4 Problems With The Pain Scale

My life has been filled with a lot of pain and many different types of pain. In the past 7 years, I have not had a single day without pain- not one. I have good days and bad days, but even the good days are filled with pain. Aside from the pain itself, the pain scale is one of the banes of my existence.

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1. It Doesn’t Work For Chronic Pain

Not only is it a pretty terrible scale for measuring pain in the average person, but it is even less effective for people with chronic pain.

I’ve had a lot of people when talking about pain, make the comment “but you’re used to it.” This isn’t exactly true. My pain is actually worse and more unbearable than it has ever been before. Pain doesn’t hurt any less because you are used to it. What you really get used to is living with it. You get used to pretending you don’t have pain, using coping methods such as distraction, and hiding the pain.

If I had the average response to dislocating a joint that the average person did I would be crying, distorting my face, and screaming far too often to navigate this world. So I’ve learned to breathe through it and even smile. Only people very close to me can even tell that something is happening- and often they can’t even tell. Developing this coping mechanism is so necessary for living with chronic pain and such a problem at the doctor’s office.

I have had at least a dozen kidney stones. The pain of a kidney stone is slightly worse than my average Ehler’s Danlos pain, but not enough that I can easily shed my coping mechanism of hiding my pain. One night I began to pee blood and couldn’t keep fluids down so I went to the ER. I told them I had a kidney stone- I know full well what they feel like by now. The nurse told me I couldn’t have a kidney stone, “Even giant footballer men roll into the fetal position from kidney stones.” They did a scan and, of course, I had a large kidney stone. I eventually got treatment, but first was told I wasn’t in enough pain. It was infuriating and it has happened more than once.


It has gotten to the point where I almost feel like I have to try and visibly show the pain I feel inside, but it is still so difficult.

2. It Isn’t Standardized

Another problem is the scale means something different to everyone. I’ve been told 10/10 is the worst pain I’ve ever felt and also told that 10/10 is the worst pain I can imagine. These are far different measurements! For the same pain, I would rate it as a 8 on the first scale and a 3 on the second (I can imagine some horrific pain).

3. We Can Only Compare Pain- Not Imagine It

Generally, we can only rate our pain based on comparisons to other pain we have actually felt. That is the best way to understand someone’s pain. However, many people are at the extremes- they have either had a fairly pain free life or have experienced immense pain. Two people’s 7/10 may be wildly different. The scale does not work as a stand-alone tool without considering the pain patients have felt in the past.


4. The Scale Is Used Against Patients

Another problem with the pain scale is that it is commonly used by nurses and doctors against the patient. If you answer too high on the pain scale and they can’t see the cause of your pain, they will assume you are lying to get drugs. If you answer an 8 and then check messages on your phone (even though distraction is one of the best solutions to pain) they will assume you are lying. If you answer too low they won’t take you seriously. Instead of using the scale to help treat patients it is often used to hurt patients.


So if the pain scale is the problem what is the answer? Medical professionals need to listen to their patients when they describe their pain and take a look at their medical history. The pain scale needs to be taken with a grain of salt when used and needs to be standardized. Medical professionals need to make up their minds. What is a 10/10? Decide and then stick to it!

You Don’t Owe It To Anyone To Try Every Treatment

Two weeks ago I went in for an injection in my back. The doctor, instead of being focused on my pain and comfort, decided to use me seeing him as a platform to push alternative medicine on me. By the end of my time with him I was sobbing because I was so frustrated from not being heard. Since then I’ve come to the realization that I don’t owe it to anyone to try a treatment especially one that has not been backed up by science. I will no longer accept health care “professionals” who are judgmental about me not trying hard enough to cure myself.

In the beginning, 8 long years ago, when I first got really sick I tried everything. Every possibility of improvement I jumped on. Every time I got my hopes up and had them crushed again and again. As if that disappointment wasn’t enough, when these things didn’t make me feel all the way better it was always my fault. I must have not been following the diet close enough. I wasn’t practicing hard enough. No one considered the possibility that the treatment, one that hadn’t been verified as successful, just didn’t work.

When alternative medicine gets pushed on patients it is the patients that get hurt. Dealing with having your hopes crushed over and over is hard enough. Dealing both with that and with feelings of inadequacy when you are trying your best is even worse. In real medicine, if someone takes their meds and they don’t work they don’t get blamed for not trying hard enough. When one blood thinner doesn’t work me don’t blame the patient for not trying hard enough to thin their blood; instead the dosage is adjusted or a different medication is used. Real medical professions realize that medications and treatments work differently for different people.

You can bet I will be writing more on the subject, but here are some ridiculous highlights that came from my surgeon:

“Just try an anti inflammatory diet. I did and I feel like I’m 21 again!”

Talking to someone who has been in a ridiculous amount of pain since they were 18 about how you felt 21 is insensitive. Youth does not always mean health.



“You’ll lose 21 pounds in 21 days.”

What are you an infomercial?!


“Inflammation is the cause of all your problems; you just need to cut it out.”

Actually, my genes cause all my problems. No diet will change that. Also, inflammation is not always a bad thing. It helps us heal, it lets us know when there is a problem. Saying an anti-inflammatory diet will fix everything is oversimplifying things. Didn’t you go to medical school?! Or we using “doctor” in a looser sense?



“Do you eat gluten? You haven’t cut it out. That is your problem.”

I have cut it out. I tried that. Do you think you’re the first person to tell you that? Cutting out gluten is not the solution to everything.


“People drive from Kansas just to get this list, but I’m going to give it to you for free.”

Great a list of potentially dangerous supplements and unwarranted “medical” advice. My favorite.



“Actually there is an entire edition of a journal dedicated to this.”

Yes, there are articles in academic journals about anti-inflammatory diets. They are written by chiropractors and nurses who monetarily profit from people trying anti-inflammatory diets. There is almost no information on any actual science behind it from credible sources. Just because the article is in an academic journal doesn’t mean it is reliable.


“You need to get off opiates.”

He said this one to me as I was sobbing in pain in front of him. He is not the doctor that manages them, it was not his business. He also said this after telling me that the nerve in my back was pinched and asking if I had surgery scheduled. When someone dislocates their shoulder they are given opiates. EDSers deal with that pain daily all of their body, but then are judged for needing pain relief. I haven’t slept a good nights sleep in four months due to pain, but yes I’ll stop opiates right away.


“You need to try biofeedback.”

I have. I even use some techniques for relaxation, but it didn’t cure me.


“You just didn’t see a good one.”

I saw one who is an expert to my condition.


“You have to practice more.”

I was practicing even more than they recommended. I tried at it. I really did, but when alternative medicine fails it is always the fault of the patient- not the alternative medicine.


“I treat people with EDS all the time.”

He had no understanding of EDS, prescribed me muscle relaxers (contraindicated to EDS), and obviously had no grasp of the condition. I really hope he was lying here and that no one with my condition has had to deal with his ignorance.


“Just try what the doctor is recommending.”

This one came from the judgmental nurse on staff. She said this after the doctor was done spewing his pseudoscience and after I had already said that I had done the research and there wasn’t science to back it up AND that I couldn’t eat most of what is in their proposed diet. Chronically ill people don’t deserve to be shamed for not trying things that are not backed by science.
Life with a chronic illness is hard enough. We don’t deserve to be harassed by people for not trying a treatment. I’m not saying that all alternative medicine is evil. For example, massage has helped me wonderfully. What I am saying is that people with chronic illnesses do not deserve to be harassed or judged for not trying hard enough for not trying every treatment under the sun. 

Defining Yourself By Your Disability and Seeing Yourself As Sick

Defining Yourself As Your Disability

 This article makes a really good point I have  been thinking of lately. People should not demand someone with a disability to look at themselves in whatever way you see fit. Don’t complain that they talk about their illness too much. My disability does not define me, but it has shaped who I am. I have to deal with it every single day; it is a part of my life and I will talk about it if I want to.

Firstly, telling people to not “define themselves by their disability” is insulting because it implies that is how they do define themselves. For me and for most people this isn’t true.

Secondly, telling someone to not define themselves by their disability or to talk about their disability less is just ignorant. The people you see every day, the job you go to every single day- those things shape who you are. So who are you to say that a something I deal with every minute of every day should not influence my life or how I see myself?  When you hate your job you are probably going to talk about it a lot. In no way does that mean you are defined by that feeling, your crappy job, or how you deal with it. Talking about something that affects you so profoundly absolutely does not mean you are “defined” by it.

Seeing Yourself As Sick

While at the Dysautonomia International Conference a Dr. Paola Sandroni, a neurologist and expert in POTS, claimed that IV fluids should not be given to patients because it makes them think of themselves as sick*. Well, my question to Dr. Sandroni: how is wanting IV fluids to feel less sick going to make me suddenly see myself as more sick?! IV fluids make me feel less sick and more normal. Do you want to know what does make me think of myself as sick? Fainting. Pain. Brain fog. Dizziness. Nausea. Severe tachycardia. Vomiting. Chest pain. Our symptoms make us feel sick and think of ourselves as sick; treatments make us feel better and more normal. Stop demonizing our attempts to feel better.

I have also heard “friends,” family, and medical professionals go even as far as saying that you would feel better if you didn’t focus so much on being sick. Just stop talking about it and it will go away. In some cases, I am sure this is true, especially with patients who have both anxiety and POTS. Most of us do not. Just as many others, I don’t see myself as weak and sick. That is not why I talk about my illness. In fact, I see myself as strong, and a fighter for what I go through every day and keep on going. I recognize how hard it was to ask my friends and family for support. I recognize that I am doing everything I can to raise awareness to hopefully limit both the suffering of others and myself. If I need support to deal with this really tough thing then you can bet I will talk about it, and I’m stronger for that fact. You can’t silence me by demonizing the way I get support and deal with my illness.

*All the other doctors at the Dysautonomia International Conference were wonderful and much more understanding of patient’s struggles. This was just one negative experience of an overall wonderful weekend.

Do No Harm: A Ranking of the Harmful Things Medical Professionals Have Put Me Through (Part 1 #13-8)

The medical profession is supposed to be about helping people. I have been lucky enough to have some wonderful, caring, and compassionate health care professionals. I have also had some absolutely horrific experiences healthcare professionals. Dealing with doctors and nurses who don’t understand and make my life more difficult has been one of the hardest parts of having a chronic illness for me.

These professionals go to school for years and we are told to trust their medical expertise. Blindly following advice from a bad doctor can get patients killed- so should we blindly and always follow their guidelines? Many of us with chronic illnesses have been through the experiences I describe below so it is no surprise that some of us have anxieties about going to the doctor and don’t always trust those in the medical profession.

We turn to these professionals in a time of great need and commonly aren’t even treated as human beings. Unfortunately, I know I’m absolutely not alone. Stories of terrible and harmful doctors and nurses fill my support groups on a daily basis. So here it is- a list from least harmful to most harmful (in my personal opinion) of what medical professionals have put me through in the past six years:

13. Letting Their Ego and Arrogance Get in the Way
We have all heard of them, doctors who think they are god’s gift to the earth. They went to medical school or nursing school and now know everything and are never wrong. There is no way a patient could help them understand their condition or offer any input into their personal care. After all, this information is coming from a lowly patient.

kanye8When these arrogant doctors can’t easily find a diagnosis suddenly the patient is the problem. They will tell us we need to be more positive, try harder, and better comply with treatment (even if we already are).

“Have you tried like… not being sick?”

Other egotistical doctors will tell patients that they are are faking it for attention, that it a psych issue, or that their patient’s pain tolerance is just too low (see #10). These doctors are on the patient’s side until they can’t figure something out; then they turn into villains in their patient’s medical care.

In Helpful Medical Professionals:
One thing I look for in doctors is the ability to say “I don’t know.” Some of my conditions aren’t understood well so I don’t expect my doctors to know everything about everything to do with my condition. Admitting they don’t know the answer to something means they are more willing to ask a colleague or do some research.

12. Refusing to Research My Condition
I understand that working in the medical field is difficult and busy. However, if a patient seeks medical help and the medical professional hasn’t heard of their patient’s condition or only vaguely remember things from school decades ago it is essential to take the time to research their condition. Different conditions can change how medications work and need special considerations. If someone doesn’t know about a condition, does nothing to find out, and decides to treat their patient anyway they are putting their patient in danger and not giving them the best care.
 In Helpful Medical Professionals:
Medical professionals who are willing to research conditions they aren’t experts in are definitely keepers. These professionals actually care and it makes a world of difference in our care. If they get stumped they may ask a specialist for help, but they won’t dump their complicated patients.

11. Deciding You’re “Someone Else’s Problem”
It is common for complicated cases to be passed on from doctor to doctor. That is why some POTS patients have to see over 36 doctors to get an accurate diagnosis. Doctors commonly dump “difficult” patients with ridiculous excuses. I even had a doctor yell at me and tell me to go elsewhere. I had just moved and simply needed a doctor to prescribe antibiotics for strep throat. He did so and told me to work on finding a more experienced doctor because he didn’t think he could help me. Fair enough.

I chose this doctor so I could get in quickly while looking for a more experienced doctor (which can take months to years). He was good enough for what I needed in the short term. A week later I developed pleurisy. For whatever reason, this tends to immediately happen to me after colds, the flu, strep, and most viruses. All I needed was a steroid shot- I’ve been down this road many times.

The doctor absolutely chewed me out for coming back to him. I was too complicated and he wouldn’t treat me. When I explained I had an appointment with a much better doctor than him the next week and just needed help until then he realized what a jerk he was being. Needless to say, I did not go back to him.

One doctor who I thought really wanted to help suddenly made an 180 after I had been seeing her for months. In the beginning, she was so excited to help me and try everything she could. In the end, she decided to suddenly drop me. She later became an oncologist which seems like a terrible choice for someone so lacking in empathy.

Recently I had a pain management doctor tell me “they don’t manage chronic pain.” That’s the exactly the purpose of the clinic. When my case became complicated they just gave up and didn’t even care enough to come up with a reasonable excuse.


 In Helpful Medical Professionals:
Medical professionals who stick with complicated cases are hard to find. If you do find them, keep them around! Unfortunately, it is hard to tell if your new doctor, physician assistant, or nurse will actually stick around and not write you off further down the line.

10. Calling Your Pain Tolerance Low
Medical professionals commonly write off their patient’s pain as exaggerated or made up. In response to pain complaints, these professionals insist their patient simply has a low pain tolerance.

This happened when I had my wisdom teeth taken out. My recovery was absolutely dreadful and lasted weeks longer than it should have. I actually had to withdraw from school because I was so sick between dealing with my wisdom teeth and my concussion I had at the time. I woke up in the middle of the procedure moaning in pain- even with anesthesia. I am absolutely positive the oral surgeon hit a nerve during the procedure, but instead of admitting to her mistake the doctor told me I must have a low pain tolerance.

I was also told my pain tolerance was low when I had my pulmonary embolism (a blood clot in the lung) too.

“You just have the stomach flu and a low pain tolerance.”

I’ve had multiple doctors tell me I couldn’t have kidney stones because I wasn’t outwardly displaying my pain. They insisted that something less severe was going on and I was overreacting to pain by coming to the doctor.

“I’ve seen grown men screaming on the floor in the fetal position. You can’t be in that much pain.”

1 (3)They were obviously proven wrong. Of course, I received no apology. Patients with chronic pain get outstandingly good at pretending to not be in pain and putting on a brave face. For example, as long as I am under a 7/10 on the pain scale, unless you know me really well, you will never just how much pain I’m in (unless I tell you). Pain looks different in every person. This attitude is just ignorant.

 In Helpful Medical Professionals:
Medical professionals who actually believe their patients are hard to find. It is pretty easy to figure out early on if they are going to support you and believe you or dismiss your pain early on. Doctors who understand that severe pain doesn’t always mean laying in a fetal position screaming are the best doctors.

9. Believing You Are Just Not Trying Hard Enough
The first line of approach to treating POTS involves lifestyle changes. You can read more about them here. The lifestyle changes are not fun by any means but compared to my symptoms these changes were worth a try. For a while, I complied with every single suggestion. I was the perfect patient. When I didn’t improve dramatically, I started to get blamed for my symptoms not improving because I wasn’t trying hard enough. Often lifestyle changes alone aren’t enough to help manage a condition. I have since figured out what changes actually are beneficial to me and my doctors respect that. When a medical professional blames their patient for not getting better it is time for them to get the boot (assuming the patient is honest with their doctor).

tumblr_inline_npt6s4jAb81s0vf4f_500Most of us who are chronically ill desperately want to feel better. We will try nearly anything that may work to improve our condition. So a doctor blowing their patient off because the patient doesn’t get all better from what they suggest is absurd. Some patients are exceptions, but it isn’t acceptable to immediately jump to blaming a patient for treatment that doesn’t work for them.

In Helpful Medical Professionals:
I work out 5-6 times a week in an attempt to help my symptoms. Exercise is incredibly hard every single day. It is easily the hardest lifestyle modification to comply with. Pushing through severe pain, exercise intolerance, dizziness, and extreme tachycardia is a battle every single time I exercise. Having doctors who acknowledge the hard work I am putting into my health, whether through working out or otherwise, is incredibly refreshing. The best medical health professionals acknowledge the hard work their patients put in ( assuming they are making changes), not chastise them for not trying hard enough. One example of an awesome, supportive doctor acknowledging their patient’s hard work can be found within this lovely article.


8. Not Following HIPPA
All my illness began when I was 17 so for a while my parents were involved in my care and medical decisions. By the time I had turned 18, I was the expert in the family on my body and my conditions. My parents did research but know a lot less about my condition than I did. So when at 19 years old a medical professional called my mother to relay incredibly sensitive information (a test testing for cancer) I was livid. My mom called me right away to tell me the news, but playing telephone with sensitive information is unacceptable!

While this has been the most blatant example of my privacy being disrespected I have had other times in which my privacy has been violated. For example, lab technicians have taken pictures of abnormal and interesting test results that had my personal information on them and I watch them share the results with their friends. Unfortunately, not all medical professionals take privacy seriously.
 In Helpful Medical Professionals:
This one is simple- find doctors who respect patient privacy. We all have a right to have doctors who share medical information with only the people the we choose; it doesn’t matter if they are family. Life and death cases, in which the patient is unable to make their own medical decisions, are obviously an exception. In general, if a medical professional violates patient privacy, they need to be immediately reported to the medical board.

These are pretty terrible things to happen, especially from a profession dedicated to doing no harm. And it gets much worse! Watch for part two where I discuss the top seven harmful things I have witnessed from the medical profession.