Welcome to Hell the Reality of Chronic Pain

By Sandy Auriene Sullivan,WorldWideHippies-I was in a car accident 12 years ago and over time it has disabled me.

My disability might not even be that noticeable if you just met me, but it is from my left side beginning at the top of my head to the base of my foot and all points in between.

For 12 years I have had to  fight for fair and proper treatment by doctors, pharmacies and yes, even with family.  Because of this, I try to help others because it’s a real mine field of legalities and misunderstandings.

Pain is a reaction to signals that are transmitted throughout the
body.  Chronic [non-cancerous] pain affects approximately 25 percent
of the U.S. population.  There are two types of chronic pain:
nociceptive pain and neuropathic pain; some people experience a
combination of these two pain types.

I experience both neuropathic pain [pins/needles and numbness]  and nociceptive  pain – which is related to damaged tissues  often described as dull throbbing pain.

Fibromyalgia is nociceptive pain and many people with diabetes for
example experience neuropathic pain.  Pain is pain.  Be it acute
[broken bone] or chronic [injury that never heals or disease]. It’s
also exhausting and often the cause of severe depression.  Especially
in individuals not receiving proper care.   Chronic pain accounts for
considerable direct healthcare costs, and indirect costs such as loss
of productivity.

Recent surveys and studies show that for  many patients, chronic pain
is under recognized and under treated.  In some cultures, living
stoically with pain is viewed as a sign of strength, and sufferers are
often reluctant to take medication for fear of being seen as weak or
becoming reliant on drugs.  Others resign themselves to living with
pain as a necessary part of aging or as an inevitable consequence of a
past illness or injury. People with chronic pain often feel guilty for
complaining.  They sometimes avoid seeking treatment for their pain,
feeling that they would be wasting their doctor’s time.  We often feel
a sense of  hopelessness and helplessness especially  when your pain
does not correlate to a specific problem or disease.

Lack of awareness about the impact of chronic pain and its treatment
options in the medical community also contributes to the under
treatment of pain, as clinicians are not always aware of advances in
pain therapies, or how to access the expertise of pain specialists.
In the US  even  doctors that specialize in treating pain often live
in  fear of  losing  their license if they over-prescribe [despite
that studies show there is no ceiling in opiate treatment] if they
over look their patients use of  marijuana, they fear repercussions or
a lawsuit. [studies show not only is Marijuana beneficial in treating
pain it reduces a patients need for opiates too.]

The stigma in many of our communities is if you take an opiate of any
kind that you are an addict or “high.”  The reality is you cannot get
high off your pain medications if you are in pain.  If you take these
medications and are not used to them say, after a minor surgery then
yes you may get sleepy.  But if you are taking them for chronic pain
you should function normally if treated adequately.

Currently, in the U.S. due to some high profile cases in South Florida,
there is a major crackdown on all doctors that treat patients with
chronic pain. Often doctors are leaving  the treatment of pain all
together and going into other areas of medicine.  Which puts more
pressure on doctors that remain in this area of medicine and for
patients it means difficulty in finding another doctor to treat  them.

Pain can be all consuming.  It can be embarrassing. And many
pharmacies will not even take your legal prescription if you are a new
patient.  Some pharmacies fear being robbed and due to DEA limits on
production the last 3-4 months of every year often means shortages at
the pharmacy.  Since prescribing law means you cannot get a
prescription filled early [by early I mean you probably have 24hrs
from your last dose to get your new one filled]  if your regular
pharmacy is out of  your medication completely your only option is to
drive to each and every pharmacy – because that information is not
given out over the phone.  The embarrassment comes in when you walk
into a new pharmacy, show the prescription to the pharmacist or tech
and they make a face, tell you to hold on.  Then they walk to a
computer or show it to another staff member only to tell you “sorry,
we do not carry this and we will never have it”  - yes, I have had
that experience.  It’s uncomfortable to say the least.

HOPE and HELP

If you are new to the life of chronic pain or have been suffering in
silence let me offer you some invaluable advice.  In the U.S. doctors
and clinicians work on a 1-10 pain scale. 1 being the least and 10 the
worst.  Doctors are often rushed and you will be lucky to get to talk
to him or her for more than 10 minutes.  My advice for all pain
patients is a notebook.  Write everything down. Write down what hurts
and how badly [using the pain scale]. Write what worked and what
didn’t work. [from medicine to exercise].

While you are at it a daily pain journal can also help you get it all
off your chest too.  Especially those days when you feel so worthless
because you have dishes or laundry, dusting or invites from friends
and family that is all being a little neglected.  Don’t be too hard on
yourself. Remember 25% of us,  just  in the U.S. are feeling just like
you are now.  The laundry and dusting will still be there tomorrow and
no one is going to give you a medal for getting it all done or for not
taking  any pain medications.

It’s also very important to only go to the same pharmacy.  Even if
it’s a chain store, stick with one store. It keeps your files easier
to manage [it makes you look better in both doctors and pharmacies
eyes too] and talk to your pharmacist.  Let them know everything that
is wrong with you and why you take these medications. It just helps to
build a good relationship and they tend to then go the extra mile to
help you.

While we are on the subject, keep a copy of all your records.  It may
cost a little at first, but it makes it easier if you have to change
doctors for any reason to have your history in your hand. This can
help prevent any lapses in care.  This includes MRIs, XRAYS, tests of
any kind, reports and transcripts from each visit.  You will also want
to take in at least 12 months or more of your prescription history.
Your pharmacist can print it for you and fax it to your doctor.  A new
doctor will insist upon seeing it.

DOCTOR SHOPPING vs SHOPPING FOR A DOCTOR

Doctor shopping is illegal however shopping for a doctor is not.
What’s the difference?  Doctor shopping is getting 1 or more
narcotic/scheduled medications from more than one doctor within the
same month. [exception being if you received a 5 day supply of
medicine from a doctor or hospital and you see another doctor after
the 5 days are up].   This is about the most important part advice I
can give to anyone living in chronic pain.  It’s easier to do than you
may think to do; however get caught doing it?  You  will “black-list”
yourself with all doctors, no pharmacy, except “cash only” barely
legal – pay out of pocket black market prices for your pain
medications, pharmacies will take you after wards.  That is, if even
they will work with you.  You will also get arrested and likely have a
felony drug charge that will stick with you where ever you go.  Even
in ways you would think are totally unrelated. You would not be able
to get any form of  assistance, like Food Stamps in the many states
that participate in preventing those with felony drug charges from
receiving state aid.

Shopping  for a doctor however, is different. You can see as many
doctors within the same month as your pocket book and/or insurance
allows.  The key to “shopping for a doctor”  is not walking out the
door with any kind of  prescription.  You can receive treatment  like
therapy or discuss what he/she would recommend for you – but if they
attempt to hand you a prescription, no matter what kind, no matter if
it’s the same or different than others that you have had. You must
refuse.

Resources to Remember

You are not alone.  You have the power but must play within the rules
of the game.  And, if you ever need to talk or need support?
http://painaid.painfoundation.org in association with The American
Pain Foundation is an online forum where you can get more information,
vent, chat, ask questions etc.  Also, http://www.painfoundation.org/
has a great newsletter to keep you up-to-date with new changes in law.
Changes in medications or recalls.  Petitions and other invaluable
resources to help you navigate the Hell that is our Reality in Chronic
Pain.

Sandy Auriene Sullivan -
Born in Chicago, we moved to CA age 9 where I went to school in San Diego County before moving to Australia in my late teens. In Australia I did an apprenticeship for Billabong clothing then finished school studying business and law. Came back to the US to live during the lead up to Bush v. Gore; which gave me a passion for Progressive politics. Currently, reside in North East Florida. Believe in and fight for fairness and equality. Hobbyist photographer and painter.