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 Post subject: EDS plus myofascial pain/fibro
PostPosted: Sun Dec 02, 2007 4:17 pm 
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Spoonie in Training
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Joined: Sun Dec 02, 2007 3:38 pm
Posts: 46
Location: nebraska, omaha
Hey i'm new on this site and have EDS type 3. Does anyone with EDS find that there is like this double edged sword kinda thing, well i'm sure itls all a double edged sword because everything is pulling and fighting everything else for homeostatis. Anyways to my question, i have chronic myofascial pain and loose joiints that sublux but few dislocations because my PT says my muslces are always so tight because of the darn knots. I guess in some way they prevent whole dislocations but i'm sure cause subluxations especially in my hips and shoudlers. I just wondered who else has experienced this and has had a hard time like me getting a knot to stop flaring up. PT doesn't seem to help anymore like it used to because my muscles are always tense or tensing up again. Do you think that EDS without myofascial pain is different in the way the muscles are effected? My muscles are all choppy and in lumps lol. Any advice would help me feel less frustrated i'm sure.

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"It is only with the heart that one can see rightly; what is essential is invisible to the eye.
-Antoine de Saint-Exupery-
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NAOMI Lea.-21yrs.
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EDS type 3, Dysautonomia, Hypoglycemia&GP, IBS, Endo, etc. etc. etc.


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 Post subject:
PostPosted: Sun Dec 02, 2007 6:15 pm 
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Crystal Spoon
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Joined: Thu Jan 11, 2007 9:25 pm
Posts: 9105
Location: Connecticut...part-time Texan...and French at heart :)
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I have the same problem. When i was in PT i'd spasm so badly i'd start screaming and would have to be released and stretched....but because of the hypermobility the stretching didn't work.

My CMP only feels better when i'm not putting weight on my joints...ie: when i'm laying down or in a comfy chair tilted slightly back that fits me well.

My doc told me my muscles work so hard to keep my joints in...that they no longer know how to relax. It never stops...because the few times i've been relaxed completely...i've had to get up and it comes right back.

My muscles don't seem to push my joints out...i also have hypotonia from the EDS...so it's just joints slipping around for me!

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~Stephanie~

Unknown genetic disorder causing EDS, Dysautonomia, Asperger's Syndrome and other wacky things (ie. seizures, vision impairments, JRA)
Also have Bipolar I, Borderline Personality Disorder, EDNOS and some other stuff.

I am rarely here so if you wish to speak to me please use my email provided in my profile. Thanks :arrow:


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 Post subject:
PostPosted: Sun Dec 02, 2007 7:16 pm 
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Spoonie in Training
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Joined: Sun Dec 02, 2007 3:38 pm
Posts: 46
Location: nebraska, omaha
thanks for the post. Yea i figure there had to be people with the same problem lol. I am never relaxed especially with the dysautnomia and increased adrealine or wutever. My PT tells me all the time to try and relax my muscle, plus i just wonder if sometimes he makes it worse on my muscles sometimes. Its really hard to keep what he's released that way for very long like you said. Its like once i get in the car its all ruined. At the same time I notice that I get real bad if I don't go to physical therapy at all so I have to go. My mom is a nurse studying to get her MA and she just told me that in her class she learned that with Fibro and CMP that the longer your muscles are tight the more Lactic acid there will be- some kind of metabolism biochemical. I felt like saying to her 'so your saying those of us with EDS are basically stuck.' Actually i was thinking a far more taboo word, but yea its frustrating and just plain sucks. Plus i'm not sleeping well or maybe havn't in 7 yrs so i'm sure that doesn't help either.

Like you say I only also feel relaxed only when laying in bed with my head supported or in a chair but sometimes if i don't move i'll get to stiff and then tere goes the joints.

_________________
"It is only with the heart that one can see rightly; what is essential is invisible to the eye.
-Antoine de Saint-Exupery-
-------------
NAOMI Lea.-21yrs.
-------------
EDS type 3, Dysautonomia, Hypoglycemia&GP, IBS, Endo, etc. etc. etc.


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