NSAIDS for Vhronic Pain

[allessiov]

My name is Antonino Vespoli.  I am 59 years old and suffer from chronic intractable pain.

I have tried all treatment modalities for pain, including injections, physical therapy, chiropracty, experimental research programs at universities, medical marijuana, opioids, NSAIDs, acetametaphine, heat packs, 10s units, cold packs, and on and on.

Out of all of these, the ONLY medicines that worked were opiate-based, which allowed me to be at least somewhat productive.  But then my pain physician said that "new research" indicates that opioids in fact do not provide effective pain relief over the long term, and he switched me to strong NSAIDS (600 mg ibuprofen) and he said to augment that with physical therapy.

My pain stems from acute trauma from multiple car accidents, then some failed surgeries, and serious arthritis.

Over time, as I comtinued on the NSAIDs and physical therapy with effectively no pain relief, I started to get dabilitating stomach cramps, and I had a stroke.  Long story short, I had developed liver cancer and kidney disease, and my oncologist suspects prolonged use of strong NSAIDS as the reason.  My neurosurgeon told me in no uncertain terms that the stroke was from the prolonged NSAID use.  I was strongly considering suicide, and it still consider it.

After I had switched from opioids to NSAIDs, there was in effect no pain control.  My pain management physicians kept insisting that there was, and that opioids were not an effective long term strategy for pain care, and that the cognitive impairment did not justify any small relief "I thought" I was experiencing.  But I recall when they said that thinking to myself that I was obtaining significant pain relief and that the impairmemt from the intractable pain was far worse than any impairmemt from the effective of opioids.  In other words, I was coming out ahead both in terms of pain relief and cognitive ability vs suffering the intractable pain, which leaves me unable to think through anything.

Since then I have come to know many other patients with intractable pain that have gone through strokes, kidney failure, and other serious ailments because they were told to their faces that tney were not experiencing any relief from the opiate-based medicines, and that they needed to switch to NSAIDs.

Now, I have found another pain management group, and because I have cancer, they give me scripts for opiate-based pain killers each month, but each month, family members have to drive to well over 50 pharmacies to even find the medicines for me.  Every pharmacist tells me that local, state, and federal crackdowns on opiates are causing shortages, and even patients with stage4 cancer can't get the medicine.

Has the world gone completely mad?  How is it that one can feel relief with certain medicines but an arrogant doctor can tell you to your face that you don't?  Why are people with severe pain being redirected to medicines that literally have no effect on the pain but also kills the patient in the process.  WHAT THE HELL IS GOING ON!  Are valid patients being punished because of drug addicts?  Are we the sacrificial lambs in this?  I just can't believe it.

[allessiov]

Update: my pain profile has improved since once again being "allowed" to obtain opiate-based medicines.  However, my prognosis has worsened.  The effects from the stroke, brought on my a doctor's advice to replace opiods with 600mg Ibuprofen 3 times per day, have worsened dramatically.  I don't know how much longer I have.

I wrote to my representatives in the House and Senate, federally and at the state level, and have yet to receive a response.  I am seeking relief from the draconian rules in place concerning opioids, because each month is a literal quest for survival..fewer and fewer pharmacies are carrying what I need, Oxymorphone ER, because the FDA recently voted to remove it from the market.  I understand it is voluntary now, but pharmacists are telling me that the manufacturer has decided to leave the Opana ER market because of the FDA ruling.  Hence, once the existing inventory is exhausted, I will be out of luck.

This month, my family members could not find the Opana anywhere, so in addition to the uncontrolled, unbearable pain, I started to go through physical withdrawal.  The picture is not pleasant: so much pain that I can barely write this.  My eyeballs move from one target to another, in constant motion as a wrythe in pain.  I am vomiting every 30mins, I have severe, burning diahrea, my anxiety level is through the roof, I am constantly tearing up, crying, yawning, I have restless legs, and life is just not worth it right now.

I had asked my physician to change from Opana ER to Oxycontin ER, and he gave me the same dribble, "Recent CDC studies have demonstrated that Oxycontin is ineffective against pain, and it just gets you high, nothing else." After he said that I literally screamed and asked him why he had prescribed it in the past to others, and that I knew many of his patients, who told me that it was VERY EFFECTIVE in relieving pain.  I named several of his patients who said oxycontin ER had worked quite well, and that they did ZNOT GET HIGH.

I am at the point now where suicide seems more suitable.  After all, these "physicians" gave me the high dose Ibuprofen, which caused my stroke, ruined my kidneys, and literally made me sick to my stomach.  These jokers made me switch from an effective opioid strategy to control pain to a strategy that ruined my life, with no pain control.

Is this the credo?  DO HARM to your patients?  Ir is it, DO NO HARM!  WTF!!

I have one last option.  I was born and raised in Italy, near Rome, and my first cousin is an orthopedist in Rome.  I called him recently to get his advice, and he told me that Italian laws on opioids are very strict, but that as long as I have a valud script, the supply is plentiful in the pharmacies.  He said the manufacturer of Opana ER still supplies the medicine in the EU.  He has advised me to come back home, and that his partners will perform an examination on me relative to the conditions that are causing my pain, which include orthopedic-related as well as cancer-related causes.  If warranted, they will then put me on a formal "pain management" program, which is closely monitored by the state.

I would have to be away from my wife and adult children, but I will be able o stay with my relatives in Italy, and they will help me to legally acquire the medicine I need and to arrange for care at home (their home).  I am a dual-national, USA and Italian, and therefore, my out of pocket expenses will not be as great as they otherwise would have been.

These are my choices: suicide if I stay in the USA because I can't get pain relief because of this insane war on opioids, or travel to my birth country, where the laws on opioids are strict, but where I can actually obtain them legally because pharmacies have the medicines.  

Pain is no joke.  Unless you live with it, you don't understand.

Farewell.