Chronic Pain Patients—Stanford Wants To Hear What You Think

Chronic Pain Patients—Stanford Wants To Hear What You Think

stanford_medicine_logo Editor’s Note–April 3. Stanford University said it has received the maximum number of responses to its survey, and is not collecting any more data. Dr. Sturgeon thanked the National Pain Report and said  “this was really a terrific response by your readers”. He also said that he would be keeping the National Pain Report informed about the results of the survey as they become publicly available.

Dr. Drew Sturgeon, is a post-doctoral fellow at Stanford University, who is continuing his resilience study of chronic pain patients. He asked the National Pain Report if we would allow him to ask our readers to fill out a follow-up an anonymous online survey about chronic pain. Here is his column and a link to the survey. Let him know what you think.

People with chronic pain face many challenges, including greater problems with physical health, higher risks of mental health disorders such as depression and anxiety, and increased rates of job disability. Traditional research on chronic pain has, perhaps understandably, focused on the many problems that chronic pain can cause.

However, focusing only on the problematic nature of chronic pain misses an important point: most people have important goals and interests that they want to pursue, even if they are suffering from chronic pain.

Research suggests that many continue to work, do not show high levels of depression, anxiety, or other psychiatric problems, and lead satisfying and fulfilling lives, despite the presence of a chronic pain condition. They are resilient.

My colleagues and I at Stanford University are seeking to understand how some people are still able to function at a high level, despite having chronic pain.

We believe that resilient individuals may interpret the meaning of pain differently, may behave differently when they are in pain, and may have different emotional responses to pain — all of which help them to remain healthy and functional.

By understanding resilience in chronic pain, we hope to identify and treat others who may be struggling with their own pain.

The Stanford Systems Neuroscience and Pain Laboratory (SNAPL) is currently looking for people with chronic pain to complete an anonymous online survey, to help better understand how people cope with their pain conditions and how to better meet their needs.

This study is the second phase of a survey development project we posted in the National Pain Report in January of this year. Participation in our study involves answering multiple-choice questions about beliefs about pain and strategies for dealing with pain, as well as questions about physical, emotional, and social health. Responses from this survey will help us to determine whether our questionnaire can be used to effectively predict healthy functioning in people with chronic pain. Participation takes between 30 and 60 minutes.

If you are interested in completing this online survey, it can be accessed using the following Internet link: https://redcap.stanford.edu/surveys/?s=X7NTKF3DYT .

Alternatively, you can ask to be sent a survey link by emailing me at jasturge@stanford.edu or by calling (650) 724-8783.

Dr. Drew Sturgeon

Dr. Drew Sturgeon

Dr. Drew Sturgeon

Authored by: Dr. Drew Sturgeon

There are 11 comments for this article
  1. david at 1:48 pm

    its a shame that Dr. Sturgeon acts as if people in pain are mere functionaries that are to serve the curiosity and occupational interests of researchers. There is no regard for what Kant called the “kingdom of the ends”.
    Peoples pain should not be exploited by researchers. Its a shame that institutionalized researchers have an institutionalized perspective on pain and cant fully hear nor fully respect the concerns of people in pain. To detort, sublate, exploit the pain of others for some “research” is not going to do much to advance the cause of people in pain being treated well.
    It is time for universities, researchers, doctors, professionals, and experts to critically reflect on their practices and respect that their cherished views and values have done oh so little to help people in pain-and, it seems more clear nowadays that the voice of people in pain is more mute and meaningless and distant as fading stars to professionals, experts, universities, etc -then in the past.

  2. LLewisHouston at 11:58 pm

    I’m not sure what the point of this survey is either. I don’t see anywhere here that mentions medications, in response the the person blogging here. While there is a national issue with legitimate pain patients and all other kinds of legit. patients being denied needed medications (Schedule II) this does not seem to be the point of this particular survey, fine. It would seem that it is trying to determine if one’s state of mind reflects or is reflected upon their pain. Chronic, intractable, degenerative pain is for life and it does get worse as one ages. I studied ballet for 21 years of my life before becoming disabled just before I turned 30. I am now almost 55. 25 years of living in pain every single day of my life, 24/7. No, unless someone actually knows what this feels like, they will never, ever be able to understand. Even those who actually live with us do not understand. I didn’t have a clue either until it happened to me (MVA). Yes, they can pin and ‘glue’ people back together but they can’t help you actually live out the rest of your days. I’m sure many of us wish they would have just let us go to our Creator. I have, but i do practice positive thinking and definitely do rely upon my spiritual guidance, Jesus Christ, for my strength and salvation. And I must also rely upon my necessary medications in order to have any kind of life outside of laying in misery in my bed, unable to even walk around the house, much less walk my dog around the block. The best I can do is to try and keep my body, mind and soul clean and as healthy as I can do. Proper nutrition, rest as I can and try not to overdo it if possible, and walk my dog in nature every single day if I possibly can in order to stay fit and keep my muscles and bones as healthy as I can. Both of my feet and ankles have been broken and are anatomically deformed. As is my left arm, titanium elbow, spinal stenosis in my neck and lower back, herniated discs in neck and back, ankylosing spondilosis, lordosis, my left leg is now shorter by 2.5 inches, so that exacerbated the damage in my neck and back and hip and feet/ankles. And head and facial injuries, replaced cheek bone and nose that was slashed off of my face, a fusion in my lower back, ulnar nerve damage in left arm and hand, nerve damage in my feet and hip and neck. And anxiety and PTSD, fibromyalgia, chronic fatigue. Life is not easy even though I am properly medicated and do have a very good, compassionate and highly qualified team of doctors that work with me, including a psychologist. I try to keep it upbeat and show compassion to everyone, spread a smile every single chance I get, and love my animals and pray that I can be able to take care of them for the rest of their days. I ask for very little out of life. This condition has definitely had an adverse effect upon my romantic relationships; I am newly single once again. Life must go on, no matter how difficult. It is in God’s hands and I thank Him every single day and I do pray for all of us.

  3. John S at 8:07 pm

    Typical survey for us ” pain cry babies ”. I was looking for the – do you take any pain medicine, this survey is for those that are not on any medication. Its funny that the recent study shows that Tylenol has no effect for pain yet every OTC medicine for pain. flu, stuffy nose and just about everything, has Tylenol in it – dam, a BILLION $$ industry might be in big trouble.

    I’m off topic and yes the first thing I noticed – these are all basic psych questions. I do agree that when I get super stressed out my pain is worse but that is very seldom and goes away quickly.

    Back in the late 80’s after my second back operation I was labeled a DRUG SEEKER because I complained of pain 2 months after surgery and that wasn’t normal because most get better post op. My new Dr. sent me to a Pain Clinic for 4 weeks as an inpatient and I decided I would try it, maybe it is me and maybe I am a cry baby.

    It was 8 hours a day of group therapy, PT, Bio Feedback/ Self Relaxation, Occupational Therapy, walking, weight lifting, but mostly it was based on how to find that special place to focus on and just let the pain slip away. I did feel better and I was getting in better shape but I noticed the more I exercised there was a shooting pain down my left leg and it got worse and I got worried. The Dr. in charge was told about my increased pain and he called me into his office to have a look at me. After a 2 minute exam he told me I was fine and I should Tuff it Out – There’s nothing wrong with you John is what I was told by this guy.

    I did my best to go along and believe it was in my head and my head could win over and beat the pain. I kept in up, all of it for a few more days for as long as I could go I kept trying and pushing myself harder and harder.

    In my last week the pain became unbearable – I can only compare it to a Hot Steam Iron placed just above the skin of my leg and then the Steam button gets hit; steam is hot folks. I went right to the Dr. and he told me this; John I know you think it hurts but there is nothing physically wrong with you ” – I’ll never forget that. Well the pain was so bad I was kicked out of the program for not going to occupational therapy, I just couldn’t do it the pain was overwhelming.

    A few days after I left the program I went to the Cleveland Clinic to see a neurosurgeon. He did a MRI and then a Myelogram and the next day he operated on me. After the procedure was over he came to see how I was doing, he sat on the edge of my bed and said ” John I don’t know how you even walked in the door the day you got here ” I said what do you mean and then he said; I have never taken out a piece of disc matter the size I took from your back, it was as big as my thumb nail and it had embedded into the nerve root so the pain had to be unbelievable. God only knows how pissed off I was along with my wife and I thank God for my wife every day.

    What I learned from this experience is this; never give up and never quit, I am never out of the fight and its NOT IN MY HEAD. That was back in 1987, over the next 6 months I had two more operations. Turns out, the disc had shattered into 5 sections and they would hide from the MRI Scan and be found when a Myelogram was done.

    To date now I have had a total of 11 or 12 operations; one might have been just a small procedure.

    I have severe spinal stenosis bi lateral at multi levels / severe arthritis, bone spurs, scar tissue, the fusion at L4 L5 has a nerve root trapped between the screw and the bone. From C3 down to L5 S1 – every disc is either bulging or herniated – drop foot – severe nerve damage multi level and I was told my spinal nerves were like a bundle of burned wires and all disfigured and inflamed.

    I woke up one night screaming from the burning in my leg; it felt like Hot Coals were placed on my skin and then removed after about 30 seconds.

    My pain isn’t in my head and its not going to get fixed by learning to control my stress. Its ACUTE, CHRONIC & PROGRESSIVE pain that will one day cripple me, according to my Dr.

    I’m sure there are people with pain that be helped with some of these other modalities but those of us with the – I would kill myself pain – we need something a lot stronger just to get dressed.

    Now there is a mass attempt to take away the drugs that work and we are to live on – relaxation therapy and stress control with some meditation on the side. I don’t drink alcohol and I don’t use street drugs and my ulcer prevents me from using NSAIDS so if they ever take away these – drugs that work – I am totally screwed and that my friends scares the hell out of me.

    We are Never Out of the Fight,

    John S

  4. TRUDY M at 4:01 pm

    yes-for a long time I stayed working despite a very high level of pain, but it wore me down a little at a time until I could no longer manage it. I think you are all trying to find a way to say-“oh ok-this is how you suffer-you dont need pain meds” but thats a crock

  5. paita at 12:04 pm

    I don’t know if it was my computer,,but it psychological,,,not physiological,,,but a few other points here,,This ,”resilience,”issue this young doctor speaks of,Im sorry,,this really really shows his lack of knowledge here, Enlightenment coming;;;;;its not a question of resilience,,,its a question of choice,,,we have no choice but to endure our physical pain,,what are we going to do,,say,,,, stop it broken leg,,stop hurting,,or stop M.S.,,stop hurting,,??,we have no choice but to endure the physical pain,their is no other choice,unless u get medicine to help,,,,,we didn’t ask for physical pain,,,we just have physical pain from a physical condition,,many different physical conditions,,,Its not a resilience thing,,we have no other choice but to endure,,,some choose to end their suffering via death.My pain doctor always told me ,,emotions do not cause physical pain! And they don’t,,,now physical pain,,can cause emotions,,but emotion never causes physical pain,,,its kinda like when u ask people is the glass 1/2 full or 1/2 empty????No,,,its filled to the middle!!.The only way we get to function is with pain medicines because physical pain is physical,,,,emotions do no create physical pain,,,i can’t ,”will” my leg to break !!!I can’t ,”will” my back bone to break,can I !!!!,,,I can’t ,”will”,,, my chronic physical pain to stop!!!! The premise of this doctors comments,,that someones emotional interpretation of their physical pain is DANGEROUS,HURTFULL AND FOR ME INSULTING…,,,,NO-ONE CAN ,”WILL” a broken leg,,no-one can ,”will” a broken back,,,so why would anyone think we can ,”will” our physical pain away,,,emotions do not cause physical pain,,,Im sorry,,does depression,, cause a broken leg??U want to know where the resilience comes from,,it comes from getting relief from our physical pain with medicines!!!The medicines reliefs the physical pain enough to endure another day,,,Our medicine,if enough medicine is given,, allows us to function everyday,,and if we are functioning of course were happier,,its doesn’t mean our physical pain isn’t there,,it means our amount of milligrams of medicines has lessen’d the physical pain enough so we can endure some functioning,,thats all,,plan and simple,,its no great mystery,,if it physically hurts less,,we function more,,and the more we feel useful to our families,and friends,,the happier we are,,,its called BASIC HUMANITY,,,I am learning sooo much,,what we chronic physical pain people take as ,”self evident truth”,,as a ”given” in our world,,people who do not live with physical pain everyday,,,have no clue,,even doctors,,that are not in the field of chronic pain,,Those who don’t understand our lives,,try this little exercise,,have a friend pinch the back of your arm,,where it really hurts,,ok,,,whilest your friend is holding that pinch,,,drive a car,,go to bathroom,,shower,,brush your hair,,take care of the kids,cook dinner,go to work,,all the while with the back of your arm being pinched in physical pain,,try it for 24 hours,,then get back to me,,,but remember,,1 big difference is,u can stop pinching the back of your arm at any time,,,we have no choice but to endure that physical pain forever,,,,,,

  6. Maureen Molina at 11:50 am

    Filled out survey and got to the end and could not get numbers in for pain level. I have saved in bookmarks, please advise.

  7. Roxhannah at 12:53 pm

    Hello. I am interested in your study. However, I have a couple of questions. I live in Canada, does that qualify? And it is my 11yr old daughter, who lives with me, who has the chronic pain. Does she qualify to do your survey?

  8. RICHARD at 11:46 am

    The D.E.A. and F.D.A. have become the U.S. equivalent of Gestapo S.S.. Loyalty purges, secret courts.The D.E.A. was a bad idea to start with and has only gotten worse ever sense. States are able to do their job. They don’t need the D.E.A. I don’t need the D.E.A. You don’t need the D.E.A. .Nobody needs the D.E.A. They are misappropriating and commandeering billions of dollars of public funds that America can no longer justify..Their funding needs to be cut by,at least, ninety-five percent and all need to be restructured to a much smaller and much more restrained gang of Authoritarian sociopaths.. This is a group of renegade law enforcement completely out-of-control .and way over-the-top.They are using the war on drugs as a smokescreen and a ruse to subvert our Civil and Human rights and increasingly more as a ruse to seize cash and property in their war on the American people.Also, through gross incompetence, have made it nearly impossible for a pain sufferer to get treatment without being thrown in jail.
    It’s not about drugs anymore.. The .D.E.A. obviously could not care less about your pain.. That is one problem with Authoritarian sociopaths they lack that part that makes them human. The drug programs are fine in and of themselves, an advisory or educational however the Authoritarian have seized them and are using them as a power and political platform.to totally tyrannize and dominate this society.Their mismanagement and unwise misuse of their responsibility has nearly, completely destroyed the science and research of anything they don’t approve of. If society is to survive these people must go. The drug war is just a ruse. Other country’s that allow easy access to pain medication do not have a serious drug problem. It is these government villains here who are orchestrating this farce.

  9. paita at 7:18 am

    ok ,,got past the 1st page,,I am kinda disappointed about this survey,,,,to me,,its asking all physiological questions about a physical condition, as if our physical pain,has something to do w/us physiologically,,,,soo for me..its very disappointing, that 1nce again,,someone deems our physical pain a physiological, ‘in the head” issue,,,been that route,,and what it got me,,was a collapsed lung,17 cardiac ablations, spinal cord surgery from T-1 thru T-9,,,,large tumors in my spine,broken back from T-1 Thru T-9,permanant scaring on my spinal cord,permanant scaring on my heart muscle,and a permanent broken back,9 times,and permanent scareing on all muscle tissue in my thoracic cavity,,,soo,,,for me,,take your physiological ideation,that ,”physical pain is in our heads,” and bleepen@#$!!!!!,,,,,,thank u for your time,,,,,paita

  10. paita at 6:59 am

    u know I clicked to take the survey,,the 1st page,,kinda surprised me,,it was basically asking us if we lead functional lives w/out medicines,,,example,,”do u let your pain stop u from functioning????Well yes,,if I don’t have my medicines,,,soo has anyone gone any further then the 1st page and does it ever ask about our medicines+functioning???thanks ,,paita