Fibromyalgia – Going Beyond the Vague
In the documentary “5 Foot 2“, we see Lady Gaga begin the long and painful process of correlating her symptoms and tracking down a diagnosis – reason for her chronic pain. This is an incredibly frustrating disorder to diagnose accurately. Much like in the early days Specific Learning Deficits like Dyslexia, the term was a banner under which many other disorders were discovered; dyslexia, dyscalculia, dyspraxia, to name a few. FM seems to be a box for, “We don’t know why you are in pain.”
You would think after defining the disorder 30 years ago in 1990, we would know more but science, studies and grants don’t happen until something is “sexy” enough to grab academic attention. This is why Lady Gaga’s “coming out” is a big deal. It gives all of us a forum in which to attract peer review and funding in order to find some answers. More importantly to be taken seriously and to stop being invisible.
We’d like to share with you other’s experiences of how their journey to the same diagnosis. But first…
What is Fibromyalgia?
The NHS describes Fibromyalgia (FM) as widespread pain, extreme sensitivity, stiffness, fatigue, poor sleep quality, cognitive problems (‘fibro-fog’), headaches, irritable bowel syndrome (IBS), dizziness, poor body temperature regulation, restless legs syndrome, pins and needles/ paraesthesia, anxiety, and depression. For a very long time, this type of chronic pain disorder was thought to be entirely psychosomatic, that it was all in our heads and patients were “faking” it. Only very recently that studies are finding a physical basis for the symptoms. At the moment findings are incredibly contradictory with one study saying pain is due to marked reduction in nerve fibre density. Another claims excessive sensory nerve fibres around specialized blood vessel structures in the hands. Another that sufferers have reduced blood flow to parts of the brain that normally help the body deal with pain.
When a scientist does a study they must start with a hypothesis or conclusion that they must prove or disprove. With a bunch of people just talking together we can search for similarities and commonalities that doctors, scientists and psychologists either can’t, due to their study restrictions or due to government-imposed privacy restrictions. What we, who have FM, have found is a more meaningful list of comorbidities. An estimated 66% (and the number may be higher) of those with FM also have each of the following and we believe that they tell a greater story than what is openly available today.
Hypermobility: Tendons attach muscles to bones. They are responsible for maintaining the body’s integral structure. When tendons are loose, or hypermobile, joints can “pop” or dislocate. To prevent a joint from constantly dislocating, the muscles take over the strain and do the extra work of both movement of the body and holding it together. This gives credence to the augmented number of nerve endings theory. In order to keep the body walking, dancing, running, a higher amount of work needs to be done by the nerve endings and more messages need to be sent from the muscles via the central nervous system to the brain to keep the body whole functioning. Strain will happen and with repetitive injury from soft joints (sprained ankles, dislocated shoulders, ribs, knees…) long-term damage is inevitable. Overworking the muscles over a long period of time is damaging. There are links in the frequency of occurrences and similarity of symptoms between hEDS and FM.
Low Thyroid: The thyroid gland regulates breathing, heart rate, central and peripheral nervous systems, body weight, muscle strength, body temperature and more. Take another look at the symptoms of FM. These are the symptoms of hypothyroidism (low thyroid): trouble sleeping, tiredness and fatigue, difficulty concentrating, depression, sensitivity to cold temperature, and joint and muscle pain. It is a little annoying no one is currently looking into this obvious connection.
Abuse of the Adrenal Gland through trauma/stress: Adrenaline has the important job of keeping us alive. It is released, due to a certain stimulus, throughout the body to trigger the “fight or flight” response. This can be both physical, like confrontation with an aggressive person or dangerous situation, or psychological like anxiety attack triggered by past trauma. When this hormone is released it literally amps up the central nervous system and muscles to either kick arse or get the hell out of there. People have been known to commit physical acts of strength far beyond normal capacity due to the adrenaline “rush”. Unfortunately, the same “rush” occurs during panic attacks or moments of high mental stress; standing up in front of an audience, confronting a less than helpful Head Teacher, arguing with a partner.
We live very high-stress lives. This disorder is seen more in women than in men and has jumped in numbers exponentially since the 80’s. Is there any surprise since women’s roles have increased to become that of Superwomen? Women are still often are the primary caregivers while working full-time jobs where they must also commit to longer hours in the workplace to prove themselves the “equal” of men. In “5 Foot 2” we see the unenviable work schedule of Lady Gaga and the stress tole it takes out on her mentally and physically. Ultimately when you overwork your body continually past its limits, beyond exhaustion, depending upon adrenaline to get you from crisis to crisis – something gives.
Loula’s Story
Looking back, from a very early age I was hypermobile. My joints moved too much and that caused a lot of injuries, soft tissue tears and dislocations. All of the nurses in A&E knew me by name. The doctors told my parents I was just accident prone. I had horrible irritable bowel problems, IBS, and at 19, I got glandular fever. I suffered recurring severe bouts of tonsillitis. At 25, 10 years ago, I had my tonsils removed. I never recovered from the operation.
I was diagnosed with post-operative fatigue. My stamina was in my boots, I was in pain and leaving the house put me in bed for a week. Later, I was diagnosed with Myalgic Encephalomyelitis/chronic fatigue syndrome. M.E/C.F.S. It took me 2 years to find my new base line. During that time, I lost my job as a scientist and had to come to terms with my new normal. I became a model and forged a new life, at a new pace.
My pain levels steadily increased. My GP told me that he had suspected I had fibromyalgia, FM. A rheumatologist diagnosed me after blood tests came back normal. At the time, hypermobility was noted and I was told I might have hypermobility syndrome, HMS. It was a throwaway comment, it was never considered to be a cause of my pain at that point. I was sent to a local M.E/fatigue clinic where I was given a full psychological assessment. Twice. Apart from situational depression, they couldn’t find anything wrong with me. The belief that those with M.E and FM are crazy is widely held by medical professionals across the world. I didn’t fit their mould, so I was discharged quickly.
When people see the M.E and FM labels they assume I’m hysterical, a hypochondriac or an annoyance. Once they start speaking to me, and I reply on a scientific level, their attitude changes. The conversation always ends in the same way though, “there’s nothing more we can do for you, take pain relief and rest”.
This is what I’ve been waiting to see, while I sit in that fucking MRI machine for 3 hours at a time and they tell me to take Advil when I leave. – Lady Gaga Netflix “5 foot 2”
It wasn’t until I moved to Newcastle that my health was looked at again, 6 years after my FM diagnosis. A new GP listened to my concerns and theories and admitted that I didn’t fit the usual persona of a chronic pain and fatigue patient. I had piqued her interest so much that she took my notes home with her and read up on my life over a weekend. The next week we reconvened and she agreed that something else was going on. I was sent to a rheumatologist and within minutes of sitting down I was diagnosed with Ehlers Danlos Syndrome Hypermobility type, hEDS. During that appointment, I was also given a basic test that showed have Postural Orthostatic Tachycardia Syndrome. It’s an autonomic dysfunction. Blood pools in my legs, when I go from sitting to standing my brain doesn’t send the message to move the blood up my body fast enough. My heart rate increases massively to compensate and I black out. It’s extremely common in people with hEDS and with M.E and FM. By itself, it causes fatigue, cognitive issues and muscle pain/weakness.
hEDS is a genetic condition. It causes the collagen in my body to be faulty. It makes my soft tissue fragile. It tears and sprains easily and is overly stretchy, allowing my joints to be hypermobile leading to traumatic dislocations and partial dislocations. My knees actually bend backwards. It is extremely likely that this is the root cause of all of my problems, M.E, FM and IBS.
Abi’s Story
For me, the physical and psychological are intertwined. I am hypermobile and autistic. Growing up was… fun. From 9-16 I did ballet and in the last year, I took 4 hours a day, 4 days a week. The constant ankle injury did me in. At 13 I began to show the signs of low thyroid with exceptionally heavy periods that lasted 8-13 days. This was misdiagnosed as low-grade anaemia as the cause not the result and I was put on massive iron tablets (which I promptly threw up.) My mother, like most good Catholics of the time, had 5 kids in 6 years. When I was 16 she, early 40s, began to struggle with chronic pain. because we share body types whatever fad theory they applied to my mother, they applied to me.
Systemic Candida Albicans (full systemic thrush) was a new theory when I was 16 and thus began a prescription abuse of anti-thrush medication and a restrictive diet eschewing all wheat, dairy and sugar until I was 20 and finally left my mother’s sphere of influence. Next on my mother’s diagnosis list came Lupis, then rheumatoid arthritis. She was sent to therapy and psychiatrists repeatedly. She suffered through treatments and fad diets for nearly 20 years until she was finally diagnosed with FM.
By 25, I was married and we tried to start a family. I have had nine official pregnancies and have two children. Both births were physically traumatic. Low Thyroid was finally diagnosed after my first child was born (fourth pregnancy). With my second child, I developed preeclampsia and gestational diabetes. Diabetes stuck around and was misdiagnosed as depression due to being overweight, for 15 years. When the kids started school I went back to work full-time, which is when we discovered that they were both on the Autism spectrum. Fighting schools for provision showed me what real Monsters look like. So, I was working 60 hour weeks, fighting for provision on a daily basis and doing a degree in Psychology to better understand Autism and support my kids. My then partner was less than supportive and the stress destroyed my marriage.
Whenever I had any downtime or holiday I became ill, wracked with pain and what I thought was the flu. I developed IBS. I went to specialists (on BUPA) who oddly, or maybe not oddly this is Cambridge after all, put me on exclusion diets, diagnosed food allergies by the dozen. One said it was because I was breathing in too much air and removed the lower concha (air filters) in my sinus cavity. I was not warned that most who have this procedure develope sleep apnea. Another, that I had nodes in my bowel which had to be removed. But none of these things stopped or even alleviated my symptoms. In the case of sleep apnea – they made it much worse. Throughout the divorce, I began to have full-blown flares and developed muscle ticks in my face and restless leg syndrome.
Then someone suggested FM. I was sent to the rheumatology department to yet another specialist who did what tests were available and confirmed the diagnosis. I was then asked if I wanted opioid painkillers. When I said no, they said have a nice day and sent me home. I have been trying to figure it out on my own ever since.
To me, the most success I have had with dealing with FM is to remove the thing in life that causes the most stress. I no longer work in an office. I got divorced. I got a degree in psychology, mostly so I can tell others exactly how full of sh*t they are. I take control in the doctor’s office. I write articles like this.
Tomorrow: Dark Days – Flare Stories
Lady Gaga’s struggles are REAL and shared by millions. Share your diagnosis questions and stories here.
