Fibromyalgia

I’m not a car and you are not a mechanic

Doctor's dayDear Medical Community,
(mostly doctors)

I have lived with chronic pain most of my life. It was finally diagnosed as Fibromyalgia in my mid 20s. Of course nobody believed that. Doctors have tested and re-tested and argued about this diagnosis. Always eventually coming to the same conclusion and occasionally tacking on a new diagnosis in conjunction with it. The ones that do accept this is my diagnosis then tell me that EVERY single other thing I have issues with is because of the Fibromyalgia, which is only occasionally the case.

I now have been diagnosed with Fibromyalgia, Osteoarthritis, Degenerative Disc disease, Bursitis, 2 Bulging discs, and Migraines. At least these are the major ones, there are of course many minor add ons like TMJ, IBS, ect.

I am now in my mid 40s. I’ve been dealing with these issues for 20 years. Some not as many as others but long enough that I KNOW my own body. I don’t need to be re-tested over and over to make sure I have what other doctors have confirmed a multitude of times that I have.

I weigh 85 pounds when I’m healthy. That can drop but it seldom rises. I cannot take strong pain medications because of their effect on me. I cannot take some medications simply because my fibromyalgia has given me some medication sensitivities. I know what I can take and what works. Stop using me as a guinea pig.

But what I most want to address is this. I live in pain every day of my life. I have gone years without seeing a doctor until it’s simply unbearable because I am tired of feeling like nobody listens to ME. I’m tired of being treated like I’m crazy, stupid, insignificant, or not worth your time. I’m tired of being treated like a drug seeker before we’ve even discussed what kind of medication I take. What I take is less than what most people take for a tooth ache.

I don’t like pills. I prefer to try not to take them but I also don’t like to live in pain. And in this whole 20 years only one doctor has ever looked at me and said “In this day, nobody should have to live in such pain as you do.” She’s right!

mechanicDon’t get me wrong, I understand your dilemma. I get that people have taken advantage and used medications in the wrong way. I’m not holding you 100% responsible. But at the very least treat me with some respect, get to know me, talk to me, LISTEN to me, and find out my full story before you judge. Remember that this is MY body and at least listen to what I have to say. Work WITH me, not AT me or against me. I’m not a car and you are not a mechanic. I am a person with a body that suffers greatly. I want a life and I want you to help me achieve that.

I am but one person suffering from chronic pain. There are so many of us. And many of us have developed issues with trusting the medical community, doctors in general, because of how we are treated.

I remember a time when your family doctor was the person you went to about everything. When your doctor was a trusted friend and guide in the area of your health. I remember when doctors listened and gave advice, instead of talking at you, ignoring you, and making demands.

All I ask is that you remember the reason you became a doctor. For most, I assume, that was to help people who were suffering. We are suffering. Please take that seriously and take it case by case. Don’t lump us all into the same barrel because we won’t fit.

Thank you

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Now….

Dear Users (for lack of any idea what to call you),

I know that you think you’ve found a neat way to make money by getting pain medications with your insurance and selling them for cash. I know some of you simply enjoy that feeling that the pain medications provide, though I am often at a loss as to why. And maybe there are reasons I’m unaware of as to why you have taken advantage of doctors and prescription medication, but let me tell you the damage you are doing.

Unless you have lived the life of someone who suffers with pain every day or lived with someone who lives in the range from 6 – 9 on the pain scale most of the time, you cannot truly understand what it’s like, but I’ll try to explain.

Most of us don’t want to live in a daze. We try not to take pain medicine unless it’s absolutely necessary. Shocker! I know. But we long for the time when we didn’t struggle just to get out of bed. We cherish the rare moments of pure clarity of thought. Our pain keeps our minds so busy most of the time that we often struggle just to think clearly and speak clearly.

Sadly though in order to live even something close to a normal existence we often require pain medication. Just to do my grocery shopping I have to take something before going or I may collapse partway through. Just to go play bingo with my friends I have to take something so I don’t get a migraine. And when I don’t have it to take my pain can get so bad that any sane person would go to the hospital, though I try not to do that because often the stress can cause worse pain.

For some this pain stops life as we used to know it. Sometimes my husband can’t even hug me because my body feels bruised, even though it’s not. Twisting or sitting the wrong way can cause excruciating pain. Even sitting still and doing nothing often doesn’t help as a migraine can develop from pain I didn’t realize I was having because I have learned to ignore it until often it is so severe I’m ready to lose my stomach.

I can no longer go out into the world and enjoy the activities I once did. I have to limit my activities and sometimes even that doesn’t help.

Because people have abused prescription medications, it has made life even more of a struggle for those of us who need them just to survive. So many doctors will no longer even SEE a patient with chronic pain, and that number seems to grow every day. The reasons are many but one of the most common reasons is because so many have taken advantage of “pain”, which is difficult to prove or disprove.

Because you have taken advantage and abused the word pain and abused the medications, those of us who need them in order to truly LIVE often cannot get anything that helps.

I just want to have a life. I want to feel like living and be able to do so. You don’t have the right to take that from me, but you do. I know you do it without realization that you are diminishing my life, but that is the result.

Just think about that the next time you are chopping up one of those precious pain medications that are so needed by many. Think about that as you snort your next line of whatever pain medication is your preferred method to get high. That high might be wonderful and make you feel really good, but how many people are suffering because you continue to abuse a medication that allows another to just do a few things that make life closer to normal?

_____________________________________________________

Related article – The Dark Side of the Anti-Opioid Campaign – in my opinion another must read.

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About Tracy Seekins

Long time writer/blogger. Has been on a lifelong journey for self enrichment. This is a journey which never ends and I look forward to sharing it with you.

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