You've Got to Be Kidding! Looking Back at Childhood Fibromyalgia Symptoms

As I've learned more about Fibromyalgia (FMS), learning that it is a central sensitization syndrome that is said to not be a progressive illness, I have come to question when did it actually start for me. 

What is Central Sensitization Syndrome?

Mayo Clinic's, Dr. Sletten Discussing

Central Sensitization Syndrome (CSS)

"Central sensitization is a condition of the nervous system that is associated with the development and maintenance of chronic pain. When central sensitization occurs, the nervous system goes through a process called wind-up and gets regulated in a persistent state of high reactivity. This persistent, or regulated, state of reactivity lowers the threshold for what causes pain and subsequently comes to maintain pain even after the initial injury might have healed." quoted from What is Central Sensitization via the Institute for Chronic Pain.


I like to visualize the musical metaphor Dr. Daniel Clauw, a clinical researcher at the University of Michigan, uses to explain this phenomenon as an amplifier turned to its highest level at all times. "Consider the loudness of an electric guitar to represent the amount of pain a person is experiencing. Like the strings of a guitar, there are many types of sensory nerves that produce qualitatively different kinds of sensory information from the skin, muscle, and joints, but in order to hear this information, it has to be processed through an amplifier, the central nervous system. So you can get someone to have more pain by strumming the individual strings of the guitar harder and faster, but another way to increase the loudness would be to turn up the amplifier. And by increasing the level of the amplifier, all strings become louder."


So, those with Central Sensitization have neuroprocessing of pain signals that are much more sensitive than those without, leading to the feeling of pain when there isn't any acute injury. 

FMS is Considered Non-Progressive

Clauw, a leading researcher of FMS, states that while those living with Fibromyalgia may feel it is getting worse over time, it is not a progressive disease that in itself is spreading, causing more and more deterioration in the body. It is non-degenerative and non-fatal. However, as Clauw explains in this interview by Donna Gregory Burch in the National Pain Report, CSS pain that isn't managed can cause those with FMS to feel as is symptoms are getting worse because they, "progressively get less active, sleep worse, are under more stress and unknowingly develop bad habits which worsen pain and other symptoms." 


This understanding makes me surmise that if we "catch" CSS early, we can then address the pain signals sooner allowing the growing ramifications of ignoring the issue to be abated. Also, the theory of neuroplasticity suggests that the more we do something the deeper ingrained it is in our brain pathways. Doesn't it stand to reason, then, if CSS is addressed early on, then we can lessen or even erase/change these pain pathways in the individual's brain. Certainly, early management of CSS would improve the worsening symptoms for those living with Fibromyalgia.

Related Post: Just Breathe and Other Ways to Rewire the Pain-filled Brain

My Early Onset of CSS

Looking back, I realize I had symptoms of FMS in my teens for sure, probably as far back as 10. I did not yet have the roving, all-over pain that remains for 6 or more months which is one of the main indicators doctors currently use to diagnose Fibromyalgia. For me, this didn't start until June of 2018.


However, as more research has been done since 1974 (when I was ten-years-old), there is now evidence that there are other issues such as irritable bowel syndrome (IBS), interstitial cystitis/painful bladder syndrome (IC/PBS), vulvodynia, migraine, and temporomandibular joint disorder (TMJD) that fall into the Central Sensitization Syndrome umbrella. Often, those living with Fibromyalgia have more than one CSS they are experiencing.

Interstitial cystitis signs and symptoms include:

• Pain in your pelvis or between the vagina and anus in women.
• Pain between the scrotum and anus in men (perineum)
• Chronic pelvic pain.
• A persistent, urgent need to urinate.
• Frequent urination, often of small amounts, throughout the day and night (up to 60 times a day)

As long as I can remember, I had an ache below my bellybutton, between my hipbones that were continuous. I had relatively symptom free periods once I started at age 13, but from reports my friends had of the pain they would experience during that time of the month, I concluded I had that type of ache all the time. It was especially noticeable at night, and so I would curl up on my side, sometimes placing my hands on the area to help lessen it. Pressure and heat help ease it.


I didn't know to tell anyone about this. I didn't have a general practitioner. I went a few times to the free clinic for various things during my kidhood. We didn't have insurance. Also, my single parenting mom had more things to deal with then a tummy ache. It really didn't occur to me to even bring it up until I was in my 30s. The ache was definitely escalating and started to come with urgency issues. I was diagnosed several times over the next five years with urinary tract infections. I took the antibiotics dutifully. Often though, the more extensive urine lab test results came back negative. My doctors had me finish the medicine and often the pain would subside (to a less intense level), so I didn't question the findings.


I did finally get referred to a specialist who immediately diagnosed me with Interstitial Cystitis. All those prior "infections" were falsely diagnosed. However, 16 years ago, when I was diagnosed with IC, there was never any mention of Central Sensitization Syndrome. It was addressed by medicine, instillations of a pain-relieving solution into my bladder, and physical therapy for the pelvic floor. None of that has really changed the ache but now I know not to go in for antibiotics.

Related Post: Ur In Trouble: Interstitial Cystitis and Fibromyalgia

Chronic Breast Pain from an Early Age

I had breast pain from the get-go of development that was constant like the pain in my bladder. I now know that it has a name (mastalgia), and research is showing that it too "can be an aspect of the central sensitivity syndrome and can be added to the somatic symptoms of fibromyalgia". -2015 Research Report Can mastalgia be another somatic symptom in fibromyalgia syndrome? I'm embarrassed to say that this is an issue (that I still have) I have yet to really talk to my doctor about. It just wasn't something we mentioned, so I thought it was just a part of being female and having breasts.

Related Article: Breast Pain and Fibromyalgia

Common signs and symptoms of GERD include:

• A burning sensation in your chest (heartburn), usually after eating, which might be worse at night.
• Chest pain.
• Difficulty swallowing.
• Regurgitation of food or sour liquid.
• A sensation of a lump in your throat.

GERD and IBS

As a teen, I experienced burning, sharp pain in my breast bone, specifically in my sternum. Again, I never mentioned this until my husband and I moved to a new town just before I became pregnant with our daughter. We had moved all our belongings (which wasn't a lot, but a few larger items) up three floors of narrow stairs. The sternum pain was so severe, I thought there was something going on with my heart. I couldn't take in a full breath without sharp pain that made me not want to. I did go to the local clinic and was diagnosed with a bruised sternum due to heavy lifting. Ice, Ibuprofen, and rest was the prescription. I didn't bring up that this is an ongoing area of pain. I knew this was a higher-level of what I normally felt, so I accepted the diagnosis.


As a teacher, I found that I lost my voice often after a break from teaching, so every fall, after winter break, etc. One parent volunteer, also a doctor's wife, suggested that this could be due to acid reflux. When I told her about the breast bone pain, she said it most likely was GERD and that I should be seen. I followed up with a specialist who suggested medication which I took for a few years, really not experiencing any change in the sternum pain, but I did eliminate the throat irritation. Later, not liking the long-term effects of the medication, I decided to take the next step by getting the Nissen Procedure done. I wish I had not done this because it has caused more stomach issues and I still have the sternum pain and acid reflux pretty much as before.


I started that early on but really didn't know what it was. I went through many "urinary tract" infections that ended up not being urinary tract infections when the lab results came back. I was diagnosed with IC in my mid-30's. I also had the chest and breast pain before I was twenty. But that was associated with various exercise and hormones. The difficulty of taking a full breath (feeling like I wasn't getting enough air started being noticeable for others to comment when I was 15 or so. GERD was diagnosed when I was in my 30's, so I had surgery (the Nissen procedure) about 40 after years of taking meds. The chest pain at my sternum was attributed to that. That pain never went away with meds or with the surgery. I was diagnosed with FM last November.

The symptoms of IBS typically include:

• cramping
• abdominal pain
• bloating and gas
• constipation
• diarrhea

 

I've only just been diagnosed with Irritable Bowel Syndrome (IBS) after going back for pelvic floor therapy. I have had the symptoms of to some degree since I was in my 30s. However, I had attributed it to the IC and GERD medicine I was on that affected my bowel movements. It wasn't until recently, when I was off all medicine that would cause diarrhea or constipation, that I realize it's an issue that comes "naturally" to my system.


In the article, A Closer Look at the Interrelationship of Fibromyalgia and GERD, Dr. Don Goldenberg states, "Clinicians should be more alert to the possibility of this association. For pain practitioners, routinely asking FM patients about any problems with irritable bowel and repeated reflux would be a very good start."

Childhood Diagnosis of Fibromyalgia

Children can be diagnosed with FMS. In Mayo Clinic's article on Juvenile Fibromyalgia, "Estimates suggest that juvenile-onset fibromyalgia affects 2 to 6 percent of school children, mostly adolescent girls. It is most commonly diagnosed between ages 13 and 15." However, they look for the traditional symptoms of wide-spread pain lasting for 6-months or more, sleep disturbances, fatigue, brain fog, anxiety, and depression.


However, with what we know now, I feel that doctors should be more alert to patients presenting with other, long-term CSS issues. Looking at patients' background for possible trauma-causing events that are suspected causations to Central Sensitization Syndromes such as surgery, accidents, major illnesses, and home-life instability that rate on the Adverse Childhood Experiences (ACE) evaluation tool.

A New Paradigm is Needed for Diagnosing FMS/CSS:

What if we looked at the whole picture? What if we caught the CSS in it's beginning? Wouldn't that allow for major positive changes in the care of such a patient? It seems like the result would be curbing the severity of Fibromyalgia and the comorbid CSS issues.


To do this, doctors need to be more thoroughly educated about Central Sensitization Syndromes. They also need to be trained to look at the person as a whole. Not just the physical issues that are presenting (often only looked at one at a time), but of the whole of the person.


What is your experience with FMS symptoms and comorbidities? When did you have the onset? When were you diagnosed? What has been your experience with the progression of FMS symptoms?




Thank you for visiting my blog today.



I am committing to posting once a week on Fridays.

However, as you know, my new normal means that sometimes

I have to listen to my body and am not able to follow through

as planned.

Thank you for your understanding.

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Fibromyalgia Forced Me to Look Inward

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  MillenniumHealth." 

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 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.  

Sitting by the Fire on a Starry Night

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-

Everything.  

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.  

Insubordination

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 120 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.  

Kneading Need

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?

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes 

I have to listen to my body and am not able to follow through 

as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

No Stone Left Unturned

When I hit my lowest and went to my doctor, he wanted to prescribe me Cymbalta.  I refused it.  I had already researched the FDA-approved medication for Fibromyalgia (FM) and was terrified after reading the many horrible reviews.  (Cymbalta reviews)  I talked to my family.  I cried and refused.  I was actually scared.

I've since realized why. My mom was hospitalized for the first time in Kalamazoo Psychiatric Hospital in my sophomore year of of highschool in 1980. Her second time, that ended up being a permanent situation, was only a year later. She was being treated for bipolar and schizophrenia with very serious medication. All I could imagine was being in the zombie-state that I remembered from my visits.  Scared me silly. However, on December 7, 2018, I knew that I couldn't handle without some help I agreed to go on a low dose of 30mg of Cymbalta.

Before resorting to prescribed medication, I did try many suggested remedies: yoga, Reiki sessions, a chiropractic session, professional massage, supplements, hot tub, heating pad, myofascial release, over-the-counter pain relievers, Tapping (EFT), and diet changes. I didn't try pain-relieving shots (like Lady Gaga has) nor acupuncture (due to insurance not covering it).  Some definitely helped, others were positive experiences but didn't seem to change anything, a few didn't do anything, and one actually hurt me.

• Yoga: I had practiced yoga for some time but hadn't been doing any for the past couple of years due to my hour drive to work which led to a 10 workday.  On the weekend of Thanksgiving break, I went to a local yoga studio on the recommendation of a friend.  It was for a two-hour breathwork workshop.  That one visit made a huge impression on me.  I knew I found a healing place, a welcoming place.  This practice with these people and this teacher has been the single most helpful thing in combatting my Fibromyalgia (FMA). I'm going 2-5 times a week. My insurance does not cover this.
• Reiki: After the breathwork class, I decided to sign-up for three Reiki sessions with the owner of that yoga studio who is also a Reiki master.  Much of her approach in her studio's ambiance, class structure, and her overall life philosophy ties into this system. After some sharing of my situation, I laid down supported by pillows and covered by a blanket and weighted eye pillow letting my eyes fully relax.  After the session, I felt good.  Not pain-free, but not painful.  I felt positive and light.  I haven't gone since mostly because of its cost.  I do believe this led me to a deeper look into my emotional state which has definitely helped heal and grow.  My insurance doesn't cover this.
• Chiropractic Session (no link due to not recommending):  I only tried one, so that probably tells you something.  The website listed FM as one of the conditions they could treat.  After the neck crack (I realize there's more than one type of chiropractic treatment), I ended up hurting way worse than when I had arrived.  Won't be going again. My insurance did cover this, but I still had a fairly large copay. *Since I first wrote this, I have gone to another chiropractor.  She spent an hour going over my history.  Then, she to spin Xrays and came up with a plan.  A medical-massage was included from that point on after each 15-minute session with her.  The two combined really loosened my neck and shoulders which had been plaguing me for months. I paid $30 out of pocket for 15-minute chiropractic correction and hour-long medical-massage. That was such a wonderful deal! 
• Professional Massage: I found a business card for A Bridge to You Massage Therapy hanging up on our yoga studio bulletin board.  The professional masseuse came highly recommended by my fellow yogis. The atmosphere, music, and massage bed felt as if I was in a warm cocoon in a field of flowers-which is saying something since it was in the deep part of January.  Claire uses some Reiki during the session besides the wonderful, calming massage.  She talked about how a gentle massage (unlike the bruising deep massage I had been frenetically doing to my legs and arms) brings the neuro-system from sympathetic to parasympathetic in about 20 minutes.  This helped me tremendously for about a week during some of my hardest times.  I would go once a week if I could afford it.  My insurance doesn't cover this.
• Tapping/EFT: In mid-February, as I was researching ways to calm down the pain through meditation, I stumbled on The Tapping World Summit 2019  the first speaker I listened to was Iyanla Vanzant, and after, I did the tapping session.  It did work to calm down the pain.  I'm not fully sure I believe that tapping on the meridian points is what makes the difference, but I do know it helps.  I think it was because of the mindfulness/meditation one does through the tapping.
• Supplements/Diet Changes:  So, I did an elimination diet, not as scientifically as I should have by adding in two foods instead of one a couple of times.  After a week of being off of all: egg, dairy, gluten, caffeine, sugar, nuts, corn, tomatoes, citrus, alcohol, processed foods... It was tough, but sure learned unique ways of making pretty good foods.  The problem was, I really had no findings with the exception that I already knew I am very lactose intolerant. I've kept off of dairy, caffeine (mostly), lower in sugar intake, and lower in any processed foods by a good bit.  Adding in supplements was really pushed by many: turmeric, ginger, vitamins D, B12, and E, SAM-E, and magnesium-malate.  The only ones I've kept are D3 and magnesium-malate (the # of pills and the cost was just too much to maintain and I really didn't find a difference with or without.) A doctor (who I have come to respect and trust) has said in his written article that the only supplements he'd recommend are magnesium and SAM-E. I stopped taking the SAM-E because it made me too jittery; however, it did help with fatigue and brain-fog.
• Heat Therapy (Hot Pad and Hot tub): These have worked pretty well for intense short-term relief.  My husband and I had always dreamed of a hot tub at our new home.  When I got some refunded money from the state, we bought a six-person tub.  That was fall 2018.  I was diagnosed at the end of November.  What kismet!  
• Over-the-counter Pain Reliever: The only pain reliever that seems to help me is Bayer: Body and Back pain reliever (aspirin w/caffeine). I've tried ALL the other types.  Just didn't do anything.  I have also tried CBD via capsules and gummies.  I really didn't find any difference.  I did feel more groggy, so I stopped.  I haven't tried marijuana (it has just been legalized), but I'm not opposed to it if I should need it and it helps.
• Myofascial Release:  This helps.  I do this fairly regularly after heating pad to simulate massage.  However, it can be easy to make it too intense.  If I do it too forcefully, it can cause a flair in me.

I tried most of these things before agreeing to take 30 mg of Cymbalta daily. I went up to 60 mg after four months.  I have now weaned down to  30 mg again after 3 months and am going to try to be off of it entirely in one month.  I will then see if I can manage my pain and other symptoms with the new techniques I've learned through my 10 week FM Bootcamp training I had at Mary Free Bed (more on that later).

There are a lot of suggested treatments for Fibromyalgia.  One can go broke trying all of the things people say work.  It's confusing because what works for one person doesn't necessarily work for another.  Finding what our best path is a game of trial and error.

What are your guiding factors for whether or not to try something? Have there been things that definitely work for you?  Have you wasted money on anything?

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes 

I have to listen to my body and am not able to follow through 

as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email