Why is chronic pain considered a character flaw?

[ICLori]

[When the idea of a Courage Award was introduced on the boards it was proposed as an award to go to "members who are showing great strength & courage during a very difficult time". The FIRST person to pop into my mind was ICLori. This woman has been through so many trials with IC - over and over, but she is like a bobber on a fishing line, dunks under and pops right back up! Again and again no matter what life throws at her she moves forward. The super extra special thing about her is that she continues ALWAYS to post a million times more often in support of others than about what she is facing. If I could give her 20 Courage Awards I would. You deserve it, Lori. ~~~ vm/Kim]

Dr. B. and I were talking today in our session about why the diagnosis of "chronic pain with psychological factors" bothers me. It's true that I have chronic pain due to IC, and it's true that this pain, when untreated, causes me psychological distress. This would be true of any person with this disease.

Today I ran across an article talking about how undertreated chronic pain (cancer pain, etc.) is in our society, and the barriers to getting effective treatment - in other words, why we undertreat and ignore and stigmatize chronic pain.

The article posed the question - if chronic pain is a physical thing, with real measurable physical changes in the body and in the nervous system - then why do we treat it as a characterological disease?

I think the article really hit the nail on the head as to why I am uncomfortable with this diagnosis. I have to wonder, why is chronic pain considered a psychological diagnosis at all? I have been reassured over and over again that my therapist and my urogyn both believe I do have IC, and they do believe I am experiencing the pain from the disease.

My therapist believes that with psychological treatment, I will experience less pain, but I am doubtful of that. My belief at this point is that my pain is completely physical in origin, and that the stress I am feeling from the pain would be felt by any person in untreated pain.

We do both agree that my pain needs to be managed with medication, however, so at least we agree on that. We are all on the same sheet of music there. So that's a relief. And I found out today, too, that my psychiatrist is not going to be managing my pain - rather, she is going to be sending me to someone else. I don't know who. I am a little bit anxious about this, as I fear a bad result from pain management, as I have read many others have had bad results, and I myself had a bad experience once. I am trying to be hopeful, but to be honest, I am feeling more anxiety about this than hope.

On a positive note, my husband has agreed to go with me, to be my advocate, and to help me find another doctor outside the network should this doctor fail to adequately address my pain. He's also willing to go back to the urogyn and petition for adequate pain relief there.

Anyway, I just realized today what bugs me exactly about all of this - what bugs me is that our society does not seem to think of us as having a terrible disease that causes ongoing pain. Our society instead sees us as having a psychological disorder, or a character flaw.

Discussion?

Blessings,
Lori

[ICLori]

Sigh. I guess I'm the only one affected by this issue. Everyone else either has a standard IC treatment that works for them, or else they have found a good pain management doctor.

Not many people have to bounce from doctor to doctor like we military dependents do.

Each time I see a new doctor, I am starting over from scratch, pleading my case from scratch. And for the most part, my doctors have ignored my pleas for help with pain management.

I don't feel it's healthy for me to go on in untreated pain at this point, I feel very strongly that I need some help with the pain.

I don't want to be on narcotics 24/7 because 1) they irritate my bladder worse that way, to the point where I am in worse pain on them than off them, and 2) I don't usually have pain 24/7 - I always have pain at night, and only sometimes during the day. Or I have pain during the day, but it's often mild pain (like a headache) and I do not want to take narcotics to treat that, because of the irritation factor and because of the side effects of narcotics.

Why is it so ridiculous of me to request, say, 60 Ultram per month, to use as needed?

Why is that considered an outrageous request?

I feel as if my pain is not being taken seriously, as if I am just regarded as a head case rather than having actual physical pain.

When I asked for pain relief from Dr. T., he sent me to counseling, instead, and didn't help me with the pain. What conclusions would any person draw from that???

Anyway, I'm feeling a bit frustrated by this situation, and somewhat fearful of what will happen next, and I really need some support from you guys.

Thank you,

Blessings,
Lori

[SharonA]

Lori...I think your question is a good one. Why is it that most people who do not suffer from IC totally dismiss its symptoms? Especially doctors? Is it lack of compassion for us who do have a chronic pain disease without a good reason for the disease? And why is it that all compassion is saved for sufferers of other diseases like cancer, MS, MD or other such things?

Of course chronic pain will cause emotional conflict. Who wouldn't feel emotional when their own body attacks them as ours do? I often describe IC as being like my own urine is my worst enemy. How are we supposed to get away from what our bodies do naturally?

I am an Air Force Brat. Also, my first husband was Air Force. I know from personal experience how military doctors work both as a child of a service member and as a military wife. They stay in just long enough to repay the governmant for their education, then get out and go into private practice where the real money is. I don't think I ever saw the same doctor twice whenever I went to a base hospital. Besides, my father was transfered about every 4 years. There is no relationship building, no trust factor that can develop in a civilian lifestyle which is more stable.

[ICLori]

Thank you, Sharon. I needed to "talk" with someone who understands how frustrating this can be, to never have a good trusting relationship with one doctor.

I see that this is not just confined to IC, but apparently is a huge problem for pretty much everyone with chronic pain. I've been reading articles, and everything I've read, says that other chronic pain sufferers go through at least some of what we do, if not all of it, in terms of dealing with doctors and medications, etc.

It's really a huge problem. I hope it gets resolved soon.

Blessings, and thanks again,
Lori

[SharonA]

I still say that the more known chronic pain diseases are less likely to cause such harsh reactions by the medical field than the less known ones like IC. I keep wondering if it is caused by "fear"? That maybe the "white coats" are afraid of us because they can't just treat our disease with one medication and send us on our way. We are complicated and not easily cured.

[ICLori]

I know doctors are very frustrated with IC, just as we are. I was re-reading Dr. Brookoff's transcript again on this site, the story about menstrual cramps - have you read it? It's great. About a doctor lecturing, saying menstrual cramps are a figment of the imagination - then a few years later, when there is finally a medicine (NSAIDS) to treat cramps, he's suddenly very sympathetic to this "awful scourge" of menstrual cramps.

Basically, it boils down to, if doctors don't have an effective drug to treat/cure a disease, they don't believe in that disease.

So we have the misfortune of having a disease that is not always effectively treated by the available drugs, and can not currently be cured.

Hmmmmm.....

Blessings,
Lori

[SharonA]

Yeah...I read the cramp thing. Even my own mother did not believe that I had such horrible cramps from my period. She would send me off to school telling me that I had to "put up with it" and that it "couldn't be as bad as all that". When my own mother didn't understand that I was in real pain, how could I expect others to believe me? I was gratified to read that it wasn't all in my head. That the pain I suffered with until I became postmenopausal was real and it was being recognized by the medical field. I hope it is not long before it is the same with IC.

[Sarojini]

I'm sorry I couldn't reply to this thread earlier -- work really interferes with my personal life LOL...

I hate that chronic pain is considered a character flaw too. What makes me really mad is how the "character flaw" only occurs in those of us with NON-MALIGNANT pain (menstrual cramps, IC, fibromyalgia, myofascial pain syndrome, and all of the "But you don't LOOK sick" diseases, as I call them). Obviously, being in the cancer research field, I totally sympathize with those who have cancer, and know that they need pain medication badly -- but I also see that those with cancer pain do not seem to have this stigma. When I have shadowed oncologists in the clinic, pain medications are handed out easily and with pleasure, probably because the doctors can see that big old tumor in the liver.... but they can't easily see anything wrong with people like us.

I hate to say it, but it also seems to be a "woman" issue sometimes.

When my husband was in the hospital overnight with what turned out to be a minor heart issue, he got a headache -- and they gave him MORPHINE for it. For a HEADACHE. What happened to TYLENOL? We were both appalled; I felt SO devalued at that moment because there was a time when my husband literally carried me to the ER at that same hospital in severe pain and in withdrawal because no one would continue the pain management I'd been getting before we moved to this state... and it took them forever to decide to give me something for my pain. And then HE gets a headache and gets enough morphine to kill a horse. Of course, my husband was very angry for the same reason; he didn't understand how his offhand complaint of "Oh, I kind of have a headache" would lead to IV morphine, while my screams in the ER went untreated.

I understand feeling like you are being made to feel crazy or worthless because of pain -- when I moved here, the primary care doctor that sent me into withdrawal said, "God, MS-Contin??? Haven't you heard of Advil? I'm sure it cannot be that bad" and refused to refill the meds I'd been taking for a year at that point. While I was not addicted, and took everything as indicated at all times, a year of narcotic therapy will cause you to become physically dependent, and suddenly taking away that therapy is dangerous enough to kill someone. (Because of a letter I wrote to the state medical board, that doctor was later fired from the practice I had gone to... and I also switched primary doc practices.)

Luckily, my life began turning around when the ER finally agreed to give me my meds until my appointment with Dr. Evans, my new urologist, and my pain clinic, a month later. Since then, I've not had any problems with pain control and I have not been made to feel like it's all in my head -- even my psychiatrist says, "Well, I can't cure your physical pain, but hopefully we can work on the emotional pain." Which is what I think a psychiatrist who treats chronic pain patients should say ... being told that psychotherapy will take away physical pain is insulting. Psychotherapy may occasionally give you a new view of things or a different way to think of/deal with pain, but it will NOT make it go away.

[ICLori]

Wow, Jen, what a story! That really does illustrate the difference in how the genders are treated, doesn't it? I know that doctors take me much more seriously when my husband is in the room with me. It's a shame it has to be that way.

I hope things get better someday. Maybe things are getting better. I just haven't been alive and dealing with this long enough to really see a big change. In fact, from where I sit, I get the feeling that doctors are growing ever less willing to treat pain, whether from surgery, or chronic, or anything. I feel as if we are just saying, "advil for everyone, no harder drugs than that, even if you are just out of surgery, even if you are dying."

There are so very many of us who are in chronic pain, and so many people who will be in chronic pain or have been. Surely if we all worked together, we could advocate for changes....I know that is what everyone here is trying to do. It does feel as if we are trying to sweep back the ocean sometimes, though. Sometimes I just feel frustrated with the present state of affairs, and with how some doctors seem to perceive our disease in particular.

Thanks for letting me vent a bit. I'm glad to know I'm not the only one who sees these things, or thinks about these things.

Blessings,
Lori
P.S. I figure, I'll go to the pain management doc - nothing to lose really - shoot, if he/she is a jerk, I can at least come back here and tell an interesting story, right? And maybe I will be lucky and the person will actually help me. You never know, it could happen.

[Roxie2007]

HI Lori,
I'm in the center of what your post is about right now.
I have MAJOR body pain.....I have ic and many other health issues and my dr. can't figure the body pain out......so I'm Majorly depressed...as ANYONE with this pain would be.
I don't want a drug for depression. I want a drug to fix the body ache problem, or at least a dr. who sees the need to figure it out.
SOOO I'm changing dr.s and going to a Rhumatologists in 2 weeks. I don't want a dr. who's going to look at me as a depressed person.....but a person with IC and other health issues who needs help to figure out the pain. I get so angry about having to go to several dr.s.......and explain all of this over and over and over.
Thanks for your post.....at least I don't feel so alone in this journey. Roxie

[Moonheart]

Hi Lori,

You are right on in your post of course. Unfortunately there are certain hoops we end up jumping through, and if we don't jump through them in just the right way, then the doctors withhold our meds. It's demeaning and degrading.

The one thing that stands out at me from all of it is that you are asking for a specific number of a specific med. From what I've read all over this board, and from my own experience, that just screams red flags at a doctor. They think that if you know the name of the med you want and have enough experience to know how many you need, then you are an addict.

Unfortunately I think you may have to take the narcotics for now at least, and only take them when you need them. I don't think they can measure your blood tests for how much narcotic is in your blood stream, and at least you will have something for when you are in pain. Sadly enough, I think you are beating your head against a brick wall asking for Ultram. I'm sorry. You shoud be able to ask for what you need without all this crap.

My Uro refused to give me Ultram and told me that it is addictive even if it isn't a narcotic and it also causes heart problems with long term use. So I am sure that is partly why they won't prescribe for you. He told me that only my pain med doc would be able to handle it and he would only prescribe me MS Contin because it is less likely to cause the high that one gets with the short acting narcotics, and yes, even the Ultram.

I know several people in the town I used to live in that take Ultram for the high. They started out on 30 or so, and now are up in the 200 range, and more. It gives a euphoria which is nice and helps patients with depression but worries some docs.

I'm sorry I'm not more help. Your post just cries out to me and resonates with me so much. I have been in your shoes more times than I care to remember. I hope everything works out well for you. You certainly deserve it.

[ICLori]

Interesting...I have never myself felt any euphoria with Ultram. It is not a controlled substance, because it is not considered by the experts to be a drug of abuse. Perhaps if people take several bottles of it at once, it becomes a drug of abuse, I don't know.

It's primary mode of action is actually that of an antidepressant - it inhibits the reuptake of both serotonin and norepinephron in the brain. It's secondary action is a very weak effect on the opioid receptors in the brain and in the body.

The main reason I am asking for Ultram is because 1) it works 2) it doesn't irritate my bladder as much as percocet 3) it doesn't impair me the way narcotics do.

When Ultram first came out, the word was that it was not addictive. This is what doctors were told. Now, they are saying it MAY be habit-forming. Well, you know, antidepressants MAY be habit-forming, too.

I'm just tired of this. I have tried everything I could think of, to deal with the pain, to make the pain go away. CyA worked for that, but my kidneys are going belly-up.

And now my pain is being treated as a psychiatric disorder rather than a real thing, although I keep being reassured that it is regarded as a real physical thing, from a real physical disease. Their actions speak louder than their words.

Yeah, they will send me to pain management, but I'll bet you anything, that pain management person will be all about "thinking happy thoughts to make the pain go away" and will not want to actually take any action to help me with the pain.

Frustrating.

Well, even if they want to make me take long-acting narcotics, so that I become dependent on them, I still have some free choice. I can still refuse.

My husband has said, we will pay out of pocket for a pain management doctor if this occurs. He's already agreed to that. So that is what we will do. It's a shame, I should be able to get my pain managed adequately within the system, but, shoot, look at what Barb went through - she had to go outside of the system too in order to get adequate care.

Actually, there is a table now for predictors of drug abusers versus non-predictors - asking for a particular drug/particular quantity is no longer one of the "red flags." I can post the list if anyone is curious. Of course, doctors are so ill-informed about pain in general, and these drugs in general.

The article also brought up the point that doctors no longer seem willing to relieve pain - but relief of pain is the number one reason people go to doctors. At some point or another, I think we will recognize as a nation that our healthcare system is broken at many different levels.

Blessings,
Lori
P.S. Roxie, I hope your new doctors treat your disease instead of just regarding you as a crazy person - I hope you will be able to get your pain under control and taken seriously by doctors from now on.

[kadi]

Dear Lori,
No, you are not alone in this. For me, it's a very painful, sore subject. I am very careful to allow minimal emotion in doctors' offices, because of being mislabeled when I first got sick. I'm not in the military system, it can be just as discriminatory & unpleasant on the outside.

Don't really want to talk about this much more, but did want you to know you are not alone in your concerns...

[ICLori]

Oh, Kadi, I'm so sorry this happened to you, too.

This mistreatment of all of us makes me really angry. I feel the medical profession has in many ways failed us.

I hope for better days ahead, though, with continuing research, and a slowly growing public awareness of IC.

Researchers are describing this disease as a pandemic, and if enough of us are diagnosed, drug companies will come running trying to make something that works, because surely with higher numbers of patients, there is money to be made. Once that happens - once there is a drug that has pretty reasonable effectiveness - I'm betting there will be ads on TV, etc. and our disease will become better known.

Already, I am hearing people on the boards say their doctors are telling them it's an autoimmune disease. I don't think we can say that just yet, although some researchers believe that, but it does give me hope that our disease will soon be treated the way, say, lupus is treated - as a legitimate disease.

Blessings,
Lori
P.S. Thank you so much for posting to me, even though this is a hard topic for you. It's a hard topic for me, too. I am really angry and frustrated that I have been slapped with a diagnosis as if chronic pain were a psychological disease, and I am still waiting to see what will happen with my pain management.

[Moonheart]

You're right Lori, doctors are ill-informed today. Something that you and I might know about, they either don't know about, or choose to ignore. That's sad.

I am on State medical, so believe me I understand discrimination within the system. My three year old son (years ago) split his lip all the way up through his cheek, to just under his eye. The flap of his lip was hanging off of his face.
I sat there, for over an hour, in the emergency room holding his face together. Then, when he finally was seen, they put his arms behind his back in a pillow case, drug me out of the room because I was telling the doc that he wasn't numb yet, and then let him scream the whole time they were stitching him up.

We get different treatment, for many reasons. It's something that needs to be written about. The word needs to get out and maybe someday, something will be done.