Fibromyalgia has given me a gift. It has pushed me to reflect, evolve, and break up a solid foundation of untruths I’ve lived by. Trauma happens to all of us, at least that is what I’m finding as I share my story. We all have things we need to work through. Some do it sooner than others.
Childhood Trauma is being found to be linked to the development of Fibromyalgia. I think what we’re starting to appreciate is that when you have traumatic experiences as a young person, it rewires you. And the way in which you interpret physical symptoms is changed forever,’ said Steve Passik, PhD, a psychologist and Vice President of Research and Advocacy for Millennium Health.”
One way I have always gone through life is by playing the “mother figure”. From a very young age, I remember peers and elders saying things like “Katie is the mom of this group” and “you’re an old soul”. I remember being 10 years old, my mom cemented to the couch again. I didn’t know why. Six years later, she would be committed to Kalamazoo Psychiatric Hospital (and spend the rest of her life in the State’s care) for Schizophrenia and Bipolar disorder.
Cultivating a Caretaker Persona
When she was on the couch for days on end, I would “cook” meals, do the dishes, rub her feet, and scratch her back. My younger sister and I would stay out of her sight as much as possible. When she was manic, it was a crapshoot. She could be a lot of fun, bringing us to get ice cream or buying us things we liked. However, she could also be violent. Not so much physically to us, although there was some of that, what she’d do a lot screaming and breaking of things. It was scary.
As an elementary student, I’d befriend those I saw as outsiders. I’d see it as my role to help them. In 5th grade, one of my friends was Joey. He had six or so siblings. He’d come to school dirty and wearing raggedy clothes and shoes with holes. I made sure to protect him at recess (bullies saw his petite frame as easy pickings) and brought from home anything I thought he could use. My home life was not much above his financially, but my mom did obtain decent clothes (generally garage sales and donations) for my sister and me, so I felt I could help him, too.
This mother-figure that made sure to take care of those around me continued into college, my marriage and family, and into my profession as a teacher (both to my students and colleagues).
I’ve begun to realize that this role has served me. Yes, I did it to help others, but I also received what I wanted. Maybe it was a distraction from dealing with my own wounds, helping someone with theirs. Maybe it was to get the love and appreciation from the one I helped. Maybe it was to get the praises of those around me. Maybe it was to be needed. Probably, it was all of these. Still, it led to me ignoring my own needs- physically and emotionally. I would regularly get through a day of teaching, realizing that I had not had anything to eat or drink all day.
Learning I’d Been Living a Lie
This realization comes through writing. Often my hand flows without me knowing what’s going to come out. It’s as if an invisible spirit has taken my fingers over and I sit and watch as the words fly out. Often what I write is very close to the first draft’s version. When I read it, I come to understand a new insight about myself. There was little to no forethought about what gushed out. Many times I cry as I read it to myself-the knowing becomes so raw.
Below is a poem that brought me an understanding of one of the falsehoods I had lived by.
By Katie Clark
I am looking for the light. What sparks? What ignites?
Too long have I hidden in the dark; fanning your fire.
I too need to burn; burn bright and strong.
I too need to know that who I am counts.
That just me, not what I've done for you,
Actually has meaning and worth.
It's not your fault. I wanted with all my heart to give you my-
But now, I will sit here, staring up at the stars calling out from the blackness. Striking my flint against the steel of my thigh.
My sparks fly out onto the carefully cultivated tinder.
The sparks glimmer and glow orange, going out before I can give it breath.
I strike again, showers of promise shine down on the awaiting fodder.
I don't hesitate.
I blow gently, timidly at first, hoping that my fire will burn strong and vibrant.
You come and sit next to me,
reminding me of all the oxygen I gave to you to hold.
You pass it back to me.
I blow with a giddiness that encircles those embers and brings it to flame.
I will get you sticks, you say.
I've only brought logs, and they're not ready to ignite.
Your offering brings my fire alight and bright.
Now, you nudge, add your first log. I think it's strong enough.
It Was Complicated
The relationship I had with my mom was complicated at best. I was so angry, disgusted, and ashamed with her nearly all my life. Yet, I respected her, loved her deeply, and thought she was amazing. After her suicide in May 1991 when I was 27 years old, 5 months after my son was born, I went through many stages of emotion: anger, judgment, love, inconsolable grief, forgiveness, and shame. This poem poured out of me after listening to a speaker talk of forgiveness.
By Katie Clark
You defied them.
They said you were mentally ill.
You said you had hypoglycemia-
drinking raw eggs like Rocky.
They put you in a hospital.
Outwitting your opponent
with your 140 IQ.
They put you in a home
and told you not to smoke.
You went to your best friend's house and bummed a carton of cigarettes.
They let you get your own studio apartment.
You said, screw this,
I don't live because you say.
So you, let the blood run out
Soaking into the shag carpet.
A Desperate Obsession
About three months after my diagnosis with Fibromyalgia, I began to massage myself, relentlessly. The more I massaged, the more I needed to and more places that seemed to need it. My massaging was not gentle. I would poke and press as hard as I could take directly onto an aching muscle: calves, thighs, feet, thumbs, neck, chest, shoulders, upper arms, lower arms, armpits… This began to happen when I was reading, sitting as a passenger as my husband drove, when I was out for drinks with friends, while I was teaching… It began to be an obsession. Again, after some reading about Complex Trauma (childhood exposure to multiple traumatic events often of an invasive, interpersonal nature and the wide-ranging, long-term effects of this exposure), I sat down to write and this came out.
By Katie Clark
Sitting across from him, I watch his question mark gaze
follow my own fingers kneading my arm like bread dough.
Deep within the fibers of my body is an aching-
the famished maw of need.
In the shower, I see purple and brown finger painted bruises on my calves, thighs, forearms... chest from kneading the angry gnawing with no respite.
From foot to skull, silent shouts seep.
Bone to muscle to flesh-
exposing the desperate deprivation, demanding to be satisfied.
How funny it is coming to love her-pain and all.
To understand that she is just asking for what she has needed all along.
Fibromyalgia has forced me to look inward. I’m grateful in many ways. I am coming to know myself. I plan to live FULLY as myself from this time on.
What have you learned about yourself as you deal with chronic illness or issues life has brought you? What benefits have you reaped as you wade through these obstacles?
When I received the diagnosis of Fibromyalgia in November of 2018, I was actually relieved. It helped to explain the issues I was having and gave me, then, a pathway for learning to manage it. Also, it ruled out life-threatening diseases, such as cancer through all the testing needed to rule out everything else. While Fibromyalgia is a life-changer, it does not in itself cause damage to the body and is not considered fatal. This new diagnosis of a rare disease that is damaging the lining of my arteries and can lead to stroke and heart attacks is not one that I was prepared for when I visited my ENT about the whooshing sound I’ve had in my ears for the last 15 or so years.
Related Posts on FMS Diagnosis
1st Specialist Visit: Otolaryngologist (Ear Nose Throat Doctor)
I had asked my primary care physician (PCP) if he would refer me to an ENT to check into the bruit (a whooshing or heartbeat sound) that I constantly have playing in my ears. Over the past 15+ years, I have mentioned this issue to my doctors, but after listening to the back of my neck, they just shrugged and really didn’t say much about it. After finding that it had a name (through discussion in one of the Fibromyalgia groups I belong to), I looked up what may cause Pulsatile Tinnitus. And while the reading I did say that it was pretty common, it also said it could have more serious reasons behind it: an aneurysm, increased pressure in the brain, and hardening of the arteries, among some other scary things. I was going out of the mentality of “just checking”, never thinking it would be anything of issue.
My visit with the ENT was difficult for me. I think, just me guessing here, that he thought I wanted him to stop the annoying sound that has kept rhythm to my life day in and day out for so long. After checking my hearing and other possible issues, he met with me to tell me the results. “You hear like you’re a teenager and there are no other problems that would be the cause of the pulsatile tinnitus.” He then, read my chart closer, and brought up Fibromyalgia. In the course of our talk, he brought up going for therapy three times. Of course, he had no idea that I have (and believe it to be helpful for people living with chronic pain and/or chronic illness), but the way he said it made me feel silly for coming to see him about the issue in the first place. As I prepared to leave, he did say that he was going to recommend I have a CAT scan with contrast of my head, “Just to rule out all issues.”
I’ve gotten quite hesitant about any medical procedures, so after setting up the appointment, I actually messaged him and said, “If you really don’t think that this is anything to be concerned about, I would rather not have the CAT scan.” His reply is that he thought it would be best if I went through with it so that we could be sure. And so, I did.
A few days later, I received a phone call from him. He let me know that the imaging showed that I had Fibromuscular Dysplasia (FMD) in my carotid arteries and that he had let my PCP know who would most likely follow up with some referrals to get it checked into. Of course, that led me to get on the computer to find out what FMD was. I quickly found some very helpful resources, but also found out that this was not only a rare disease but one that was life-threatening.
Here’s a very helpful explanation of FMD:
2nd Specialist Visit: Neurosurgeon
My primary care doctor referred me to a neurosurgeon and neurologist, in no particular order. So, when they called, I made the first available appointment for each one. The neurosurgeon was available first, a full two months before the neurologist had an opening. So, I went, not knowing at all what this appointment meant and what it would do for me.
I’m thankful to have found a couple of helpful groups to get more knowledge before going to the appointment, but I wasn’t quite prepared for how he received me. His first question after looking at my chart was, “Why are you seeing me?” Well, I pointed out, my GP made the referrals and he was the first to have an opening (I didn’t know any better). Again, I got the sense that he thought I wanted surgery to eliminate the Pulsatile Tinnitus. Ah no! I don’t want any unesscessary surgery near my brain!
He proceeded to barely check me out or ask me questions. He told me that I definitely had FMD in both of my carotid arteries, but since I have FM, IC, and the Nissen procedure for GERD 15-years ago, there really wasn’t necessary to check to see if I have it elsewhere in my body at this time. I sheepishly agreed with him. Again, I’m not wanting medical tests just to have tests. Not only are they costly but they are scary, especially during the time of the COVID-19 Pandemic. I left with the directions to see the neurologist, who he thought would agree with his thoughts on no further testing needed and to take a daily low dose aspirin (which I had already started the month prior).
3rd Specialist Visit: Neurologist
This time I was more prepared with a list of questions and issues I’m having. My main goal was to find out if I have it elsewhere in my body (for monitoring purposes) and find out what preventative measures I need to implement. This doctor did take more time with me and asked quite a few questions. He also did some physical checks having me push up with my arms, move my eyes around, walk in a straight line, etc. He was pretty matter-of-fact, but I felt that he was making sure to check into everything. At the end of our appointment, he noted concern about my fairly sudden increase in my blood pressure which, as he explained, can be a sign that I may have it in my renal (kidney) arteries. And so this coming few weeks, I am having a redo of the initial CAT scan with contrast because he wants to have it from the shoulders up, not of just the head as was done the first time. Then, an MRI of my brain “in case you have a stroke we want to have a baseline”, and an ultrasound of my kidneys to see if I have it there as well. He’s suggested that my PCP refer me to a cardiologist to check into the heart pain I have that is to the left of my sternum (breast level) which I’ve had since I was a teen and have always equated it with my body’s way of showing I’m stressed/anxious. It could be a sign I have it in the arteries of the heart.
I left the appointment knowing that there wasn’t any mistake that I have the beaded form of FMD on both of my carotid arteries, and because of this, I am to continue taking the low dose aspirin every day. However, his parting words ended up making me feel like I had a time bomb in my neck. He told me not to massage it, have a chiropractic adjustment of the neck, put weight on my neck, or move it quickly out of its alignment because I could cause dissection of the artery. What is dissection? A tear!
My Initial Reaction
In the office, I was calm and matter-of-fact like the doctor. However, once I got into the car with my husband and began to explain what I learned and what I was to do, I began to cry. I could feel the anxiety welling up in me. My neck, which normally has pain in it seemed all of a sudden more prominent. As I told Kelley what the doctor said about taking care of my neck, I really felt panicked. The past two years, I had done pretty much everything he had told me not to do to my neck.
When I was first diagnosed with Fibromyalgia, I had most of my pain in my shoulders and neck area. The summer I spent in physical therapy focused a lot of stretches in that area. I had gone to a chiropractor several times, each time my neck was jerked one way and the other. In yoga, I had extended my neck back and down. I did self-massage directly on my neck with my massage gun, generally on the highest level. All I could think of (and almost viscerally feel) was a ticking (coinciding with the heartbeat in my ears) time bomb ready to cause a stroke or worse.
That was seven days ago. Luckily, I had my EMDR therapy appointment that next morning. I have just started back after the initial pandemic lockdown. Then, some extra support from the Healing Circles group leader, Elaine Merryfield, through her Healing Messages cards she sent me. And on Friday, I had my first health counseling appointment with a fellow Michigander, Sharon Waldrop, who has lived with Fibromyalgia for 20+ years and has recently finished her training for wellness counselor.
In addition, I have done more research and have taken some steps to help me feel a bit more settled about having Fibromuscular Dysplasia. I know it’s a serious issue, but I also know that many live with it well into old age without having any issues. Through an online group, I’ve gotten more questions answered and have even found a doctor in Michigan that specializes in FMD. To my surprise, I was able to get an appointment with him in early January.
I know that dealing with this new diagnosis will be much like the process I went through in accepting and living with Fibromyalgia. I know there will be ups and downs, but overall, I know that I have the tools to continue living my life FULLY despite the disease.
How to Handle a New Diagnosis
Learn as much as you can: Finding reliable resources and learning about my illnesses has given me the needed information to impact the handling of my diagnoses. It helps me to have realistic expectations.
Take responsibility for your own care. I hadalways taken doctor’s directions as gospel, but what I have learned from having Fibromyalgia is that doctors aren’t able to know everything. One article I read explained that there are so many diseases/syndromes/illnesses/issues out there that it’s impossible to think one person would know everything about everything- that’s why it’s called practicing medicine. So, I now view my doctor more as a teammate. I sometimes give ideas (through my research) to him/her. I’ve developed trust in them and from them so that I have actually introduced new treatment ideas that they have said they’ll use with future patients who have the same issue.
Know your body. Make sure you keep track of symptoms and any other data that would be helpful for deciding treatment options. I do struggle with this one, but I have a few things that I use that have made me be a bit more diligent in keeping records. 1. The app DAILYo is where I keep track of my mood, symptoms, activities, weather, and medication at least one time per day. I can see a variety of reports easily. 2. Google Keep-I keep any questions that come up and even links to research articles to read or share. 3. My Health is an app that I have on my phone; it’s an online system that Spectrum Health care uses to communicate with patients. I can see appointments, message my doctors, order meds, see test results, etc. 4. Fit Bit: Right now I’m mainly monitoring my sleep quality with this.
Build a support team. This includes any experts in the area of your diagnosis. I have not only my PCP, but some specialists. I try to keep them all in the same network or at least able to communicate with one another. I also look to online groups who have both medical specialists and those living with the same chronic illness as me. This is probably where I have found the majority of helpful ideas for self-care and treatments that work.
Make a plan. My plan involves evolving self-care/treatment protocols. But, a plan won’t work unless it is faithfully followed.
Reach out for support. It’s easy to get caught up in wallowing in what isn’t pleasant news. Depression is a common occurrence in those living with chronic illness. For me, I’m seeking therapy and have a monthly meeting with a small support group for encouragement and help with developing healing self-care. I also am open with my husband who has been a major source of comfort. He is understanding; however, he also is great at pushing me to be active and making me laugh when I need it. I’ve also shared how I am with my sister and friends who are quick to give me a hug or want to talk (made a bit more difficult in the area of the Corona Virus). And finally, writing. There’s just something in it that helps me process things.
Live as FULLY as you can within the parameters of your chronic illness. Due to FMD, I won’t be skydiving. Never really wanted to anyhow. But I can get out in nature for walks, kayaks, and even X-country skiing. I can play make-believe with my granddaughter. I can have pamper-night with my daughter where we do facials, our nails, and watch JULIE AND THE PHANTOMS. I can create: writing, playing music, and doing crafts. Focusing on what I can’t isn’t helpful; focus on what I can and then go forth living.
What has helped you to deal with your diagnosis? What have you found to be detrimental? I will be sharing more about my journey with Fibromuscular Dysplasia as time goes on. This week, I have the head/shoulders CT w/contrast.
Update: I’ve been recently diagnosed with a rare disease that they think is actually underdiagnosed-Fibromuscular Dysplasia (FMD). I have it in my carotid arteries and am having tests soon to see if it’s anywhere else. FMD causes arteries to harden or become brittle. This can lead to aneurysms or tearing. One of the areas can be in the kidneys. Because of an abrupt increase in my blood pressure increase, I’m getting an ultrasound to see if I have renal FMD. I’m not yet sure if FMD in the renal arteries would contribute to issues in the bladder.
There are many, many co-occurring issues that can come with Fibromyalgia (FMS). Interstitial Cystitis (IC) is one of them that isn’t mentioned much in the FMS community. I was diagnosed with IC about 15 years ago, when I was 40. However, I believe I’ve had some level of IC for most of my life.
In the article Fibromyalgia and Related Conditions written by Dr. Daniel Clauw of UofM for the Symposium on Pain Medicine in 2015, he states,”Nearly all individuals eventually diagnosed with FM have several bouts of chronic pain in other regions of the body earlier in their life.” Among the long list of comorbid issues interstitial cystitis/painful bladder syndrome. He explains,”This disorder often begins in childhood or adolescence, and individuals who eventually go on to develop FM…”
As a child, I hated taking time out from life to use the bathroom. I prided myself on how long I could go without peeing. To do that, I didn’t drink much. Back then, there wasn’t talk about drinking water and certainly wasn’t a concern in my family. However, this penchant for not going to the bathroom, during my elementary years, combined with my people-pleasing ways would sometimes lead me to have accidents on my way home from school because I hadn’t wanted to miss anything that was going on in class.
As a teen and a female, I was acutely aware of my weight and body image. I always felt overweight and was conscious of what I put in my mouth. Back then I remember thinking and even saying that, “I rather eat my calories than drink them.” While this isn’t all that bad in theory, it didn’t mean I was drinking water. To me, water made me gag (I was that unused to drinking it). So, what it meant was that I didn’t really drink much at all. What I did do, though, was to eat a lot of fruit, mostly canned back then.
Then, I began my teaching life. My doctor at the time said that it was very common that teachers had urinary tract infections and bladder infections because they were infamous for not drinking water and not being able to go to the restroom as needed. At this time in my life, I went from UTI to antibiotics, to yeast infection, to UTI sometimes leading into a bladder infection, to antibiotics, to yeast infection,…over and over and over. There was a time when I found myself going to the doctor every couple of months. One odd thing, though, was often, the “infections” were found out to be false when the urine test was finally completed a few days after I had already started the antibiotics. At that point, the doctor would always tell me to finish them “just in case” which I dutifully did.
It wasn’t until I started having severe urgency and frequency (at this point I had finally learned that drinking water was important and had come to enjoy it) that led to a few embarrassing accidents at school that I went into an OBGYN doctor who also specialized in Interstitial Cystitis. At the age of 40, I was diagnosed with IC, after umpteen misdiagnosed infections.
As far back as I can remember, I had an aching in the area below my belly button. What made it feel better (and still does to a degree) is pressure and warmth. To my husband’s chagrin, I was the clingiest spooner at night (when I most noticed the aching). His cute booty provided the exact pressure and warmth to calm the ache and let me sleep. I didn’t know that ache was due to a problem with my bladder.
Been There. Done That
I was thrilled to get a diagnosis and find out that I was not having constant infections. I first was put on Elmiron for two years. This seemed to help with the pain at first; however, by the end of the two years, once I was off of it, I didn’t notice any difference. I was just used to the continuous dull ache in my bladder all the time. (I liken this pain to the ache women get when menstruating with bad flares feeling like my bladder was on fire.) Also, I was introduced toPrelief which is an OTC dietary supplement that removes acid from trigger foods. This does seem to help with pain to a degree. My urologist also suggested I take aloe vera. I’ve used Desert Harvest Super-Strength Aloe Vera Capsules, and these seemed to help some as well.
In addition to medication, I adjusted my diet as much as I could. I eliminated coffee (mostly due to the acid). There are some chicory and low acid coffees, but I have not found any locally. I have always been a semi bland eater due to acid reflux, so I have mostly stayed away from acidic fruits. However, with me being lactose intolerant (I could eat a piece of cheese and be cleared out for a colonoscopy), giving up all things tomatoes is nearly impossible. And I also refused to give up wine. These non-concessions are when I use Prelief.
Besides, the pain, the frequency (especially in the morning) and urgency (which comes up strongly and seemingly out-of-the-blue) was the most embarrassing and difficult issue I had to contend with, especially at work. As a teacher, even when we are all having a break, students would invariably want to talk to me individually during this time. Some would even follow me to the bathroom, and I’d have to finally say, “Excuse me” and hedge my head towards the staff bathroom’s door, for them to realize I had to use the loo.
I have used four types of prescription medication to alleviate frequency: Enablex, Tofranil, Myrbetriq, and Vesicare. These caused symptoms that were not fun: constipation, fatigue, dry mouth, dizziness, headaches, nausea just to name a few. And in the end, they didn’t really seem to make a huge difference which I only found out after I got the courage to stop taking them. For pain and the frequency/urgency issue, I have gone to four different pelvic-floor physical therapists. For someone who had planned what she would wear for her first delivery (for the 2nd, I knew better) and was too inhibited to get a massage from a stranger, this was really a step of desperation and a major lesson on not giving a damn. During my third stint of physical therapy, my urologist suggested botox injections at the trigger points in my bladder. This was an outpatient procedure that did involve me going under anesthesia. Sadly, I had no change in my symptoms. My last PT suspected I had a labrum tear in my left hip; she said that she had been finding a connection between IC and hip-labrum tears. She, then, referred me to a specialist who after an MRI verified that this was the case, so I had the surgery.
Being, in the end, these did not make much of a difference in my IC symptoms, I went to see another urologist who suggested it was time to implant an Interstim which a device the size of a quarter. This surgery was outpatient with local anesthesia only. I have a one-inch scar near the top of my left glute and a smaller incision at the sacrum. This healed up easily and being I did it during spring break, I didn’t have to have any time off from work. There is a remote control that can change the level of stimulation delivered as well as change the program which determines the direction of the electrical pulse. I tell people, “It’s like a pacemaker for my bladder.” This implant seemed to really help for a bit over a year (I had it two years ago). However, I began to have site pain in my left glute and was having ongoing sharp pain in my left psoas which became convinced was coming from the electrical stimulation and my crazy Fibro-amplified nervous system. I chose to turn it to zero for about three months. During those months, with chiropractor adjustments, medical massage, and yoga, the sharp pain went away. I was set on getting it removed. However, after seeing my urologist, and hearing what the removal would be like (not as easy as the implant surgery), we came up with a retry. She reprogrammed the device and set me up with new physical therapy which I have just started.
And so, I am working on retraining my bladder which in the end is just like retraining my brain with an addition of a few exercises. My goal is to be able to comfortably go on upcoming hiking trips (in which restrooms are not readily available and dropping into a squat in the woods isn’t fun to do every hour.)
REPRODUCED HERE and Updated ON PAINFULLYLIVING.COM 11/1/2020
After a three-year slide into brain-fog and loss of focus, the inability to function in my daily life, ever-increasing areas of pain for no apparent reason, fatigue so deep that it felt like all the iron had been taken out of my blood, and spiraling anxiety, I was diagnosed with fibromyalgia.
Being I was in peri-menopause, I chalked it up to the change in hormones.
I asked my friends (teachers and those around my same age), and many claimed similar issues of being tired, stressed, anxious, and waking up as if by the alarm at two in the morning nearly every night. But when I asked if they had pain on the inside of their knees, none of them had, so thought I may have injured myself.
Or as I would stretch my shoulders and legs during staff meetings (constantly getting up when others could sit), I got a few stares because I was the only one not able to sit still for the hour.
Just a Part of Peri-menopause?
I reported to my OB/GYN that I had a sharp pain under my armpits (a very specific point in each). I was sent to a specialist who told me that I was fine and just needed to stretch that area more. After doing a fair amount of research about the effects of hormones and dealing with stress, I went back to my OB/GYN when I began to experience anxiety that was interfering with my ability to handle the demands of my life.
She said that it was pretty normal to have the anxiety levels I was experiencing at my age. She diagnosed me as peri-menopause. She put me on 5 mg of Lexipro (an antidepressant), which seemed to help me, at first. Then the following start to the school year, things worsened, so I went on a higher dose of 10 mg. Even after this, I found I wasn’t able to teach (which came as naturally to me as breathing); I stumbled on my words, my sense of humor was gone, every lesson and interaction was stilted.
My Doctor Thought I was Just a Stressed-Out Mess
I never had an issue with being observed in my classroom; in fact, I always enjoyed hosting classroom learning labs for my district, being observed by 10 or so peers at a time while I taught. So when I couldn’t fill out my evaluation pre-observation form with any sort of coherence, I really knew something was wrong.
My children, diagnosed with ADD during college, said, “Mom, you have ADD. You’re the same as us. You need to be tested for ADD.”
So, I went to my general practitioner, bringing my husband along as a character witness because after we moved to the area, I had changed to this doctor who didn’t really yet know me. He saw that I was already on Lexipro, now 10mg, and offered to up the dose.
When I said I wanted to be tested for ADD (I had researched and thought it feasible that with the hormone changes I was no longer able to use the coping skills I had developed over my past 53 years), he conceded, saying that since you have this on your mind, we’ll have you do the test. I could tell he felt I was just a stressed-out mess.
However, when I did the computer test and 1:1 interview, I was surprised to find that I scored in the medium/high-level for ADD. After taking Vyvanse for a couple of weeks (I could tell I was handling life better), I re-did the test while on the medication and came out as functioning normally.
However, there was one thing about the diagnosis didn’t ring true to me, however; I was never scattered, unmotivated, or irresponsible during all my own schooling years. In fact, I was just the opposite. Any how, I was relieved with that diagnosis and was happy to let the Vyvanse/Lexipro combination help me through the day, functioning fairly well.
The Deep, Gnawing Pain Returned and Got Even Worse
This brought me to the end of a very stressful school year of many challenges and changes, and I thought I had figured out the issue, just a touch of the ADD and menopause. However, as soon as school let out and my husband and I were in our packed car driving from Michigan to California for an extended vacation, a deep, gnawing ache that began in my legs. I had accepted the pain under my arms and the inner part of my knees as something that went along with getting older, but this was a totally different pain that seemed to be gaining in strength.
No matter how I stretched or massaged, it stayed, moving around from upper to lower from left to right. That pain remained the rest of the summer and into the start of the next school year which due to many changes was to rival the last year as far as stress was concerned.
Now, the pain moved into my shoulders, neck, and arms (again switching from left to right). By November, I was barely functioning. The Vyvanse and Lexipro weren’t doing anything to quell the brain fog and utter exhaustion. I’d flop into bed every night upon getting home and spent much of my weekend in bed.
A Relief-Finally Diagnosed
Thanksgiving break was when my GP decided to do all sorts of blood work (when I beseechingly said, “Truly, this isn’t who I am. This isn’t my norm at all.” When the blood work came back, he said, that this could possibly Fibromyalgia.
I had never heard of it. Being the teacher and learner I am, I began to educate myself. It was truly depressing all the things I read about how debilitating and life-changing this Fibro thing was. Also, the reviews on the medications like Cymbalta scared me to death.
By December 7th, I was on long-term leave. I had given in by asking for a prescription after really wanting to avoid taking Cymbalta. I started with a 20mg dose, feeling some better, albeit, not liking the side-effects.
I retired from a 32-year teaching career just after I turned 55 in May of 2019. In April of 2019, I went for a two-hour evaluation interview for a Fibromyalgia 10-week, multi-disciplinary program at a local Rehabilitation Hospital (Mary Free Bed). I was officially diagnosed as having Fibromyalgia.
At that point, I knew a lot more. (Thank goodness for those who share their journey like Donna in her blog fedupwithfatigue.com). I was relieved by the diagnosis because it meant that I would be eligible to get into the pain management 10-week program and in my mind, get back to living.
Finding My Way
In the beginning, I created a LONG list of every issue I was having (much longer than the one below) in a note on Google Keep. I had it so I could remember to tell everything at each of my doctor’s visits. I felt like I had to prove that things were not okay and wanted to be taken seriously.
I have now deleted that note. Not that I don’t have most if not all of those things going on, but I’m now in a place that I accept what it is and am not looking for a cure from my doctor (because I don’t feel they have one).
I don’t want a medication if I can survive without one, so this is my plan of action at this point. Not that I won’t go back on Cymbalta or whatever if I must, but right now I prefer to handle the symptoms in my own way.
Issues I have that can go from light to severe and anywhere in between at any given moment:
Brain fog / Lack of focus: I was pulled over by a police officer the other day to my shock. He said I was swerving in my lane a bit and wanted to make sure I wasn’t under-the-influence. It could have been due to my losing focus or even to my self-massaging of my neck and jaw that I was doing on my drive.
All-over muscle ache: When I went to a chiropractor recently and she wanted me to mark on the body where the hurt was and what type, there wasn’t a spot on the body that wasn’t marked. Even my dang hands hurt.
Body drain/fatigue: I will be going fine all day and then, bam! I can’t go forth any longer. Sometimes I wake up that way and have to just rest.
Insomnia: About two nights in a row of little sleep; then a couple 2-3 nights of decent sleep and repeat.
Deep sadness: I don’t feel it’s depression because it comes and goes.
Aversion to strong smells, bright lights: I had always been someone who loved having the lights on and now am one constantly asking for them to be turned off.
Big fluctuation in body temperature: Especially in my hands and feet, which causes me to wear layers that I can take on and off-including socks, slip-on shoes or slippers, and even gloves. When in bed, I’m in and out of the covers all night.
Hands and feet edema: I have yet to figure out the cause.
Dizziness/nausea/headache: That just makes me feel unwell. This seems to hit in bouts and spurts. There was a time last fall and through spring that I couldn’t make plans or would cancel last minute on those I had made. This has become a lot less regular and I’m starting again to plan. However, mornings and nights are not my best times.
Bladder pain: I was diagnosed with Interstitial Cystitis in 2000. This is known as one of the co-morbid issues with fibro which I didn’t learn about until my fibro diagnosis. Urgency.
Stomach Pain: I went through a Nissen Procedure 2016 for acid reflux; while I don’t have as much acid reflux, my stomach is upset whenever I eat (no matter the diet) and I have continuous pain at my sternum.
Bowel issues: Diarrhea to constipation and back again, never really normal. However, I think this is more due to supplements and what I eat.
Posts that share my current symptom management:
I decided to start a blog about my experiences after first discovering what Fibromyalgia was and then that there wasn’t information out there that seemed to fully fit my own situation.
I have become pretty educated about what it is, how it affects me, the whys (as much as there can be), and how to manage it so that I can live my life FULLY, on my terms, even while having pain.
I feel that sharing my journey can give insight to others on their own, much like others have helped me. Also, blogging helps me to understand better how I’m feeling about things; writing helps me process. My posts serve as a bit of a timeline for me to remember where I’ve been in this process of healing and self-discovery.
In addition, I’ve always wanted to write. For me, this is good practice and if others take time to read and are helped in any way from what I’ve written, then, I’ve fulfilled my purpose. If no one reads it, it serves in developing what I love (writing) and helps me to process my journey.
Writing and Fibromyalgia Symptoms
I write when I’m inspired. When I have something that is just needed for me to get down. So, my blog has not been regular. I really struggled the last couple of weeks, so I gave myself a break from feeling like I had to. Have-to doesn’t work well for me or the Fibromyalgia it seems. I did ‘have-tos’ for so long that it feels like my body puts on the breaks when I feel that now. However, I’ve been proud of myself this past year. I have aimed to write one post a week (by Friday), and while I haven’t made it each week, I have published a total of 68 articles.
To get out of the should and must mindset, I also work on giving myself care and grace when I don’t follow through with things that I feel I should be getting done. My writing time is a self-care, pleasurable activity. My thinking is the more I do it in this frame of mind, the more my brain will come to love taking the time to write-like Pavlovian’s dog.
I don’t focus on earning money. While I’d love to earn something through my writing, that isn’t a focus currently. So, the pressure is off that way, too. I’m starting a fiction novel that I’ve always said I would write (mostly just to myself; however, a few times I let my students know that’s what I intended to do once I had the time.) However, to be honest, that has stalled for now. Writing poetry tends to be my go-to when I need to let out emotion.
I have my writing area set up. I love to sit looking out at the lake. (I’m so fortunate to live on the shore of a small lake). I have a cup of hot tea or a cold drink nearby. My loved ones know to leave me alone (mostly). I play Pandora (if the words are flowing) on my favorite wordless, acoustic guitar station (Acoustic New Age or William Ackerman). I often would play this in my classroom as my students were writing, too. I do love sitting outside if the weather is cooperating.
Depending on my mood, I write in a journal (this is usually when I’m more brainstorming or writing poetry) or directly on my computer (usually, my blog is written directly on my computer). I tend not to do a lot of editing/revision as I’m anxious to get what I’ve written off-my-plate, so I often post right after completion. (I’m not too freaked out by others seeing my errors; however, I do reread after being published and tend to do editing and a bit of revision then.)
I’m sure as I get into writing my novel more that this will be one of the biggest changes in my writing process; deeper and deeper revision and editing. I chalk up my one and done method to my 6th-grade students’ influence on my writing (and the ADD-like symptoms I have).
To help with my fibro-brain, I do use technology a lot. I use digital notes (synced on my phone and computer) to jot down an idea I get for a blog or for my novel. So, when the ideas come, I quickly put it down otherwise it would disappear like a wisp of smoke. (I’m using Google Keep now but have used Evernote in the past.)
Connect at a Heart-level
Much of my teaching of writing was getting my students to see the purpose and how it could be important for each of them.
My first lesson was always for them to reflect on what they know about, care about, and are interested in. Through this, I would write alongside them. We would come to know each other on a much deeper level; learning from one another, connecting through our writing in ways we couldn’t through our everyday interactions.
Instead of wanting to impress as the goal of writing, connecting with each other at a heart-level was our focus. This freed us up from that critic who lives in each of our heads that constantly says what we have to say isn’t important or good enough. Then, when we conferred with one another (they conferred my writing as well), it was more about trying to get the meaning across as clearly as possible so that others would get us.
So, my advice is to write like a 6th grader. Write what is important to you. Write from what you know about and care about. If we do that, then we have something to share, no matter what it is; this will intern allows us to feel connected to others-one of the hardest things to do in this life.
I’ve been honored for my work this year by being recognized as a patient advocate:
If you’re diagnosed with Fibromyalgia: get educated on what it is. There are good sources out there. However, make sure that you check any source you use for its reliability. There are so many sources that want to tell you what to do, what to take, how to live. Also, there are many negative voices out there.
I chose not to complain constantly about the issues that come with Fibromyalgia because I find that it just sinks me deeper into symptoms. I don’t propose just ignoring and letting positivity fix your fibro; however, dwelling on the yuck doesn’t breed good outcomes.
Use what you learn with your doctors. Most don’t know much at all about fibromyalgia. I’ve brought a lot of information to my doctors that they’ve found enlightening.
I choose to make every day a new start. There are days I throw in the towel. I try to allow it (and even if it means wallowing a bit) to let it be okay for that time. However, I do work on getting up the next day with an “I’m starting afresh”.
How do you handle the hard stuff in your life? Can you find the hope and push in every new start of the day? How do you push past the pain and difficulties?