Nih And Pain Management
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Good day to all. This post is for those who may be faced with chronic pain or who may have loved ones undergoing difficult challenges in a similar capacity. I'm writing this message because I just stumbled upon an article by the National Institutes of Health (NIH), as they recently announced a meeting they held on May 31st through June 1st, 2018 discussing chronic pain and the opioid crisis. The event was intended to highlight the need for better pain management by taking advantage of the latest research in the field.

In hindsight, many of us have come to terms that it's predominantly an illicit drug and fentanyl crisis (not solely prescribed opioids as is often depicted), but for the sake of allowing mainstream news to shed light on better approaches to pain management, I think this meeting at NIH should be viewed as a positive thing in the chronic pain community. Some questions they presented at the meeting include:

- How can the field make quality pain care available to everyone?
- Can cutting-edge brain science improve pain care?

Although these questions may seem vague, the notion that a growing percentage of pain patients aren't receiving proper care from their doctors is being rapidly spread through mass consciousness.

The article also brought into perspective an organization that many of us may not have been aware of, called "The NIH Pain Consortium". The consortium reportedly supports initiatives, development of research resources and tools, and hosts events to promote collaboration and highlight advances in pain research.

Source: nih.gov/news-events/news-releases/nih-hosts-meeting-chronic-pain-opioid-crisis

I share this information on the Pain Consortium in an effort to open another line of communication between chronic pain patients and those who may be in a better position to help voice our concerns as a community, through various pain management meetings or events they hold as well as through their website at:

[1] painconsortium.nih.gov/PAIN_Contact_us

I hope this helps!

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Re: Bella (# 12)

I turned 64 this past Friday. I wish that it was 65. At least I could medicare. I can disability because I was self employed before my surgery and didnt pay in the last 5 yrs; so therefore, no medicare and no disability. Took early social security when I was 62 and basically lost $800 a month because I couldnt do the work I was doing. Tried to get SSI (the difference that i lost due to be disabled) but the the threshold to get the difference is only $775. I get only $940 a month. So social sec. will get all that money I paid in.

Medicare would help where at least I could get into Doctors locally and hospitals that were not "F" rated. Im a prisoner in a Medicaid managed health care plan with Cancer. Medicare is getting worse (although I would take if over this abuse); because all the baby boomers turned 65 this year. The government overspent and cared nothing about that. Plus they have make sure that all of those healthy pensions the government employees are promised dont loose their nice cushy early retirements.

As far as all these generic companys popping up, that is a huge benefit for the FDA in regulatory fees. Ive said this before on here: The problem is they get the huge fees from Big Pharma every year but the manufacturers are not being regulated. They cant afford the fees. Now this is way I see it. Are prescription medicines dont even say FDA approved; because I dont think they are. With opiods; they restrict the pharmaceutical company on the amount per year. Then a new company gets a piece of the pie and FDA get another regulatory fee. Just try googling the cost of regulatory fees and FDA. Those drugs were taking have to made cheap.

I dont know how well of a job I did saying this but at this point, popping off is the only thing I left. Just to be clear, the manufacturers in China or wherever out of the country, cant afford to pay the fee and the FDA doesnt bother to go there and find monitor them. Sounds like good deal for the FDA and Big Pharma; doesnt it now.

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Re: MeJane (# 11)

I turned 64 this past Friday. I wish that it was 65. At least I could medicare. I can disability because I was self employed before my surgery and didnt pay in the last 5 yrs; so therefore, no medicare and no disability. Took early social security when I was 62 and basically lost $800 a month because I couldnt do the work I was doing. Tried to get SSI (the difference that i lost due to be disabled) but the the threshold to get the difference is only $775. I get only $940 a month. So social sec. will get all that money I paid in.

Medicare would help where at least I could get into Doctors locally and hospitals that were not "F" rated. Im a prisoner in a Medicaid managed health care plan with Cancer. Medicare is getting worse (although I would take if over this abuse); because all the baby boomers turned 65 this year. The government overspent and cared nothing about that. Plus they have make sure that all of those healthy pensions the government employees are promised dont loose their nice cushy early retirements.

As far as all these generic companys popping up, that is a huge benefit for the FDA in regulatory fees. Ive said this before on here: The problem is they get the huge fees from Big Pharma every year but the manufacturers are not being regulated. They cant afford the fees. Now this is way I see it. Are prescription medicines dont even say FDA approved; because I dont think they are. With opiods; they restrict the pharmaceutical company on the amount per year. Then a new company gets a piece of the pie and FDA get another regulatory fee. Just try googling the cost of regulatory fees and FDA. Those drugs were taking have to made cheap.

I dont know how well of a job I did saying this but at this point, popping off is the only thing I left.

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Re: Bella (# 10)

Awesome quote ‘ its so true! It is despicable as we are smart; the formulation of this medicine has been altered! The energy factor HAS BEEN REMOVED as well as little pain relief! I know there are new remedies for pain for the new generation however in my case I have a failed back where even now there is no cure because of my years of surgeries. I am praying we baby boomers can be “grandfathered” in to least live 20+ more years of comfort. Omg. After all these years fighting a wheelchair as only option without the medicine that has worked for me? To not enjoy my golden years coming to play with future grandchildren?!? To be treated like a drug addict? I am disgusted &humiliated like us all. I cant even order the brand only due to medically necessary by my doctors cuz of new horrendous side effects. We are not crazy. We have not become intollerant to percocet. Anyway lets just pray some brave atty steps up for us. God bless you & all.

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Re: MeJane (# 9)

Thank you MeJane for the reply. I heard a quote this morning that reminded me of how they have deceived the public, twisted the truth and down right lied about the "so called opioid crisis".

"The Truth Cannot Withstand A Lie Aided by Continual Propaganda"

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Re: Bella (# 5)

Awhh Bella you most certainly did NOT come across other than a caring, giving woman even under such dire circumstances having to deal w/your illness the fact u r taking the time out to share & help us all LONG TERM NON-ACUTE CHRONIC PAIN patients obviously now the victims that crept up on us this past year amidst this drug war...OMG it’s so obvious our meds have been altered, making us sick seemingly overnight w/onset like a CPP EPIDEMIC symptoms onset 2017 to-date! It is no coincidence the amount of people who have reached out & found this blessed site.

I’m still hoping too there is a brave atty or an “Erin Brocovich” will step up & represent us all in a class action suit! I've written to so many, no replies. It's become relentless, exhausting but we cant give up. It's sad after years of suffering through countless surgeries, procedures, etc resulting in “nothing more we can do for you...” diagnosis we were blessed to find the miracle of Pain Mgmt to sustain us to live our lives with at least a tolerable level of pain without side effects; a pill that also took away depression, fatigue for years...now suddenly total opposite.
Praying for you & all of us.

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DOUG (# 6) --

Dear one we are all here for you to hold you up & keep you strong; we will win once we expose the truth that our pain meds have been altered with either a less ingredient and/or a new ingredient to namely Percocet/Oxycodone...all of them. It can’t be a coincidence that 100’s of fellow long term non-acute Chronic Pain GOOD patients have reached out to this site for help having all the same horrible side effects that YES began almost overnight this past year & overtime seems the intolerable pain which put me into Pain Mgmt in the 1st place has returned with a vengeance! Worse is Pharma, FDA, DEA, & GOV’t are doing this like sneaks without our knowledge, consent; as if they r poisoning us.
We will win as long as we fight to expose the truth & get our meds analyzed chemically. What they claim publically the ingredients is what they choose to print. We will find this out.

But YOU MUST STAY STRONG! We need your voice! You are 77yrs old & I’m sure there are many who love you & need you! Think of how much you have survived all these years! I beg you not to lose faith. Yes, my existence has taken a 180 turn from this what I believe is a placebo and/or has been altered removing an ingredient that works on the brain that gave us an uplift to fight the depression part of our disabilities that have exhausted every procedure to fix; realizing your body is as good as it will ever get & have to live with it. Please reach out. Pulling the trigger IS NOT WHAT YOU WILL DO. We are here for you!! God bless you!

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I HAVE HAD PAIN FOR MANY YEARS FROM DIABETES AND OTHER THINGS,,THE MEDS WORKED, BUT SINCE THEWAR ON DRUGS CAME ON MY MEDS HAVE BEEN HARD TO GET AND IF IO GET IT THEN IT SEEMS THAT THE DRUG COMPANIES HAVE REDUCED THE AMOUNT OF PAIN KILLER IN IT A,,I NOTICED THAT MY PAIN HAS COME BACK VERY BAD,,I HAVE HAD TO ROUGH TIME TRYING TO GET MEDICINE THAT I USED FOR YEARS AND WITH NO TROUBLE...BUT NOW THAT THE WAR ON DRUGS TO STOP DRUGS USER HAS NOW EFFECTED ME LIKE I'AM A DRUGIE....I HAVE PAIN AND NEED MY PAIN KILLERS AT MY AGE OF 77 AND SUFFER AND CAN;T GET HELP BECAUSE THEY ARE TREATING ME LIKE A DRUGIE.....I SUFFER AND HURT BAD AND CAN GET NO HELP,,,BUT I WILL BE MY OWN DR. SOON..I HAVE SOME THINGS THAT WILL RELIVE MY PAIN AND SUSCIDE IS IT....I WILL NOT SUFFER WHILE THE GOV, AND STATE TELL THE DR;S AND DRUG COMPANIES WHAT TO DO,,,I HAVE NO DR. NOW, THE GOV. AND STATE TELL THE DOCTORS WHAT TO DO...BUT LET ME TELL YOU THIS,,I WILL PULL THE TRIGER WHEN I CAN STAND THE MENTAL AND PHYSICAL PAIN NO LONGER.....THEN I WILL BE FREE,,,FREE,,FREE,,AND THEY CAN HAVE IT, TO USE THEMSELVES....

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I was supposed to go for a muscle biopsy the other week and I was sent to an interventional pain clinic which is a new name for we only treat problems that we want to treat. Preferably recurring procedures. Anyway, instead of a biopsy they sent me for a bone spect scan of my lower back even though I tried to impress upon them the whole body problems I suffer from.

I've been successfully treated with Ketamine where all my aches and pains have gone away except because of the witch hunt they wanted me to go from a yearly visit to monthly visits I cannot afford.

I'm on so many medications which have eaten up all my savings, thanks to the doughnut hole, and as of 2011 I'm diabetic. From what I was told it is probably from all the steroid use over the years. I was also told that morphine contributes to becoming diabetic as well. The other gift from steroid use is Shingles which my body won't tolerate the Acyclovir anymore probably because it's dirt cheap.

Well anyway back to the interventional pain clinic. They want to inj. my Facet joints at several levels and just ignore the rest of my symptoms which seems crazy to me. Instead of Ketamine 3x a day I can get needles shoved into my spine every 6 months or so, maybe more or less frequently, and it may or may not work but they won't give me a script for Ketamine which I know works with NO side effects. If the needles work I can ultimately have my nerves "peeled back" or "burned" with radio frequency.

It all seems very invasive to me and only abates my lower back issues which are the least of my problems.

I all but begged to get a script for Ketamine and I was told that their Neurologists will not write chronic pain medications that they work with other providers in the past that would fill that gap. They also told me that most pain management doctors are leaving the field and chronic pain management is going back to gp's. Well I don't know about your gp's but mine made me sign an agreement that said they will not provide chronic pain management and even though I crossed it out, along with several other clauses, because they are providing me morphine on a chronic basis the doctor made me sign another agreement with the clause remaining in - hypocrites. I signed but added I was signing under duress. He has to date refused to increase my morphine even though it was him that caused the riff between my pain management doctor and me who now has left the area leaving my pain management doctor refusing to manage my morphine since my gp was so intent on writing the script that the pain doctor said have your gp change the dosage. Now I'm stuck for 10 years at the same dosage. I don't really like the morphine but I can't get what I need even though morphine is a higher scheduled narcotic and ketamine is on the same level as Xanax.

I think what we need now are some lawsuits for malpractice. I may very well consider doing just that although I don't know what the burden of proof is for failure to prescribe in a world where they don't want doctors prescribing.

Imagine if we had taken the $18 billion I think the feds laid out for opioid disorder treatment, what a farce, and put it back into Medicare and Medicaid which both Obama and Trump have taken billions.

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Re: MeJane (# 1)

I hope I didnt make it sound like it was all about me; just because of cancer. I was upset and didnt mean too. There are others suffering more. Anyhow, just had to clear that up. (-: Check the National pain report. There are daily updates. Very informative site.

Let all hope somebody, with some power, comes to their senses and stops this witch hunt. Sure doesnt look good though.

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Hi! I wrote to you also David last week. Before I report my complaints/concerns to FDA, DEA & NIH I want to get my current script analyzed by a lab for complete chemical analysis of ingredients. It just cannot be a coincidence how the affects have literally changed dramatically/suddenly in last year. Given the fact so many long term Chronic Pain patients are reporting same it is vital we are given the truth as to the alterations that have obviously been made to Percocet Generics (oxycodone/acetiminophen) et al.

Can u recommend any labs in the North East FL (Jacksonville/St Augustine/St John’s County) area?

Thank you!

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If pharma had anything to offer they would have presented it a long time ago. Pain treatments have always been tricky because you have to anesthetize the body without shutting it down.

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"Although these questions may seem vague, the notion that a growing percentage of pain patients aren't receiving proper care from their doctors is being rapidly spread through mass consciousness."

Of course the questions are vague and ambiguous; there addressed from the government. The notion that pain patients arent receiving proper pain care???? HuH !!!! They know damned well they arent.

The National Pain Report (advocates for chronic pain patients) has posted the long drawn out surveys asking for pain patients comments. Thousands of people responding (I didn't because I knew it wouldn't do any good) and its only getting worse. I heard Doctor Drew Pinsky (aka radio host) bragging about how the amount of prescriptions for pain patients are way down; yet still the problem with fentanyl. NO KIDDING!!! They know their hurting people and they don't care. This is all a way to deceive people who don't suffer with pain or lost someone due to illegal drugs, to make them think there doing something; while something important like the homeless population grows.

There have been people who were suffering from the lack of pain medication and have ended their lives. If they were to use the last supply of prescribed pain meds as a method; they will chalk they death up to another death from opoids. I just heard this week that they are now sending the Doctors who prescribed the opoids (or reduced dose), letters notifying them of their patients death. There talking about prison sentences for Doctors.

I'm a stage 4 cancer patient. The last time i went to palliative care, they were trying to get me to start methadone. Horrible Drug. I'm only using a few 5mg in a 24hr period. I have lung cancer for God sakes. Also read an article where there starting to think they should be careful with cancer patients; because if they get better, then their addicted to opioids. Talk about fear; what kind of comfort care does a person have to look forward to in their final days? I hope those responsible suffer in pain but they wont. They will get whatever they need. Do I seem like i have had it?

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Wow! THANK YOU! I’ve been in pain mgmt for 20 yrs after exhausting all surgeries, procedures my dr’s, specialists diagnosing failed back syndrome, arachnoiditus, spinal stenosis...years of grueling testing, etc. in addt until I was introduced to MANAGED opiod ie; percocet every medicine prior I had allergic reactions &/or no relief. Since then I’ve led a somewhat normal life & not in a wheelchair as they predicted I’d be in by age 40. I am now 60,because of my MANAGED meds I can walk.

Now w/this opiod crisis bcuz of addicts/misuse/dealers I am petrified in losing my lifeline. I’ve also noticed the med itself has been altered especially generically. Percocet brand is not even avail by pharmacies. There are many like me I’m sure & our needs are not being considered nor relevant. The fillers are not even quality tested, we r being treated like drug addicts at pharmacies at refill time...the restrictions go on & on! Prayers & love to all.

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