Fred Brown - FounderLegitimatepainpatients.org was started due to the many issues surrounding the illicit use of dangerous drugs by individuals for whom they were not prescribed. The “pill mills” which sprung up around the State of Florida have threatened those of us who truly and legitimately need these medications to live and to have a quality of life.

This site, Legitimatepainpatients.org, will allow us to form a coalition to express our collective voices that we have rights, too.  People in chronic pain may look normal or dress like others. But because pain doesn’t have a face, people who see us may not know chronic pain is a terrible and horrible disease to have.

It affects each and every one of us 24 hours/7 days a week. It can affect our families: marriages, relationships, our children and our friends. There is no time off; there are no holidays.

We hope that by having this site, chronic pain patients will have a platform to share their individual experiences with chronic pain. For example, the need to have fellowship trained pain management physicians who know your case and understands your needs and can provide the proper medications when needed.

Any issues in obtaining treatment for chronic pain or the medications or treatments needed to alleviate your symptoms should be discussed on the site so your voice can be heard.  Together many voices can be brought to those in power to try and get the laws changed if necessary in order to allow our physicians to keep practicing Legitimate Pain Medicine.

We want you, the chronic pain patient, to feel free to write your thoughts and feelings you may have experienced or anything else that this disease has brought to you which you wish to share. We ask only that you identify yourself by your first name.

We hope that everyone will find a joy and comfort in their life. This is what legitimatepainpatients.org is all about.

Fred Brown
Long term chronic pain patient and Founder of this site.

To contact Fred, click legitimatepainpatients@gmail.com

If your email client doesn’t open automatically, simply copy and paste the address into your program.


 

Frances-Brown

I am  Fred’s spouse, friend, and health advocate.  Sometimes, I am his caregiver when it is necessary.  He has been a chronic pain patient for approximately 20 years and we have chosen to live this journey by focusing on our love and family instead of his pain.  We also try to embrace each day and all it brings to us.

This website offers the opportunity for a patient, family member , friend or caretaker to speak and share their thoughts and experiences.  I would like to share mine with you.

Frances Brown

To contact Frances, click franceslegitimatepainpatients@gmail.com.

If your email client doesn’t open automatically, simply copy and paste the address into your program.


 

 

Up until nine years ago, I had a career, an income, walked twenty miles a week, and took nothing stronger than a Tylenol … period. Then, life forever changed.  I became chronically ill and in constant pain, which required not only that I stop working at my chosen profession, but that I would now need to take pain medication to function in my daily activities. Life was challenging enough, and then came the stigma attached to ANYONE having to use pain medications, which made an already daily challenge, just that much more challenging!

My hope is as a Columnist for Legitimatepainpatients.org, we as legitimate patients can stand together to not only have our voices heard to the individuals that are making unfair laws targeting the use of needed medications, but to support and listen to each other, in these most challenging times for us all.

Nikki F.

To contact Nikki, click nikkilegitimatepainpatients@gmail.com.

If your email client doesn’t open automatically, simply copy and paste the address into your program.

 


 

 

The intent of this blog site is not to offer medical advice of any kind. Its sole purpose is for users to share personal experiences in dealing with chronic pain. It may from time to time present published articles that relate to chronic pain issues. Any articles or studies presented are for informational purposes only. The opinions expressed in either the articles or studies are those of the articles’ authors—not this blog site.  The user always should seek medical advice from their treating physician.

46 Comments

  1. Fred Brown
    September 15, 2015 @ 1:23 pm

    Thank you for your post and I would most certainly like to speak with you further about some of your ideas as this insanity of Pharmacies NOT filling scripts which are legal pieces of papers is inhumane.

    If it is Ok, I would like to contact you later on today (Tuesday.)

    Fred Brown Founder

  2. Dr. Peter Diez
    September 14, 2015 @ 1:20 am

    I am a chronic pain patient. Being young (31) adds a whole other layer to to discrimination.

    I have pretty much never been able to fill a prescription, always being told they were out of stock. I am well dressed/groomed 31 year old doctor hardly able to walk, but I’m young, thats all there is to it.

    Every month, I have to send my 65 year old mother into the pharmacy with my script, sometimes even just a few our after on the same day, then they some how magically have the medication in stock.

    I want to set up a sting to expose this discrimination by pharmacists and document it. I am in Florida. I have a best friend at a major news network that is willing pitch doing a story on this to his journalists.

    I would like to know more about anything I can do to become involved and advocate for us.

  3. Jason Bingham
    September 8, 2015 @ 9:40 pm

    Just found your site and wanted to reach out and connect. I’m also here in Orlando and I’ve worked in/studied chronic pain for over 10 years now. (Mostly in Reflex Sympathetic Dystrophy Syndrome aka Complex Regional Pain Syndrome) Happy to be helpful however I can.

  4. gary
    July 1, 2015 @ 7:51 pm

    just wondering, why can I get a permit to carry a concealed weapon, renewable after up to date background checks at a set time interval? However, we must be scrutinized monthly by pharmacists who may or may not service a lagidamate , lifetime user of opiates. or for that matter to an extent, dr’s. Why cant the same type long term program be set up for patients. to ease burdons on people whos lives who even with meds are living a very marginal existence?

    • Fred Brown
      July 10, 2015 @ 11:52 am

      Thanks Gary for your post which brings a very interesting comparison to the world of chronic pain patients and how we often have to go through so many barriers in order to obtain medications prescribed to us. Yet purchasing a concealed weapon permit for a given amount of time seems much easier.

      They’re very well could be some background check performed for legitimate chronic pain patients where by some of the obstacles we must go through each and every month creates an enormous amount of added stress to patients which in turn increases our discomfort (pain) levels.

      I hope other readers will comment about this subject give us their opinions.

  5. fred brown
    May 25, 2015 @ 1:44 pm

    Dear V.R.,
    Fred is out of town and I read your note on the website and was filled with sadness for you and your family. You have been struggling with your husband and son for a long time. Our journey has been a long one as well. It can be very difficult to find a good doctor who will take the time to listen to his or her patients and get a clear understanding of the whole picture of pain and how it affects the patient and their family. It is a rare doctor who understands that chronic pain and ongoing medical issues affect the entire family unit.
    However, please do not give up on finding a Board Certified, caring, compassionate and intelligent doctor team. Fred fights every day of his life to find happiness and ways to rise above the pain. He has established his medical and psychological team a step at a time over many years. He has an internist, certified pain doctor, social worker counselor and alternative massage caregiver as well as specialists to help him with his ongoing medical issues. He takes the time to introduce himself to all the new pharmacists who begin working at the pharmacy. It is a struggle, absolutely, to find quality and joy in a day filled with pain, but it can be done. He uses several modalities of diversion to distract his mind, to lessen the pain he feels. He does special exercises to loosen his tight muscles and nerves and endures the pain of pressure point therapy to try to feel better.
    Please don’t give up trying to find help. It may take time but hopefully you will find good doctors who can help you develop your own methods of finding quality of life and joy again. Hopefully, you can find a way to feel well enough to enjoy your family and your life.
    I am so glad you shared your thoughts and feelings and your story with us on the website. There are so many chronic pain patients who can learn from you and others like you, who take the time to share and reach out to other people who are hurting. We can all learn new techniques from each other if we take the time to tell our stories. We can support each other with encouragement and acknowledgment. Please write again and let us know how you are doing and how your son and husband are.
    Frances Brown

  6. v.r.dead inside!
    May 14, 2015 @ 4:52 am

    When I read your story it resembles my own except that along with debilitating crypling pain that I’ve suffered for 30+ year’s from croans&serous degenerative spine disease-bulging disc’s ,slipped disc’s along with major hip necrosis, fibro mialgia- nerve damage in my mouth&gout plus god knows what else because I’ve never had a decent primary or pain dr. Since I moved back to mass when I found out I was over 3 month’s pregnant after having my galbladder removed&numerous cat scans&mri’s which exsposed my fetus to over 1000 Pound’s of radiation as well as full anesthesia from the surgery &my son is now disabled with m.r. on the pdd-autism scale. I feel like a failure as a parent do to his father whose got black lung always being the one to physically care for him cause I’m so beat down with so much pain all over that there’s not a day or night that I don’t hide to cry&pray that I won’t wake up the next day&yet I love my son so much that I feel quilty for thinking& feeling this way so I’ve become completely isolated&disowned my family or anything to do with drs.or the world that I can avoid@all cost because I’ve become so angry&hateful do to NO medical care cause out of the 9 year’s that I’ve been back in mass so I could get my son the much needed services for his serious disabilities ~30 drs. Later&not one has gave two shits about all the chronic pain that has beaten me down for the past 30+year’s now so I gave up!!! I will just suffer&continue to have no quality of life til my son’s old enough to understand why he would watch me cry in bed each night&why he say’s each night~please don’t die mommy?? I cry myself to sleep&rub his back telling him that we all have to die some time&nobody knows when that time is but I will try to hold on as long as possible for him&no matter what happens to me I want him to know that I will alway’s love&adore him with all my heart& soul- beyond life it’s very self!! When my body&soul can’t hold on any longer just remember that I’m alway’s in his heart! People don’t seem to realise- how much can the average person take living with severe chronic pain for a solid 30+ year’s & still have to stuff it the best I can to b emotionally available for my child so he’s not left completely without his mom?? His dad cares for his physical needs but it’s not fair that we all have to suffer like we do because of the many people who have abused the medical field!! I’m beyond discusted to the point that I feel like god has forsaken me&I can’t go anywhere to take my mind of the pain cause we r so poor we have no car or friends or family&out of all the agencys that I’ve begged for help in these 9 year’s along with drs./pain drs. They’ve all dropped the ball&passed me on here&there referrals just to b a guiny pig to crappy synthetic drug’s that don’t work&the different side affects to each&every one has been horrifying so I’m left with nothing that works like the pain medicine I was on in Maine did before I found out I was pregnant with my son that brought me back to Massachusetts cause Maine doesn’t compare to the services available for disabled children here in mass. So I basically had to give up any quality of life what so ever so my son could get better services from infancy up til now!! To me this is the most devastating existence that I can barely stand much longer~the constant chronic pain has beaten every ounce of hope or faith that was left of me to the point that I am truly DEAD INSIDE!! My son has probably never seen a real smile out of me&I have learnt to b the best @reassuring him daily that No matter what happens~always remember that I will always love him&that’s truly all that really matter’s ~No matter how much I suffered along the way to show him the best I could through my internal – eternal life in hell & that it was all worth it just to have the priveledge to love him unconditoinally no matter all the suffering in this world!! It’s pretty bad when I feel like my only hope would b to somehow find a way to leave my son who would b devastated without me by his side every night to comfort&reassure him nightly til he falls asleep so I could go to Florida&hopefully get the help I need with pain management & then find a way to relocate my son with all his therapeutic needs! It’s discusting that I should have to leave my state that I grew up in to gain some quality of life for myself&my disabled son who’s still a babe@9 but mentally more that of a 6 year old&such a great well rounded kid that’s extremely lonely & isolated like his mom/myself!! It’s impossible to help him make friend’s or help him with social skills when I’ve lost all hope in humanity&god has forgotten us!! There’s no such thing as a decent dr. On the north shore & the people who have been fortunate enough to find one never ever help the people like myself who have desperately needed one for the 9+ year’s I’ve been forced to suffer here so my son’s need’s with all the multiple therapies could b available for him~I feel forever lost&not all the therapy in the world with my l.c.s.w.has done a damb thing to help this suffering&it’s ironic that I’m completely Sane&not once has any therapyst told me I needed to b on any phsyk meds. So I know that every emotion I struggle to stuff do to all this suffering is adequately so. I feel like I must of been a pretty bad person in some past life to deserve this miserable life with a child that could never deserve watching his mom suffer every day of his life!! where is god&what ever happened to humanity or having the right to live a pain free life with the best possible quality of this life??!! It’s absolutely beyond tragic@this point!!

  7. Joseph W.Jones
    February 20, 2015 @ 4:26 pm

    I’m speaking out on behalf of my wife who for the last 20+ years has been in constant pain from various surgeries multiple joint replacements.I see her grimace from the pain when she stands up or sits down and I feel helpless because I can’t help her. I wonder what the people in the DEA and congress do with their family members who are in chronic pain do to relieve their pain issues.I wonder if they know what their decision to reclassify these drugs is doing to those Americans who elected these fools to congress in the first place.I also wonder if they know how easy it STILL is to go to any city or town in America and buy heroin or cocaine hashish,pot, mushrooms etc,etc. The time is long overdue that American citizens take back control of the government these officials really work for us and they are actually working for themselves,something has to change

    • Fred Brown
      February 25, 2015 @ 11:44 am

      Dear Joseph,
      Thank you for your comments. I unfortunately have to agree with you that the “buck is passed around and no one seems to want to hold it”. I once sat in front of a number of senior executives of a major insurance company and asked them what they would do if they had a headache day in day out 24 hours a day? None of them gave me a response but be sure that if not them but a loved one began to have acute pain which lead into chronic pain they would be fighting like we are.

      We are in the process of re-launching this site and as part of that I am going to be contacting a variety of people in and out of government. This nonsense of not being able to obtain the proper medication written by a pain management specialist for a legitimate pain patient must stop. I certainly do not know how long it is going to take but sometime ago I decided I as a legitimate long term chronic pain patient will do whatever I am able to do in this life to help people who are like me. Pain pills alone are not the total treatment as it must consist of a variety of other modalities. The pain medication do give us some relief in taking the edge off which can make the difference of a good quality of life or not.

      I wish your wife good health and know there are people whom are fighting for this cause.

  8. Lisa Manning
    September 24, 2014 @ 2:24 pm

    PLEASE HELP!! I am a 49 yr old florida resident who goes to a pain clinic. I have been given hydrocodone, muscle relaxants and neurontin for 13 YEARS!! yesterday, I went for my monthly appt & I was told that I was late. Having serious issues from not having meds & when I do go back will fail urine test for not having meds in system!! Can anyone advise me??

  9. Make sure you assist me with this
    January 22, 2014 @ 4:47 pm

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  10. Fred Brown
    January 10, 2014 @ 1:02 pm

    Dear Shawn,

    As I read your post it almost brought me to tears. I can most certainly relate to many different items that you make reference to. I too have been through 4 cervical and 2 thoracic surgeries. The first physician put a fusion plate in from C-4 – C-7. I had some very bad side effects from this and was told during the following year that the 6 screws were coming out. 13 Months after surgery one, was surgery two where the removal of the plate took place. In the op notes it stated that “Everything was solidly fused”. As time went on so did the increase of pain but far worse than before. The surgeon used the term “there is nothing more that I can do for you”. How many times have you personally heard that? The one good thing that came out of it was being told about a Board Certified Pain physician that was good and perhaps this is what I should consider.

    At the same time I was seeing a Neurologist for the treatment of severe headaches. When I mentioned the use of a pain doctor to this physician, he personally knew the same one mentioned to me. It was the Neurologist that did the referral to the Board Certified Fellowship trained pain physician which was a gift that was brought into my life.

    This was over 15 years ago and the doctor has tried his best with the use of medications, PT, OT, injections, Radio Frequency, Bio-Feedback, etc., that has kept my life somewhat stable. I had to stop working 12 years ago due to the pain and increasing symptoms. In 2005, it was suggested that I see a Board Certified Neurosurgeon as a result of an MRI that had recently been taken. This new doctor did his workup; felt that whether he did the surgery or someone else did it I should have it done. Otherwise he felt that I would be paralyzed. The reason all not fused from years prior. C-6 thru C-7 never did fuse and as he pointed out you either are fused or not, there is no middle ground.

    My brother and I went to Atlanta to see someone for a second opinion that was in high regard in his field that agreed with what the local Neurosurgeon suggested. So in 2006, I had approximately 11 hours of surgery divided into 2 surgeries. First day was to anteriorly go in and begin the new fusion and clean up. The second surgery 3 days later was posterior to complete the clean up and fusion to end up with being fused from C-2 thru T-1. It was a very challenging surgery for not only me but for my wife, children, brother and others. Several months Post Op, I felt very guilty saying the following to the Neurosurgeon that did the work. “I knew that you did the best that you could with what you had to work with but my pain level is worse post op than pre-op”. I truly felt that he really did what he could due to the damage that was caused during the years that I was earlier told that I was “solidly fused”.

    So where am I today in what I call Discomfort as if we all use the word Pain as it gives a negative message to ourselves. It may be something little in the scope of my life but I do believe that it helps and I try my best to try it with fellow chronic pain patients along with doctors.

    Often there are days that I think why am I getting up today? I guess the answer goes along with something that I wrote and put on the back side of my Legitimatepainpatients.org cards. It reads; “I am able to put my feet on the floor today. I choose to try my best and ‘walk’ away from any discomfort I am having. Thinking about it serves No purpose. Think good health and do my best to feel good”.

    Shawn, you have a tough life but you also have a wife, children and perhaps other friends and family that I assume love you and you the same. The disability that you have received in this life is there. We will never really know why you, I and millions of others have it. Yes, it could be to an accident or some other event but it really does not matter. I in no way can or would tell you what to do or how to live your life. I felt it was important to outline mine and maybe something within my words could help you.

    As to the medical side, I do not know how far you are from Boston but it seems that with some of the various hospitals there and the pain programs that are offered, perhaps you would be able to find someone in the field of Pain Medicine that is qualified and in a way for this medical issue be a so called primary for what treatments, test or other professionals you could see. I do not have any further answers other than making the suggestion.

    My friend it’s just not easy but you must look at what this world has in it and perhaps why you are part of it. Good luck and I hope you find joy again throughout your life.

    Fred Brown,
    Founder of Legitimatepainpatients.org

  11. Shawn
    January 9, 2014 @ 8:49 pm

    I read freds story and blogs that a lot of suffering people wrote. Sorry to say but I’m happy it’s not just me. I live in ma and have had multiple surgeries, treatments, and medication. The Dr.s That I have seen all state that I will not get better and I have been abandoned 3 times over the past 4 years. A surgeon who performed my neck surgery stated in writing that my fusions in my neck looks great and was successful. Yet my pain increased to the point some times my head is stuck down in pain for days. I am suffering daily. It has affected my marriage, children, and way of living. In ma most pain clinics will give you shots and therapy and if u do not improve or complain they stop treatment and send you back to your primary care for meds. Most primary cares do not prescribe these meds needed in ma. I can not even get a response from some pain management drs for weeks if at all. My pain does not work to their schedule so they drop you and move on. I am at a point now where I do not want to continue the way I am. I feel terrible asking for help because of how they look and talk to me even at the pharmacy. I do not want to be this way and have dealt with this problem for to long. Pain clinics in Mass are not working to help the patient. I was billed by a dr who had me get new MRIs of my back and neck and shoulder. Then the doctors office told me they will return my call to set up an appointment if the Doctor wants to treat me and it would take 6-8 weeks. Really this is a joke in ma. My current Dr. is working with me seeing what Im going through. I am going to end it if I continue to face it. I have become a burden to my wife and children. I put in a complaint about a doctor and found out he investigated him self to have treated me as he should have. The hospital and state felt this was sufficient. Yet under his care more damage was done as doctors have told me but will not blame that dr in writing. I have had 52 cat scans in 6 years and 41 mri’s. I have been in physical therapy and also forced to goto psyc treatment because of my meds and suffering at 3 different places and all 3 stop that process but it cost my insurance and myself a lot of money to start over. I feel my current dr. is my only help. I have been abandoned by 2 surgeons and have proof that the surgeries were bad but F me. I hope things will change before more suffering people choose the only way to be without pain.

  12. TwiceShyNow
    December 17, 2013 @ 3:35 pm

    I see this portion, but am I missing something? I hoped we would have a forum, or other organized communication. I am fearful of being forced to live in agony, on top of being in a place where medicine has no help for people with my condition. I can forgive them their failure/refusal to help, if they will just leave me alone. I never bother anyone, don’t go to the doctor much. If they can’t fix this, why waste everyone’s time? So, all I ask for is some relief from the misery. Those who have been legitimately taking prescribed medications judiciously for years, and have no hope of cure, need and deserve to be left alone. They will be leaving us alone, won’t they? I am not well enough to be up and dressed most days. I fear being expected to go out in order to get my medicines, which my husband gets for me now. Is there a new change in the way even the lowest dose pain meds are administered? I KNOW for a fact that most deaths and abuse are not committed by legitimate patients, and I am sick of the attacks on the sick, and the forcing of odd and dangerous new treatments. Any ideas on what we should be doing?

    • Fred Brown
      December 19, 2013 @ 10:53 am

      I would like to thank you for taking the time to post this and especially expressing the feelings that you are having. Please accept the fact that I am here in no way telling you how to feel as each of us has the right to feel as we do.

      I do feel a sense of responsibility to share with you what I have tried to do in the past on this site. Many people who do not live in severe chronic pain have no understanding as to what we are going through and how our lives are at various times. I do not know what your medical condition is but I’m able to share the fact that there are times that we have to be firm with those providers as to where our honest pain level is at. And today, it can get worse as even a pharmacist can question what medications you are taking and can refuse to dispense it.

      I completely agree with your comment as to the constant attacks on “the sick” which I assume is tied into chronic pain which now is defined in the medical community as a disease. You asked if there is a new change in the way the lowest dose of pain meds are administered. I’m not sure that I fully understand that except to say that if one has the disease of chronic pain that is tied into some illness or other legitimate medical condition then yes, you deserve to be treated accordingly and in a humane manner.

      As to you make a point that most deaths and abuse are not committed by legitimate patients, I have read in many articles and have spoken to various physicians that the overdosing comes from people that do not need strong medications and do not follow their physician’s instructions. Further, there is solid proof that when the media reports on the people that have overdosed, they leave out that the state medical examiners have found a mixture of drugs and even alcohol within their system. This information is usually not brought out, only the attention grabbing headline.

      I would like to share with you the word that I have learned and do not always practice myself but it is a goal of mine. The simple word is HOPE. I have learned that one of the most powerful analgesics even as an adjunct to using medications is Diversion of the Mind. The time that I have spent writing this response is time that my mind is not on myself but on this posting.

      Please Be Kind to Yourself,

      Fred Brown, Founder of this site

  13. Anonymous
    November 4, 2013 @ 11:38 am

    Dear Fred: It was great catching up with you last night. I am sorry to know that you are suffering so. By now you know, people in their 60’s + experience one sort of pain or another. I believe you were right, saying that keeping the mind clear and challenged is a good alternative. I try to exercise through my osteoarthritis. When the swim or workout is over, I usually feel better. Wishing you and your family the best life has to offer.

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  20. Francie Hernandez
    July 8, 2013 @ 1:45 pm

    hello to all in pain today. i would like to start off by saying i am also a legitimate pain patient and i go through the same things as the rest on here every month. i have found a point of contact search donna ratliff to sign the petitions. sign every petition when it comes to changing the way we are treated. i am in tennessee, the knoxville area and i am looking to start a patient representative organization for every person having these issues. anyone having the problem should email me for details on some of the things that can be done to aid the issue. i will be taking clients as soon as i get organized. my email is noirtier1@gmail.com

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  22. Maggie
    July 1, 2013 @ 8:52 pm

    I was injured as a NYS Court Officer. I was actually able to go back to work after a couple of surgeries. The issue was I was trying to control an altercation and went head first in a brick wall and then back down a flight of stairs. It sounds idiotic and in Brooklyn we moved to a brand new building. It tore both of my knees, (no CHRONIC UNBEARABLE PAIN FROM THAT), I fractured 2 cervical vertabrae, 2 Lumbar and even though I had 6 children and could have fractured my Tailbone giving birth, it was shattered and pinching nerves. I didn’t understand the shooting arm and hip pain, since I didn’t injure them! An EEC showed permanent partial spinal injury. I was 38 and had a choice to make. I was always a non-drug taker since I wasn’t in pain. I was told that while my bones and knees will heal, I will be in the same amount of nerve pain for life. I also had intermittent numbness and weakness? I signed the papers knowing exactly what I was getting into! I knew after a couple of months I would be physically dependant on this drug if by some MIRACLE my partially permanent nerve damage went away! I was given morphine and aspirated in my sleep that very night! WTF? I had morphine in epidurals and wasn’t allergic, I was told I just couldn’t tolerate swallowing it. I was given oxycodone to take every 4 hours to see how much of the long lasting Oxycontin I could minimally take and still function I still couldn’t hold my 8 month old daughter and I made more money so my husband stayed home and had to pick her up for me. My knees weren’t fixed yet so they would give out! If I would take the amount of acetaminophen in Vicodin I’m sure I would have Liver failure. I looked foward to painful spinal and cervical epidurals! They lessened my pain and spasms! Others in the docs office hated them. I was back at work. I was hurt in 2004 and officially retired on disability in 2012! That “Evil” pain med that NEVER MADE ME FEEL HIGH OR DROWSY, did that FOR ME! It does make me anxious and I had gone off it. I felt like a had the flu for a weekend. Vomiting and the runs and the runny nose. EVERYTHING HURT FOR 2 WEEKS! After that the only pain I couldn’t bear was the original back, neck and shooting pain down my arms and hips. I went back on it. I had to stop the epidurals 3 years ago because I had WAY TOO MANY! I was 44 and bone density was a conncern. I have another injury from the intermittent arm pain and numbness. I was holding on the subway when it jerked. I had work boots on a traction strip and broke my ankle and leg and have rods and screws that only hurt a bit when it is below freezing. I will not be a burden to my children or husband!! I refuse to give up my new painful life for one I won’t be able to tolerate! I have never increased my dosage or abused my meds. My kids didn’t know I had them and they were always in a safe! I did everything right. I will not live in unbearable pain because someone can get “high” from a drug I can’t get HIGH FROM! It depresses your breathing and if you leave it where children can reach one, it is WORST than a firearm! They will die instantly! If you are responsible and need it to live with bearable pain than you should have your rights kept intact! Why do junkies want it anyway? Glassines of Heroin are much cheaper! I think people who have children should be made to watch some video if they can’t read! AGAIN WTF!!!! I don’t want teens and children dying but they want people to sign a petition to ban a medical drug when the real junkies will be dying from Heroin anyway! Kids again will be dri king methadone out of the fridge. Oh I forgot that comes in a pill now and is an opiate also! Out of REAL CHRONIC PAIN PATIENTS A SURVEY OF 5000 SHOULD .27 BECAME JUNKIES! That is a quarter of one percent! NYC banned Soda and trans fat which I don’t drink or eat. It still is becoming a POLICE STATE! I come from a large family of law-enforcement! I can’t carry a firearm because of my injury. Years ago I read a post that at the time seemed cold to me. Now, I feel the same way,(I just don’t want people to die), it said give people who have documented chronic pain their pain meds and if they abuse it stop giving it to them and if they O.D. then they KNEW they were taking too much!

  23. tiredofpain
    June 19, 2013 @ 1:32 pm

    I am glad to see someone start a site for people in Florida to get together and try to do something about helping people in this state with legitimate pain who take narcotics for legitimate reasons! I understand that the state wants to control the pill mills and people selling prescriptions to people who take meds recreationally…It infuriates me when I see postings where recreational drug users will take prescription drugs they bought on the street then have the b***ls to blog about it on the computer! I think to myself that idiot is the reason that I am driving around with my husband for sometimes 4 hours after my pain management Doctors office visit trying to get a legitimate prescription filled for my chronic pain! To compound the problem Florida treats everyone as if they are illegal drug users and misusing their prescribed meds! It comes out that the problem isn’t unique to Florida first off…Florida ranks something like 7 out of all 50 states on misuse of prescribed drugs meaning that 43 other states have a bigger problem with deaths due to miss use of rx’s! To top it off it turns out the distributers of the opiates are the ones who were selling the drug not the customers but yet the customers are the one who suffered and are to pay the consequences of someone else’s actions! How is this fair? No one else cares because they don’t suffer the withdrawal when they can’t stay on meds and they aren’t in pain!!!!!
    Reply ↓

  24. Fred Brown
    May 23, 2013 @ 11:31 am

    Hi Kerry,

    I usually do not answer post directly but the item that really struck a nerve with me was when you said “Hearing other nurses talking about patients complaining of back pain, accusing them of faking it”. Others, especially in many parts of the medical profession just do not get it. Often they see so many of us dressed in street clothing, business attire and figure that this person cannot be in as much pain as they say.

    We as Chronic Pain Patients have to continue the battle and try to get up to the mountain top. There will be many different things that get in the way but those of us that still are able to keep the communications going and make this a national goal need to do so.

    Kerry thanks for your posting.
    Fred Brown Founder of this web/blog site

  25. Kerry
    May 23, 2013 @ 8:55 am

    After nearly twenty years of back pain, the past two being near debilitating, my insurance finally authorized an MRI. All along my doctors and I thought it was my SI joint. Much to my dismay I have degenerative disc disease and several discs protruding, with L5/S1 with central protrusion. The pain is unbearable at times and is getting worse week by week. I have a great team of doctors; a pain interventionalist, a neurosurgeon and my primary care physician. There are times where I can’t feel my thighs, hurts to cough and breathe, literally am scared as to what tomorrow will bring. Being a Registered Nurse does not help. Hearing other nurses talking about patients complaining of back pain, accusing them of faking it infuriates me. I wonder if my family and friends have any idea how much I’m suffering. Thanks for giving me a voice. At least a place to vent.

    • Janet
      July 4, 2013 @ 7:35 pm

      Hi Kerry. I symphathize w/u (my pain is so bad I can’t even spell!!!) I have the same symptoms u have plus many more & it started bk n 1986. Here I am sitting n bed on July 4th imprisoned w/whole body pain while my husband is out @ a BBQ party. I couldn’t go b/c the pain & other symptoms are causing me to not b able to eat (nausea from pain), I can’t stand, sit, or even get comfortable n my own home/bed-how does he think I can go to a BBQ party & @ the very least just b “comfortable”?! Just got lumb transforanimals 2 days ago & he thinks I should b “all better” but procedure has not fully kicked n yet plus it won’t do anything about the other pain & symptoms coming from the rest of my “crumpled up” (his words)/deteriorating spine. Yet he yells @ me & gets all upset & mad @ ME b4 he leaves b/c “he is tired of putting up w/this!” WHAT ABOUT ME?! Does he REALLY think I “want” 2 b like this?! I’ve lost my professional career, my friends & my life as a normal, active & very social person! Family & others give me such a weirdly confused look when I tell them I can’t do or go…just b/c “I look good 2day” doesn’t mean I am good! & people just cannot understand/grasp the idea of how I can b n such paralizing/debilitating pain as I claim, telling me “well if I took a nap every day my body would want one everyday too” or “u need 2 do this or do that”…something a “normal person” would do-like taking an asprin… so I end up just quit trying to explain myself to them & I go back n2 my isolation…it is so hurtful & disheartening that they cannot understand-or @ least TRY 2 understand! I feel like I’m living in this prison of pain all by myself… I thank God tho, for my life-saving pain mgmt dr!! Those of u that suffer as I do, I am sure, know what I mean when I say “life-saving”! That’s another story n itself…. thank u 4 this website-thank u 4 letting me vent.

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  29. Donna Ratliff
    May 4, 2013 @ 3:42 pm

    Dear Fred,
    This is awesome that you created a website for pain patients to sound the alarm about all the problems that is going on, especially in Florida. We need as many patients to speak up that possibly can. I have been to the state capitol and rallied with patients about all of the access issues to pain medications for legitimate patients on Sept 12 2012 but we need to make more noise! There hasn’t been enough media covering our problems since then. I think the state government feels everything is ok because no one is complaining on the news anymore. We all need to say more and do more to STOP this inhumane treatment. As a poster said before, ” We are going in reverse here with pain care!” Back to the decades where there were no access to opioids for pain. The CDC , FDA, DEA and other agencies are blowing numbers out of the water for political reasons. It only makes sense for more people to be taking pain medicines because there are 100 million with daily pain, so of course the numbers are going to change. The population has exploded with 7 billion people world wide. The baby boomers are now turning 65 at the tone of 10,000 a day! The number of abusers and over doses are very low compared to these. We need to protect our rights to have access to pain medicine or the suffering will be worse than a third world country and for God’s sake! This is America!
    Thanks for creating this blog and hopefully we can get more patients to speak up.
    God Bless,
    Donna Ratliff

  30. Mary Frances
    May 1, 2013 @ 9:56 pm

    I am so glad someone is doing something like this! We need to organize! what .going on in this Country is intolerable, it is like we are going back to the dark ages! I have Chronic Pain which was misdiagnosed for years as “All in my Head”, I now have nerve damage too! I am tired of wondering if my pain meds will be denied next month, Medicare limits my Appointment for Nerve frequency Ablation. I tried to work, but getting a simple accommodation like an ergonomic computer set up was impossible!
    I have a friend with Fibro, who just got denied a bunch of meds, not just Opiates, for no apparent reason. I think her Doc is just too lazy to follow up on the Prior Auths. I have another friend with Chronic Pain form a Stroke, being treated with NAIDS, they are not working, but he doesn’t have the energy to go to the VA “Pain Clinic” 65 Miles away! He is growing a breast from a medication that stops the bleeding form the NSAIDS!
    I could go on and on!

    I am tired of it!

    I live in poverty, and getting out the heavy door on my apt building is a nightmare for me. I don’t look like there is anything wrong with me so people think I am faking it, a” Drug Addict” or Malingerer. I went to a Neurologist for 6 years who lied to me, and she never even looked at my MRI’s. I have a good doctor now, but I ma so tired of all of this. I am also reacting to my pain meds, they are making me itch, I had to switch, My Insurance company arbitrarily decides not to pay for some meds!
    My back is aching right now because I am on the computer! I have to go lie on my heating pad!

    Lets Organize!

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  37. Frances
    October 1, 2012 @ 11:29 am

    I would like to make a comment as a Pain Patient Advocate. I have lived for years with my husband and his struggle with chronic pain following multiple surgeries. I have participated in countless doctor appointments, physical therapy, emotional therapy, lab test appointments, treatment procedures and waited for hours in surgical patient family waiting rooms. I have many miles on my car to pharmacies and a large portion of our income has gone to the above. I also am responsible for most of our home’s upkeep since he is physically not able to do so. This is the other side of the coin for the family members of pain patients and I hope other people like myself participate in this venture also.

    • Claire Vosburgh
      September 17, 2013 @ 7:46 pm

      Frances, I thought I was reading about myself when I read this. I don’t know about your husband, but after 12 years of struggling in so much pain, he is just so tired of it all. Since he was so active, and he’s not much of a reader, I don’t have many ideas to keep his mind off the pain and from getting so bored. Do you have this problem?

      • Frances
        September 18, 2013 @ 10:41 pm

        Hi Claire – I too have been at this for several years. I have found that there is nothing I can do to keep my husband’s mind off of the pain. He is the only one who can attempt that with any measurement of success. I try to help by supporting him in most of the things he would like to try or expresses interest in. I have found that my being home, participating in any measure of his life, being in the same house or room or on the other end of the phone seems to help. I have then become the diversion from his pain. Even participating in a conversation with him provides diversion. It doesn’t alleviate the pain or make it go away or enable him to not notice it but it provides an avenue of some measure of mental escape.

        Sometimes we drive to the beach or go to a different restaurant, watch a movie at home, etc. We do have two dogs that take up a lot of his attention and time and have somehow become his second set of children. He tries to learn everyday by reading articles on the internet, etc. He leaves home and goes to the drug store, out to lunch, grocery store, etc. to try to engage with people in a positive way. It is pretty much up to your husband to find his own avenues of diversion because then they will mean something to him. It will not be as effective if they are your solutions.
        Hope this helps – it is not an easy path we are on but it presents a unique opportunity for sharing our lives in a caring way with the people we love.

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