Fibromyalgia: The Indeterminate Diagnosis

It’s interesting to see how simple I thought things were with my own diagnosis of Fibromyalgia, all those years ago. I remember thinking, now that I have my diagnosis, I just had to figure out what the heck I could do to get my life back together again.

My first few months with the diagnosis had brought me very few days of relief from the pain of that very first full flareup. Even with the medications that my doctor had given me and the list of supplements that I had found myself, it seemed nothing helped ease the flare ups once I was in one. And what was worse, I was missing significant training time and backsliding on much of the work that I had achieved over years leading up to the diagnosis as an athlete. I didn’t know what was worse; the side effects of the medications, or the fact that I couldn’t just get back to the all important-to-me athletic training. But I soon found out that it was neither of these two things.

Fibromyalgia is what is called an indeterminate diagnosis. That means there is no real clear medical test to accurately classify who does and who does not have the disease. This means many people with the disease may actually have something else wrong, but because the medical tests don’t show anything else wrong, they are handed the fibro diagnosis. It becomes the catch-all diagnosis for everything unexplainable that has body-wide pain. And while one doctor may be accepting of having a fibromyalgia diagnosis, others look at it as a fake disease created to simply allow someone to get more attention from the medical community, from family or friends, or even just to get more pain pills.

I’m starting to believe that when you are given a diagnosis that is indeterminate it’s sometimes worse. These diagnoses seem cause a lot more pain and frustration. With something like fibromyalgia, it’s very easy for another doctor, coworker or someone on the street to say that you are faking your illness, which isn’t true if you say you have something that is determinate, like cancer. I still get embarrassed at times when I have to tell someone I have fibro. As the words come out of my mouth, my mind starts wandering. ‘What if they don’t believe me?’ ‘What if they come out and say they don’t believe me?’ ‘Do they think I’m faking right now, holding my cane and leaning heavily on it as I speak?’ ‘Maybe they think I’m a pill popper, trying to get more opioids to be high’ ‘Maybe they think I am just someone so full of drama I just want all the attention and that is why I say I have fibromyalgia.’ I’m 99% sure that everyone who first gets this diagnosis has these types of situations happen, and the very same ‘what if’s’ game playing in their head. Unfortunately, that doesn’t get much better. I still hear those thoughts in my head even years later.

In some ways, I think if I had a determinate diagnosis – something that a positive medical test can give a clear clarification as to whether or not you have a disease – it would be easier. There are many times in the middle of a flareup of pain that I would even wish for that determinate diagnosis, no matter how bad it was. Anything but fibromyalgia. I don’t care if it’s cancer, or something just as horrible. I don’t care if it’s something that I will sooner or later die from. Just not fibromyalgia. Just not a disease that I have to explain in detail to almost everyone and get “those” looks as I explain. Perhaps a determinate diagnosis would give me so much more peace of mind. I wouldn’t be questioning myself after hearing yet again from someone that this diagnosis is “All in my head.” Perhaps I wouldn’t be questioning my sanity so much as the pain levels rise in my body.

The fact that so many people get lumped in with fibromyalgia makes things even harder for those studying the disease to try to come up with a root cause and that long-desired cure. There are already many causes to this disease. Mine has multiple root causes – one happens to be congenital, a second is significant stressors on my body, and a third is adrenal issues. Someone else could have simply had a serious allergic reaction to cause the fibro or another person could have had an operation where fibro was the result. And still someone else could have simply been involved in a significant accident that brought on the fibro (Morgan Freeman has fibro because of an auto accident).

The fact that there are so many root causes means what works for one person isn’t going to work for another. Cymbalta, a selective serotonin and norepinephrine reputake inhibitor (SSNRI) is a drug that is approved for fibromyalgia pain. It did nothing for me, except to make me gain 30 pounds that I’m still struggling to get off. Many others say Lyrica, also known as pregabalin, has taken all of their pain away. But again, it did nothing for me but cause significant side effects. The list of pills and remedies people use for Fibromyalgia is staggering. It’s so bad that I know fibro sufferers that greet someone else with the diagnosis with the question, “So what are you on?”

Unfortunately many of us handed this diagnosis don’t have much to go on when it comes to why we got it. There isn’t a path that is set in stone that we can walk. Instead, we have to find our own way through this crazy diagnosis and how we can personally find relief. We have to be our own health advocate. And while that sounds scary, there are great first steps that can be taken to get started. Keep a pain diary that includes what medications have been taken for pain and for the disease in general. Look for connections with other diagnoses that have been received in the past. Take stock of how much stress is going on and see if it can be reduced in some way. All of these things take time to find the meaningful information, but I firmly believe the information becomes more and more valuable the longer it’s tracked.

There may never be a clear test to give an accurate diagnosis. And there may also never be a cure for this horrible atrocity of a disease. But I can’t give up hope, and I’m going to do my damnedest to keep taking care of myself to make this disease as manageable as possible.

Having Fibromyalgia Is…

Hanging out with my dog Natasha during a recent fibromyalgia flare

It’s one thing to say, “I have Fibromyalgia.” It’s a total other thing to actually know what fibro sufferers go through day in and day out. With that in mind, I thought I would share some daily struggles and extra things I have to do in order to get through the day.

Having Fibromyalgia is having a cane in every floor of your home and in your car because you don’t know when the pain will make you have to use it.

Having Fibromyalgia is one day being able to help your family clean the house and the next morning not even being able to lift clean clothes to fold them.

Having Fibromyalgia is going into work full of pain but doing your best to mask it at work so not to draw attention to yourself.

Having Fibromyalgia is having long discussions with my husband to determine whether or not the flare up of pain is bad enough to take the heavy pain medication I get from my doctor. These discussions include several points: How many I’ve taken for the month; How many other pain meds I’ve taken that day and what else I’ve done to try to stop the pain before I go to the big last resort; And whether or not I’ll go over the allotment that the doctor allows me to have each month. (And to answer that question, my doctor allows me to have ten hydrocodone tablets per month.)

Having Fibromyalgia is being at work and typing one sentence too many on a keyboard and having your hands cramp up so badly you can’t even hold a phone.

Having Fibromyalgia is not allowing your cat to walk on your legs because it hurts too much.

Having Fibromyalgia is watching your husband walk your dog without you because the pain in your legs is so severe that you can’t stand or walk very far distances.

Having Fibromyalgia is not allowing your husband to turn on the ceiling fan or open a window because the airflow hurts your skin.

Having Fibromyalgia means not being able to travel in a car long distances without needing multiple days to recover.

Having Fibromyalgia is having your legs, feet, arms and hands go numb on a whim.

Having Fibromyalgia is doing your best to avoid the freezer or refrigerated aisles of a grocery store because the change in temperature hurts.

Having Fibromyalgia is learning how it feels to have pain just breathing.

Having Fibromyalgia is having brain fog so bad you can’t remember names of people or specific words long enough to have coherent conversations with anyone.

Every one of these have happened to me this past week as I continue to battle a Fibro flare up, thanks to the up and down weather here in the Midwest. I’ll do what I can to rest tonight. And tomorrow, pain or no pain, I’m going to get up, find comfortable clothes to wear to work, and see how productive I can be.