Ever since I was little I’ve lived with severe pain. It began in my legs. I was a very active kid and I recall my grandpa rubbing my legs just so I could go to sleep at night. I remained active and pushed my body far beyond it’s limits through my remaining childhood and young adult life.
When I was 12, I contracted a nasty case of mono and was told I had Epstein Barr and later Chronic Fatigue Syndrome soon after the delivery of baby #3 after a recurring bout of mono…
I gave birth to five children with my ex husband and nearly died having baby #4. My uterus unexpectedly ruptured and I hemorrhaged badly hours after her delivery.
My spine, the entire thing, began to cause me excruciating, intractable pain starting when I was just about to turn 20 years old. I truly thought at this juncture that everyone lived with excruciating pain on a daily basis and that it was totally normal. I have always had a high pain tolerance. I was the girl who had drug free labors and laughed all the way to transition. I was even called a birth warrior by one of my labor and delivery nurses!
I suffered a few traumas, main one being an auto accident where I developed severe whiplash and even lost the use of my left arm for a few months (2.5 to be exact). I’m certain this helped to contribute to much of the herniated and bulging discs I now have, as well as nerve pain.
In 2011, after the birth of my youngest child and surgery for tubal ligation which healed poorly (okay, okay— poorly is a nasty understatement– the stitches refused to hold and the incision popped open, then the fucking glue dissolved due to my weirdass body chemistry), I began to start having the worst pain I have ever had with the exception of my cesarean (which I felt every.bit.of since my spinal block didn’t want to work). It was to the point where it laid me low, I was stuck in bed for months.
My ex and his family assumed I was faking and malingering and I constantly heard “Oh, just snap out of it.” This made me force myself to overwork my body, causing more joint and muscle damage that I may not have had otherwise. Needless to say, my marriage didn’t work out.
I left North Carolina and went to where I had some family… Minnesota. I have an intolerance to cold and it and pressure changes in the weather feel like torture. Or post torture… I often would wake up hurting all over, like I had literally been “racked.” Or perhaps hit by a bus. Maybe they both feel the same!
I was in Minnesota for almost 6 years and in that time I had steadily and severely declined. I was diagnosed with Fibromyalgia. Soon after, I began having seizures that could not be explained and fainting often, even doing something as simple as walking about my home or taking a shower.
A few years ago, a dear friend of mine told me about Ehlers Danlos. I looked it up and was amazed that I had nearly every single symptom with the exception of a few on the list such as facial malformations. I had a gut feeling this was what was making me suffer since my childhood.
I had to go to numerous clinics and see a large amount of doctors in the area, until finally I found a doctor in one clinic who actually took me and my PCA at the time, seriously. I was given a referral to the University of Minnesota where I was found to have very serious, life complicating issues and that what I was experiencing was legit and not “in my head.” Previous to this, I had even been told by one ER doc at Cambridge Medical Center that I should just “cleanse your aura, and you’ll be fine.” Hah hah.
The U of M referred me then to the Mayo Clinic genetics department where it was found that I do indeed have Hypermobility type EDS with Vascular crossover symptoms. I actually even scored very high on the list of points, getting a 8/9 which is unusual for my age as I should have begun to stiffened up by now. My joints are still freakishly flexible. My second to last chiropractor told me my spine is not only curved but also fucking twisted— so that’s über fun. Unfortunately, I cannot thank my friend for introducing me to EDS because she took her own life not long ago 😿
I live with a daily pain level of 9 to 10. Oft times it’s higher. Every day. Every hour. Every minute. I have lost loads of my muscle tone and what I have left is deadlocked in large muscle group spasms (called muscle seizures). I have made it 7 days exactly no sleep and 9 days not able to eat… all due to how bad my pain is.
A list of my daily symptoms include:
- Extreme joint flexibility along with frequent joint dislocations and subluxations.
- Nausea and vomiting, also motion sickness whenever playing a video game or being in a vehicle.
- Lack of appetite, mostly due to extreme states of pain.
- Insomnia… I call it painsomnia. I go up to 5-7 sleepless nights in a row when it’s extreme.
- Stress causing my muscles to spasm and my brain to feel overloaded and overwhelmed.
- Sensitivity to light and noise.
- Food and smells making me feel ill.
- Extreme fatigue… physically and emotionally.
- Being unable to walk due to muscle failure or fatigue.
- POTS, Google it, lots of fainting from low blood volume upon standing or other situations.
- Digestive issues. I’ll spare the gorey details.
- Regular tension headaches and migraines.
- Large group muscle spasms and pain all over my body.
- Degenerative disc disease as well as bulging and herniated discs in my spine.
- Symphysis pubis dysfunction.
- Issues with the facet joints in my spine.
- Nerve pain, can happen pretty much anywhere.
- Complications from Chronic Fatigue Syndrome.
- Anxiety and depression not just solely due to my chronic, complex PTSD.
- Unstable blood pressure.
- Dizziness, lightheadedness, and blacking out.
- Brain fog or fuzziness due to having constant pain.
- Deteriorated fine motor skills.
- Weakness.
- Poor memory.
- Severe pain in my hands whenever I attempt to write, paint, knit, ect. I’ve lost the ability to do most the things I enjoy in my freetime.
I’m sure there’s more, as my memory is fried shit, but this is an off the top of my head list.
The artwork featured in the beginning of this article is the Demon of Pain by Manzanedo.
An addendum as I originally wrote this on my Facebook some time ago. I’ve since moved to Southern California and in some ways have improved but the pain is still about the same and my lungs are worsened due to the fires. Actively looking to move to Arizona in the super near future! Pain is somewhat more managed using cannabis concentrate, I am nearly completely intolerant (possibly deathly allergic) to opiates. To expound a bit– I can be given straight morphine but synthetics and derivatives have all given me life threatening reactions, most to mention of this would be when my heart rate and blood pressure plummeted from being given routine fentanyl for SI injections. (Also if you think you have EDS, please avoid steroids as they can further damage what little bit of connective tissues we have been blessed with.)
PS– Hell I just spent 30 min editing and revising this and my hands want to become separate from my body already🙈 If I laugh I won’t cry, right? Right?! 😹
eds ninja 