in the state I live in is one of the highest in the country. Additionally, I have a degree in the very field that treats addiction, so, I do have a fairly good grasp of addiction disorders. Unfortunately, none of my education has taught me how to remove the biological condition (disease) that I have. I've also repeatly tested positive for lyme disease but was never offered treatment, antibiotic's are used. It has been over 5 yrs since that happened. I've been told different things by different Drs, such as it's fibro, its an autoimmune disease, its degenerative disc disease. You get the picture. I guess my next stop should to the local attorney's office in lieu of the local Dr's office. I guess I am just trying to figure this situation out but, I have not been able to do so. My wish for others, who are experiencing chonic pain conditions, do not have to suffer needlessly because of others issues. It is simply not professional, competent medical practice in my opinion.
I too am suffering from chronic pain. I came to help my daughter who is serving in the army in 2003. By 2004 I was having severe pain in my lower back, butt and leg. The Army recognizes me as her Dependant but will not provide medical for me. I have only the ER and pharmacy use. The ER was semi decent for awhile about prescribing 5mg lortabs or percosets but only 8-12 at a time. I am a 54 yr old female caring for a 2 and 4 yr old while my daughter deploys for a year at a time. How long do they think 8-12 pills will last, along with 20 or so muscle relaxors. As time passed the pain worsed. With NO insurance I was at the mercy of the ER. This past May my daughter deployed once again for a year. On my birthday, July 31, I experienced a shooting pain down my leg and lost all feeling while driving us home. Being in horrible, unliveable pain, I sat down with the phone book and looked for a Neurologist that would take a credit card. Thank God I have good credit. After an MRI I found that I had not only herniated, but ruptured, S1, L4, and L5. There was a sequestered disk that looked like it came down my spine and chopped off my nerve ending which hung there like spaghetti. What more did any doctor need to see. I found a pain medication doctor but it's like the man has NO ears. He thinks I can get by with percoset 3 times a day and a muscle relaxor 3 times a day. HELLO!!!!! I have a 2 and 4 yr old to take care of here. Will the Army send my daughter home...NO!!! I have to be literally dying for this to take place. Here again it's all about the pills. Do 3 work...Hell NO. Maye if I could sit on my butt all day they would but once again A 2 AND 4 YR OLD!!!! I have begged for steriod shots or epidurals. I finally got SSI, but try finding a doctor that will take it. Have I supplemented pain meds from friends willing to help...you betcha. I sometimes would love to say let me hold your manly parts and I will SHOW YOU what KIND of pain I am in. I have suffered permanent damage to my right leg and just drag it around with me. It has pins and needles all the time if it's not have muscle spasms like someone is in there wringing it out like a wash cloth. I started on percosets in 04 maybe they don't work anymore because it's been 4 YEARS!!! This is my reward for stepping up and saying YES I will HELP you SERVE OUR COUNTRY. Had the Army provided epidurals over the past 4 years I might not be where I am now and this has been said to me by other Doctors and Pharmacists. Would they put it in writing.....Sure....about as quickly as they would change my meds to something that actually worked. Our Medical Society Needs to be Revamped. An animal gets better treatment than someone who pays taxes or serves our country. I am totally disguested with things. Begging for surgery now that I have SSI, with a country that won't send my daughter home so I can have it and GET OFF their precious pills.
I want to thank everyone that is speaking up for everyone that is in real pain.
I have seen both sides of it. people that use pain meds to get high and
the real people that are in so much pain that even a simple task to live
is hard because of the pain that they have and do NOT get the right pain releaf as they would need to live somewhat a 1/2 way life
It`s true what they say that a few BAD apples spoiles the hole damn bunch.
I myself is having a very hard time to get the needed pain meds.
(maybe if I paid my doctor bill in cash???)
And then i see someone getting them and NOT needing them at all for pain.
SORRY you all ...
Had to VENT......
Stay well.....
Greg......
I am so glad that someone finally had the guts to say something aloud. I am a 27-year-old female who has had chronic pain for a little over a year now and that is all I have been getting this whole time; "you'r a drug seeker, drug addict." They put me in this category before they even take the time to get to know me or even examine me because of my "AGE" which is just not right. I am not every other person my age and I shouldn't be put in that category. You know, if they would've just figured it out a year ago instead of telling me it's all in my head and sending me to different Psychologists, I would probably be better by now or at least in the process. They just now today January 4, 2010 maybe found something out. My Physical Therapist stated that he was pretty sure that it was my L5-S1 area. Now don't you think they could've just figured that out in the last year instead of treating me like some drug addict off the street. I am an upstanding citizen, I am clean, I go to school, I help in the community, I help others constantly and now I guess I am a drug addict because I am in pain.
Thank you very much for finally opening a conversation so everybody can know what we all go through! One more thing, how come the people that actually need the medication can't get it and the alcoholic/drug addict people can. I heard someone talking one day and she stated that the doctor knows of her alcoholism history and the history of cocaine and marijuana in her system and she can pain medication whenever she wants from this doctor and ya want to know the kicker; her doctor was also my doctor, the one calling me a drug addict and seeker! Crazy, huh?
I know some of these posts are old, but it so hard to sit here and read all of these posts, because I have been there and it's terrible to know that others have had the same fate or worse. My CP started before the internet, so I had to learn "the game" the hard way. I found out very early that people treat those of us in pain as only drug seekers, no matter how bad our MRI's/tests/records are.
And if you don't find an answer or help with the first dr, then you accused of doctor shopping. So while all other patients are allowed to get second, and even third opinions....we aren't allowed that privilege. They think we are going from doctor to doctor until one gives us what we want....drugs.
I had a fractured sacrum, Berlotti's syndrome with fractured psudoarticulation and SI joint issues...so I have had horible lower back pain for years. I had surgery, but unfortunately the fusion efforts failed. But to add a slight twist, the surgeon was my first cousin's husband and we were quite close. However...learn from my mistake, don't ever have family operate or treat you. When things go wrong, it effects the whole family.
After the 3rd month post op, I was on 40 demerols a week, and on a walker. My pharmacist, told me that there was NO way that I should still be on pain meds and that he's starting to see a problem and I was going to be addicted if I didn't stop. The next time I took my script in to have it filled and the dr had changed me over to instant release morphine instead of the demerol to see if we could get better pain management, but when I got home, I noticed that the pharmacist had changed the meds to the extended release without telling me or talking to my dr. They didn't work & I was in terrible pain.
I was glad that I had followed my instinct and started to drive to the next town 10 miles away... to a new pharmacy, because that pharmacist actually reported my uncle as an addict after 5 months of him being on medicine, and then told his doctors and insurance, he was using the meds incorrectly and now my uncle who can't even get out of bed, is no longer able to get ANY narcotics for his pain.
Anyway, after 2 years of pain & tests the fusion surgery had failed and I was desperate to be rid of the pain and asked my dr/cousin to try to an anterior fusion, since he had always told me that we had that option, the one he so nicely said that it would make my last surgery look like a cupcake. But to my surprise, He said "I don't like patients that don't get better AND I fixed you....but you can't see it, so I'm done." He walked out and left me crying my eyes out in the exam room for 45 minutes and then refused to give me a refill, so I could find another dr.
I was devistated, but I have to tell that a few year later, what comes around goes around, and my cousin/dr had knee pain from a shrapnel in Viet Nam, was found to be writing his own excessive scripts for his pain, that he was operating/practicing while on heavy narcotics. He lost his dr's license. He was then told that he was an addict and from that point on, he wasn't allowed any narcotics for his pain. While I felt for my actual cousin, his wife, I couldn't help but to think about karma.
Regardless he left me in a terrible situation. No meds and horrible pain. Since you have to wait months to get to a pain specialist, my only hope was to try to get by, and make an appt with the new GP in town. I took my MRI's, Xrays and medical records, so she could see that I was for real.
I found my angel. She had just left working in hospice to start a family practice, so she actually understood pain. She understood what it does to people. Since that day, she has done everything she could to help me get thru my life and make it the best that we can. And while I am still in constant pain...I couldn't imagine what it would be like with out the meds she prescribes to me.
I will say, however that about a year into my new doctors relationship, I was still looking for answers and a fix, so she referred me to a pain clinic. I went and when the pain dr saw me, he told me that he only uses pain pumps, and injections but NEVER prescribes any medicine. He told me that is the responsibility of my regular dr. What a cop out! Honestly, he is supposed to be the expert, but I guess the money isn't in prescriptions. And it's my regular Dr's job to put her job on the line by writing scripts.
My regular dr did have the pain clinic fax them a letter to them saying they refuse to prescribe...I think to cover her behind. And that's fine. I even took a pain contract that I had found online to her. I think I was the only patient that had ever done that because she looked really surprised, but I wanted her to know that I was just as serious about protecting her as I was about my pain management.
So if you are having problems finding a doctor, try googling your area with the words "family doctor with hospice experience". I did, and I found several more. I'm not saying that these dr's are a sure thing, but they have spent much more time around people in severe pain, & unlike other glorified doctors, who think that if an injection won't cure you...they may be like her and listen before judging.
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Dear Karen,
Thank you for writing this share post. As you say, Why is it that pain patients are presumed guilty? I can understand what you have written about Doctor's being afraid of law suits. Perhaps this is one of the better sides of Canada's medical system. Doctors are rarely sued by patients, so they do give pain meds (after examination and tests) without the patient needing to jump through hoops but the GP's are also diligent on their patient control appointments to make sure abuses are fewer, I think.
Non the less, in Canada generally speaking, doctors, friends, family and employers all too often presume that we chronic patients has is some how exaggerated our pain or that it is not real or that it is some sort of convenient excuse. I don't know anyone who has had short term severe pain who didn't want it to stop so why would it be any different for long term severe pain sufferer?
As it was explained to my by my Neurologist once when I was objecting to taking Narcotic pain relievers, she said, Do you feel high? I said no. She said, do you look for the pain pill on those days when your pain is less? I said no. She said, do you like how you feel on the pain medicine? I said not really, just less pain. She said, do you like to be in pain? I said NO. She said take the pills. We will help you get off them when the time is right. I hope this is true.
As a society we don't want our animals to be in pain or mistreated, why don't the professions, friends and family give us chronic pain sufferers the same respect and caring?
Dockside Deb
I agree with you. I would not let my furry friends and babies suffer. I had to go through hard decisions for their good. I had to let my 19 yo cat go I was holding her for the whole procedure. Being a medical thec I was reminded once again that our domestic animals have better death than most people. How many aging folks suffered with physical and psychological pains ALONE of lenghty death. Oh don't give them medication to help them pass more "humanly"! They might enjoy the feeling and become addict ! I worked in a nursing home and saw so many dying alone that it made me rethink hardly about life and death. I don't want to end my life that way.
After retiring I went back as a volunteer to be with those who would be alone whule waiting for death. I saw so much pain and despairs. So many asked to be helped with something to end their pain.
They don't ask us to kill them but to kill the pain.
I read once that narcotics don't kill patients, narcotics kill pain.
Those who are given medication are going through it in peace to the opposite of the one in terrible pain. Where is our "humane" way ?
My cat had a better death than most people. She locked her eyes to mine and smiled, yes she did, it was like she said thank you for all those good years and thank you for letting me go. It was the ultimate gift for all those years of unconditional love and joy.