My Pain Is Real — Don’t Deny Me Relief
I am quite outspoken. I have no problem voicing my opinion or needs — or so I thought. An exchange this morning left me speechless. While my head was swimming with semi-intelligible responses, I was rendered mute.
Let me just say that I have been on pain medication for a long while. I receive my medications from the same pharmacy and my prescriptions from the same physician. I have never missed or failed a drug test. I also take a multidisciplinary approach to coping with pain. I meditate, pray, stretch, seek counseling when necessary, do physical therapy, and spend time volunteering.
Hence, when static arose around the subject of my medication, I was surprised. The pharmacy told me the only people who should take this quantity were those who have cancer or are in palliative care. I should not need those medications. My mouth opened but no sound emerged. My emotions were on tilt. I was angry.
How could anyone dare suggest my pain was less than someone else’s? Pain does not discriminate. Must I have cancer to justify pain relief? I was sad. How could they take away something that allowed me to live? I was scared. “There goes life as I know it,” I thought. “I am going to suffer.”
I am going to suffer.
Why? Because I do not have cancer nor am I in palliative care, and therefore, my pain is insignificant. While I understand and agree with the use of parameters, this is absurd. How can an arbitrary entity suggest that my pain is not worthy of medication? A one-size-fits-all solution is unrealistic and cruel.
People with secondary progressive multiple sclerosis have pain. Furthermore, my pain began before my MS diagnosis. Spasticity, myofascial pain syndrome, and trigeminal neuralgia are not quantifiable. I do not fit the little box; therefore, I am left to suffer. I cannot think of greater injustice.
Essentially, I am being told that if I were dying, my quality of life would be taken into account. However, if I want to live and thrive, I am on my own. Why? Because I do not have cancer.
I love my life and I love living. I write, volunteer, get out with my friends, and run general errands. I work hard to maintain this lifestyle, since I have pain even with my current regimen, but that is OK. I would be scared if had none. I can still create beautiful possibilities for myself. I have days when I cannot do anything. Yet, there exists a balance.
I have seen how my life would be in the absence of that equilibrium. It is a painful reality: Life as I know it would cease. I have been in this dark place before. I have been the puppet. I have danced like a marionette while an autocratic puppeteer decided my fate.
I am not a puppet. I am a person. And I am in pain.
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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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Rob Millburn
This is so sad, I feel for you. This is wrong on so many levels! Who in the hell is this pharmacist, and what is the pharmacy? I'll make sure to never go there if it's my area. I too have good days and bad days, sometimes the bad ones are allot worse, sometimes they're manageable. No-one should be denied their meds, no-one! People like this make me sick! You can believe if it were one of their loved ones, they'd do everything they could to make sure they had meds! Take care.
BONI LESZCZUK
I have been in pain so long I can not remember a time without it. My doctors in the past said I should not be in pain and tried prescribing pills... But the price I paid was my liver crashing, accusations of misusing my pills, and in the end having to stop them to find out my tolerances were lowered and now everything was worse than before I started the pills. When my doctor ask me now about my pain, I say I have to redefine my numbers daily or it would have raised above 10 along time ago. Luckily my body is amazing and still to this day I fight through my pain only taking something when it is so bad I can not handle it 100%... also my turmeric supplement seems to help with some of the general ache. So I keep fighting, my prayers go to those who fight pain and everything else that comes with MS.
melody Eide Zipp
Well said. My heart is with you. I was finally diagnosed at 57 yrs old. I was diagnosed with fibromyalgia 32 years ago...many doctors did not recognize it as being real. I did not want heavy medication because I had young children. The doctor said well, when the pain gets bad enough you'll be back young lady and the pain will be worse.
I did not go back
I completely understand what you are going through.
Please take care.
Melody
ERIK OXY
I have had ND for close to 30 years, relapse remittance. I have dealt with pain and the it's issue for about 24-25 years. I understand all the political and social issues regarding pain medicine and I have gone through the same exact things as the writer of this article
To be honest I have feel I have stuck in between and a spawn in this situation. Now about 3 years ago I was on morphine.At that time my balance was great as well as my walking speed and distance. I have been off the opiotes since, but now because of the pain in my calves and feet, my balance is awful as well as my speed and distance. Oh and my stress level !!! When is the medical society going to concentrate on quality instead of quantity!!!
Mary
You need a new doctor and a new pharmacist. It doesnt have to be this way.
Michelle Brennan
Really? It doesn’t have to be this way? When the DEA comes down hard on these pain doctors and the pharmacists behave like doctors, you have no other choice!! Without warning, I was just cut IN HALF on my pain meds from one month to the next!! The DEA is threatening all these doctors because of what the Sackler family did to addict people - those that did NOT need it; those of us that DO need it, we are screwed!!!
Sandra L Stolaronek
Oh, I totally agree with you wholeheartedly, Jennifer! I am no longer on pain medication but I wish that I was because like you, I feel like it helped me to be more productive. Now though, it takes everything I have in me to be productive. I take a botanical by the name of Kratom now. You may have heard of it and it is very easy to buy online or at a smoke shop. That is one of the reasons I am not going back to pain meds, and also because this supplement helps tremendously with all my pain, including nerve pain. I don't like being made to feel like I'm a drug addict or something, I just want relief from my pain. I don't think that doctors or health care professionals know just how much pain we're in every day, but without some kind of relief, there's no quality of life for us!
Glenda
I was on long term pain (opioid, the horror) medication. A pharmacist shredded on ongoing prescriptions I left in their care. My neurologist explained she could not give me more than 30 pills for six months. I was receiving 90 for 30 days. I have suffered and withdrawn after eleven years of MS. Even my anti-spasmodic was taken away because it was in the benzodiazepine family. Thanks so much DEA. You have cowered the physicians and pharmacists. Are you feeling big now? I’m still alive, but I’m not thriving, I’m hurting.
RCG
I, too have been in scary situations because of my severe, chronic pain. It hasn't been the pain that scares me, it's been the government scaring most doctors from prescribing pain medications at all, the other doctors must jump through hoops in order to prescribe pain medications.
I've been through two periods of time with arbitrary shipping limits to my state put in place by the DEA, forcing pain patients to drive all over town attempting to fill our legal, medically necessary pain medication prescriptions. I've seen several patients crumpled up on the pharmacy counter in tears because they can't find their medications anywhere. Now there is a statewide database that is scrutinized along with our picture I.D. by the pharmacist, making us feel like criminals merely for filling a prescription.
I have an answer to those people who think they can decide for me whether my pain is sufficient enough:
"I may be dependent on my pain medication, but my Multiple Sclerosis is addicted to me"
Charles Breuninger
The spectre of the "Opioid Crisis" is now a "National Emergency" which is literally making *suspects and criminals* of all of us who are and have been on long term pain management with Schedule II medications. I, for instance am on Morphine and Oxycodone and have been for a number of years from 1 pain clinic and cannot even change pharmacies within the SAME COMPANY (Smiths/Kroger) and God forbid I should ever have to change pain management physicians now that the laws have changed! It would never happen. I would not get the medication I need. No way, no how. Not only that, but with the new "Federal Crackdown" (which is all due to the Phentanyl laced heroin that addicts are overdosing on) we all must go in ONCE PER MONTH now, versus once per 3 or 4 months to get our prescriptions and they must be hand-signed and hand-delivered to the pharmacy! I do understand that the "Pill Mills" were the initial problem that fueled the rise of the heroin epidemic, but palliative and cancer care are not the only reasons for long-term Schedule II pain meds. PPMS comes with a lot of pains, let alone the injuries I had from football and auto crashes prior to my diagnosis.
Food for thought to our legislators.
Barbara Cavello
I also feel the pain. Like you I have been on pain meds for going on 12 years. Yes I need them. I go to same dr same drugstore everything you do I also do. But when I tell someone I am on them all I ever get is you will be come addicted or they are really bad things. Never ever has anyone ask me if they help me in anyway at all because according to the world at large I am slowly if not already an addict. MS or I know my MS hurts I am in pain and the only think making my life able to cope with on a day to day basis are my pain meds plus all the other things I do like you to get through my day and nights. People need to stop this nonsense about pain meds we have them and some of us really need them. I also know there are those out there facing addiction. My own family has been touched by this problem so I do understand BUT I am not addicted I am monitored pretty closely. Why can we not just get what we need without feeling like a crimminal?
Pamela Rende
Our son who also had MS goes through this situation every so many months. It is so sad that because of the ones that abuse pain meds the ones that truly need it have to suffer.