A Country of Drug Seekers (???)

Posted on May 23, 2017 

By Steve Ariens, PharmD., (LINK TO ORIGINAL ARTICLE HERE!)pain is inevitable

(Editor’s Note—For the past several years, retired pharmacist Steve Ariens has shared his thoughts about chronic pain from the perspective of both a pharmacist and a husband whose wife suffers from chronic pain. I received an email from him this past weekend which started an interesting discussion about whether chronic pain patients are “giving up”. Both of us sense a frustration. I asked for permission to republish this column he originally posted on his own site, pharmaciststeve.com. Please read it and then share your opinion on the “state of chronic pain” these days.)

There are about 4.5 BILLION prescriptions filled in the USA every year – in community pharmacies and via mail order pharmacies. –  We have some 320 million residents—doing the math that means that each person would have 14 prescriptions filled each year.

Most of the prescriptions are filled by people who are “seeking  to improve their quality of life”.

This time of year a lot of those “drug seekers” are known as ALLERGY SUFFERs–they seek out antihistamines, cortisone nasal sprays and other substances used to control their allergy symptoms and improve their quality of life.

No matter what disease state or condition/syndrome a person is dealing with.. all too many will seek out some medication(s) to help to control the undesirable symptoms from the disease.. basically.. the person seeks out to improve his or her quality of life.

Some groups try to draw a line between themselves as being chronic pain patients and those who abuse opiates.

If you take a step backwards and try to look at those who take/use opiates and controlled substances.. and consider those that take them legally and those who take them illegally– because our society will not allow them to obtain them legally you ask” Are they all that different ?

Both are typically suffering from depression, anxiety and physical and mental “pain”. Both are trying to “improve” their quality of life… just what their own opinion/definition of “improve” may be can be quite different.

Those who are suffering from the mental health issues of addictive personalities.. they have demons in their head and/or monkeys on their back. They are just “seeking” to improve their lives by attempting to silence those demons and monkeys. Their “high” is getting some solitude from those things causing them mental pain.

Those that suffer from chronic pain are also “seeking” their own particular “high”, but their high is to calm the pain that torments them and keeps them from participating in a “normal family life”.

IMO, there are those in the chronic pain community that want to point fingers at those who our society has labeled as “addicts” and continue to point out “that is not us/me”… it is “them”..

People with mental health issues have always been “looked down upon” ..  just told to “suck it up and get over it”… our health insurance system has normally had poor coverage for seeing mental health professionals.

Is this part of the puritanical thread in our societal fabric that is still part of the “witch hunts” from the late 17th century in our country ?

Are those in the chronic pain community doing themselves any favors by agreeing with the DEA that those with mental health addictive issues are “bad people” and CRIMINALS?

Recently our previous Surgeon General declared that addiction is a mental health issue and not a moral failing http://www.huffingtonpost.com/entry/vivek-murthy-report-on-drugs-and-alcohol_us_582dce19e4b099512f812e9c

Does it make any sense that two different major Federal agencies and members of the Presidential Cabinet (DOJ & Surgeon General) are on opposite sides of the same coin… in dealing with people that are suffering from chronic conditions that opiates and controlled substance can help people deal with their health issues?

(Thoughts on this? And the state of chronic pain these days?—Please share in National Pain Report’s commentary section HERE: (NatPainReportCOMMENTS)

 

My Reply:

Hi Pharmacist Steve!

I’ve often wondered about the term “Self Medicating”. It’s encouraged if you have an allergy and let’s say, use benedryl and calomine. It’s fine if you take an aspirin or tylenol for a headache. It’s just dandy if you take an antihistamine for hay fever or alka seltzer for a stomach ache. Got constipation? Sure, take a laxative! No problem!
But live with chronic pain and want relief? Want to self medicate for that? OH NO, Now you’re labeled an addict!

Most of us chronic pain patients aren’t looking for a high. Like you said Steve, we’re just looking for quality of life, same as every “self-medicating” person is doing for their “acceptable” conditions. Studies say actual chronic pain patients don’t become mentally addicted…And so you gotta ask yourself..does a person with a bad cough get mentally addicted to their cough medicine they have to take to calm the cough?

In all honesty, I’m tired of the stigma attached to opiates and really tired of one set of people (who usually have never experienced chronic pain & have no medical training whatsoever) deciding for the rest of us what is good for us. We are individuals, should be reviewed individually and we should be allowed to live our lives the best way we can!

Sincerely, JJ (Lupus, TN+)

How Many Specialists Do YOU Juggle?

My LUPUS Presentation! Sign up at http://www.Brightbod.com or go straight HERE at 4pm PST Wed, May 24th! Link: https://zoom.us/j/8260195856

Lupus Event May 2 ONLINE


#LUPUS Event Tomorrow!  Webinar on Lupus & Your Brain with Q & A!  

We all get Lupus Fog..but what about these other brain issues lupus can cause?

Do you want to know if you might have Neuropsychiatric lupus?  (NPSLE)

What is Peripheral System involvement in SLE?

And the biggie question- WTH is Lupus Cerebritis & Brain Vasculitis?

PLEASE TUNE IN LIVE 

This is Patient to Patient!   #Brightbod 

Tomorrow 4pm Pacific Time

Here–> https://zoom.us/j/8260195856

You will be prompted to download ZOOM

Join Me!!!!!

Posted in Uncategorized.

Muscle Pain, Stiff Fingers & Gastro Issues, Oh My…. WHICH Autoimmune Disease Could It Be?!!!

autoimmune-picture-treeCould This Be An Autoimmune Disease?

Someone asked the following QUESTION:

My entire life has been on pause for 3.5 years, I went from being the most active person I know to someone who even getting dressed or taking a shower is a big painful struggle. I’ve seen dozens of doctors and spent thousands and thousands of dollars and hundreds of hours researching, and so far the only thing I get is all blood tests being normal and I’m told it’s no big deal. I would so so so so grateful if you can help in any way – I literally do not have a life or a future right now and spend about half my awake time in too much pain to do anything.

Symptom summary:

– muscle pain in left flank almost 24/7

– pain in left SI joint almost 24/7

– pain in lower left ab

– gastro issues (diarrhea, bloated 24/7, gasy ALL the time, stomach aches daily)

– distended areas in stomach

– right knee and right shoulder almost unuseable

– all joints popping constantly from any movement

– very cold right hand fingers and stiff fingers

– tremours/shaking in all muscles when not in rest

– different pains in different body parts daily, seemingly random

My ANSWER

I’m not a medical pro- just someone with systemic lupus & reactive arthritis.  But here’s my best guesses & suggestions:

Have you had an MRI or cat scan during a flare-up of your si joint?  I’d get that done during a flare and see if it shows inflammation.  Your gastro symptoms and si joint (sacroillitis) could be related to reactive arthritis or ankylosing spondylitis (and yes, it can be chronic) (& painful).  You can get checked specifically for the HLA-B27 gene by a rheumatologist who knows what to look for.  Here’s some info:  How Is Ankylosing Spondylitis Diagnosed?

A diagnosis of ankylosing spondylitis is based largely on the findings of a medical history and physical exam. Radiologic tests and lab tests may be used to help confirm a diagnosis, but both have some limitations.

Medical History

The medical history involves answering questions, such as the following:

How long have you had pain?

Where specifically is the pain in your back or neck? Are other joints affected?

Is back pain better with exercise and worse after inactivity, such as when you first get up in the morning?

Do you have other problems, such as eye problems or fatigue?

Does anyone in your family have back problems or arthritis?

Have you recently suffered from a gastrointestinal illness?

Do you have any skin rashes such as psoriasis?

From your answers to these questions, your doctor can begin to get an idea of the diagnosis.

Physical Exam

During the physical exam, the doctor will look for signs and symptoms that are consistent with ankylosing spondylitis. These include pain along the spine and/or in the pelvis, sacroiliac joints, heels, and chest. Your doctor may ask you to move and bend in different directions to check the flexibility of your spine and to breathe deeply to check for any problems with chest expansion, which could be caused by inflammation in the joints where the ribs attach to the spine.

Radiologic Tests

X rays and magnetic resonance imaging (MRI) may be used in making or confirming a diagnosis of ankylosing spondylitis, but these tests have limitations. X rays may show changes in the spine and sacroiliac joints that indicate ankylosing spondylitis; however, it may take years of inflammation to cause damage that is visible on x rays. MRI may allow for earlier diagnosis, because it can show damage to soft tissues and bone before it can be seen on an x ray. Both tests may also be used to monitor the progression of ankylosing spondylitis.

Lab Tests

The main blood test for ankylosing spondylitis is one to check for the HLA-B27 gene, which is present in the majority of Caucasians with ankylosing spondylitis. However, this test also has limitations. The gene is found in much lower percentages of African Americans with ankylosing spondylitis, and in ankylosing spondylitis patients from some Mediterranean countries. Also, the gene is found in many people who do not have ankylosing spondylitis, and will never get it. Still, when the gene is found in people who have symptoms of ankylosing spondylitis and/or x-ray evidence of ankylosing spondylitis, this finding helps support the ankylosing spondylitis diagnosis.

My other guess would be Crohn’s, (or IBD) maybe.  But the joint involvement tells me it’s more systemic than Crohns or IBD.  Do you have any eye issues?  Recurring uveitis is a biggie with AS (I hate it and get it all the time). It’s inflammation in the iris.  You don’t have to have it tho to have AS (ankylosing spondylitis)

As far as Rheumatoid arthritis, I’m sure you’ve had an RA Factor and an anti-CCP antibody test for dx.  I’m assuming you’ve seen rheumatologists..

Your cold hands sound like Raynaud’s Phenomenon, common with mixed connective tissue diseases.

Also as far as mixed connective tissue disease, they often overlap, and the best test to have is a Direct ANA Panel which will separate the antibodies and give your rheumie info on where your disease is pointing.  Most people get just the one ANA test-a TITER test, but I’d like to suggest you have the PANEL done, as it’s much more specific and you can be negative on the titer but positive on the panel.  Also remember these proteins of autoimmune disease don’t always show up right away in your blood.  Sometimes it takes testing over and over to hit it at the right time.

You should also have a CRP (C-Reactive Protein) test to look for inflammation in your blood and an ESR (sedimentary rate) also to check for inflammation.  Testing your C3 and C4 complements in your blood is also helpful to show if you have something autoimmune going on.

And DON’T GIVE UP!  Lots of us wait long long times for a dx.  Hang in there.  All doctors

autoimmunemantra

Lupus & Urinalysis : What do the results mean?

I get asked about this alot.  Lupus patients are prone to inflammation and infection.   Many of us have kidney issues, bladder infections, uti’s, cystitis & other urinary tract issues.  
Our rheumies check our urine every 3 months looking for proteins or red or white blood cells that can cause inflammation or indicate infection.  So what does it mean if you have an elevation in proteins, blood cells or leukocyte esterase in your urine?

Could be anything from a simple UTI to kidney lupus  involvement.  Here’s the scoop from Johns Hopkins:

A complete urinalysis evaluates several different aspects of your urine through physical, chemical, and microscopic examination. In lupus treatment, a urinalysis is often used to monitor protein leakage and identify and assess urinary tract infections (UTIs). Most people with kidney lupus (lupus nephritis) will have an abnormal urinalysis. 

Protein, urine casts (especially red blood cell casts), red blood cells, or white blood cells in the urine can indicate serious kidney involvement; leukocyte esterase or indicate a bladder infection.

Chemical Analysis

The chemical examination measures several features of the urine. Most laboratories use chemical test strips (“dipsticks”) that change colors when dipped into the urine. Either the laboratory technician or an automated instrument will then read the reaction color for each test pad to determine the result for each test. The use of automated instruments helps to eliminate discrepancies that arise with human interpretation.

  • pH: Usually, the pH of urine is between 4.5 and 8.0. The kidneys regulate this acid-base chemistry by reabsorbing sodium and secreting hydrogen and ammonium ions. When the body retains excess sodium or acid, urine becomes more acidic (i.e., the pH is lower). Highly acidic urine can occur with uncontrolled diabetes, diarrhea, starvation, dehydration, and certain respiratory diseases. When your body retains excess base, your urine becomes more basic, or “alkaline” (i.e., the pH is higher). This can occur with urinary tract infections and certain kidney and lung conditions. Certain foods can also alter the pH of your urine. For example, eating excessive protein or cranberries can make your urine more acidic, whereas eating a low-carbohydrate or vegetarian diet can make your urine more basic. Sometimes people are asked by their doctors to regulate the pH of their urine through diet in order to manage certain diseases or medications. For example, kidney stones can occur if urine pH is too high or too low.
  • Protein: Excessive protein in the urine (proteinuria) is a sign of kidney involvement in lupus. Usually, your kidneys prevent protein from passing from your blood into your urine: loops of capillaries (glomeruli) that filter blood allow small particles to pass into the urine while retaining larger particles, such as protein, and kidney tubules reabsorb the smaller proteins that were able to escape. Large amounts of protein in the urine suggest that these glomeruli and tubules are inflamed or damaged in some way.
  • If there is a large amount of protein in the urine, your doctor may request that you give a 24-hour urine sample or obtain a random protein to creatinine ratio. These two tests are used to monitor lupus affecting the kidneys (lupus nephritis).
  • Glucose: Your urine should not contain glucose. If it does, your doctor will order further bloodwork and urine tests to determine the cause. Glucose in the urine is called glucosuria; it can occur in people with diabetes that is not properly regulated with insulin, in people with kidney problems that affect the absorption of glucose, in pregnant women, and in people with liver abnormalities or hormonal disorders.
  • Ketones: Ketones in the urine (ketonuria) indicate that your body is metabolizing its fat reserves instead of carbohydrates to obtain energy. This can occur in people on low-carbohydrate diets, people who are malnourished, or people who have a problem properly metabolizing carbohydrates (e.g., people with diabetes).  It can also occur with excessive exercise, loss of carbohydrates due to vomiting, or exposure to cold. In people with diabetes, ketonuria may indicate insufficient management with insulin.
  • Blood: The chemical examination of urine also measures the amount of red blood cells in the urine sample. The presence of red blood cells in the urine is known as hematuria, and the presence of hemoglobin (from red blood cells) is known as hemoglobinuria. Usually people have very small amounts of red blood cells in their urine, but even a minute increase can indicate a problem, such as a disease of the kidney or urinary tract, trauma, medications, smoking, or intense exercise (e.g., running a marathon). When the chemical test for blood in the urine is negative but the microscopic assessment shows the presence of red blood cells, the laboratory will usually check for the presence of vitamin C, which can interfere with test results. [It is important to also note that contamination of the urine sample with menstrual blood or hemorrhoids cannot be distinguished from the presence of red blood cells in the sample. Therefore, it is very important to tell your physician if you are menstruating or are experiencing any other condition that could contaminate your urine sample. It is also very important that you speak to your lab technician about proper aseptic technique when giving a urine sample.]
  • Leukocyte Esterase: Leukocyte esterase is an enzyme present in your white blood cells. Therefore, the presence of this substance in the urine indicates the presence of white blood cells (leukocyturia). White blood cells in the urine may indicate inflammation of the kidneys or urinary tract due to bacterial infection. It is important to note, however, that contamination of the urine can also cause the presence of white blood cells in the urine, so remember to practice proper aseptic technique when giving the sample.
  • Nitrite: Bacteria can convert nitrate to nitrite; therefore, the presence of nitrite in the urine usually indicates a bacterial infection (i.e., a urinary tract infection). However, not all bacteria can convert nitrate to nitrite, so it is possible to have a urinary tract infection while also having a negative nitrite test.
  • Bilirubin: Bilirubin is made by the liver from old red blood cells; it is then processed by the intestine and excreted from the body. Therefore, healthy individuals do not have bilirubin in their urine. The presence of bilirubin in the urine indicates that the liver is allowing the substance to leak back into the blood. This can be an early indication of liver disease, even when other symptoms, such as jaundice, are not present.

Microscopic Analysis

The microscopic examination uses a microscope to identify and count cells, crystals, bacteria, mucous, and other substances that may be present in the urine. The amount of a substance present is reported one of two ways: as a count with the microscope strength used to view the substance [“per low power field” (LPF) or “per high power field” (HPF)], or as an approximate amount (“rare,” “few,” “moderate,” or “many”).

  • Red Blood Cells: The microscopic examination looks at how many red blood cells are present per HPF. As discussed above, the presence of red blood cells in the urine can indicate a problem, such as a disease of the kidney or urinary tract, trauma, medications, smoking, or intense exercise (e.g., running a marathon). However, contamination of the urine sample with menstrual blood or hemorrhoids cannot be distinguished from the presence of red blood cells in the sample. Therefore, it is very important to tell your physician if you are menstruating or are experiencing any other condition that could contamination your urine sample. It is also very important that you speak to your lab technician about proper aseptic technique when giving a urine sample.
  • White Blood Cells: A high number of white blood cells in the urine indicates inflammation of the kidneys or urinary tract. Like the test for red blood cells, this test can be misread if the sample is contaminated; in this instance, contamination can occur from vaginal secretions, which are high in white blood cells. Therefore it is important that you speak to your lab technician about proper aseptic technique before giving a urine sample.
  • Epithelial Cells: The tissue that lines the surfaces of cavities and structures in your body is called epithelial tissue. In healthy individuals, epithelial cells from the bladder and external urethra are normally present in the urine in small amounts.  However, the amount of epithelial cells in the urine increases when someone has a urinary tract infection or some other cause of inflammation. Your doctor will evaluate the source of the problem by evaluating the type of epithelial cells that are present. For example, the presence of renal tubular epithelial cells (from your kidneys) may indicate kidney involvement. The presence of squamous epithelial cells may indicate contamination of the urine specimen.
  • Casts: Casts are formed in the tubules of they kidney when the tubules secrete a protein called Tamm-Horsfall protein. The origin of the casts causes them to take on a tubular or hotdog-like shape. These casts are known as hyaline casts and can be present in normal adults on the order of 0-5 per LPF. Strenuous exercise can cause more hyaline casts to be present.  However, casts made from red or white blood cells indicate problems in the kidney.  Red blood cells that stick together and form red blood cell casts usually indicate problems with the glomeruli, tiny ball-shaped structures in your kidneys that help filter blood and prevent the loss of valuable substances, such as blood cells and proteins. White blood cells casts indicate inflammation in the kidney. Cellular casts that remain in the nephron of your kidney for a long time before they are flushed out become granular casts and eventually waxy casts.
  • Bacteria: Bacteria in your urine can suggest infection, especially if you have other suggestive symptoms. If your doctor suspects that you may have a urinary tract infection, she/he will most likely order a culture or count of the bacteria. However, bacteria on the skin can also contaminate the urine sample and skew the results, so it is very important that you understand proper aseptic technique when giving a urine sample.
  • Crystals: Crystals can be present in the urine of healthy individuals; these crystals form when the pH, solute concentration, and temperature of your urine are within a specific range. If these crystals are made of substances that are supposed to be in urine, such as calcium oxalate or phosphate, then they are considered to be normal. Crystals made of substances that are not usually present in urine, such as cystine, tyrosine, or leucine (amino acids), are uncommon and usually indicate liver disease or some other abnormal process.

via:http://www.hopkinslupus.org/lupus-tests/screening-laboratory-tests/urinalysis/

Itchin’ Ain’t Bitchin’

LUPUS & Urticarial Vasculitis     julies-rashes

Incessant relentless ITCHING

UV that causes HIVES & wheals

& Skin that burns and bleeds

Add to our Lupus & Chronic Needs-

Urticarial Vasculitis

Urticarial vasculitis is a form of vasculitis that affects the skin, causing wheals or hives and/or red patches due to swelling of the small blood vessels.

What causes Urticarial Vasculitis?

The cause of most cases of urticarial vasculitis is unknown. It may be associated with a number of diseases, especially systemic lupus erythematosus, rheumatoid arthritis and Sjögren’s syndrome. Some cancers, including leukemias, colon and pancreatic, and infections like Hepatitis B and C can cause this form of vasculitis. So can some drugs, including antibiotics, ACE inhibitors used for treating high blood pressure, and certain diuretics.

How common is it?

Urticarial vasculitis is uncommon. There are no well researched estimates of how frequent it is.

Symptoms

The most common symptoms are hives that cause itching, pain and a burning feeling. Skin patches often are red-rimmed with white centers, and unlike common hives may have petechia, or bleeding under the skin. The patches can be present for days and result in skin discoloration as they heal. Some patients may also have fevers, joint and abdominal pain, shortness of breath and swollen lymph glands. Sometimes urticarial vasculitis even causes injury to vital organs including the gut, lungs and kidneys.

Diagnosis

Diagnosis is based on characteristic patches in the skin. Sometimes a biopsy is ordered to show inflammation in the skin and damage of small blood vessels with white blood cells. Since it’s often associated with a number of different diseases, it’s often necessary to do other tests and exams to rule out underlying conditions like lupus erythematosus or cancer. Tests of vital organs may also be indicated, especially when the blood levels of complement are low.

Treatment

Treatment depends on the extent of symptoms and organ involvement. When levels of complement are normal and there is no internal organ involvement or underlying disease, the symptoms may improve on their own or with minimal treatment. In this case, antihistamines or nonsteroidal drugs such as ibuprofen or naproxen may be helpful. For more severe cases, other drugs which affect the immune system may be needed, such as corticosteroids (prednisone, others), hydroxychloroquine, colchicine, dapsone; and chemotherapies like azathioprine or cyclophosphamide. Treatment may be intermittent, although it is not uncommon for patients to need treatment for several years.

What are the complications?

The most common serious complications are skin pigmentation and, occasionally, skin ulcers, plus damage to organs such as the lungs, eyes and kidneys.

Prognosis

The natural history of urticarial vasculitis depends in part upon the blood complement levels. In cases where these are normal, the prognosis is generally good. In cases where the complements are low, the disease may be more severe. When urticarial vasculitis is related to a disease such as lupus or cancer, its prognosis is often governed by the prognosis of the underlying disease.


It Happens Like THIS:


What is a Hypersensitivity Reaction?

In our case, when we are exposed to Ultraviolet – Antibodies & Immune Complexes Are Triggered & Cause a Hypersensitivity Type 3 Reaction:


My Personal Experience With Urticarial Vasculitis

Those rashes up there are all mine.  They all ITCHED horribly, a deep DEEP intractable painful burning type itch that could not be relieved.  Like a friend said, like poison ivy times 100.  On several occasions my arm tingled and I had some muscle weakness.  I get mine with hard nodules under my skin- you can feel them, hard lumps right on the itch that hurt when you touch or press them.

Mine are always activated by UV exposure.  I live in the desert where the summer months are killer-and I spend most of my time indoors to avoid lupus flare ups.  But it always gets me!  I have double blackout drapes on my windows and that makes me pretty safe indoors-but noone can stay indoors ALL the time!

I almost always flare with the urticaria combined with uveitis (inflammation in the iris of eye), nose sores & mouth sjulieeyesores and my malar rash becomes prominent.  Sometimes I get low grade fevers and fatigue with the reaction.

My rashes respond pretty well to betamethazone steroid cream and usually 40mg of prednisone for a few days with an immediate taper down to 0.  I take plaquenil and cellcept to control my lupus on a daily basis and it works well for me.  I’m extremely lucky that my rashes usually start healing after 24 to 48 hours.  Sometimes I end up with discolored skin (see above photo on left).  Sometimes I end up with skin so hard on my face-it looks like I’m getting a chemical peel!  The skin underneath is usually fine.

malarrash - Copy

Malar Rash

I’ve had rash reactions that don’t stop at lupus or urticaria- I’ve had autoimmune pemphigus rashes like this one on the back of my neck- and I get malar rashes like most lupus patients do!  But I always recover!  😀

If you have any questions- feel free to ask!  I’m happy to help!

Best to You!  JJ

june2013rash


My Pemphigoid Rash

My Pemphigoid Rash

More Urticaria Vasculitis Info-explained by Dr Donald Thomas, author of “The Lupus Encyclopedia “.  You can follow him on twitter at @lupuscyclopedia 

Urticarial vasculitis is a less common form of vasculitis seen in people who have lupus. The areas of vasculitis look similar to hives (the medical term for hives is “urticaria”).

The skin lesions of urticarial vasculitis are typically slightly raised areas of skin that are tender to the touch. When they heal, they often leave pigment changes on the skin. Usually a skin biopsy is required to diagnose urticarial vasculitis accurately.

Doctors usually check SLE patients who develop vasculitis for substances in the blood called cryoglobulins. “Cryo-”comes from the Greek word for “cold,”while “globulins”refer to antibodies. These particular antibodies precipitate and clump together with cooler temperatures.

 “Precipitation”is a scientific term meaning that a substance in a liquid solidifies; for example, if you warm up a pan of water and pour in a bunch of salt, the salt dissolves in the water. When the water then cools down in the refrigerator, salt begins precipitating out of the water as salt crystals on the edges of the pan. What happens in people who have cryoglobulinemia (cryoglobulins in their blood) is that the cryoglobulins can clump together and precipitate in parts of the body that are cooler than other parts.

This may occur in the cooler skin of the legs, causing bruised appearing areas and inflammation of the blood vessels (vasculitis). Doctors treat this condition with high doses of steroids along with immunosuppressants. Sometimes doctors have to use a special type of treatment called plasmapheresis, which removes the cryoglobulins from the blood. 

Sometimes vasculitis of the skin can occur along with vasculitis in other organs of the body such as the kidneys.

Therefore, if you develop the symptoms of vasculitis, it is important to see your doctor immediately to make sure this is not the case.

Most of the time, cutaneous vasculitis occurs by itself, without involvement of internal organs, but it is important that your doctor checks you thoroughly, especially the first time it happens.

INCUMI: Great Chronic Pain Doc/Patient BlogPost

Pain-is-inevitable-suffering-is-optional

Stigma: Opioids, Addiction & Chronic Pain via @NatPainReport

Editor’s Note: This is the first in a two part series on the stigma of chronic pain. This focuses on the chronic pain patient. The second installment features the stigma of being a pain physician. We invite your comments.

These are challenging days. Persons who suffer with chronic and intractable pain are facing widespread public misunderstanding of the difference between physical dependence on a drug to treat addiction and a chronic illness.

Physicians and policy wonks are just as confused. Prescriptions are reducing but deaths are increasing. Despite the fact that addiction in persons with chronic pain is consistently reported at less than 4% of the population of patients, many fear that anyone taking opioid medications is at risk for addiction, leading to behaviors associated with overdose, suicide, or other negative outcomes. Physicians who prescribe for complex patients are being stigmatized by their peers as ‘aberrant prescribers.’

The selective misapplication of scientific reporting is leading to the revision of treatment protocols using addiction guidelines. Some consumers successfully rely on protocols that use a combination of nonpharmacological methods or medical marijuana where available. It should go without saying that most consumers who depend on controlled substances for palliation are restricted by choices related to payor sources, or have failed many prior treatment protocols, settling on prescribed opioids used alone or in combination with other adjuvants.  Consumers who find themselves facing removal of successful treatment protocols without alternatives, legitimately fear that the public cure for addiction will force out individual consequences and treatment more harmful than the use of controlled substances.

The language we use frames what the public thinks about substance use and recovery. It affects how individuals think about themselves and their own ability to effect change or assert control over treatment outcomes. It is important to clearly understand the terms used to describe this problem.

Addiction is a neurobiological brain disease that has genetic, psychosocial, and environmental factors.  It is characterized by one or more of the following behaviors:

  • Poor control over drug use
  • Compulsive drug use
  • Continued use of a drug despite physical, mental and/or social harm
  • A craving for the drug

Chronic pain is pain that results from a discrete event, that lasts for more than 90 days without resolution. It ranges from mild to severe and is in many cases, associated with a progressive underlying disease process. Intractable pain is distinguished by measured changes to one or multiple organ systems that occur as the result of prolonged, undertreated chronic pain.

Physical dependence is the body’s adaptation to a particular drug. In other words, the individual’s body gets used to receiving regular doses of a certain medication provided for a specific and legitimate purpose. When the medication is abruptly stopped or the dosage is reduced too quickly, the person will experience withdrawal symptoms while the purpose for which the drug is prescribed is still present.  A number of other drugs not associated with opioids or addiction can also result in physical dependence (i.e., antidepressants, beta blockers, corticosteroids, etc.) and can trigger unpleasant withdrawal symptoms when stopped abruptly.

Tolerance is a condition that occurs when the body adapts or gets used to a particular medication, lessening its effectiveness. When that happens, it is necessary to either increase the dosage, switch to another type of medication in order to maintain pain relief, or employ an adjunctive therapy.

Pseudoaddiction is a term used to describe patient behaviors that may occur when their pain is not being treated adequately. Patients who are desperate for pain relief may watch the clock until time for their next medication dose and do other things that would normally be considered “drug seeking” behaviors, such as taking medications not prescribed to them, taking illegal drugs, or using deception to obtain medications. The difference between pseudoaddiction and true addiction is that the behaviors stop when the patient’s pain is effectively treated.

Stigma refers to the negative attitudes expressed by members of the community, including healthcare professionals, that result in discrimination and devaluation of the individual solely because of their characteristics. Appropriate use of language in is important. Inappropriate use of language leads our thinking and expectations and can negatively impact the way society perceives both addiction and chronic pain.

Negative labels impose the mark of deviance that deprives people of individual qualities and identity.  Stigmatizing labels cause us to explain away illness symptoms through beliefs that have nothing to do with the facts of the person or the causes for their chronic illness or addiction.

Assigning ‘marks’ and ‘red flags,’ we employ labels to deny the real conditions of daily life for persons living with chronic pain. Professionals are trained to believe that ‘catastrophizing’ is an aberrant behavior associated with drug seeking, rather than understanding that it is a plea to be taken seriously as a person who is under treated for pain. Pain attributed to ‘somatoform disorder’ becomes the ‘mark’ of psychological illness rather than an indication that the physician has failed to pursue a diagnosis because they have misinterpreted your symptoms by exercising their own faulty beliefs. A person who drives more than 50 miles to fill a prescription may not have access to a provider who will take their insurance, may lack access to a pharmacy that will stock their medications or absent insurance, accept cash.

Stigma is harmful, distressing, and marginalizing to the individuals, groups, and populations who bear the burden of negative labels. It also results in misdiagnosis, wrong diagnosis and under treatment. It may lead the provider to select the wrong treatment protocols resulting in treatment failure or patient harm. It may result in the consumer losing any confidence in the possibility of establishing a healthy working relationship with providers.

At all levels of this discussion, we must employ safeguards to protect patients from the inappropriate use of stigmatizing language – through our guidelines, our interpersonal interactions, and our public language.  Now more than ever, we must resist the use of the ‘mark’ to dictate how we deliver competent healthcare.

Editor’s Note: Part Two will feature Dr. David Nagel.

 

Part Two:The Stigmatized Pain Doc

Editor’s Note: This is the second of a two part series on the stigma of chronic pain. This installment features the stigma of being a pain physician. The first installment, written by Terri Lewis, PhD look at the stigma from the patient point of view. We invite your comments.

Stigmatization is alive and well in the world of chronic pain.  In fact, the motto of the Pain Action Alliance to Implement a National Strategy (PAINS) is to “de-stigmatize the stigmatized.  The reasons for stigmatizing the person with chronic pain are way too simple.  They have a problem which defies all treatments and reasonable “objective” explanations.  In so-doing, they are a thorn in the side of medical theory.  Rather than accept that the square peg the patient presents does not fit into the round hole of our theory and re-working our theories, we blame the patient for their problem and abandon them.  If you have a problem you can’t handle, what better way than to be rid of it than to ignore it or sweep it under the rug.

David_J_Nagel_MD_2

Unfortunately, the problem is still there, festering.

Those who suffer from pain are fully aware of what I just said.  That is not what I was asked to write about, though.  I was asked to write about the stigmatized pain management specialist, something that is becoming an out-sourced, dying breed.  In thinking about this, I am reminded of an old joke I heard in college:

Q:  How many pre-meds does it take to screw in a lightbulb?

A:  Two.  One to screw it in and the other to kick the chair out from under the first pre-med’s feet.

For our discussion, I would replace pre-med with “people” and the answer with 19;  that being one becoming a pain management doctor and the other 18 various entities in our society which are more than willing to take him or her down.

Very early in my physical medicine and rehabilitation training, in 1986, I was confronted with a patient with chronic back pain.  He’d been surgically mutilated 5x, and the surgeon responsible for the 5th “wanted my expertise.”  In reality he just wanted to get rid of the medical “hot potato,” one way too hot for him to want to hold.  When I first met the patient, the surgeon welcomed me with open arms and thanked me for my service to humanity and all sorts of other things.  The patient was in absolute misery.  What the surgeon neglected to tell me was that when they placed the pedicle screw, they put it right through the nerve root.  I found this out later from someone who preferred to remain anonymous.  It was not the patient that was “screwed up.”  In 1986 it was definitely not cool to prescribe opiates.  My mentors told me not to do it.  However, Kathy Foley and Russell Portenoy were just starting to challenge that paradigm, first for end of life care, then for chronic pain.  I read their article published in 1985.  I had nothing else to offer this man.  His spine was a mess.  His nerve was destroyed.  So I defied the sages and started him on opiates.

Two things happened.  First, the patient got better functionally.  Second, the surgeon and his entourage returned to chastise me for addicting him to pain medication.  I recall informing them that they had turned the patient’s care over to me.  Obviously they had not done such a great job, so I thought other directions were in order.

Nothing in life is ever that simple.  I saw this man as someone who’s life was in jeopardy and cost/benefit assessment demanded extraordinary steps.  So I did something which I believed to be extraordinary.  Short term success is not always maintained in the long term.  As Dr. Portenoy has said, there is a sub-set of patients who can do well with long-term opiates management and there are others who can’t.  Vigilance by all is necessary in making this determination, and not a little bit of courage.

Unfortunately, this scenario plays itself out every day in the world of pain management in so many different ways and for several reasons, and not just related to opiate management.   While many are thrilled someone would be willing to care for these medical pariah’s, they or others in our culture are more than willing to criticize or, much worse, punish the doc when he or she fails to follow societal expectations or the pre-conceived notions of those who choose to criticize.

Why does this happen?  For four basic reasons:

  • There is no universal understanding of chronic pain.
  • There is no universal solution to the problem ;  in fact, there is no solution
  • There is no universal definition of what chronic pain management actually is.
  • A Physician is judged how well his judgment follows the evidence base.  What happens if there is no reliable evidence base?  What happens if a problem is so complex that that it defies study? Who defines what the reliable evidence base actually is.

I explore these issues in detail in my book:  Needless Suffering; How Society Fails Those with Chronic Pain (University Press of New England, 2016).

I would like to close with an illustrative vignette.  A few months ago, I had a conversation about the opiate abuse epidemic with a local sherriff.  The big problem in our state is heroin.  I am scratching my head trying to remember the last time I prescribed heroin, and I just can’t seem to remember ever doing it.  Still, he blamed all those bad pain docs and the pain patients.  He told me that it is too bad they couldn’t just suck it up and deal with like they did in the old days.  He seemed oblivious to the fact that patients have been using opioids, cannabinoids, alcohol, and other things for millennium, totally un-regulated until the past 150 years, often under their own supervision because they were unable to receive care.  John F. Kennedy used Demerol and Valium to control his pain while president.  The attitude of this sheriff, which was based on his pre-conceived notions, is rampant in our society.  Unfortunately, many with this attitude occupy a position in which they can control the behavior of others.  Somewhat fortuitously, the next day a police officer arrived in my office suffering from severe pain due to a herniated disc.  He was unable to receive any medication to allay his suffering.  He told me: “I will never again question anyone’s pain.”  In retrospect, I wish I had given him the name of the sheriff and suggested he have a conversation with him.

The true morbidity and mortality from chronic pain, whether treated or not, are not known, but staggering and dwarf that due to prescription drug abuse.  Public policy must be balanced and respect the problems created by both.  However, stigmatizing those who suffer and those who minister to them is counter-productive and must be stopped.  It is exciting that the National Pain Strategy (NPS) addresses many of these issues.  I pray for its success.

Part One: http://nationalpainreport.com/stigma-opioids-addiction-and-chronic-pain-8827980.html

Part Two is here:  http://nationalpainreport.com/the-stigmatized-pain-doc-8827976.html

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