Life in Pain: One to Ten

Life in Pain: One to Ten

I have been a chronic pain patient for 2 years, 16 days, 1 hour, 10 minutes and counting — ever since I sprained my ankle at work.  A simple little sprain that turned into Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD).

Amanda Siebe

Amanda Siebe

Since then, I have been in and out of emergency rooms, hospitals, doctor’s offices, physical therapy, and physical rehabilitation centers. Each time that I go to one of these appointments, I am asked the same question.

“On a scale of 1 to 10, 1 being no pain and 10 being unbearable, what level are you?”

For those with chronic pain, we know how pointless and subjective that question is.

As for me, a person who lives with pain every moment of every day, a 7 on the standard 1-10 scale is different than someone who fell down and injured themselves, or for a person who has never experienced true pain before.

In previous articles, I have mentioned the McGill Pain Scale, a 0-50 scale that ranks the severity of different types of pain. For example, arthritis is ranked 18. Non-terminal cancer is 24. Natural childbirth is between 35-37. Amputation of a digit is 40. CRPS, RSD, and Causalgia top the scale at 42. Right now, according to that pain scale, they are most painful thing that someone can experience.

What I do not understand is how a doctor can understand what I am experiencing when there is no special scale for chronic pain patients.

When I told the doctor at the last emergency department I went to that my pain was a 7 out of 10 — she replied, “Well, that is not bad. Why did you come to the ER?”

It took every bit of self-control I had not to yell at her, “Do you know what chronic pain is? How can you tell me that what I am feeling is ‘not that bad’?”

But the truth is that, due to lack of education and understanding, many of these doctors do not get it. They do not understand the everyday struggle that has become our lives.

The sad part of this whole conundrum is that there is no easy fix. There is no easy way for us to change society and the conception that people have of those with chronic pain.

Every day we are being let down by a system that is supposed to help and take care of us. An example of this is the increased regulations that the FDA has placed on painkillers, such as oxycodone and Vicodin, making it difficult for patients who truly need these medications to get them.

Last week, while in the emergency department for a horrible pain flare, an ER doctor asked me what normally helped when I was in this much pain. I was very honest and blunt and told her that intravenous Dilaudid was one of the few medications that would take the edge off.

She looked at me with a skeptical look in her eye and said, “There is too much paper work to give you that drug. Not only that, but I would have to have your case reviewed and I am not willing to go through the trouble to do that.”

What does it say about our medical health and society that a doctor will not give us medication that helps because there is too much paperwork? I always believed that a doctor’s responsibility was to help their patients, not to worry about how much paperwork it takes.

The Hippocratic oath says, “I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.”

It does not say, “I will prescribe regimens for the good of my patients according to my ability as long as I will not have to face excessive paperwork or review boards.”

Amanda Siebe lives in Seattle, Washington with her husband and son. She writes about her daily battle with chronic pain and CRPS in her blog “Life in Pain.”

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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short tempered

Carole,

That what pretty much how my readings came about. Now if one could come up with a simple little scanner like Dr.McCoy used in Star Trek, life would be awesome!

Pain scales for children under the age of say 10; the pain scale would work, as children do not know how to appropriately express themselves.

Theromgraphy diagnosing for pain would actually be beneficial in how to prescribe the right treatments, but also rule out many of the “drug seekers” & so forth. It would assist the medical community in understanding RSD, migraines all the way including heart attacks or stroke victims especially right after an attack.

It appears in today’s society still the most misunderstood diagnosis and how to treat the symptoms is a hit and miss. Sometimes I use feel like a car being diagnosed, but still do not know what is going on and why. So the medical community throws either everything at us or just ask the pain.

Right now most of my medication regimen is just masking the pain, but they don’t know why I am going through so much that I am going through. All I know is my list of symptoms is long and all I am doing is surviving, which is no way for any of us to live. For me all my symptoms are observable and measurable in a medical point of view, but the why and how to treat it and stop masking the pain.

Theromography maybe a way we should all press for, as well as blood panel, both when not in pain and when we are at a full blown flare up which would be our “10”. When I did my study it did provide me some answers because I did have observable and measurable results, which comes down in establishing my own treatment goals.

Carole, if you can get a copy of your thermography, I would.I would also graph your WBC when you have your blood panels done. Pain and infection raise WBC’s because your body is tricked and thinking it is fighting a disease or infection. Also in many cases that most normal people don’t know is if your BP escalates. So another way is take your BP often. Many drug stores have acessible BP machine for people to use. Document your BP and document both on pain free days and severe painful days.

Many of these things is the hoops I went through keeping a medical journal. This was how I was able to work with my team of doctors and came up with the protocols we have in place for “10” days, which for me is about 5 out of 7 days. I miss a lot of family events, trips, work, etc. It is getting a little better, less ER visits; however, now I am dealing with with the constant pain, as we all are.

Carole, another CRPS'er

To short tempered,
Good idea with the temperature.
I would like to point out that it can go in the other direction as well. My CRPS (lower right leg/ankle/foot) is on average 7 degrees colder. It has been much colder I’m sure but I didn’t have an instant read thermometer at the times I know it must have been. My doctor has one & checks it & it can be 4 degrees cooler up near my knee (in comparison to same spot on other limb) & 7 degrees on the ankle, 6 at top of foot. It’s pretty bizarre. I’ve also had thermography, which is an interesting test to look at the results. In some of the pictures my lower limb was so cold that it looked as if it were amputated.

short tempered

I can relate to the pain factors of life, as many of us deal with it 24/7. There has to be a balance within the healthcare system. Pain scales can be worthless in many cases like ours. The pain scale sometimes cheats us out of actual treatment. What maybe a 7 to one person could be a 10 for me, as we all have different levels and how we process pain. I don’t think any pain scale is fair. What would be medically practical is a more techonological way to assess pain.

We use a thermometer to check our body tempatures to dispense meds to reduce fevers. There needs to be away for technologically to assess pain. For instance in my medical training, I was actually looking at a heat barometric pressure type apperatis. I figured weathermen and even ghost hunters play with the crap, why not apply the same technology in assessing my own pain as an experiment.

What I found during my investigation, is that my core tempature would stay the same; however, when I studied on myself, I found that the body gave off significant heat signitures in areas where I was experiencing significant pain. That extremity, and/or certain area increased in heat radiating and could be physically assessed and I could see and evaluate my own body heat signiture while in pain.In addition, I also took a WBC and other basic blood work panel tests to measure my non-pain days to my advanced pain days and was able to conclude that my hypothesis were accurate; however, I was my only lab rat.

At this time, I do have an excellent team of compassionate doctors that treat me with respect and I find that if occipital nerve blocks, botox treatment, Diluadid (yes, I am able to have that on hand at home, as well as Opana, Taradol, and other narcotics because my conditions.) However, I too, had to fight for my med regimen that I am able to keep my pain under control at home
How was I able to get this done? Everytime I was in a “10”, I called my pain management doctor, communicate, and have them directly call the ER I was heading to in advance so that I was treated right when I walked into that hospital door. Sometimes when I am in that much pain I start having mini heart attacks, in addition, to blackout migraines. If the ER was to treat me with nitro, I would be dead because they would have no clue. So my medical team works with me not against me, but we built trust and have constant communication with all of my team of doctors to get my protocols in place. Sometimes we even have phone conference calls.

This is how I survive. Hope this helps someone.

Amanda K.

Totally understand your frustrations. I suffer and I literally mean suffer every day from lupus, fibromyalgia, and a long list of other ailments. I cannot remember the last time I have been pain free, the last time I have slept through the night without being woken up by pain. I take over 20 pills a day for all my illnesses combine and I’m 31 years old. Yet all I want is a good pain medication to feel some good amount of relief and it’s like pulling teeth to get it, even with having chronic disorders. I go to the ER and say I’m a 10 out of 10 pain wise and look like I’m being judged just because I’m not crying and moaning around in pain because I deal with it 24/7, and get looks of judgement like I’m only there for pain meds. And trust me, I’d give anything to never have to take another pill again.

Rbg

My heart is heavy for all the posters & author; as well as all who are suffering needlessly in this & other countries!! I have had 12 mnths of hell & although I have faith & have been known to be a very strong person; I find myself fantasizing about “not-living!” I have had some dreadful illnesses & a close call w/cancer & death from a mva & find myself thinking; “oh why do I survive? There must be a purpose (undiscovered) at this point!!” The love of my family steers me away from those thoughts but I’m getting over-whelmed & feel we are now climbing an uphill battle!! I have posted here before about my predicament, but no need to reiterate as we all have our stories; ie: ER, Pharmacy, pain dr., family & financial issues! Some are dreadful & sad!! We have lost some really powerful advocates in the past few years. We really need to get organized & take a look @some civil rights successes! We are not the best advocates & understandably so, but this will get worse (as stated in an earlier comment)! We need legal advice etc & to start communicating!! I just don’t see the passion that once was back in 2,000!! This is serious my CP friends; we’re in for the fight of our lives- “it has long been underway!”

Tala, that doc who left you high and dry should be drawn and 1/4’d ! here in USA a doctor, if refusing to treat you has to give you 30 days a registered letetr and try in earnest to get you into a doctor’s office that will treat your coniditon. Sorry that they treated you like this and did not address the originating MVA pain and subsequent condition properly.

OTOH, when docs want to get rid of a patient they consider within their bottom 10% tier of patients, (ie: the patients they really can’t help becaue the dcos have their hands on the door handle and do NOT want to help-we”take up too much of their time”) they will send them a letter. I go tone such letter on the day I received lab results showing I have toxic heavy metal poisi\oning of Gadolinium in high amounts in my urine and some in blood. THis suppsoed LLMD who’d mMISSED my Lyme until I went elsewhere to get tested but then only treated my condition for the “requisite” one month of antibiotics, DID agree Lyme can affect the brain and treid to use this as a reason to get me to see a psychiatrist; why? not to treat the Lyme, but to railroad me into a doagnosis that I was not sick at all. I’d had calls from BCBS telling me, “are oyu going to drop this and giv eup going to doctors?!” I tod them pretty much to Kiss my butt I will FIND what is wrong and HOLD those responsible, I am well on my way!
But I caution you others here and help spread the word, my recent posts on Gadolinium contrast in MRI’s Brarium in swallows andFluoroquinolone antibitoics (I was given DOXYcycline for LYME the FQs were for sinus surgery given with a steroid which is a no-no!! since 20/July my surgery was AUG 29th) will attest to what is going on and we need to stand together to get it right in some ways that we re able to !

Stay safe! good luck!
Cathy

Tala

I am a chronic pain sufferer following a MVA in 2000 that broke my neck at C5, my back at T3 and cause injuries to my lumbar region as well as other significant ones to my common peroneal nerve which was severely “bruised” which doesn’t quite convey what happen. I was originally put on panadiene forte which help for a while. As the pain progressed I was changed to Ordiene [an oral morphine] by my then doctor. He also prescribed valium and anti-depressant medication. It helped with the pain but it was also self regulated and as anyone who has been in chronic or severe pain knows, when we are in pain, if it is available, and with no risk of being in worse pain tomorrow because we have none left, and sometimes even if that will be the case, we will take medication. And I did, and before I knew it was up to 25mls a day, now before anyone says that isn’t much. Each liquid ml contains 10mg of morphine. Sometimes I was taking more, not less. Without question this my dr. wrote up repeat scripts to the tune of 4 x 200ml bottle a month and 2x 50 tablets per bottles of 5mg valium. Firstly I agree 100% with what was written in the above article and its responses, mostly. And maybe she was been tested as a drug abuser not a drug taker….I don’t think to pain patients I need to explain the difference? However said though maybe she didn’t pass the “test” but as pain patients in a society that can refuse us care for being loud, arguementaive, beligirant, etc we are taught to be docile on top of everything else. and before a lot of you who haven’t been through something similar with your pain dr respond telling me what a dream my dr must have been, please read on. And you are right by the way, it was…..until the dream turned into my nightmare. We were travelling almost 900klm round trip a month to see the Dr. have any check ups, etc. This occurred for a number of years, the reason we ended up travelling so far is because we thought he was a fantastic Dr. that also got what a hypocritical country that Australia was becoming for legit pain patients. Wow could I have not been more wrong eventually…for now though everything maintained this treatment. The reason I was seeing a doc so far away was he had originally been working at the practise near where I was living, as we owned our property and it wouldn’t be easy to sell as be this point it had been quite a while since I had been able to do anything with the large acreage we had no choice but to follow if we were going to not discontinue with a treatment that had proven successful. Jump forward a number of years. With no review of or change of treatment. And major changes to… Read more »

Carole, another CRPS'er

That is absurd, too much paperwork? Lazy & not caring, & perhaps as another said, testing you.
Oftentimes when a doctor asks which antibiotic works best & you answer without hesitation they write out a script with no funny looks, no judging, no hesitation. When it’s a drug that helps with pain, it’s completely opposite & a plethora of judgements.
I think the McGill pain scale should be used much more, some doctors don’t even know what it is. The questionnaire that is used with it is extremely helpful & would probably help with weeding out drug seekers better than the methods they are currently using, which amounts to their personal judgement.
I have CRPS mostly in foot & ankle but does go up to the knee. I too have had to endure some horrible things, as many others have. I’m sure we could all write a book.
Best to all with chronic pain.

mims

you need to report this tothe patient advocate at the hospital. you must be a thorn on their side,and be assertive. have rsdsa send you paper work that tells about RSD, about RSD protocol in the ER,and the medications that are prescribed,et al. I am so sorry hun. It is so sad,that our pain is considered “trival” or :not that bad”,when at a 7. At a 7, most have a hard time concentrating, speaking, communication,etc. I would most certainly report her to the AMA and when you speak to the patient advocate let them know you feel a call to jchao, is in order. they generally bend over backward when you mention jchao. also you can call social security and tell them. they do not like to see re admits,within 30 days,because the ER did not do their job. we must stand up to these bullies.

Marcia Carson

We are now faced with a pain scale of 0 thru 5 which is even worse than the 1 thru 10. Also when I present to my pain physician with a pain level of 7, he says that is pretty high pain level. That proves the sujectivity of the scale when your doctor said 7 was not very painful. When the doctor said 10 would be the worse pain I had ever had, I took him verbatim. Then he told me that a 10 would be what a person would feel if their skin was burned off. Well, I haven’t had my skin burned off and he said a 10 would be the worse pain “I” had ever had. My worse pain would be labor or a broken bone. Well my pain is not as bad as labor, but is worse than a broken bone. I figure a 7 or 8 is pretty reasonable for my pain rating on a daily basis and sometimes, it is higher.

ginbug

I do not believe that it was about the paperwork as I believe she was testing you and when you told her what you needed, you failed her test and therefore she labeled you as a drug seeker! I completely agree about the pain scale as it is a joke and cannot convey anyone’s pain and many docs will use it as another tool to determine if you are a drug seeker. I have had docs and pharmacists say and do awful things to me and because my chronic pain issues are VERY effected by stress and emotional distress, they with their actions & words keep me in a whole lot more pain and misery! The 1st thing they should do is to change the guidelines for determining if you are a seeker. Right now it is impossible for any chronic pain patient to not be labeled as a seeker. Some of the flags are: If a patient goes to the er more than 1 or 2 times in a year for non injury pain. If a patient asks for a pain med by name and/or states that other non narcotic pain meds does not work. If you ask for an increase in the amount after a short time. If on the pain scale you indicate that your pain level is still high despite that you are on pain meds. This is only a few of them to give you an idea about how we are all looked at. They have also done many studies on these out dated & useless guide lines and found that not only do they not help in stopping drug seekers; but have made docs & nurses very biased and judgmental, especially in E.R.’s where now legitimate patients are made to suffer! So not only are patients afraid to be forthcoming w/ their docs about pain, it also discourages people seeking help for new or worse pains for fear of being labeled as a drug seeker and be looked at and treated as a criminal! There are always going to be those that abuse drugs no matter what is done and I understand the need to be careful; but it has gone way too far! There are many simple common sense tools for helping weed out most of those that truly are seekers & abusers; but they are not being used as they should be & it has caused so much suffering that I promise will get much, MUCH worse if things do not change! I was born w/ my illness & have no idea what it feels like to be pain free; but I know too well how it feels to be treated like a junkie, humiliated, abused, looked down upon, disregarded, not listened to, and just generally treated as subhuman for something I did not ask for nor have any control over! I would bet everything I had that if those in power could spend just 1 or 2 days in my body… Read more »

Jerrye Lail

Amanda, I know your frustration. Once early on before I received my diagnosis of RSD, I also had to make an ER visit. I heard the doctor assigned to me talking to another doctor about my toe(my right great toe was the center of the RSD). The doctor stated that I was carrying on as if I were dying, and that there was no blood in sight anywhere. If I had not been hurting so badly, I would have taken her to task for her rude uncaring remarks. Instead I promised myself that I would never be treated by that doctor again under any circumstance. So far, I have been able to keep that promise. As you stated, if you have not been there, you do not understand the depth of pain from RSD. God bless you. I hope that you are able obtain remission soon. That is the only thing that has made me half sane again.

Were you given any MRI’s with contrast for your ankle? I developed RSD/CRPS after many MRIs with contrast for Lyme and other health issues, I have high amounts of this drug in my body 6 yrs AFTER last MRI with contrast, a positive blood/serum dx of Systemic Sclerosis and docs won’t admit they POISONED ME IATROGENICALLY, with not only Gadolinium but Fluoroquinolone antibtiocs as well as having barium stuck in me from a swallow study casuing additional pain & suffering, since when are all these drugs and imaging agents supposed to stay in our bodies, when we are told they CHELATE From bodies? trying to stay healthy is virtually impossible these days! nto to mention how much radiation are we filled with?! http://www.auntminnie.com/index.aspx?sec=prtf&sub=def&pag=dis&itemId=106037&printpage=true&fsec=sup&fsub=mri