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.

31 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

  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.

  13. Jennifer Paretta says:

    I’d like to really thank you for writing this article. I’ve been diagnosed with MS for over 21 years and for the past four years I’ve lived with debilitating chronic pain to the point where I don’t leave my house often. I’m no longer able to work and it’s become very isolating. My background is in clinical pathology and I have tried every single drug, holistic methods and nothing works! I’m thinking about a Nerve Ablation. Has anyone else ever tried that?

  14. cole says:

    Thank you for writing this. I’m not sure what country you are in(guessing the states)but it is NOT mandatory to follow these “mandatory” prescribing guidelines in Canada. Here we also have been hit hard with the opioid crisis. I had to do my own sleuthing to figure out the mandatory prescribing guidelines and what exactly it meant here. I spoke with the college of physicians myself and my own doctor (who is the best) did he own digging on what exactly this meant. long story short, it IS still between you and your doctor to decide what is the best option of course there must be a well documented medical history and the normal we’ve tried ALL these other things etc. It is still 100% between the two of you.

  15. Denise Bakker says:

    I feel like I should start with “hello, my name’s Denise and I have severe chronic pain “. Thanks for your message. I’ve had MS for over 21 years. I also have fibromyalgia, Crohn’s disease, thyroid disease (including hypothyroidism for a couple of years, and an immediate change to severe hyperthyroidism which caused a Thyroid storm (thyroid hormone toxicity (which is fatal 75% of the time and spent days in the hospital). My PCP called an ambulance when my pulse was in the 170s. (My thyroid hormones were frightening high), I’m taking beta blockers to lower my heart rate, but due to my very low blood pressure there’s been concern that the medication may lower my blood pressure (already only 98/50) which can be fatal. My doctor didn’t want me alone but I’m not able to pay for round the clock medical help. My new boss at work (where I was transferred to train him) Has been ignoring my reasonable ADA accommodations, (set in Feb 2017) before he was hired in Sept 2017, has seriously exacerbated my illnesses by ignoring all 3 of my ADA accommodations. I had huge medical co/pays and lost my job of 11 1/2 years And my health insurance because of this new manager. I
    also have osteoporosis, Postural Orthostatic Tacycardia (POTS) which is an auto dysautonomia disease that defeats my circulation and my blood pools with gravity. Lifting my head, Sitting (which brings my pulse to the dangerous rate of 145 and standing (pulse of 189), which can also prove fatal. I was recently notified that my adrenaline levels are higher than my doctor and his colleague who is a POTS specialist, have ever seen. I’m bedridden, and can’t even lift my head due to pain so serious I’m “praying to die”. The headaches, digestive pain, seriously painful nerve damage, loss of vision, brain fog etc.

    Morphine has never affected me at all and the only pain meds that have done any good are Percocet and dilodid. Both of these make me scratch until I bleed. This hurts my long term position that there is always hope, and a positive attitude always helps.

    Marijuana is not legal in my state, and although I trust my PCP, I’m at a loss as to my options to decrease the pain I’ve been plagued with for so long I can’t remember a time without it.

    I feel out of options. I’ve tried hypnosis, counseling, tens units and still my digestive, nerve, fibromyalgia and MS pain is killing me slowly.

    Sorry to say so much. I don’t share this well with friends or family who have no way to understand. I know there are so many people that live with and excel despite much more serious situations. But I’m desperate.

    I’ve had other painful illnesses, many broken and crushed bones and 17 surgeries. After some of the surgeries my doctor purposely gave me addictive pain meds that don’t have any effect and 4 hours later, in spite of me reminding him I couldn’t take that medication, he gav it to me again. I spent 8 hours after a hysterectomy with NO pain assistance. I do have a very high tolerance for pain.

    Any thoughts or ideas would be hugely appreciated. Thanks for letting me share.

    Denise

  16. Kyle says:

    Hi. Thank you fof this article. I am 32 years old. I have had MS for 17 years.15 with Relapsing Remitting and 2 with Primary Progressive. I have chronic pain in my feet, legs, back, and neck. I have been going to a pain management clinic for about 4 years struggling with my medications always being changed on me. The hydrocodone was what worked but they kept reducing the amount of hydrocodone and giving me things like Morphine, Oxycottin ER, Hysinglia, etc which all made MS symptoms worse. I have always been a good compliant patient. I have to use a wheelchair to get around. Anyway, I had messed me back up picking my 6 month old daughter up while sitting in my wheelchair. Therefore had to take more meds than usual to ease the excruciating pain in my back. Now, please understand that I was not aware that I was not supposed to do this. I didngvrealize that it was that big of a deal. When I was handed the contract to sign, the nurse handed it to me and said ” Please sign this. It is a pain contract.” This was after being treated for about 3 years so I didnt read it and just signed since I didnt have my glasses so cohldnt really see it anyway and after taking meds for 3 years of course I was goin to sign it. Well, about a week ago I was called in for a random pill count. I went in with my meds, they counted them and I went on my way. The day before my next appt I called to confirm my appt time for the nextvday and was told that I had been discharged without being given the reason. She told me I should have received a letter. Well, I hadnt received itand didnt receive it until the next day which means if I wouldnt have called I would have went to my appt the next day and had to find out thrn. I was offered nothing to help me ween off or anything and was about out of meds. Now, due to this, I am still going through withdrawals and am now confined to a power chair. I have excruciating pain in my feet, legs, back and neck. The pain management clinic gave me relief and better quality of life and then took it away and made things so much worse. While I nderstand the need for control of oa pain meds I do not understand why it has to be at the expense of good people that are in pain.

  17. Nicole Novi says:

    Hi and thank you for being brave and writing your article. My Name is Nicole, I’m 43 years old and I’ve had MS since I was 21, now my MS has progressed and I have Secondary Progressive MS and Fibromyalgia as well. Since my 20’s I’ve been on Copaxone and it helped my relapsing-remitting MS pretty well for about 15 years. Then I had too much pain doing the injections and too much scar tissue and when I turned 40 I had the worst relapse ever; I had spasticity all over my body, the MS “Hug”, fatigue that was horrible, dizziness, etc. I did a round of IV steroids that really made things worse and didn’t help any of my symptoms at all. Bc I had problems with the IV, they had to stop my steroids in the middle of my dosage – and when I asked to get my steroids finished I found myself in a hospital and my Neurologist suddenly was questioning if I even had MS and they were asking for an MRI to prove that I was going through a relapse when I couldn’t even lay flat bc of the MS hug and problems breathing, and then my doctor accused me of asking for chemotherapy! So anyway, I was going through hell and the spasticity and pain and chronic pain in back was awful, all I could do was ask my primary physician for pain meds; I believe at the time she put me on oxycodone, and that got all messed up, she prescribed me the wrong amounts, either too much or too little, the stopped me cold turkey. I went through withdrawal and then got on suboxone . This had not been my first time on suboxone; in my younger years I had two abusive boyfriends and one injected me with heroin when i was suicidal and i agreed bc i was stupid and got addicted, so therefore i have a drug history that I can’t erase. To make this long story shorter, a few years back, when i wasn’t on anything for pain, and when i had tried all preventative MS treatments that disagreed with me, I was suffering, and so I had no choice but to go on suboxone bc no pain doctor or even MS doctor would treat my pain with regular pain meds. Then, a miracle happened, I finally had the support of a nurse navigator and after a long discussion with my primary physician, I was put on morphine, and I started to see a great MS doctor who eventually took on giving me my pain meds. Everything has been great until recently when I was in the hospital on dec. 30th 2018, and i opened up my morphine bottle, and my half of my pills were gone. I reported it to the police, told the office of the Neurologist (my current MS doctor) , and of course, they can’t replace stolen medication. Now, after all of my hard work, and being clean for over 7 years, I can’t even talk to my doctor, I’m going into withdrawal, and looks like I’m screwed and will have to go on suboxone again. i am devastated. I am trying to keep hope; I feel there should be exceptions to these rules? I see my Neurologist on the 22nd and I’m praying that he’ll realize that suboxone may not be the best solution for my pain or all symptoms in the long term…and that I deserve a second chance. I needed to tell you all my story … please keep hope and live for today and believe in yourselves. Much love and peace.

  18. Donna says:

    I have had RRMS since I was 18. That’s almost 30 years ago. I’m allergic to so many medications it’s not funny. All antibiotics are allergies and steroids give me something called Posterior Reversible Encephalopathy Syndrome so when anyone else would be given steroids I either have to lay in bed for months or do plasmapheresis. My current biggest problem is that I have to change pain management doctors because I cannot get to him and he doesn’t take insurance so I can no longer afford his $250 every 4 weeks. I can’t find any pain doctor willing to take an MS patient. I’ve called about 30 doctors, MSAA and pain management corporate websites and everyone says no once I say MS. I am at a point where I can only leave my bed when I have my Tysabri appointment. It’s not working I’m getting worse but all the other medications require steroids be administered with them. My neurologist won’t give any pain medication. I’ve been on the same medications for about 15 years and they work fairly well (vit D, Doxepin cream and norco). All I need is a pain management doctor that takes my insurance. I used to take stronger pain medications to sleep but switched to medical marijuana which works really well for sleeping but I can’t use it during the day. If anyone on Long Island has a pain doctor willing to take an MS patient please, please tell me who they are. I have a friend that also has MS and needs a pain doctor. I also have extreme migraines and very bad vertigo. I really need a new pain doctor please.

  19. Cat Kelly-zazado says:

    How can I talk my suffering boyfriend out of getting a spine stimulAator? He was treated for back pain for 10 years with epidural injections, which, surprise surprise-have led to an extreme worsening of the problem. He cannot stomach pain pills he throws them up. He’s 53 they want to insert a spinal cord stim now. I’m absolutely terrified this might just kill him. I think a pain patch is the best option for him. He doesn’t “want to be an addict” please share why he shouldn’t have this procedure. I’m desperate to stop him.

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