Health and Fibromyalgia

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AmericanWoman

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Health and Fibromyalgia
« on: September 13, 2017, 12:47:10 PM »
Have you every had something nag at you so long that you finally broke down and followed that little nagging voice.  I need to post about this it seems from that nagging voice, have put it off for weeks thinking it was silly and doesn't have a lot to do with PD but it may fit in the "working on us" from the best I can figure so mods if this isn't in the right place please re-direct it to where it needs to be and I'll make this short.

If you or someone you love has a dx of fibromyalgia have them look into something called Ehlers Danlos Syndrome.

I realize there are folks here from other countries that are probably more familiar with Ehlers Danlos, I learned about it from a doctor from Lithuania working here.  From what I'm learning it's not as rare as thought to be in the States.  The hard part is finding any doctor that knows what it is, that is from personal experience for six + years.

Your born that way if you got it and a geneticist will eventually have to be involved.  It's a genetic thing, whereas most ppl get old and die you won't!  You will dissolve over years...I ain't making this up!  Just like Alka-Seltzer in slow motion.


Hope this helps somebody out there and now that little nagging thing on my shoulder will move on now.  :angel:   

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Seven

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Re: Health and Fibromyalgia
« Reply #1 on: September 13, 2017, 04:21:41 PM »
There are different "levels" of EDS.  It is a connective tissue disorder having to do with collagen.  Think double-jointedness all the way to the circus "freak" whose skin is so elastic that he can pull his skin away from the bones and put nails and such through it.

Although not clinically diagnosed NPDex#2 and most likely our son has a very mild form of EDS.  A good indicator is the "thumb to forearm" test. If you can pull your thumb to touch your forearm using the opposite hand then that is an indicator of possible EDS.  And no, you're not suppose to be able to do that.

Ex#2 had to have a partial knee replacement in his mid-40s that eventually failed and he will need both knees replaced.  He can also spontaneously dislocate his shoulder...all symptoms.  He also thought everyone was able to put their thumb to their forearm.   His playing heavy contact sports during  school years did not help.  He also says he has been recently diagnosed with Lupus.  But again, i am dealing with a PD here so i only believe so much regarding the Lupus since he has said he has taken no proactivity in even Googling what Lupus is.  But i have seen his EDS first-hand.

Our son holds elementary school records for sit-and-reach flexibility.  His fingers would go past his toes.  Boys arent really suppose to be able to do that.  He could also put his feet behind his head, both at the same time.  Not suppose to be able to do that either without being a gymnast or yogi.  So my son has not played contact sports because i wasn't going to let him end up like his dad.  He's now 21.  Luckily he never really had any interest in sports.

A good physician to help start the diagnosis rolling is a family physician that specializes in sports medicine.  I dont want to say i know a lot about EDS, but i worked for orthopaedics for 15 years of my life and then did ortho transcription all the way up to 5 years ago, so I've learned a lot.  And yes, it is genetic and will require a geneticist for a true diagnosis.

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AmericanWoman

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Re: Health and Fibromyalgia
« Reply #2 on: September 13, 2017, 04:37:41 PM »

Lupus was on my brothers death cert.  You hit home with that one.  He had a lot of the same symptoms I have.  I'm hypermoble/Classic, not sure what exactly they are calling that one now, I believe it was type III - may still be?  You are also correct in that most bendy people don't know every body else can't move/bend like that.  The doctor was amused by the shocked look on my face when I told her I though everyone could bend like that.  It's already to my inner organs and they are starting to fall or have already fallen.  This dx sure did make more sense where I was concerned, bad part I'm told nothing can be done about it.  I'm using massages and rest to keep the pain level down.  Being this ill living with a NBPDm was pure hell on earth.  So good to be free, I have less pain since I got out of that situation.