My Story: I’d Like You to Meet Henry – My Chronic Pain

My Story: I’d Like You to Meet Henry – My Chronic Pain

By Katelyn O’Leary

Scans, labs, and x-rays rarely identify chronic pain and illnesses. Doctors cannot measure your pain with a ruler or a chart – they rely on us to voice the problem. But what happens when you can’t find your voice? When you are so worn down from pain, procedures and prodding that you lose your self-confidence and positivity?

In his book Explain Pain, Dr. David Butler examines how pain affects not only our physical bodies but also our emotional and mental capacities. Having negative thoughts or becoming emotional can make the pain worse, and Butler calls these “Thought Viruses.”

Thought Viruses

 

When you have an invisible illness, one that cannot be measured or diagnosed easily, you have to arm yourself with knowledge to fight the pain. Learning the statistics, the treatments, and the secrets behind the disease is how you learn to COPE. Because if you don’t, the fear of what could happen or couldn’t happen will consume you. One of the quotes on the “Thought Virus” image states “We can put a man on the moon, why can’t someone just fix this pain for me?” Spiraling into these “What if” scenarios only makes things worse, because these aren’t questions that can be answered with logic that helps us heal.

They say it is therapeutic to give your pain a name, and to address it and treat it, as it’s own entity. My pain is named “Henry.” Most days, I am trying to keep “Henry” calm and relaxed – and when that doesn’t work I sometimes get angry with “Henry” and tell him so (sometimes with profanity). The truth is, “Henry” scares the living daylights out of me and I want him to go away and never come back.

A good clinician can only truly manage “Henry”, in my case a pain management specialist and a primary care physician willing to listen and understand my condition. But to find the right doctors, patients have to be willing to take control.  If you think your doctor is wrong or not listening – say something. If you think you need a second opinion? Get one. Don’t assume one doctor has all the answers, and remember they are only human and can make mistakes.

Fighting the fear, the “thought viruses” takes so much inner strength and it can be debilitating.  But with the right people in your corner and a treatment plan that can adjust to the flare ups and the fluctuations in pain – you can arm yourself with the right weapons to keep going.

Take control

Editor’s Note: Katelyn suffers from CRPS and lives in Los Angeles. She earned her M.A. from Carnegie Mellon and works in the entertainment industry where she has the aspirations to be a writer and producer.

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Authored by: Katelyn O’Leary

There are 20 comments for this article
  1. Jean Price at 2:45 pm

    Donna and Marsha…Sheryl had a very valid point about seeking a second opinion…and doing this while you still have a relationship with your current doctor. And it’s best, I think, to not use another doctor in the same practice. I’d also suggest to only take in your X-rays, test results, and write out a brief time line of your issues and history….but NOT provide your doctor’s notes (even his/her name isn’t really important, or shouldn’t be!). You don’t want an opinion on your current doctor’s opinion! You want an opinion of what the doctor in front of you thinks might help. I think wanting another MRI is appropriate in both your cases. Donna…hospitals will often let you do a manageable payment plan with no interest or even negotiate the price when it’s a hardship. You might check with the business office or someone who could tell you. And being afraid would be pretty human and normal, I’d say…you’ve already had much to deal with and further function issues are always scary. I will join my prayers with yours to ask for you to get the help you need. And Marsha…often a recent fall or a big change or increase in pain, a change in whether it radiates or not, pain being unlike anything you’ve had before…these are all good reasons to do an MRI and I imagine a doctor would follow through and order one if you told them. I’m not sure if this fits what’s happening to you, but if it is—be sure and tell them the specifics. Physical therapists and chiropractors can often call physicians and reccommend an MRI if they think its warranted to assess further treatment needs or if they want it to protect you from harm. It’s not easy to get what we need….but we have to be sure to ask clearly for it and not just hope they will do what’s right. You’re the only “patient” you have to take care of…they have lots. So it stands to reason you know your body and your care needs very well and often have insight into what will help you and them. Good doctors usually rely on this. Unfortunately many have lost site of the patients’ importance in both diagnosis and testing/treatment decisions. Standing up for what we think is difficult, but so important. Hoping you will get what you need, dear. It’s certainly not asking for anything out of line, in my opinion.

  2. Donna at 2:21 pm

    Sheryl–thank you for the great idea. My problem at the present time is I literally have no money. I can’t buy groceries this week. My husband was out of work for most of February due to blood clots in his lungs. Praying for his health and that we somehow make it. I haven’t done taxes yet, as I’m afraid we will owe—taxes are not taken out of my disability and I didn’t pay through-out the year. Chronic pain patients—our struggles are real.

  3. Donna at 2:13 pm

    Martha—I hadn’t had an MRI in so long because I did not want surgery. My copay at the time was 50 dollars! Then the economy died and my husband lost his job. I am on disability and therefore get Medicare. I think they don’t do MRIs more than once unless you are going to have a procedure such as an epidural or surgery. MRIs are not cheap, even though you have good insurance. There DOES have to be some cost containment. I am curious–you mention that you need an increase in medications, but you say you decrease your meds. This seems counter-productive. I take my meds as ordered, yet still have pain. My doctor WANTS the MRI as it has been 7 years and my overall functioning has declined. My recommendation is to take your meds as ordered, not decrease them. At the 5 year mark next year, you may have better luck getting another MRI.

  4. Sheryl Donnell at 10:55 am

    Donna, try seeing different doctors as a second opinion while you search for a new doctor. You are always allowed to get a second opinion. That way, you can try out another doctor without leaving your current one. And I understand the bird in a hand philosophy. You need someone treating you. If you can’t afford insurance, you should qualify for reduced or free insurance through the government healthcare marketplace. It gets a lot of bad talk but my husband and daughter both have it and the insurance us great. It just depends on the plans you choose. Good luck to you.

  5. Martha Arntson at 8:01 am

    Donna & Jean, I’ve been trying to follow the comments here regarding this issue. I have requested MRI’s to be done or ordered through my Pain Management Doctor for months now. My last one’s were in 2012, before I had a Cardiac Stent placed which prevented me from having any MRI’s for 2 years. They keep refusing to send me for new one’s and I don’t know why? I have good insurance, I have no avenue to just Order myself an MRI? My issues have gotten worse over the past 2 years and I feel to adjust my medications accordingly to the increase in consistency in my pain level getting new MRI’s would be beneficial. What would anyone here suggest I say or do in order to get new MRI’s done on the cervical spine and Lumbar? I am at a loss here, I decreased my meds, I do everything I can to avoid meds, I do Chiropractic, Yoga, etc. No matter what I tell them, they still refuse to order me any testing? Should I change Dr? Thanks anyone who might have a solution for me.

  6. Donna at 6:12 am

    Thanks Jean. I have thought about changing, believe me. But, I am so afraid that what I have fought for, and what I have received, will be taken away completely by someone even worse. One of my problems is financial. I cannot afford to get an MRI, and I need 2. My last one was in 2009 and it was cervical. Now, I need a cervical and one on my back. It is 300 dollars for each. Flat plate x-rays show severe degeneration of my entire spine, bone spurs, annular tears. I have compression on at least 7 nerves in my neck with radiculopathy, according to MRI in 2009. I can’t imagine what they would find now.
    Anyhow, fear is paralyzing me. And I don’t think it is misplaced. I haven’t gotten any recommendations from others, because they’ve all had horrible experiences with their pain docs. To think they all get away with it, too.

  7. Jean Price at 6:08 pm

    Donna and Steve…the lack of adequate or even basic care you received is inexcusable. I know it’s hard to find new doctors, but you certainly deserve one who will do more than abuse you! I don’t know how to hold them accountable, but what do you have to lose if you approach them about it. Or just change…it’s not doctor shopping, it’s looking for a second, third, forth opinion or whatever it takes to get better care. I’ve been through an experience with a so called pain specialist years ago that was similar, and I didn’t go back. I have since found another doctor who actually takes his time and seems to believe me…that’s a big help! Unfortunately some anesthesiologist went into their chosen field so they could have very brief, superficial patient contact….yet they are now the ones running our pain clinics. I hope you can find the courage and strength to look for good care…and make the drive it takes to get to them. My doctor is an anesthesiologist, so not all of them are deficient in their relationship skills…and he is not a part of a hospital system, which I think helps with not having to be “managed” by the dollar from hospital decrees! Good luck with this. You have a right to good medical care, especially when you’re paying for it! I pray you will find it soon.

  8. Donna at 1:12 pm

    Steve–sounds familiar. Mine doesn’t sit down and is backing out the door the entire time. Then she has the nerve to bill for a comprehensive visit. I have decided some of these people are downright evil. Good luck to you.

  9. Sheryl Donnell at 11:05 am

    You nailed the problem! We don’t ask for help until we can no longer stand the pain. We do ignore it as much as possible. But, when the pain is so overwhelming and you are trying to do the things you love to “forget about the pain” and you still end up curled up in the fetal position sobbing, you need medical help. I remember the first time that happened to me. I was on my way home from work, early, to attend a school recital for my daughter I had been so excited about for weeks! But by the time I got home, I could not walk up the three steps into my house without crying out in agony. Tell me I wasn’t trying to focus on something else. That was all I was doing but still the pain won out like it does so often. Chronic pain patients try with everything we have to not think about our pain, to live as good and productive lives as we can. However, when the pain escalates so much that we cannot even move, we need help. And yes, I believe every doctor in this country should be forced to live with medically induced chronic pain, without medication for 4 to 6 weeks as part of their training, and make them continue working and functioning. Then see if they think we are just a bunch of lazy whiners who are drug seeking. I bet most of them are begging for relief after the first three days. And we live this 24/7/365.

  10. Steve at 9:53 am

    My pain MD/ fibro specialist ran me through a few meds, I failed, and on our fifth meeting said “you’re not a med kind of guy, try to find something online”. She threw my chart on the desk and walked out. The prior appt she left while I was speaking about a treatment. I asked what she would do in my situation and she said what she said fiver four months and five meetings, “don”t focus on the pain”, something I didn’t do for thirty years until it got overwhelming. Now I’m stuck on my own. My PCP is a good guy but helpless. Pain MD was least empathic, most arrogant MD I ever met. I sent her a nasty letter saying so and cc’ed to the hospital chief medical officer, FWIW. These people need to get a chronic pain disorder for a while to see the light.

  11. Martha Arntson at 2:07 pm

    FANTASTIC POST! I loved it! I downloaded the images to take to my Pain Management Specialist next month. She loves when I do some reading/research on my own so that I can be knowledgeable and informed as a patient!

  12. Katie O'Leary at 11:01 am

    Jean, thank you so much for your wonderful comment. I am so glad I was able to help you – and it is because of readers like you that I continue to do this. I just want to help and bring awareness to the world and to others.

    Billie: I’m not sure where you live, but there are government assisted programs that offer discounted meds. In Indiana where I am originally from, they have a medication program through “healthy indiana” that is income based. But no one should have to suffer because of financial issues. I am thinking of you and sending good vibes your way.

    To the rest of you – thank you for your comments and your responses. I truly welcome the dialogue and your input. I hope one day we can all find a way to deal with our individual pains – and continue to support each other.

  13. Jean Price at 9:58 am

    Donna…you’re so right that everyone finds their own ways of coping, and no one is an expert on anyone else’s needs. It’s hard enough to be an expert on on own! Faith is an important part of my life too, actually from right before my life changed so drastically. For me it’s a lifeline and helps me find joy within the struggles. I think everyone is spiritual, and we can each find ways of exploring and deepening this area of our lives when and if we want to. For me, religion is like a language to understand and broaden your beliefs and also a way to have and grow your relationship with God, or who ever you may choose to believe in. We are all so different with different paths and histories and families and cultures…so I think there is no “one size fits all”. Pain is a hard road…it helps me to have a constant in my life, and that is my faith and my beliefs. I’m glad you brought this up and I’m glad you have found it’s helpful to you too.

  14. Donna at 7:56 am

    Sheryl–very well said. Your comment says what we feel so often. Thanks for putting it into words.

  15. C Hawkins at 6:59 pm

    Billie Vasquez
    I’m so sorry that you are facing two terrifying things in life. Pain and insurance problems. It’s a shame that you have to select which care you will get. We all know it is wrong and that the government is aware if it but it seems that the ‘little people’ suffer and it’s not the ‘big people’s’ concern. I so wish there was something I could say or do to make life better for you and as I am battling pain and stubborn doctors I have little faith in the system getting better. I have seriously considered moving to a different country to escape this country that discriminates against pain patients labeling us addicts like those on the street. I keep stating that a pain patient who cannot get care from a medical doctor is being denied their civil rights but of course I’m laughed at. But think about it, people who are arrested without reason, roughed up, not given legal defence are all said to be denied civil rights. I’m denied happiness and the ability to work due to pain which if treated correctly would be able to work. You aren’t able to live a life of happiness due to the governments asinine insurance program. Would a diabetic be denied insulin, woukd a cardiac patient with atrial fibrillation be left with no Coumadin or warfarin and allowed to produce a clot and end up with a pulmonary embolism or a stroke issue. No…..but you are left in pain. Patients can get grants for many drugs in order to stay alive but I have yet seen a grant foundation set up for opioids. I coukd be wrong but in my cancer drug financial search no pain medications were listed.
    I’m done now but hope you won’t lose strength in your fight Billie.

  16. Sheryl Donnell at 5:38 pm

    You are absolutely right. I think this is part of the reason so many of us put on a “brave” face. Or, when you see us, we are smiling and seem to act as if we are ok. It is all part of not focusing on our pain, not giving it a huge amount of control, when we can. It is far to depressing to focus on our pain all the time. The times we can divert our attention, like when we try to socialize, or run a few errands, it is far better to do them with a smile on our faces, than a grimace. The grimace reinforces we are in pain. The smile helps us to try and focus on others things, not our pain. The funny thing is, when we do that, we are accused of faking our pain, however, when we walk around grimacing, we are accusing of faking our pain, because it is impossible to feel that badly all the time, or, the other one we hear, we are just looking for sympathy, something I’d sooner walk on nails that get. Then when I am an educated patient, I am a drug seeker or have Munchhausen’s because I know too much about my illness and must be psychologically ill, but if I go to the doctor and don’t know about my illness, I’m considered a drug seeker because I am just complaining about pain but have not invested myself enough to even learn anything about my condition to participate in my own care. I really wish that physicians would really listen to what they are telling patients throughout the day, just for a week or two. I think they would be surprised .

  17. Donna at 1:24 pm

    I believe that a person in pain should find a way to cope that works for them. For me, it is my faith. I use many others, but for me, this is my primary way to make it through life in pain.
    The much harder part is medical care. Want to change doctors? Good luck. For if you are a pain patient, you will be turned down as a new pattient over and over again. Want to change pain specialist? You will be seen as a disgruntled, demanding patient, a drug addict, or have your meds discontinued altogether.
    The rules have changed tremendously. And things that were simple to do in the past, or even last week, have become nearly impossible.

  18. Jean Price at 12:01 pm

    Katelyn…just as I was about to take a breather from all the sadness and outright horror of people’s life’s as shown in the comments…you come along! Thank you so much! Your article speaks volumes to one of the least addressed yet most helpful ways of actually “living” with pain. I have referred to it as a grief and loss component, but actually it encompasses so much more. We all ask the spiritual questions of “who I am, what I am, and why I am”. With chronic pain, other question always try to sneak in…the “why is this happening to me, what did I do to deserved it, why can’t I will this to stop”questions! The “should have, would have, could have” struggle and the “if onlys” can send most people spiraling into a place where pain easily overwhelms, if not intensifies. There are tools to keep this from happening and ways to get back on track when it does. Most people who have a major life change from injury or illness will have a self worth and empowerment struggle…when we can do less it’s hard to believe we aren’t worth less in a society than focuses on the doing part of life! Add in loss of employment and income, increased costs from now needing treatments and tests and medication, difficulties in definitive diagnosis, problems finding and traveling to obtain compassionate appropriate health care, family dynamics, social dynamics, changes in body image, and a host of other difficulties and people with chronic, life limiting pain have a monumental task to keep from being in despair and seeing life as not worth living. We need to fight when we are least able and take control when we feel most out of control. And the future is scary! This book sounds like a worthy piece of information to help, as you’ve pointed out. I also would advocate for grief and loss classes, usually available through a hospice and open to the public or through a grief counselor. I would love to see classes like this geared specifically for people in pain, but most address the life change of death of a loved one. Yet the feelings a person goes through with any type of loss are the same. Complicated grief or grief that has piled up over the years is very damaging to the joy of living. I think the best grief model is not the usual one based on stages, but rather based on the tasks of grieving. (Although any is certainly better than none!) The issue is not whether we grieve…that’s a given. The issue is whether we grieve in healthy ways or chose an unhealthy path that can lead to more losses. The first step is to chose whether to accept the reality of the loss and the feelings or to deny the loss and stuff the feelings. Feeling more pain of any type is not what anyone with physical pain would like to do…yet that’s part of accepting the loss. We allow the pain of the feelings of anger, frustration, confusion, unfairness, disbelief, abandonment, being alone, and all the other feelings that loss brings. And WE TELL THE STORY OF OUR LOSS!! It helps sort out our feelings, as we accept the loss and work to create a new life that includes the loss. Then we are free from all the old baggage which can make our physical pain even worse and we can reinvest in life once again. The dark side of this, denial, is very energy consuming because we are constantly having to avoid the lie…avoid the fact that we have a loss and all those feelings. People use all sorts of things to help with that…food, shopping, abusive behavior, sleep, alcohol, you name it! What ever helps to not think about the truth! And it doesn’t work, of course, so better use more! Then the problem is compounded and the feelings grow and the result is catastrophic. More losses! We see this for people who don’t have pain too. It’s part of the human condition. And the benefits of grieving are the same, too…a renewed sense of worth, more joy in life, more investment in others, more ability to handle the ups and downs, more ability to let go of uncontrollable goals, LESS PAIN! This book sounds like a good place to start on getting to a better place in life with pain. So many of our battles are with ourselves, and they are the ones we have more control to change. Again, thanks for your positive post…it made my day!

  19. Mark Ibsen MD at 7:33 am

    Heresy!
    This fully empowered human being is calling for
    “DOCTOR SHOPPING ”
    Oh no!!!!!

  20. Billie Vazquez at 7:06 am

    Alot of my pain comes from old injuries that I have developed arthritis in these areas. Most defamatory meds don’t seem to work anymore. I take a muscle relaxer and an opioid to help. For my neck my pain back doctor give me a set of shots that targeted the arthritis and it really helped the worst of the pain there. But since my job changed insurance I cannot afford the medical care I need. My old insurance I only paid for the office visit now I pay that and the shots are almost $500 a set. Almost have that paid for. My new insurance costs me almost $120 a month plus I have a $2000 deductible. I make just over $9 hr so with more than one doctor I need to see, I’m juggling to see which one can I afford to see this time. I also am Bipolar 2 so I can hardly handle all this stress and the pain makes feel even worse and I just can’t afford to get all the care I need. I know Obama care was supposed to help people but it really hurt me and my needs. I can no longer afford the care I really need. I feel like I’m struggling for air but slowly sinking and don’t know how to get above the water.