A Beacon of Hope Amid MS-Related Pain

A Beacon of Hope Amid MS-Related Pain

Jennifer Silver Linings

Do you have pain?

Although prone to subjectivity, I am certain the majority of you silently said yes. I did.

I hesitated to write this, as pain, from the definition of it to the management of it, is idiosyncratic. Rather than draw hard and fast lines, I prefer to draw attention to chronic pain and offer my own personal experiences. I will revisit this topic periodically.

Pain, specifically chronic pain, is at best disruptive and at worst all-encompassing. MS-related pain varies in both location and intensity, and its omnipresence profoundly affects us physically and psychologically. If we are to sojourn alongside chronic MS-related pain, it certainly demands not only our attention but also proper management.

I live each moment with pain — from the time I wake until I eventually find sleep, I hurt. I say this not to invoke pity but to give you a glimpse into my world. I have worked incredibly hard at learning to co-exist with constant pain, and that learning is a continuum.

Pain management literally has been a lifesaver, as I would never have learned the accountability necessary to utilize any management skills. Given the myriad of modalities that may include medications, it is vital that you learn how to use these medications with the respect they command. Keeping track of your emotional and physical mindset is imperative, as pain — and medications given for pain — greatly affect both.

Embracing non-medicinal modalities is just as important, as meditation, physical therapy, acupuncture, prayer, guided imagery, and cognitive therapy can provide marked relief. My doctor gave me the ability to thrive knowing that pain is but an aspect of an otherwise abundant life. This intrinsic knowledge helps me through the days I cannot thrive and do not feel that life is so abundant. Those days are extremely difficult.

I awake early, anywhere from 2 to 4 a.m., and upon wakefulness, I am greeted with pain and numbness. More specifically, and indicative of progressive MS, a deep, searing pain is in both thighs. I have always described this as bone pain, as its depth and debilitation are inexplicable. Also, my extremities on my right side, and sometimes on my left, are painfully numb. This is ironic, as one would think numbness is devoid of pain. One would be mistaken. Musculoskeletal pain varies in severity but is always with me, due to weakening tendons. I experience pain and longer healing times with otherwise normal injuries.

What do we do faced with such pain?

We fight. We hope. We cry. We wish. We pray. We reconcile. We learn. We grow. We survive. We thrive. We live. We process pain day to day, sometimes minute to minute, and we do the best we can with what we are given.

One of the most discouraging aspects of living with pain is feeling misunderstood, unheard, or disregarded. Oftentimes, medications and non-medicinal modalities fall short of eliminating much of our pain, and that can leave us grieving. We grieve for the person we once were, the things we once did, and the quality of life we once had.

But we have a choice: We can choose to suffer or we can choose to hope. I understand it may not feel like much of a choice, but it is yours to make. Hope is not mutually exclusive from pain, tears, or difficulties; it is a focal point in which to hold so that even on your worst days you see that beacon shine.

Chronic pain is beguiling and can bring the strongest to their knees. I have the scars to prove it. That said, I fight. I fight not because I am so strong but because the alternative is simply not viable. I fight to enjoy whatever quality of life I have at any given moment, as I have learned that things can and do change at a moment’s notice. I fight to maintain my integrity and sense of self while navigating my life with progressive MS.

Most of all, I fight to maintain eye contact with that beacon of hope. While there are times that I lose sight, I am illuminated by the glow and continue to fight.

***

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.

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8 comments

  1. Robyn says:

    I not only suffer the pain MS can bring, I also have Trigeminal Neuralgia (the “suicide disease” as it’s called due to the pain it causes) and a destroyed spine from injuries and arthritis. It pains me (literally!) to see, hear and experience the current environment that frowns so totally on the effective opioid pain medications. Yes, they are addictive. But, my pain is completely addicted to torturing me every minute! There are those of us among you that really do need these medications to continue to live among you! Understanding this would go far to leveling the playing field so ‘we’ can obtain needed medications without fear or judgement.

    • Jenn says:

      Robyn I so empathize as I have been greatly impacted by the new guidelines. They are creating a standardized solution to humans with pain who are certainly NOT standardized. With my medication substantially reduced my quality of life has been greatly impacted. I am so sorry you are living each day with such incredible pain, my heart and prayers go out to you.

  2. Scott says:

    Fantastic article, I live with RRMS but deal with chronic pain, and numbness on the daily as well. I literally feel your pain and wish you the best. I play computer games as a form of distraction from the pain. When i’m indulged and immersed I forget about MS and what it brings for a short time.

    • Jenn says:

      Thank you so much Scott, I appreciate your well wishes and wish you the same. What a fantastic diversion and healthy way to distract yourself.

  3. Senator says:

    I also have PPMS and used to live with the pain you described 18/7 because I used to get 4 hours of sleep per night, awakening every hour because of pain. Then I would constantly fall asleep during the day because of the actually exhausting night I had sleeping. My Neuro and Primary Care Drs. kept trying different meds until they came up with Solumedrol IV and Butran patch. These two in combination now have my pain much more manageable. Prior to this my pain could reach levels of an 8 ( On scale of 1-10 w 10 being severe) which was so severe as to make me at times moan at night and wake my wife. Now my pain is at most a 4. I received the new drug Ocrevus (For RRMS & PPMS) and this so far seems to have replaced Solumedrol infusions for pain relief.

  4. J Smyth says:

    The help for pain is zero because no one really cares who should be and all the MS drugs are poisons . MS is full of corruptions .

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