Chronic Pain members - Welcome, please introduce yourself

Hi. My name is Julie and I had encephalitis and meningitis of unknown origin which lasted 6 months and that cleared up about a year ago. During these last 12 months the headaches continue daily and are very incapacitating and brain recovery is difficult and slow due to the ongoing headaches. I’ve had/ have numerous oral medications and the Cephaly device, as well as had 3 Occipital injections, 2 trials of Botox injections with no response, and now am on month 2 of Emgality. My neurologist is working his way through the options and I do appreciate that but love that I found this group and maybe will get some good support and advice. Is anyone else on Emgality? If so, how long was it before you saw results?

I have been a member of The Chronic Pain group for over a year and I believe this is my very first post. That's not because I don't have anything to say - I could go on forever but my chronic intractable pain is so intolerable and overwhelming that I literally don't have the energy or time to express my thoughts and feelings since my pain clinic abandoned me almost 3 years ago. The pain is so all-consuming that I can only stay awake for about an hour and then I have to knock myself out. I just wanted to let you know that I read your posts when I can and you have my greatest admiration. Thank you for all you do!

I have been a member of The Chronic Pain group for over a year and I believe this is my very first post. That's not because I don't have anything to say - I could go on forever but my chronic intractable pain is so intolerable and overwhelming that I literally don't have the energy or time to express my thoughts and feelings since my pain clinic abandoned me almost 3 years ago. The pain is so all-consuming that I can only stay awake for about an hour and then I have to knock myself out. I just wanted to let you know that I read your posts when I can and you have my greatest admiration. Thank you for all you do!

@gayle1
Gayle, my heart goes out to you!!! I am so sad to hear of this un-freaking-believable ordeal your are living through. The simple act of writing a post is difficult for you, how sad. I am sure you would otherwise have much to share here. I am glad you are able to read what others have to say. I just want you to know that it's only for people like you, and my wife who is a fellow sufferer to you, that I read and post here myself. I send you my most caring thoughts and prayers.

Just curious and no answer necessary if too difficult for you: I see you posted last June asking Lori @lorirenee1 about kratom. Did you ever end up trying that?

Best to you dear, Hank

I have been a member of The Chronic Pain group for over a year and I believe this is my very first post. That's not because I don't have anything to say - I could go on forever but my chronic intractable pain is so intolerable and overwhelming that I literally don't have the energy or time to express my thoughts and feelings since my pain clinic abandoned me almost 3 years ago. The pain is so all-consuming that I can only stay awake for about an hour and then I have to knock myself out. I just wanted to let you know that I read your posts when I can and you have my greatest admiration. Thank you for all you do!

How many miligrams of boron do you take?I have debilitating osteoarthritis everywhere and pain meds hardly make a dent in the pain I am willing to try just about anything for some relief!!

Hello. My name is Monica from Billings, MT. I was hoping that I might find someone from my area that has problems with Medtronics Pain Pump Intrathecal Morphine prescription Billing problems.

From what I see you would get more relief from a shot of Jack Daniels than your “Pain Specialist’s” expertise. That’s a sad opinion any medical provider should want a license Pharmacist to have of them. All I see from your provider is fear and paranoia instead of intelligence and responsibility to do the one thing all medical providers INCLUDING PHARMACISTS vow to do and that is to serve the patient with all the knowledge and wisdom bestowed upon them and DO NO HARM.

Okay, now that I’ve vented for my friend, I’ll speak as a professional... lol

Right now, a great many providers in our Nation are losing sight of their oaths and their jobs as doctors, nurses, pharmacists, etc. Not because most of them don’t care or believe their patients deserve the Pain relief. They don’t even think their patients are addicts or close to becoming one. If you were to ask their honest opinion, most would firmly state that they think that the people under their care require the opioids at higher dosages to facilitate a better quality of life.

What almost all would say on the record? They are abiding by the CDC Opioid Guidelines. They are following the DEA regulations, Medicare constraints, Medicaid and insurance formularies to fall within their parameters of acceptable covered dosages.

Only legislators and folks who are ignorant, fearful, or biased against the use of any opioids for Chronic Pain much less acute pain or anything else at all would assume the result of its use will lead automatically to ADDICTION, SUBSTANCE ABUSE OR “USE” DISORDER, DEPENDENCE, OVERDOSE, SUICIDE, DEATH, or UNCONTROLLABLE EXPLOITATION.

The most important part of Chronic Pain MANAGEMENT WITH OPIOIDS is THE PATIENT-PROVIDER RELATIONSHIP.
Why? It’s simple really. I have a phrase that I live and worked by as a pharmacist especially with my CHRONIC PAIN PATIENTS ON OPIOIDS.

RULES WITHOUT RELATIONSHIPS LEAD TO REBELLION.

This lesson by Josh McDowell is the cornerstone to successful relationships and will keep both parties honest and trustworthy within them.

The DEA has made it is almost impossible for both sides of the Chronic Patient-Specialist Provider Relationship to trust one another by creating rules that are making them enemies or suspicious of the actions of the other.

How?

1. The CDC Opioid Guidelines are not applicable to Pain specialists or ANY specialist at all. They are written for PRIMARY CARE PROVIDERS ONLY, but the DEA is forcing all providers to adhere to them as if they are written for all medical healthcare in the USA - misapplying them.

2. The DEA is targeting the Chronic Pain population because this population is the only categorized, tracked, and verifiably and statistically monitored group of Prescription Opioid-users in America. By decreasing these numbers, the DEA and government can positively affect the War of Drugs and Opioids. Through this targeting, the Chronic Pain Patients are not getting the care they need or the relief they deserve and feel betrayed by the healthcare system of America which is supposed to “DO NO HARM.”

3. In the war in drugs, the government has the ability to control what can be dispensed by limiting the funding on Medicare, state Medicaid programs, and Insurances, the CDC, FDA, and any other programs needed to limit access to Opioids including the WHO.
For example, OxyContin is not paid by insurance, Medicaid, or Medicaid above 40mg Twice a day.
Percocet 10/325mg is only paid for up to four times a day as needed for breakthrough pain.
These dosages cannot be overridden even with prior authorization Petition. The v system put into place for the Elderly, abandoned, disabled, and informed is now betraying its own.

Ceiling limits such as these do not consider such issues as rare diseases with no treatments available, unique case circumstances or cure.

Indeed, many Pain patients have been removed, drastically lowered from their pain medications regardless of OPIOID TAPERING GUIDELINES, and are suffering unwarranted and against CDC, FDA, AMA, and medication recommendations and PROTOCOLS.

These thoughtless and dangerous practices among the CHRONIC PAIN COMMUNITY has led to an increase in unmanaged pain and suffering which has led to a spike in suicide. Whether by overdose or not, this spike by many in this community is seen as a preventable not reflection of the life. And they are angry and becoming bitter. They no longer TRUST the providers who give them “care.”

To help prevent these feelings from developing between you and your provider, these are some Actions you can take as a Chronic Pain Patient before your next appointment to your pain specialist:
1. Keep a daily log of Your Daily Pain Cycles, I.E. Pain levels upon rising, changes throughout the day, medications taken and why, spikes and troughs, flares and why if ac reason, etc weather, pressure, events of the day.
2. Collect these materials and have them at your fingertips if needed, The CDC Chronic Opioid Prescribing Guidelines, The AMA’s Letter to the CDC and FDA Regarding the Chronic Opioid Prescribing Guidelines, The Bill of Rights, The United States Constitution, The Geneva Convention, HIPPA, The Privacy Act of 1972, The RARE Disease Act of 2002, The American Disabilities Act, Older American Act and Elder Justice Act.
There are many more. You can look them up for your special circumstances. Do it. Advocate for yourself! No one will.
3. Speak to your provider in his or her language not yours. Your doctor stand medicaleze. You know peopleze. Talk to them on terms they understand.
They want to know your pain level, give it to them honestly, directly, not what you think or want it to be—not average! If it sucks, tell them an 8! If you’ve been close or at the ER, a 9 or 10. Stop sugar-coating. (The down fall with CRPS is that our pain is beyond the 10 scale so we have to try to adapt it to their 10 scale so they understand. A long talk with the provider is NECESSARY so you are on the same page about what your 8 and 9 is VS theirs.)
They want to know what you pain has been like over the last month—TELL THEM in terms they know. “I wake up on average at an 8 or 9, in tears but after I take meds, and about an hour, the level comes down to around a 6 or 7 so I can dress. Food is out but the Zolfran works until I take the next round and I’m at a solid 7 if I’m lucky and I can eat.”
See what I did there? I’m not complaining. “It’s awful, I cry all the time and the pain is terrible. You have to help me!” They can’t work with that. They need numbers. Data to manipulate and goals to target.
4. Set TWO goals for Pain management. A long term goal: a percentage of pain relief you believe to can realistically live with and obtain quality liberty and livelihood with your pain. This goal will not be reached tomorrow or easily but it Is important to set it. THINK ABOUT THIS HARD AND LONG. This is a changeable goal but should be a goal you place on a calendar and aim for so don’t change it too much unless you discuss why, when, and think about it long and hard.
Your short-term goals are simply to help you get through the hurdles and mountains of the journey. Use the goals frequently and for setbacks due to illness, injury, or family stressors. They are vital to your pain management!

I hope this helps.

Remember that providers are scared of the Opioid ENFORCEMENT AND ENVIRONMENT NOT YOU!

Start talking to each other about your fears or you will hate each other. They are not trying to hurt or abandon you.
They are trying to survive, just like you are.