Pain is heavy and dark, like a rain cloud

(Photo taken 9/23/2014.)

Most of my pain is in my upper body, especially my head, which feels like it weighs 50 pounds instead of the average 10.  I have a tendency to keep my shoulders up around my ears to support my very heavy head, along with having my head drift forward, unwilling to be supported by my scrawny neck.  I don’t have to explain how important posture is to things like breathing, and even having positive thoughts, but I do want to remind everyone that it’s time to…

Go, Cindy, Go!

“We really need to accelerate research into the neuroscience and neurobiology of pain,” said activist and chronic-pain patient Cindy Steinberg during a panel discussion on the topic at the American Association for the Advancement of Science (AAAS) in Washington, DC, on Wednesday.

“It’s pretty awful to live an existence when you’re 24/7 in pain. It’s like being trapped in a prison where you’re being tortured 24/7,” said Steinberg, now national director of policy and advocacy for the US Pain Foundation. In her experience, as she spent five years looking for help, “Pain treatment was at the stage of the doctor being blindfolded and throwing darts and hoping to hit a target.” …

Was at that stage?  You mean, still is, right?

Bilsky, a member of the Dana Alliance for Brain Initiatives, told the story of one 13-year-old whose family doctor told her to “get over it” when she said she was in pain. The family went from doctor to doctor, and when they finally did find one who correctly diagnosed her problem, it was too late—even though there are treatments that could have worked earlier, now this young woman “is homebound 90 percent of the time,” he said. For another patient, Amelia, who was diagnosed faster, treatment did work, and that young woman is active in school and in sports…

Sanctions and the human rights prohibition on torture

A sanction means that benefits are stopped, thus denying claimants the means of survival, a sentence no court in the land would ever dish out and yet benefit claimants are subject to such sanctions without trial or representation…

Is suffering from constant pain considered torture?  Is it considered torture to deny pain patients the options for treatments that work?  Is the DEA torturing pain patients by closing clinics and restricting the supply of certain drugs?  Do insurance companies torture patients by refusing to cover or limiting certain medications?  Does the healthcare system torture people who can’t afford it and/or go bankrupt because of it?

Do the state and federal governments torture their citizens when they refuse to legalize medical cannabis?  Is being put in jail for marijuana considered torture?  Is having cancer but not having access to cannabis considered torture?

Is it considered torture to put those who suffer from addiction in jail?

Is the drug war a torture program?

Lawsuit: Woman Spends 8 Days In Psych Ward For Saying Obama Follows Her On Twitter

The nightmare for Jamaican-born Kam Brock, an aspiring pop singer, began on 12 September last year (2014) when NYPD officers in Harlem confiscated her BMW 325Ci, suspecting her to be under the influence of marijuana. Despite finding no drugs in the car it was confiscated. The next day Ms Brock went to retrieve her car from a local police station and says she was slapped in handcuffs, put in an ambulance and forcibly-injected with sedatives…


Although I don’t suffer from depression, I find it very interesting how similar the feelings and symptoms are between chronic pain and depression.  And I can so empathize with not being able to trust doctors.

This is one reason I am not a great proponent of cognitive therapies. The techniques are helpful sometimes, and I believe it’s good for depression-prone people to learn then. But I am fairly certain that severe depression of the kind I experience is not a thought disorder. It’s not like I woke up one day and decided to see the world in a negative light…

Chronic pain is not a thought disorder either.  Being unable to manage constant pain is not a sign of weakness or a need for talk therapy, although many pain patients find counseling beneficial.  And it’s not like chronic pain patients wake up one day and decide they’re in pain.

So when mental health professionals focus on a person’s ability to change their thought processes, when my therapist has said, “But think of all you HAVE achieved!” it DOESN’T HELP. 

And when doctors say things like, well, it could be worse — and that’s supposed to make us feel better?  Am I supposed to feel better than I’m not in a wheelchair… yet?

The Weigh Down: The Role of Music in My Depression

This website, and to a much deeper extent, my sanity, exist because of the role music plays in my ongoing struggle with depression. It’s not an antidote, but it soothes the sting of hopelessness that washes over me. It allows me for the briefest of moments to feel as if I’m not alone in this world or this battle…

PTSD and Loneliness – Is it by Choice?

But perhaps the worst kind of loneliness that comes with PTSD, is the loneliness you feel when you are surrounded by the people you love and care about. They are there – but you no longer connect with them. You become a stranger to them and that once strong connection you had over time disappears. Feeling all alone in a room full of people you love is far worse then feeling alone in a room with no one there…

Non-narcotic treatment option in Phase 3 trials

“We are pleased with the FDA’s decision as chronic pain remains an area of significant unmet medical need and we believe tanezumab has potential to offer a new, non-narcotic option,” said Steve Romano, MD, senior vice president and head of Global Medicines Development at Pfizer’s Global Innovative Pharmaceuticals Business…

Antagonism of Nerve Growth Factor-TrkA Signaling and the Relief of Pain (2011)

Understanding whether there are any unexpected adverse events as well as how humans may change their behavior and use of the injured/degenerating tissue following significant pain relief without sedation will be required to fully appreciate the patient populations that may benefit from these therapies targeting NGF…

Where more conservative methods have failed, opioids, appropriately dosed and monitored, are associated with a lower incidence of organ toxicity and fewer potentially life-threatening complications than non-steroidal anti-inflammatory drugs…

Psychiatry related information on NGFR

Depressive disorder

Attempted suicide


Not found in Parkinson disease

Why exercise magnifies exhaustion for CSF/ME patients

Researchers focused on the role of muscle metabolites, including lactic acid and adenosine triphosphate, or ATP, in the disease. The study has demonstrated for the first time that these substances, released when a person exercises his or her muscles, seem to activate these neural pathways. Also, UF Health researchers have shown that these pathways seem to be much more sensitive in patients with chronic fatigue syndrome than in patients without the disease, something that hasn’t been studied before…

Arachnoiditis – when the cure/treatment is worse than the disease

The injection was given and within hours my pain became elevated. I called the doctor and was told this is normal and not to be concerned…

I just want to say that this is not normal.  After an injection like this, the anesthetics used during the procedure last for hours, sometimes days.  Most patients report an initial lessening of pain, but no matter how long it lasts, it is short-term.

Under comments:

Beth koyl 6 hours ago

So sorry to read of your story. Thank you for sharing and being a advocate. I have had too many injections,and they want to do more. I refuse. But then if you refuse, the Drs take that as refusing care,then don’t want to be your Dr anymore. It’s a vicious cycle. Luckily, I do not have the problems that you do. I now have a spinal cord stimulator, which, by the way, doesn’t help. Oh well….

Terri Lewis 16 hours ago

Thank you Tommy for your advocacy.