Living with the symptoms of Fibromyalgia can be life-changing for many. We deal with common symptoms such as pain and fatigue on a regular basis. Many of us, however, also deal with symptoms that are far less known to those who not live with the disorder.
Fibromyalgia is a full-body disorder. It can cause everything from brain fog to sore throats and everything in between. Before I had my Fibromyalgia diagnosis I had no idea how involved it was. Once I had a diagnosis I took the time to learn everything I could about the disorder. It wasn’t until then that I began connecting the dots between symptoms I had dealt with for years.
Some symptoms of Fibromyalgia are so off the wall that it’s hard to believe they stem from a nerve disorder. Who knew that things like upset stomach, rashes, or blurry vision could come from this? Before I had my diagnosis my knowledge of the disorder was limited to what I learned in EMT school, which wasn’t much. In fact, many of my colleagues in the emergency medicine world saw it as a “drug seeker” condition. Although I always tried to have empathy for my patients I didn’t understand what was going on with them until I experienced it for myself.
There are some symptoms, though, that many would prefer to forget about if they could. They certainly aren’t those that get brought up in conversation. These are the more embarrassing symptoms of Fibromyalgia, and they can be just as life-altering as the almost daily pain.
Memory loss has to be one of the most frustrating symptoms of Fibromyalgia for me. I didn’t realize how bad it was until about a year into my diagnosis. I had lost much of my long term and short term memory by this point.
Long term memory loss has been the most painful. Things that I know I should remember about my children’s early lives are gone. My own childhood survives only in bits and pieces. As a very nostalgic person and lover of history, I feel some days as though I have been robbed. I feel as though those memories are mine and I deserve the ability to enjoy them. However, no matter how hard I try they just aren’t there.
Short term memory loss really began to be bothersome when I attempted nursing school. I have always been studious and consider myself a lifelong learner. I was fascinated by the medical field and devoured the books that were allotted to me for the courses. However, even after hours upon hours of studying the information was never there when I went to access it. Rather, it was there but just not accessible to me. It was as if it were behind a semi-opaque door in my mind. I could almost see the outline of it and knew that I could identify it but I couldn’t bring it to the forefront to be of any use to me. It’s a difficult phenomenon to explain to someone who hasn’t experienced it.
Memory loss has made things extremely difficult in my marriage as well. My husband will bring up something we had discussed days before on occasion. No matter how much I believe him I have no idea that the conversation ever happened. I think this is when it is the most frightening to me. When I know something should be there in my mind but it.just.isn’t.
Muscle spasms are often painful sudden contractions in any part of the body. They can be especially bad in the back, legs, or upper arms for those with Fibromyalgia. Many of the muscle twitching I have occur in my upper arms. They seem to last all day on some occasions and are extremely painful.
In contrast to muscle spasms that are caused by the sudden contraction of large muscles in the body, twitches occur in the smaller muscle. For as long as I can remember I have had a twitch in my eyelid that will occur for no particular reason. While it isn’t painful like a muscle spasm, it can be quite distracting.
The most disturbing of the three for me is the tremor I have developed. In fact, I deal with both a tremor of the hand and internal tremors that occur in the evening several times a week. Internal tremors are a strange phenomenon. It almost feels as though you have a cell phone set on vibrate that is going off somewhere inside your body. For me, the sensation travels through my arms and I can occasionally feel it in my chest. A shaking hand has caused numerous embarrassing issues for me.
The idea of a sex life can be a depressing one for many who live with Fibromyalgia. Sex itself can be painful due to reproductive issues. When we aren’t in pain we may not feel confident enough for sex due to urinary issues. The two in combination can make intimacy less than desirable.
Studies have shown that women with fibromyalgia are more likely to have reproductive issues. I myself have diagnoses of PCOS, Endometriosis, and uterine fibroids. I had a partial trophoblastic pregnancy in 2006 and had a partial hysterectomy in 2008.
The loss of my ability to have children drastically affected my mental health. The pain that I deal with from these symptoms has affected my sex life just as much. In fact, my endometriosis is so bad that although I have no uterus for it to grow on it has returned several times, growing on other parts of my body. In 2015 it returned growing on my lungs and causing a pneumothorax ( ruptured lung).
Urinary issues can be common in women who have had children. However, the degree to which they can be amplified by Fibromyalgia is downright aggravating. Symptoms of Fibromyalgia such as leaking and urgency can cause women to have security issues and shame. Pain from cystitis can cause many issues as well.
It’s not much of a surprise that someone living in almost daily pain would have issues with poor mood. Women with Fibromyalgia are far more likely to deal with anxiety, depression, and other forms of mental illness.
Daily guilt can be a huge problem with Fibromyalgia because of the sometimes sudden inability to take part in life. Having to cancel plans with friends because you can’t get off of the couch. Feeling lazy because you couldn’t get your laundry done for the day. Beating yourself up after a day of pain caused you to snap at a loved one. Guilt and Fibromyalgia can almost go hand in hand some days.
This, along with the constant pain, brain fog, and other symptoms of fibromyalgia can quickly lead to a poor mood. There can be a sinking feeling with the realization that our lives are changed forever with this diagnosis.
Anxiety can be an issue with Fibromyalgia as well. We can overthink every symptom we have at times, trying to figure out if it’s from Fibromyalgia or if we are “normal people sick”. Is it the flu or just more body aches? Is it chest pains or costochondritis? Anxiety can take hold when we realize we have so much to do but can’t break out of the fatigue long enough to do it.
Irritability can be a major part of Fibromyalgia as well. In fact, the pain that we live in can make us downright mean at times. This can lead to anxiety as we try to stop ourselves before lashing out. It can also lead to depression as we ruminate over a situation in which we weren’t our best.
I could sing the whole Pepto-Bismal jingle here when it comes to the digestive symptoms of Fibromyalgia. You know the one…nausea, heartburn, indigestion, upset stomach, diarrhea. At one time or another everyone with Fibromyalgia will have to deal with each of these at a very intimate level. Sometimes for days at a time!
I deal with a lot of guilt because of nausea I experience from Fibromyalgia. I can walk into a restaurant feeling hungry enough to eat half of my menu before the food comes. Then, I take a few bites and can’t stand the sight of it because my nausea kicks in. I get nausea from driving, cooking, cleaning, and on some days just sitting on my couch.
Before my diagnosis, I believed that many of the stomach cramps I have dealt with were from my Endometriosis. However, as time passed they decided to move up my stomach to an area that pelvic pain just doesn’t reach. At times the pain is unbearable and can be long-lasting. In general, there’s no rhyme or reason to it either. It could be that I ate something that didn’t agree with my lack of a gallbladder…or it could just be a Tuesday.
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