I will discuss my story in regards to ages, as something different happened every couple of years.
I was actually a pretty healthy baby and child, but - it didn’t last long.
When I was about 9 years old, I noticed some neck pain, and then when I was 10, my neck got whiplash from simply turning my head whilst running at school one morning, and it got stuck in one position for a whole day and I couldn’t move it. I remember it being extremely painful. After it kept happening constantly that year. I finally got an X-Ray and turned out that my neck was growing completely wrong, the vertebrae were all out of place & wonky, and my neck was growing forward instead of the natural curve. (It looked like I had a hunch.)
I then had neck physio and exercises to fix it, for years and a lot of pain. I was careful to not to certain sports that would trigger it. So from a young age, I was already having issues.
I mention this because I think it’s like my ‘trigger’ for the fibromyalgia to start. - Most fibromyalgia starts from a trauma or trigger, and other than extreme sleep deprivation/insomnia all throughout my life, and my parents' hereditary Fibro/rheumatoid arthritis genes, I can’t think of any other triggers.
(Also, my mum’s side of genetics has heaps of thyroid issues, reflux, hernias, etc - and dad’s side has POTS, Fibromyalgia, Rheumatoid Arthritis, other forms of arthritis. So it’s pretty clear my conditions are mostly genetic.)
Other than the neck issues, my jaw always had a lot of pain in it, and I can tell the jaw is not on the right angle.
I had deformed growing toes, and just other little small differences and issues I had, such as aforementioned Insomnia, that no one else in my class/age had due to my strange DNA
The Road To The Fibromyalgia Diagnosis.
So.. I can’t even remember when symptoms may have started, but I noticed a huge difference in pain and bad posture at around age 13-15. I went to the doctor and he said there was nothing wrong except posture and he would send me to the physio to fix it. He fobbed me off, saying it wasn't that bad. (My first experience with doctors not believing me, yay!)
When I was 16 I started feeling dizzy, constantly sick, I would faint when standing too long, and get the feeling of fainting in the shower, and bath as well. I couldn't deal with the heat. I felt really fatigued also. I was feeling so bad that I also quit ballet, soccer and my outdoor education VCE subject. (My teacher had a private talk with me and said I couldn't continue it.)
My physio tested my blood pressure and noticed it was pretty low, so she suggested salt and water. I started drinking more water, ingesting salt (I previously never put salt on anything!) and felt better, but it still did happen sometimes, especially if I showered in the morning and didn’t eat breakfast beforehand.
Another doctor just said my blood sugars were low and to ‘eat lollies’…... I basically did my own treatment and grabbed some iron tablets, I felt a tiny bit better.
Then my physio (after a year) said that she’d tried everything but all my muscles were still extremely tense all the time and that my posture didn't go down really, and advised me to get scans and a specialist, that there was nothing she could do, and it WAS something more.
So I went to a dr that I knew wouldn't turn me away, and got a referral to a rheumatologist. This was by the time I was 17.
Before I went to my first appointment I did online symptom checkers, and Fibromyalgia came up, so I looked into it and thought it might be it.
I found out around that time that my auntie on my dad’s side actually had Rheumatoid Arthritis and Fibromyalgia so It was a genetic possibility anyway.
In the first appointment he did the trigger point touch test, Beighton score, (I don’t know if they still do it, but I had to undress except for underwear so that he could complete the tests better.) He was extremely thorough. He of course then ordered a lot of blood tests and scans.
He asked me about symptoms and sleep and stomach issues, as well as temperature and symptoms of Raynaud's such as the blue hands.
He diagnosed me with Fibromyalgia, Raynaud's syndrome and a ‘idiopathic’ Hypermobility Joint syndrome, From that first appointment, mostly from those physical tests, long term symptoms and family history.
Other diagnoses and misdiagnosis.
He then diagnosed me with sacroiliitis (pelvis) from bone scans - (which has since been ‘undiagnosed.’ by another doctor who questioned the reliability of bone scans.) But I still have pain in my tailbone and sometimes can’t walk. So I don’t know what it is currently.
When I was in year 12 (last year of school), I started feeling really fatigued, sweaty, always needing to pee and always hungry. I would eat more than 4 large meals a day and wouldn't get full, and I lost 10 kilos of weight. I’m already normally only 50kg. So it was bad. . I was sleeping after school until dinner, and my parents started to worry. I thought it was fibro and the stress of exams, but I actually had an inflammatory thyroiditis, or in other words, an overactive thyroid - Which meant my metabolism was working in overdrive and burning up every bit of food.
I then was diagnosed with Graves disease and treated for it with medication that can cause birth defects.
BUT THEN IT turned out not to be Graves disease, the thyroid medication scarred my thyroid glands. Now it’s apparently autoimmune and going the opposite (underactive,) but they haven't told me what exactly yet. It could honestly be Hashimotos. .
Within the months of being told my thyroid was autoimmune, I also had some other illnesses come up out of nowhere.
One day my jaw suddenly stopped being able to chew food, and I thought I’d dislocated it. My whole left cheek was tingling and sore, it got to a point where I couldn't swallow food without pain, and was trying to find any liquid foods I could so that I wouldn't starve.
I went to the drs, and my jaw was not dislocated at all.
It was actually a cranial nerve that had been damaged - which was the nerve that went down to your jaw ‘the Trigeminal nerve’
So I was then diagnosed with trigeminal neuralgia and put on epilepsy pills (anticonvulsants) to treat it.
I also now have been experiencing more and more fibromyalgia symptoms, such as nerve damage, hot flushes, fevers and nausea. so it definitely progresses and gets worse..
So as you may have read. Around 15 years of age, I was fainting all the time, couldn't deal with heat/hot showers, and was dizzy with low blood pressure. - This was never addressed this WHOLE time.
I was never tested whilst I was standing, and any ‘dizzy’ symptoms I mentioned were put to Fibromyalgia. - I was diagnosed with Raynaud's though.
I had also been blacking out in vision every time I stood up, and had blood pooling in my legs and hands. I thought this was all raynauds/fibromyalgia and never questioned it. I also had issues on planes with feet swelling, and I have chest pain frequently which was always put down to costochondritis.
I noticed this past summer after having a really terrible bout of anemia, that my body was reacting a lot more in summer, I was shivering in 40 degree heat all the time, I had blankets on when everyone else had just shorts on. Being in hot Australia, this was pretty strange. I now know this was poor temp regulation.
Then I started to feel my heart racing all the time and palpitating more frequently then in the past. I did a 24 hour holter-monitor test, but nothing showed up on it.
Then during my period - I was standing up too long in the morning and felt myself get nauseous and sweaty and I fainted or nearly fainted about three times (I can’t remember if I did syncope or not) and I felt horrible afterward. It just so happened that I was seeing my favorite GP doctor the same day as well.
I felt sick at the doctors, my raynauds was flaring a lot, and I think my blood pressure was extremely low. He asked me how I felt and I said ‘not good.’
He tested my heart/vitals, and he must have been thinking all along that I had POTS because he did just a stand up heart rate test - and like POTS does, my heart rate rose and my blood pressure dropped.
He straight away wrote a referral for a cardiologist before I knew what was happening.
After this happened, I have looked back on that whole part of my life, since my symptoms started and events that have occurred, and I just know I’ve had POTS since I was 16.
