Chronic Migraine, Community, Coping, Doctors, Society

Seeking Patients’ Perspectives on Pain for Journal Article

Trisha, an RN with chronic migraine and occipital neuralgia, is seeking patient input for an article for she is writing for a nursing journal. Her focus is patients’ perspectives on chronic pain and what their health care experiences have been. She says,

The reason I want to write this article is because after almost two years on the other side of the fence, so to speak, it’s become glaringly obvious that there is a need for the healthcare community to hear first-hand how it feels to be treated with discrimination simply because you have a disability that isn’t visible to the naked eye. Being refused treatment in the ER, being accused of drug-seeking behavior, and not having access to adequate pain relief complicates the issues at hand and may, in fact, make the pain and suffering we face worse than it already is. Chronic pain sufferers deserve just as much respect and dignity in treatment situations as any other person with a disabling disorder.

Trisha has created a questionnaire for patients who would like to contribute. She asks many questions, but many only require short answers. More importantly, they are questions that anyone with chronic illness should think about. Your responses will help you better understand your headache history and the impact of illness on your life. Think of it as self-administered therapy.

Chronic Pain Questionnaire
I have a questionnaire I’d like to get as many people to fill out **realistically and kindly** as possible in order to base the article on as wide a reference base as I can reach and get responses from. If you’re interested, please fill this out and email it back to me by September 1.

Thank you in advance for taking the time to fill out this questionnaire. Please note that doing so gives me permission to use this information, in context, in an article or articles having to do with chronic pain and associated issues. If you prefer not to answer a question or two, please put N/A in that spot so I know you didn’t overlook it. I appreciate your input.

  1. What is your diagnosis?
  2. How long have you been ill?
  3. What would you say is the attitude of society today toward people with chronic pain issues?
  4. What is your biggest struggle in day-to-day life?
  5. If you could say one thing to the healthcare community, what would it be?
  6. In your opinion, what is the biggest obstacle to receiving quality care and pain control?
  7. Do you feel your pain relief needs are adequately met?
  8. How many doctors did you have to see before you found one willing to treat your pain in an effective manner, if you have found one at this point in time?
  9. Do you feel that chronic pain sufferers are seen as people with legitimate complaints?
  10. Does the use of illegally-obtained medication by high-profile individuals negatively impact the chronic pain patient seeking relief today?
  11. What would you tell society about your situation if you were given the opportunity?
  12. Do you believe there is a medication that, if made available to you in the correct dosage, would assist you in living a more pain-free life?
  13. Do you feel that chronic pain sufferers face discrimination when applying for Social Security Disability?
  14. Do you feel that chronic pain sufferers face discrimination in the workplace?
  15. How has your quality of life been affected since you became ill?
  16. Have you ever been refused treatment or accused of drug-seeking behavior in an emergency room setting when you’ve gone to one while in intense pain?
  17. Have you ever been told that your pain is all in your head?
  18. Does your pain significantly impact what you can do on a day to day basis?
  19. Have you lost your job or livelihood because of chronic pain?
  20. Has your family situation changed because of chronic pain?
  21. Have you lost friends because of chronic pain?
  22. Do you need help doing things that you used to be able to do independently because of your pain?
  23. Does your pain cause you to say or do things that embarrass you?
  24. Are you being treated for depression or anxiety due to chronic pain?
  25. Do you often pretend to feel better than you actually do in order to avoid uncomfortable situations or comments?
  26. What modifications have you had to make to your home to accommodate your chronic pain?
  27. Do you take narcotics for your pain?
  28. Do you take anti-seizure medications for your pain?
  29. Do you have trouble sleeping? 30. Do you have trouble concentrating?
  30. Do you have trouble staying awake?
  31. Are you able to exercise on a regular basis?
  32. Have you gained weight since you became ill?
  33. Have you lost the ability to enjoy the things you used to look forward to?
  34. Have you had to change careers or cut back on your work hours due to chronic pain?
  35. Do you feel like people avoid you because you are ill?
  36. Do you see a pain management specialist?
  37. If so, is this sufficient for pain control or relief?
  38. Do you feel that people with invisible disabilities are looked at differently than people with obvious physical handicaps?
  39. Is there anything else you’d like to say?
  40. Please provide your first name and last initial or a believable pseudonym I can use:
  41. Just for statistical purposes, can I please have your gender and age? You don’t have to answer this one, but it would assist with data groupings.

Thanks again. I appreciate your time and effort. –Trisha

14 thoughts on “Seeking Patients’ Perspectives on Pain for Journal Article”

  1. Momentum must be regained on this subject. The problem is worse than ever, and apears to be only getting worse. The doctors office is the LAST place that a fear of narcotics belongs. Where doctors should be setting the record straight, regarding myths and misinformation, they are taking every opportunity they can to step out the back door. We are basing our policy and science off fear and politics, instead of actual truth. As a chronic pain sufferer, I am absolutely terrified on a daily basis, that I will not have the tools needed to manage my health. I am put into extremely dangerous situations as a result of the misconceptions and regulations currently in existence. It honestly makes my life not worth living, and that is NOT an exaggeration. I do NOTHING but manage my health, no recreation, no socialization, no life. This does NOT have to be the case, as effective treatments such as opioids DO exist (but are for all intensive purposes LIED about by the government and media for lack of a better approach). We are approaching this in the completely opposite direction or what is appropriate.

  2. I also just read the above comment, regarding drug seeking behavior….this is absolutely the same issue I have encountered and even after explaining some of the meds they are prescribing are not useful.

  3. This is currently something after 10 yrs I have finally found is in part due to my current health & disability issues, but thankful to FINALLY understand why I had the symptoms I did. Still appealing disability with no pain under control yet. Additionally, I believe WC related but having issues in this arena as well and it is hard to explain to anyone, who doesn’t understand. It would be nice to be able to obtain a copy of your article.

  4. I have been suffering from occipital neuralgia for years. I have an implanted occipital nerve stimulator. My pain to my head and neck are consatant, and I am continuously being under medicated with main medications/narcotics. I have had botox, acupuncture massage, biofeedback, nerve injections, tried seizure medication. Gabopentin, antidepressants I cannot take NSAIDs or Asa due to my colitis. I am in constant pain and my neurologist informed the emergency room I am not to have any iv/I’m narcotics. I am constantly being treated as if I have drug seeking behavior, although I have yet to have a psychological evaluation concerning this.

  5. I began with this disorder following a mororcycle accident and it went undiagnosed for 17 years despite presenting the classic symptoms. Early on, I experienced shifts in consciousness and an inexplicable loss of association and feeling towards my friends and family. I thought that there was something essentially wrong with me as a person because my doctor had passed the symptoms off as natural wear and tear in my cervical spine. I took an overdose.Unfortunately I then took a wrong route; alcohol and for the next ten years everything of value to me disappeared into an abyss. I wanted to die. O N is intolerant to alcohol.
    My daily feeling was of having just recoiled from having my head slammed against a wall, with the resulting semi- conscious haze unrelenting. I lived my life through this haze and when I dragged myself back to sobriety it still didn’t go away. I read about permanent headaches and related to other sufferer’s stories. I began to ask my doctors if I had a similar condition and they said it was due to neck sprain. Then I more or less pleaded with them before going down the diagnostic path of physiotherapy X ray and MRI.They remained skeptical I was accused of malinering but nonetheless referred me to a pain clinc. Again, skepticism when nerve blocks only numbed the pain. I have very recently been diagnosed witha ‘refractory cervicogenic, occipital and other headache’ However, more seriously the notes of my accident, in which I had suffered a total fracture of my scapuala had never been present in my medical file.

  6. I have been dignosed with Occipital Neuralgia and am desperately wanting to talk with others who are going through the same thing! I am getting ready to trial a spinal cord stimulator and am trying to find some information on disability.

    anyone who has experiences to share…please email me!!

    angel_1426 at yahoo. com

  7. I have Occipital Neuralgia and have battled this for years. I have finally be officially diagnosed as of 11/07. I find even now that there is a very limited amount of information. I truly wish that others understood what we are feeling on a daily basis and could SEE that this is very real and very painful.

  8. Hi,
    I am writing a book about Chronic Pain. I have been a chronic pain patient for 13 years. I am very interested in speaking to you. I almost committed suicide in the year and a half because my pain was so out of control. A lot of doctors have opiophobia, due to the DEA and patients that are misusing the medications or really do not need them. I was happy to come across you website. Trust me; I have been thru hell & back. I suffer like you would not believe. I cannot get into here. Bless you and keep on doing what you are doing. Katie

  9. I am in complete aggreement with you about the way chronic pain sufferers are sometimes treated. It is very daunting searching and finding a competent doctor that you can trust to help you. I have not found one yet but am hopeful. I have completed your questions and hope they are somehow useful to you. Good luck with your endeavors.

  10. My husband is suffering from Occipital Neuralgia. Since Sept. 2007 he began having consistent cluster headaches. We’ve seen many doctors and finally after being diagnosed with anxiety, depression, high blood pressure, insomnia, and who knows what else we met the right doctor that actually knew his diagnosis from day one. He’s still being treated and after receiving steroid injections that worked only a short time he decided to go with the electric stimulator he ‘s undergoing the trial now but soon will elect to proceed with the actual implant device. We are very interested in hearing your story. All your questions sounded exactly like what he’s discussed with me about & we continue to have problems with.

  11. I submitted my responses to Trisha, and am looking forward to hearing an update from her/you/ anyone about her responses and conclusions. Definitely some good questions in there that I hadn’t thought about lately.

  12. Thanks for posting this Kerrie. You are right. Answering the questions is really helpful in terms of looking at the “whole picture” of my headache story.

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