Chronic Pain Sufferers Skeptical of Their Government

[UglyGreed]

Readers of the National Pain Report are skeptical about their government and its role in pain management.

In April, we asked them some basic questions about the state of pain management today, and since almost all (99%) who answered online described themselves as chronic pain patients, their frustration was palpable.

When asked if the pain patient is being adequately considered in the discussion of how to address the chronic pain issue in the United States, more than four out of five (81%) said they either moderately or strongly disagreed.

When we asked about government’s role, the skepticism we mentioned was in full flower:

84% said that federal regulatory agencies like the Food and Drug Administration and the Drug Enforcement Administration are part of the problem in chronic pain treatment, and 72% said the same about elected officials.

http://nationalpainreport.com/chronic-pain-sufferers-skeptical-of-their-government-8826079.html

[UglyGreed]

1. Are Pain Patients Being Denied “Legitimate Prescriptions?”

A month ago, the National Pain Report asked if the news media was missing the point on the pain medication story. We quoted two leaders, one doctor and one researcher, as saying that the chronic pain patient’s need for medication and society’s need to combat narcotic pain medicine abuse are separate, but may be conflated in a way that is hurting some people in pain.

http://nationalpainreport.com/are-pain-patients-being-denied-legitimate-prescriptions-8826123.html

[hedda_foil]

2. Somewhat????

The conflation of addiction with pain management is a lot more than somewhat of a problem.

[UglyGreed]

6. Well I was on oxycodone for six years

I stopped over six months ago and did not become an addict. I am suffering but made the choice to stop on my own due to pressure from some of my doctors blaming my symptoms from hydrocephalus on the pain medication. I still am having the same problems with the hydro even after I stopped, imagine that. I know some do abuse these drugs but those who have legitimate issue should not suffer in vain.

[nashville_brook]

17. OMG -- i am so sorry you're dealing with this

i have so many horror stories about doctors' fear/ignorance of pain being treated like a liability in the healthcare setting. i have spinal issues. something has eaten up my discs. i'm on my last one, and it's ruptured/extruded right now. completely white knuckling it with the pain b/c i can't seem to get a doctor, even a pain management doctor -- to take my pain seriously. i'm walking on a cane it's so bad. and i'm only 49.

i was on morphine for a couple of years. never had a problem with it. there's people in my family who have the addiction gene, but it skipped me thank god. i just got their crappy connective tissue.

thanks for the thread -- it's good to know there's someone out there paying attention to this.

[UglyGreed]

21. We are the same age

and it seems we suffer the same faith. We must not accept how we are treated and fight for some kind of respect and proper treatment. Funny though more we speak up more we are labeled as drug seekers. Hang in there

[nashville_brook]

35. true that on the speaking up!

but hell, that's something i've known since way before i had the chronic issue. you speak up about stuff and people try to shut you down using the least common denominator tactic. drug seeker is just the slur du jour

[hedda_foil]

25. I was on hydrocodone for 10 years.

I l went off it because my daughter was afraid I'd become an addict. Like you, I just stopped with no withdrawal problems. I'm taking tramadol now. It doesn't work as well as the the Norco did, but it helps my fibromyalgia pain to some extra.

[AuntPatsy]

30. Codeine is in the Tramadol

[nashville_brook]

36. actually, tramadol doesn't *contain* codeine

it was created as an "analogue" of codeine that works on similar receptors, but it in a different manner. you might say tramadol was inspired by codeine.


people who have allergic reactions to codeine can take tramadol.

[AuntPatsy]

40. My son was given that, I could have sworn I read that on papers that came with prescription..

[hedda_foil]

46. It's not exactly codeine, but is a synthetic opiate.

The dose I'm taking is less than I was on, but it is an opiate. It's not as tightly regulated to the extent of the codeine drugs, though. I can't take any of the NSAIDs now because I took so much ibuprofen UP to a few years ago that I developed a perforated ulcer and needed several transfusions and emergency surgery. I was experiencing so much pain from the fibromyalgia that I didn't know I had an ulcer until it was almost too late. The same thing happened the next year when my gall bladder was so stuffed with stones that it became infected, requiring more emergency surgery. Again, I had no idea that I had gallstones because the fibro pain was so overwhelming that all the pains just blended together.

[redstatebluegirl]

3. When Oklahoma changed the rules on Hydrocodone a few months ago

I was on the last 3 pills in my prescription. When I got a script from my Doctor and took it to the pharmacy I was told that it could not be filled for at least 2 weeks while they "relabeled the bottles to comply with the current regs".

After two weeks in terrible pain, I went back to get it filled, I was told I needed to see my Doctor and get a new script. Not just stop by mind you, have an appointment with my Doctor which the insurance would not pay for since the two appointments were so close together. Two appointments, two weeks and $160 later I had a one month prescription with a warning I would have to have another appointment with my doctor each month to get my prescription. I also have to pee in a bottle when I see my doctor each month, not sure what that will cost. I was seeing my doctor every three or 4 months so this adds extra cost each month.

So, this is done to keep the drug dealers from selling the stuff, they still are you know, this doesn't stop it or even slow it down.

I don't abuse these drugs, in fact I don't take them daily, but when my back is in a place where I can't move I take them. Normally a one month supply will last me a month and a half or more unless I have hurt myself.

The pharmacy acts like I am a drug addict and I think the government thinks I am as well. Live in my body for a while people, trust me you will be begging for something to make it stop.

[CountAllVotes]

4. I'm in a similar situation

I have peripheral neuropathy which goes with the M.S. I have.

The doctor I was going to said it is a new Federal law requiring drug testing and I have since time decided that I no longer trust this doctor.

Seems they will bill your insurance for this and insurance in many cases won't pay for this costly nightmare but YOU will.

I will no longer be going to the liar/traitor of a doctor I've been with for far too long. The lies have forced me into action as it seems there is no "new Federal law requiring drug testing" of permanently disabled people like myself as I was told there was. I have searched everywhere and found nothing to support this statement!

I hate this shit. It stinks to high heavens and accomplishes NOTHING IMO. Should I just off myself instead? Is this what they want? I am NOT going back! NO.

Seems these drug tests are quite expensive (over $1,000.00 in some cases it seems).

If I was you, I'd call up my insurance co. to find out if they pay for this B.S.

& recommend.

[cali]

9. I'm so sorry. I've been pretty lucky- in part I think because

the underlying cause of my pain was so obvious and the damage so clear- and my orthopedist listened when I started describing the pain that I was having about a 3 months after my accident and put it together that it was CRPS Type II.

I take oxycodone for the pain, and I'm really careful about it. I've tried all kinds of drugs and other therapies- including spinal blocks. But the oxycodone helps when things get bad, particularly at night.

I dread the thought that someone might make it even more difficult for me to get some relief.

[redstatebluegirl]

10. I hope you don't Cali...

I feel fortunate that my pain is not as bad as some people I have met. I need the drugs off and on, but when I do it is usually pretty bad. I am terrified not to have some in the house even if I didn't need them for weeks. It takes much longer to get them now than it used to.

People who do not suffer from chronic pain have no clue what a problem this can be not being able to get pain relief.

May your pain be mild and managed Cali.

[cali]

12. thanks for the kind words- and right back at you!

[NaturalHigh]

16. I've had three back surgeries, and I'm still in chronic pain.

In a way I'm lucky because I can now walk without dragging my foot. The sciatica is mostly gone, but my back still hurts on a daily basis. My doctor keeps me on opioid medication because I was taking so much Tylenol, Ibuprofen, and Aleve that he was worried about my liver and kidneys. I used to get spinal injections, but they only helped for a week or two and only enough to make the pain a little more bearable, hardly enough to justify the needle in my spine and the headache I would have for two days.

I'm telling you this just so you know that you're not alone. Good luck to you, Cali.

[Nevernose]

33. I destroyed my stomach & large intestine w/ Advil

Trying to take care of the back pain. Now, instead of taking an OTC, I have to get the lumbar injections and hydrocodone. Ironic. I get where you're coming from.

[OregonBlue]

27. My husband who's 69 has pinched spine and carpal tunnel. He is also on oxycodone. It is

getting harder and harder to find a doctor that will take him as a pain patient. They want to switch everyone to non-addictive pain medications that do not work. There is no therapy that will help his condition. As far as being addicted, he just laughs and says that at 69, if he has to take a very low dose of pain medication for the rest of his life, who cares. It's about stopping pain, not controlling people's morals. So sad what's happening in with pain treatment in America and Canada. Lots of people are having to suffer needlessly.

[UglyGreed]

11. Many people do not abuse these drugs

who are truly suffering from chronic pain. I have gone through what you have for many years and I understand what you are saying. We have no voice and I fear it will only get worse.

[NaturalHigh]

14. I'm in the same situation as you, so I sympathize.

Let me clarify something in case your doctor and pharmacist didn't make it clear to you, though. You only have to see your doctor every three months. For two months after your appointment, your doctor can simply write you a prescription. It's still a pain in the ass, but every three months beats once a month.

Oklahoma is ass-backwards in the pain management department. We're number one in prescription overdose deaths, but you can bet we'll be the last state in the union to legalize marijuana, even when used legitimately for pain management or other medical purposes.

[lark]

15. My mother, who was 90 at the time, was drug tested.

She had a 5 mg Loritab rx, was in the end stanges of pulmonary fibrosis, yet they still drug tested her. Ridiculous!!!

[Puzzledtraveller]

24. It's worse in Kentucky

Two herniated disks and can't get them at all. Doctor confided that they are too scared to prescribe them unless the condition is so obviously painful that it would completely avoid scrutiny by the authorities. I have to use a homemade concoction to keep my pain manageable.

[redstatebluegirl]

32. Thanks Everyone!

Glad to know I'm not alone with this problem. Thanks also for telling me I only have to see the doctor every 3 months, I called her office to confirm this and they said that was true! Saves a lot of money and time!

Personally I think the people in congress right now would just a soon see everyone who is chronically ill or poor die quickly and get out of the way.

[Worried senior]

34. My husband

is dealing with the same issues. He has RA and spinal stenosis, they can't do anything for him and he keeps pushing himself so he doesn't end up totally crippled.

Getting the medication filled each month is a nightmare, going thru the same thing, see the dr. pee in the cup or bring pills in to be counted.

Bet when this all said and done it won't have any effect on the drug problem.

[hedda_foil]

47. There are new FDA regulations that are responsible for this nonsense.

You have to have a new written scrip each month to get the meds. No refills and docs can't phone in a prescription.

[mrmpa]

50. Pee in a bottle, that's insane............

thee's no Law that requires that. Is this done at your Doctor's office? If so he's making money off the drug screen. I've been on vicodin for 7 years. 2 per day as needed. I see my Doctor every 3 months for a prescription. He writes me a prescription for 90 pills (45 days) for me. He then gives me another prescription for 90 pills, but he notes on it that it is to billed on a certain date (the date is 45 days from that visit in his office).

He is not breaking any law, and no pharmacy had denied filling the prescription. I also take tramadol, this is only since norco came on board as the breakthrough pain on this new dosage was unbellievable.

[mopinko]

5. really hard on younger sufferers.

my 21 yo daughter takes most of the same meds that i do, and she has been tagged by the insurance and the pharmacy as a drug seeker. i am an old lady, so i have never been tagged.

she went to a chronic pain specialist and the start of the conversation was- i am not going to give you any narcotics.
she wasnt there to get narcotics, she was there to get relief. she was there to have her many meds monitored by someone who knew what they were doing.
she got a tens unit and a couple injections. she was very happy with that treatment.

she lost her job because the insurance wouldnt refill her lyrica. she had to go cold turkey for a week. this is so dangerous. and she has an underlying seizure disorder. when she asked a coworker to watch out for signs of a seizure, word got back to management. first they made her get a letter from her doctor saying she was fit to do her job, which is what the doctor said. THEN they fired her.
yeah, lawsuits all around. but now she has to try to find another job while she has to explain right out of the box that she has epilepsy, and was wrongfully dismissed from her last job.
so far that has been a lot of fun.

[UglyGreed]

13. So sorry to hear about your daughter

it is a long road she will have to endure. I myself have been on that road since the age of 26, we need to speak up and somehow find some help for those who suffer.

[hedda_foil]

26. Mo, is your daughter in the Chicago area?

If she is, I can give you a referral to my pain clinic, which is near Oakbrook and has helped me enormously. Pm me if that's helpful for either of you.

[mopinko]

41. thanks hedda.

she is here, but she doesnt drive, so oakbrook is not real doable.
i think she will be okay.
i wish she could see my rheumie. he is the best. i have sent other people to him. at least she can talk to me and find out that there are such docs, and she needs to just keep trying to find the right one. which of course, on paper, looks like drug seeking.

her stuff is so complex. i cant tell you how many things are messed up for her. she had a head injury as a kid that didnt really seem like much at the time, but which has been haunting her ever since. messed up the rest of her body as she grew.
just slowly picking through it all. starting to get a grip, but the meds are complicated. and her frustration is pretty high.

good to see you around hedda.

[hedda_foil]

48. Thanks, Mo. Have you tried the Rehabilitation Institute of Chicago?

They have a wonderful chronic pain program that gets people with severe chronic pain back to a good level of function and your daughter could take the CTA to get there.

I took part in that program about 12 years ago and some of the folks in my group had had major work related injuries that left them totally disabled even after the whole range of treatments. It was really amazing to see everyone (including me) back on our feet and feeling much, much better.

[mopinko]

49. she has been to ric

they do an adolescent program that she did while she was in high school. she wanted to go back but they were gonna make her do the 6 week program again.
they want her to see a therapist there, gee, why is that? i never had a doc tell me that. anyway, she has her own therapist. didnt like the one there all that much.

she doesnt have the tens unit yet, but at least they are offering something besides more pills. sucks to have them assume she wanted more pills, when that is the last thing she wanted.
still a lot of unanswered questions about physical stuff. thinking she might go back to mayo. did a tour of the gastro dept a few years about. that was fun. they screwed up the intake. she was there to see what all the rest of the shit was about, but she had a dx of chron's so that is what they booked.

good news is she had a good job interview today. going back for a follow up tomorrow. where her sister works, so they already knew the deal before she applied.
hope the 2 of them behave working together. they have their moments.

[hunter]

8. The "War on Drugs" has destroyed many lives.

There is no good in it, none at all.

It deprives chronic pain patients of medicine, it turns addiction into a far more deadly disease of dirty needles, prostitution, and impure drugs, and it siphons money from a community to violent criminal gangs and thuggish corrupt law enforcement agencies.

Chronic pain patients ought to be able to get their meds without any hassles, and addicts ought to have easy access to health care facilities where they can be treated for their addictions, and in the hardest cases, supplied with pure pharmaceutical grade drugs in a friendly supervised setting.

In my own hometown, many women my age, and very nearly all the men who fell into the heroin/prostitution trap died of AIDS.

It doesn't have to be that way. Our "drug warriors" are essentially violent price support agencies for the most vicious gangs, corrupt politicians, vile pharmaceutical companies, and money-laundering banks.

[nashville_brook]

37. +100000

[ohheckyeah]

18. I live in

pain because I refuse to be treated like a drug addict. I can't take narcotics because they adversely affect the interstitial cystits. I have a metal rod and screws in my back, have fibromyalgia and now have pain from a stroke. At least I have a prescription for the muscle spasms.

[UglyGreed]

20. I stopped my pain medication

for that reason and the fact that my doctors used it against me. I rather stop on my own then fear that I would be forced to stop by their rules. I can not take muscle relaxants due to a hiatal hernia I developed from using Celebrex when I first got hurt. Two lower back operations, three level cervical fusion and shunt surgery for Hydrocephalus under my belt and still looked at by some doctors as a drug seeker.

[ohheckyeah]

29. I'm so sorry

you are living in pain. It truly sucks.

[nashville_brook]

19. sometimes when i'm not connecting with someone RE skepticism of what gov or "authorities" say

i think, "if you only knew the things i know, just from my medical condition, you'd not only be skeptical of what you're being told -- you'd be paranoid."

we could be talking about anything —the TPP, or wireless wiretapping — and, i always think, "you wouldn't be so resistant to this idea if you had your reality shattered." and then dealt with an invisible illness that's ill-defined AND be in chronic pain. you get to see the whole spectrum of shit from this seat. you get to see how everyone except patients control our lives: corporate lobbyists, insurance companies, corrupt research establishment, doctors who don't listen (especially if you're a woman). no one speaks truth to power in this arena. we're being crushed and no one freaking cares.

and then there's the chronic pain issue vis-a-vis the war on drugs. nothing has impacted my like more than this. every interaction i have with a healthcare professional regarding my pain goes south or goes no where. i haven't been able to find a decent pain management setting for years. all the war on drugs stuff has done is criminalize pain.

[B2G]

22. Not a chronic pain sufferer per se, but

I have experienced prolonged periods of pain due to a dislocated thoracic rib in my back. It was horrifying pain for 6 weeks. It still goes out from time to time, in fact it did this morning.

It's impossible to describe to non-sufferers the toll it takes on your entire life. Exhaustion, depression, hopelessness..it's unfathomable to those who haven't experienced it.

I know my rib will resolve and I'll be back to normal life eventually. For those of you who won't, my sincerest admiration for your courage and resolve. It's just not right what you are going through.

[Puzzledtraveller]

23. Chronic pain sufferer here

and The Commonwealth of Kentucky seems to go out of it's way to harm us. I have to resort to home remedies to deal with daily pain, I won't go in detail here for obvious reasons and I'm not talking about marijuana.

[HassleCat]

28. It's Called Chronic

Chronic pain is a tough one. If you're lucky, they can identify the cause. I had sciatic nerve pain for three years, so they knew where it came from. They gave me pain killers, but all they do is take the edge off for a while and let you get four or five hours of sleep at night. I know people who have chronic pain from unknown causes, which is much more difficult. About all they can do is switch your pain killers so you get a new one when you build up tolerance to the old one. And pain killers are a bitch, no mistake about that. They turned me into a zombie, and I wasn't even on the strongest ones. Stumbling through every day in a never-land between pain and drugs is no fun. I can appreciate why people are frustrated. I would be interested to know more about the government's role, and why people think the government can or should play a bigger role.

[thatgemguy]

31. Victim of Chronic Pain here

I've been going to a pain management clinic since 2003 following an accident with a back injury. I had to sign a "contract" to get treatment. Random urinalysis, pill counts are a couple of things I've fought since the beginning. I hate it! I've failed the piss tests a couple of times after going camping with friends, and passing the pipe around the campfire. I've also failed after taking Hemp Oil capsules. I've been made to feel like I am a criminal, and threatened with refusal to treat. I have a morphine pump implanted, which I had the doctor shut off last fall. After 13 years of opiates, the withdrawal was hell, and I still suffer from pain, but I'll refuse narcotics until I no longer have to be subjected to this invasion of privacy

The DEA needs to get out from between me and my doctor.

[nashville_brook]

38. their rationale for testing for MJ is spurious and dishonest

they're trying to make a case that you're a drug dealer. better to look at your tax return than piss in a cup.

[Warren DeMontague]

44. " The DEA needs to get out from between me and my doctor."

Well said.

[NightWatcher]

39. I smoke two joints in the morning, I smoke two joints at night

I smoke two joints in the afternoon, they make me feel alright.
I smoke two joints in time of peace, and two in time of war.
I smoke two joints before I smoke two joints, and then I smoke two more.



Catchy little tune.

FTR, four hits usually suffice these days. Two joints would put me on the floor.

[lostnfound]

42. A friend in chronic pain from mesh has terrible time getting pain meds

The mesh was installed in a hernia repair after her son was born, and for about 12 to 14 years she's been suffering. It keeps getting worse. Doctors said if she moves the wrong way it could kill her. She can't get medical because she lives in Florida and Rick Scott worked hard to stop her and others like her from getting Medicare.

[Warren DeMontague]

43. The government is more interested in throwing people like Richard Paey in prison for managing their

Own pain.

http://www.huffingtonpost.com/maia-szalavitz/cruel-and-disgusting-pain_b_43216.html

Frankly, I'm more concerned that people be able to manage their pain effectively, than frothing in fear that someone, somewhere, might catch an unauthorized buzz.

The drug war gravy train must be fed, and justified. So we have bone cancer patients screaming in agony being told to do yoga and meditate, and doctors too terrified of the DEA to prescribe adequately.

[Ms. Toad]

45. Well, Duh.

I hoard narcotics. Always have. If I get a refillable prescription, even if the pain no longer warrants it - I refil it. I occasionally have really horrendous pain (from known sources - not new signals I need medical investigative work - like migraines, as an example), as does my spouse (shingles x3 and kidney stones x 4). Narcotics dull those pains enough to function or to sleep it off.

Under the current regime, it is anywhere from 2 days to a week before we could actually get pain medication for these chronic, longstanding pains for which narcotics are appropriate - because you have to wait until there is an appointment slot open. OR (the alternative promoted by the urologist) just go to the ER. Even though there is virtually no likelihood of being hospitalized (in which case the ER copay would be waived) - but ERs have open slots immediately. Since ERs are a really inefficient way to deliver non-emergent medical care - it is not only making chronic pain management worse, and more costly over the long haul because of the increased doctor's visits, it is increasing inappropriate use of medical resources.

And - what really pisses me off - my sleeping pills are now on the same regimen. One 90-day supply lasts me for more than a year. Unfortunately, when the doc asked me at my annual visit if I needed a new prescription I declined since I assumed they would just be a phone call away when I needed them in ~6 months. I may need to schedule another costly visit earlier than a year because I didn't know they added non-narcotic sleeping pills to the list.

[UglyGreed]

51. Thank you all for sharing your

stories, sad as they may be.