Pain Meds Help Me Live

Pain Meds Help Me Live

Jennifer Silver Linings

There is no guidebook to living with a chronic, progressive, and incurable disease. Even if such a book existed, it would only be somewhat applicable, as things change on a daily basis. We are all as unique as this disease, yet have one commonality: pain.

Before my multiple sclerosis diagnosis, I had a long-established history of chronic pain. For over 20 years, I had experienced myriad surgeries and pain management techniques in an effort to improve my quality of life. I did everything: dozens of nerve blocks, radio frequencies, epidurals and injections, implantation (and ultimately removal) of a spinal cord stimulator, acupuncture and acupressure, physical therapy — the list goes on. While my pain was present, it was somewhat manageable. I had days when I could participate in things I enjoyed, understanding I would pay for it later. I have long been an excellent pain management patient, never canceling appointments, taking medications as directed, and working hard (with an excellent physician) toward making pain but an aspect of an otherwise full life. The pain management physician I had for 16 years literally saved me from falling into the abyss. I was on the precipice, and I will always be grateful.

While I still pride myself on being an excellent patient, my pain has increased as my quality of life decreases. After eight years with now progressive MS, I experience a more diffuse but far more challenging degree of pain. The majority of this is in my legs and has been quite a worthy adversary. The Center for Disease Control’s recommendation of maximum morphine equivalence has also mandatorily reduced my medications substantially. While I agree there is a devastating opioid abuse issue, I take issue with a one-size-fits-all attempt at a fix. The CDC has created a standardized formula whereas people are not standardized.

I take offense to government dictating what I can and cannot take. However, I understand the need to rein in the number of rogue opioids and abusers. I have worked tirelessly over the last 30 years to find hope and healing in even the most trying of days. It is a continuum, and one I have learned to do with daily diligence. I am unashamed to admit I have gotten here with the help of pain medications. I am also terrified at the trajectory of the CDC, as it is with the help of these medications I am simply able to do even the most basic things such as shower, dress, and make a meal.

Medications are in no way a panacea. Medications, in conjunction with a repertoire of pain management tools, cognitive exercises, and a vast support network, help me to live.

They help me LIVE.

By now, you know I am an eternal optimist and thrive on making myself the very best person possible. My hunger for learning, faith, and growth is insatiable. Yet, if you knew what it takes me to get through the average morning routine, you would be shocked. At times, I am. There are times it is impossible for me to do anything but actively attend to my unmanaged pain at home. This has become too much the norm.

It is here that I must implore you not to feel sorry for me because I do not feel sorry for myself. I am blessed. I have an abundance of faith, family, and friends, all of which guide me when I am unable to guide myself. I have a beautiful home in which to be among beloved two- and four-legged family members.

This said, I want my life back. Perhaps had I never known what life could be, it would not seem so cruel to be relegated to the sideline. I am not a sideline kind of girl. I am experiencing less of life as a direct result of access to fewer medications. Even some of my doctors are aghast, yet their hands are tied.

Last week, chronic pain patients held a nationwide march to protest these guidelines. The CDC guidelines will only become more stringent, and that frightens me for various reasons. I fear we will see a rise in black market sales of opioids, which is downright dangerous. These medications can have any number of harmful unregulated components. I fear we will see a spike in depression. Even I find myself teetering on that all-too-familiar precipice on extremely trying days. I fear we will see an increase in suicide. Many are living a tentative existence, as their pain is an all-encompassing phenomenon. I have long since learned never to judge that person, as I have experienced those days.

One thing I do not fear is judgment. Unless, and up until, you have walked a mile in my shoes, do not bother as I will smile and turn away. I will smile because I am me. I will walk away because you are not.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

23 comments

  1. Lisa Fusaro says:

    Great article. I suffered from chornic pain since early childhood and was finally diagnosed with MS at 39. At 64, I have progessive MS and simple things like showering, standing have become excruciating. I find relief biking on my theracycle. But sleeping, walking, standing while cooking all are painful. I am looking into buying a handgun. I have reached my limit.

    • Jennifer Powell says:

      Lisa, thank you for writing. I am so sorry you are suffering and I pray this column and these forums help support the fact that you are never alone.

      Kindly,
      Jenn

  2. Karen says:

    I was so happy to read what you wrote. Have 30 illnesses including ms, which has come with crippling paying since 2010, and can’t get any pain management due to opioid problems in country, not me. My legs are worse ,but have throughout body. Cry every day. No family, but x-husband, who is not always available. MY PAIN HAS ALSO BECOME EVEN MORE UNBEARABLE. NOBODY CARES. WAITING FOR MY TIME JUST 2 BE OVER. A NIGHTMARE. THANKS FOR SPEAKING OUT FOR ALL OF US. KAREN

    • Jennifer Powell says:

      Thank you for writing Karen,

      I pray you find support through the wealth of knowledge available here. I am so sorry you are enduring such pain.

      Kindly,
      Jenn

    • Jennifer Powell says:

      Thank you reading my column, Elizabeth, I appreciate the positive feedback and hope you return as a weekly reader!

      Kindly,
      Jenn

  3. Hi Jennifer.

    Your article is excellent. I have lots of pain through MS and subequent falls because of MS. I am an optimist too. We have to keep trying everything possible.
    I love the sunshine and hearing the birds sing. This always makes me feel that little bit stronger.
    Kind regards
    Fionax

    • Jennifer Powell says:

      Thank you for taking the time to read and write Fionax. As I respond I am listening to the birds chirping. I like to believe they are reminders of the beauty that surrounds us; even on the most difficult of days.

      Keep up that optimism, it will take you far.

      Kindly,
      Jenn

  4. Sammy says:

    Yes, I too feel like you, that those of us, who truly need narcotics and do not abuse them, seem to be penalized for doing the right thing. Have you tried Medical Cannabis yet? After being on morphine for 18 years, and being allergic to other narcotics, the next step is to try medical cannabis, yet, I will have to pay out of pocket. It is probably less harmful then those other drugs!

    • Jennifer Powell says:

      Hi Sammy thanks for writing. Thank you for the suggestion, I believe cannabinoids are extremely healing and I am grateful they are helping your pain.

      Kindly,
      Jenn

  5. matt eddy says:

    Hello Jennifer, my name is Matt Eddy, I’ve had MS for 38 years and have traveled to various places
    Around the world. I’m pretty much in the same boat you are. I’m going to Dr Simon Yu in St Louis next month. Check out his book “accidental CURE” and YouTube. I think he’s got the solution! Also, check out Dr Alan McDonald and MS on YouTube. Blessings

    • Jennifer Powell says:

      Hi Matt thanks so much for writing. I am grateful you have found something so influential and will certainly check them out.

      Kindly,
      Jenn

  6. Alex says:

    After one of my quarterly appointments with my pain mgmnt dr I made my next appointment and was told I either saw one of his PA’s or wait weeks to see the dr. I find this happens a lot, you see the Dr a cpl of times and then you are passed off on to a PA. One told me about and offered a DNA or blood test that would be able to determine which medications my body would respond to the best. Now that sounded great, who wouldn’t take the test. Unfortunately she left out the fact that my insurance wasn’t going to cover it. Yea I could have asked but she might have volunteered that not so little but of info. I never paid the bill and switched Docs to my current one.
    Anyway as I said earlier I was eventually passed off to one of the PA’s in the huge Ortho clinic. My first visit arrived and when he finally came into the exam room we talked about what was going on, along with the MS pains I shattered a vertebra in a car accident and cracked another in MS rehab. I haven’t known a day without a pain level of at least 4 but average between a 6 or 8 and easily can be at a 10 in no time. I hate weddings because of the banquet chairs. So this PA gets to writing my refills I said that I needed my Oxytocin refilled. This is where he looks at me up and down and asked what strength. I keep a list of the 12 different drugs I take but had forgotten. He started grilling me as to why I didn’t know the strength and if I had tried to not take them. All the while I’m wondering WTF? Has he never heard of MS much less a severely broken back? And that computer sitting there has all the information he needs, instead he gets up walks out of the room and disappears. When he comes back he starts talking about maybe switching me to extra strength Tylenol. Just then the door pops open and the nurse sticks her head in the door gives me a look up and down like I’m a crack addict trying to pull one over. Never in my life had I ever been treated like a drug addict and scum.
    I had a dear friend who had a broken back like myself. Sherry tried to cut back on the Opiods. Her Dr cut her Rx back too. Sherry put a shotgun in her mouth and blew her head off.
    Big Pharma is to blame..period! Pushing their pills and paying off Senators and Congressmembers to keep Marijuana illegal because they know that It works. I cut my opioid use nearly in half because I Vape almost nightly. We also need to weed out bad Doctors, PA’s and NP’s. They are the ones writing the scripts, usually for a Big Pharma kickback. Just like handicap placards are given out like a lollipop after a Dr. visit. Go after the Dr.s and a good amt of the problems would be cut back.

    • Jennifer Powell says:

      Thanks for writing Alex. I hope through the pages here you can find both support and the knowledge that you are never alone.

      Kindly,
      Jenn

  7. Greg says:

    “yet have one commonality: pain.”

    I was diagnosed with Relapsing-Remitting MS over 30 years ago and have had no physical pain due to MS (but have had mental pain – depression, which I understand that about 60% of people with MS do) – for which I am thankful about no physical pain. I have not walked a mile in your shoes and I wonder what percentage of people with MS do have physical pain due to MS. Probably a higher number than I realize.

  8. Susan Bock says:

    I have been worried about this crack down and will affect those of us who need to use it. My life without Vicodin has me spending my time in bed. Don’t like to be in bed!

  9. Terri says:

    To Alex-
    Sorry you had a rough time with your providers however, it is your responsibility to know your meds and doses. If you can’t remember them then you should write them down on paper and keep it with you for your appointments. Also, Oxytocin is to induce labor not treat pain. I’m sure you meant OxyContin but you really need to take responsibility of your health.

    • Jennifer Powell says:

      Hi Terri,

      Excellent suggestions. Let’s try not to make assumptions about another’s personal responsibility or lack thereof. We need each other more than ever!

      Kindly,
      Jenn

  10. Martha says:

    I agree! I have RMMS with spine and stomach trouble hurt all the time! If you can’t get relief with exercise if you can do it and controlled dr pain mess where do you get help with chronic real people with real illnesses to get help

  11. Angela Kidd says:

    I am an 81year old woman and have been going to my local swimming pool for approx. 15years just gently water jogging for 30mins 3 mornings a week I still get pain in my legs more so when I go to bed but it is not as bad as the days I dont go and if I have to stay away for any reason it gets worse and I stiffen up badly sometimes I wonder what will happen when I am not able to go but I really enjoy it so much will keep going as long as I can.

  12. Candyce Rogers says:

    Great article, I so enjoyed reading it. I was diagnosed with rrms in 2015 but as we as we all know I was having symptoms before that.

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