Diagnosed with a Genetic Disorder

I have defective collagen. That explains all my odd ailments. It is called EDS Type III, Hypermobile EDS, hEDS.  Whatever they want to call it, I can tell you
Ehlers-Danlos Syndrome Hypermobility Type 3 sucks.

I have arthritis that's degenerative in my neck & spine...but you name it, I hurt head to toe, even my toe joints hurt. I used to pop my ankles by rotating them every day. I used to roll my toes forward on the carpet to pop them. Now I know not to do that kind of stuff! I was stretching and thought I was helping my body but I was hurting it by somewhat dislocating joints. I was hurting myself in everyday life!

Turns out I've had the Hypermobility type of EDS all my life (that's why I was good in sports!) but the symptoms were bad and it is progressing - That's a positive sounding word for bad news.  I'm stuck in a catch 22....medicate the pain away (just masking it really) and increase the possibility I will damage my body without feeling it (yet), which will probably put me in an endless loop of pain management....or feel the pain and feel like crap all the time but not get addicted. I'm going for "choice" 2 because why ruin my liver and be an addict? I have enough troubles.

The arthritis pain has developed because of all the times I hurt my body and didn't know it. I am also in the quandary of - Do I keep my joints warm to help the arthritis? Because keeping the joints warm also makes them overly mobile, which caused the damage that caused the arthritis! Months ago I was in the ER and they gave me morphine. MORPHINE!!!! That was the only time in 5 years or so that I have been completely pain free and I think that was just an hour or two.

This condition is taking just about everything I have. It pisses me off so bad sometimes but I need to stay aware of negative or stressful stuff because...yes of course that makes it worse. Sigh.

"What causes it?"

It is genetic but there is no known causative gene for the Hypermobility type.

"Do I actually have Fibromyalgia?" I asked.

Not really, said the geneticist - But he said that putting Fibro on my new patient forms
would help providers understand how I feel  - Because EDS is still poorly understood by medical
workers.

"Doesn't skin need to be super stretchy to have this?"

Not necessarily. I don't have super flexible skin.  Now the experts think that many more people
who have FMS may have EDS.

"Diagnosis of Fibromyalgia or EDS...why does that matter? If they're both incurable, why bother?"

If you may have EDS, it is important to know what type. While I have the Hypermobility type, those with the Vascular type of EDS face a risk if sudden death due to aortic dissection that can usually be reduced with proactive surgery.

"My whole body is stiff and hurts. I really doubt I could be hyper mobile at all. I used to be very flexible and active in dance and gymnastics, but now I can barely move!"

The flexibility you had earlier in life IS significant. People lose range of motion with age and arthritis.