Fibromyalgia- Deconstructed
A Definition
According to the Mayo Clinic: Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.
Symptoms sometimes begin after physical trauma or illness or significant psychological stress. Other times, symptoms gradually accumulate over time without a triggering event.
Women are more likely than men to develop fibromyalgia. Many who have fibromyalgia also have tension headaches, IBS, anxiety and depression.
There is no cure for fibromyalgia, however a variety of medications can help control symptoms. Exercise, relaxation and stress reduction. [http://www.mayoclinic.org/diseases-conditions/fibromyalgia/home/ovc-20317786]
Let’s begin the deconstruction, because it is more than just a diagnoses, it’s more than just taking some medicine and getting better, and it’s more than just picking up where you left off. A diagnoses of fibromyalgia doesn’t really clarify anything – there’s no light bulb moment. In reality, it makes things even more confusing and frustrating and what is worse, family members only have the vaguest understanding of what fibromyalgia is and sometimes what they know is entirely wrong. So we’re going to start here with Misconceptions of Fibromyalgia.
#1.) It’s not a real illness, it’s all in their head. I think a big problem with this perception stems from the use of anti-depressants to treat fibromyalgia. Don’t misunderstand, Cymbalta is pretty widely accepted as being a go-to drug to treat fibromyalgia and for many patients it does work. But just because a medication for depression helps to alleviate some symptoms, doesn’t mean it’s all in your head.
“In people who have fibromyalgia, the brain and spinal cord process pain signals differently. As a result, they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem.” [http://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia/art-20048097]
#2.) Now that you have fibromyalgia, it should be easy-peasy to get disability. Although you can certainly be approved for disability if you have fibromyalgia, it is by no means easy. “It’s a misconception that there’s a “list” of conditions that are covered by SSDI. Rather than maintaining a list, the agency looks at whether an individual’s symptoms are severe enough to be disabling and reasonably prevent employment. You also have to have an adequate work history, which can pose a problem for people who become chronically ill when they’re young. For those people, the agency offers something called Supplemental Security Income. However, being approved for SSDI benefits is not an easy process by any means, and most applications are rejected on the first attempt. More people are approved during an appeals process that can take a considerable amount of time.” [https://www.verywell.com/disability-with-fibromyalgia-715820] I will interject here that I have recently applied for SSDI, so I will let you all know how it goes. As from what I have heard from others who have gone through this process all across the states, I am almost guaranteed to be declined on the outset. It’s like a twisted rite of passage.
#3.) You Don’t Look Sick. Alright, I have to say that this one makes me come a bit unhinged and I am really glad that in recent months I have seen some YouTube videos of people who are dealing with a variety of chronic illnesses, where they show you what you might not be able to see beneath the clothes, the makeup, etc. As for my own dealings with this, I have found it supremely difficult in both explaining to someone how I can go from having good days where my pain is manageable and bad days when it takes every ounce of my being to get out of bed and “act” normal. In my situation I have a double whammy. I have the SIJD [sacroiliac joint dysfunction] which causes significant pain, my fusion hardware that is causing significant pain and fibromyalgia. I never know from day to day how I am going to feel, but, there are some days I feel better than others. Those days I am feeling my version of good, is often misleading to people who don’t understand my world and it is difficult pulling someone’s head out of the sand perception. The only advise I can offer is try to educate the people around you to whom it matters that they understand. You may not be able to convince the neighbor you only see once in awhile when you get out of the house, but sibling’s, significant other and family, it is important they understand. We need support, not doubt.
#4.) If you lost some weight you’d feel better. There is a running myth that only overweight people get fibromyalgia, or worse yet that it is an excuse not to get up off the couch and move. Then, on top of the frustration of being in pain and exhausted, you are feeling miserable because you gained some weight. The very nature of fibromyalgia can make it difficult for even someone who was very active before they developed the disease, to get proper exercise. The most important thing for someone dealing with fibromyalgia is to work on making healthy choices. Focus on nutrition, focus on being mindful of what you are putting into your body and weight will be less of an issue. Small steps rather than great big, leaping ones that you are less likely to stick with.
#5.) You’re not sleeping, of course you hurt everywhere. Let me straighten something here, because I feel as though I am always trying to explain myself to people. There is a difference between tired and fatigue. Tired, is alleviated through rest, whereas fatigue is not. The only way I can explain it is this: It wouldn’t matter if I got 24hrs of sleep, uninterrupted. I have had days where I got 2 hrs sleep and days where I surprised myself and got a full 8hrs sleep and there is no remarkable difference. And other times when I slept 2 hrs and I don’t feel anymore sleep deprived than normal. The fatigue is bone deep and a lot of times we push ourselves through it and it actually can make us sicker.
Now that we got misconceptions out of the way, in the next post I will be covering some things you didn’t know about chronic pain and how those friends you know dealing with chronic illness could inspire you.
