What do you want others to understand about your fibromyalgia life condition, that others don’t seem to realize?

What do you want others to understand about your fibromyalgia life condition, that others don’t seem to realize?

My fibromyalgia is considered to be at the severe end of the scale.

When one has a disease/illness/condition where we frequently get the “but you don’t look sick” cry from the healthy unknowing masses, it is a foreign concept for outsiders (for lack of a better term) to understand the concept of widespread chronic pain.

The first thing we need you to know is that we aren’t suffering from something that will eventually just go away. My diagnosis was made in 2009 and has been confirmed by several other doctors since then – 2 rheumatologists, 1 sports medicine specialist, 2 orthopedic surgeons, 2 general surgeons, 4 family practice MDs, 1 endocrinologist, 2 cardiologists, and a GI doc.

They pay close attention to what I say too. They know that if I have to have a procedure of any type, that I will not have the typical healing of the rest of the population. They all got to know me well enough to know that if I say “I’m having trouble getting (fill in the blank with whatever they are specifically treating me for) pain under control,” that I am in serious trouble.

It doesn’t go away. It is everywhere. It is relentless. And for me, as the years go by, it just gets worse. It is also not something that I can just get over either.

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I have no way of planning what days will be good and what days will be bad. On bad days, I go into hiding. I even hide from my significant other as much as I can. Since right now I am unmedicated, I don’t have any way of relieving my pain to a lower level. For me, a good day is one where I can actually walk through a supermarket without the use of an electric cart. Those days just don’t happen often.

I don’t enjoy not working. I miss my old life. I miss being able to pull off the 100 hour work weeks. I miss the companionship of various different kinds of people. I miss associating with healthy people. I would give anything to be that person again instead of this woman whose doctors, over the course of two years, finally convinced her that she needed to permanently go out on disability – the federal, social security kind that one never comes back from.

Another misconception is that if we smile and seem happy that we must not be suffering that much. When one has had this condition for a long time, one learns to cope with it. Coping does not mean that we are improving, it means that we have learned to mask our pain in public.

I know that some with fibro do go to the Emergency Room more often than others. Personally, I don’t. When I lived in Colorado, my doctors specifically had a note put in the system at my local hospital network noting that my fibro was very much real and that I am quite possibly the most stubborn person they will ever encounter.

What I want new ER doctors who I might encounter in the future to know is:

  1. I most likely should have been there anywhere from hours to days before I actually have shown up. I am not a drug addict nor a pill seeker. I do not get high off these, I get some degree of actual relief.
  2. If it seems like everything they do is hurting me, it is. When someone puts a blood pressure cuff on me and begins to inflate it, I get tears in my eyes. I actually cry.
  3. If I give them a number on the 1–10 pain scale, it is probably several points above anything than other patients have reported at that number.
  4. And finally, listen to me. I know my body. I know my body in such a way that I actually speak in medical terminology, I have taken the time to educate myself, and I am smarter than you will ever know.

Finally, I have also had people say to me that they think that they could handle what I go through. I seriously doubt that. I would not wish this on my worst enemy. If a normally healthy person walked in my shoes for even one day, I am betting that before the end of that day, they would be at a doctor’s office begging for pain meds.

And since last September, except for a couple of brief time periods where I had to give in and get them (shingles, tooth extractions, and a sprained back), I have operated without any sort of opioids. I needed to know just how bad my pain was. I now know, and I want my meds back!

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