As i entered adulthood and moved out on my own i continued my long journey of trying to figure out what it was i actually had. However it took me until i became pregnant with my first child to force myself to go see a doctor again. I had lost trust in the health care system and actually had questioned myself. Was it all in my head?

I have since met some amazing doctors. Ones who actually took the time to go through and dissect my symptoms and do a process of elimination. It wasn’t until after my first son was born that my journey truly resumed and still at that point i didn’t know it would be years more before i truly would get answers.

To start off id like to explain my symptoms. I am as stated in the last post extremely flexible, i have sprained and unknowingly dislocated joints. I struggled with academics, i had a hard time socializing. My mom, family and teachers found it tough to get me to do certain “demands”. As i got older i had chronic pain, low circulation, high heart rate, dizzy spells, pre syncope episodes, clumsiness, chronic fatigue, bruising to easily and gastro issues. I also now know i had stimming, sensory issues, food avoidance and still do. I also suffered from insomnia.

During the years of my adulthood where we began looking once again for why i was having these issues i would go on to have CT scans, MRI’s, X-rays, psychological evaluations with more in-depth tests, EKG’s, many many blood tests. Once we narrowed it down we began a process of elimination because what we didn’t know was scans and blood test were not the best way to actually test for what i had.

During my final psychological evaluation i was give an adult autism test. We decided to go with this because my oldest son had been diagnosed with autism. It was found that i am indeed autistic, however i had learned how to mask very well to appear more neurotypical. This was the first time in a very long time where i felt relief. It wasn’t all in my head.

It would still take a few years before we nailed down my physical disability. After getting all the previously mentioned physical tests and scans done, we began to look more at the zebras. With many many sessions of looking at my symptoms, and lots of months long symptom journaling we came to the decision to trial medications for Fibromyalgia while we continued to explore the other potentials.

With that i got my first soft diagnosis of Fibromyalgia. However we decided not to stop there after my first 6 months of medication trial as i saw no improvement. We did finally decide to treat my insomnia as melatonin had stopped working. Going on a sleep medication alleviated some of my fatigue, however i still struggled with incredibly low energy, brain fog and muscular fatigue.

Once we began treating one problem and i was introduced to some Fibromyalgia support groups i was given a direction to look into with my current physician. It was at this point my doctor gave me the Beighton Hypermobility test.

https://www.aafp.org/pubs/afp/issues/2021/0415/p481.html

On this test i scored a 7 of 9. Once i met the criteria here we went through the hEDS checklist provided by the Ehlers Danlos society. https://www.ehlers-danlos.com/wp-content/uploads/2019/09/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf . During this checklist we made discoveries that made me and my doctor both realize my symptoms should have led us here. However hEDS is hard to diagnose. Many people go through the same journey as me and either end at Fibromyalgia and stop trying there or continue on with no clue where to go from there.

I was officially diagnosed with Hypermobile Ehlers Danlos syndrome and Autism at 29 years old. At this point my journey begins for finding ways to truly live with hEDS as my quality of life truly suffered. We are now finding ways to aid me in leaving the house more, taking my kids to places that before were not an option to to my fatigue and pain. I am using mobility aids at the young age of 29/30 and experiencing the generalized reception of “I’m to young to need those.” I’m on medications to try to combat the brain fog and fatigue alongside my insomnia medication. I have begun seeing a Physical therapist who specializes in hEDS as typical PT has in the past and will always lead to more joint instability and pain/injury.

Now to end this off i would like to say as a female who has experienced this journey and to other people who may currently be struggling, if you feel the physician is not listening to you explore more doctors. Not every doctor will be the right one to help you. Don’t be afraid to bring a trusted friend or family member who witnesses your symptoms with you to the ER or your doctor to aid you in communicating. Do your own PROPER research, use the skills you learned doing essay after essay, research report after research report and collets your sites. If you can do a test at home, do the tests first; And no matter how embarrassing or TMI something might feel to you say it, trust me your doctors heard and seen worse.

To those still struggling on a journey similar to mine if you need an ear, or someone to bounce ideas off of my discord DMs are always open.