As I’ve learned more about Fibromyalgia (FMS), learning that it is considered a Central Sensitization Syndrome (CSS) which is said to not be a progressive illness, I have come to question when did FMS actually start for me.
What is Central Sensitization Syndrome?
“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 neuro-processing of pain signals that are much more sensitive than those without, leading to the feeling of pain when there isn’t any acute injury.
FM is Considered Non-Progressive
Clauw, a leading researcher of FM, 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 FM 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.
My Early Onset of CSS
Looking back, I realize I had symptoms of FM 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.
My “Tummy” Aches All the Time
Interstitial Cystitis Signs and Symptoms:
- Pain the pelvis or between the vagina and anus in women.
- 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. With the diagnosis, I now know not to go into the doctor’s office for antibiotics.
- Ur In Trouble: Interstitial Cystitis and Fibromyalgia
Chronic Breast Pain from an Early Age
Signs and Symptoms of Mastalgia:
- Breast tenderness
- Sharp, burning pain
- Tightness in the breast tissue
I had breast pain from the get-go of breast-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.
The tissue of my breasts has lumpy (hard knots) all over. Recently, I was diagnosed with dense breasts, so I have to have a special mammogram called Tomosynthesis which takes more images of the breast creating 3-D imagery, making it easier to view any abnormalities. These knots can radiate sharp pain even feeling a bit heated at times in certain spots. While I appreciate the thoroughness of the Tomo (commonly called) mammogram, it means I’m in the press longer than the usual test. When the technician asks if my breasts are painful, I laugh. Yes, always.
My Chest is Burning
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.
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 4 after years of taking daily prescription medicine. The chest pain at my sternum was attributed to that. That pain never went away with medicine or with surgery. Last November, I was diagnosed with Fibromyalgia which I have found can be linked to GERD as well.
No Really, My Tummy is Upset All of The Time
The symptoms of Irritable Bowel Syndrome (IBS) typically include:
- Abdominal pain
- Bloating and gas
I’ve only just been diagnosed with Irritable Bowel Syndrome (IBS) after going back for pelvic floor therapy this past spring. I have had some symptoms of IBS to some degree since I was in my teens getting noticeably worse in my 30s. As a teen, I would have days of diarrhea whenever I had my period. Then, in my 30s, I began to also have weeks of constipation, causing major stomach pain. However, I had attributed the frequent constipation to the IC and GERD prescription medicine which are known to affect the digestive system. Especially the prescription for urgency relief causes constipation, so I took fairly large doses of Metamucil to off-set it. It wasn’t until recently when I was off all medicine that would cause diarrhea or constipation, that I realized 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 FM/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 FM symptoms and comorbidities? When did you have the onset? When were you diagnosed? What has been your experience with the progression of FM symptoms?
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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.