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Anyone else have a spine curvature?

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Allyson, my right eye is very nearsighted, but my left is practically normal. Normally, I am not subject to motion sickness, though I've had bouts of vertigo. My ear infections have a simple cause, my Eustachian tubes are narrow, and swell shut when inflamed. I have been subject to fainting since I got my growth in my teens, though I've learned how to avoid this, which is one of the things some psychiatrists object to as catastrophizing. (I don't intend to change. Waking up in Emergency gets expensive.) I had two inguinal hernias repaired as a child.

I suspect many of the problems in ME/CFS are related to either dysautonomia or cardiac output.

Many of the problems we experience in mid-life or as adolescents resemble those seen in "normal" people as they age. Anyone who wants to extend not merely existence, but years in which people contribute to society, ought to be investigating the things which make us different.

yes but the narrow inflamed Eustachian tubes can be due to EDSand are a common symptom of it - hernias are also very typical of it; so is fainting and POTS is then a modification the body makes to avoid fainting

A
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I'm pretty sure I don't have EDS. I can bend my thumb to meet my wrist really easily, but my hip joints aren't flexible. I do have excessively easily scarred/torn skin, but I can't pull it up and it isn't stretchy. I do get very bad vertigo and ear infections, and easy bruising but i don't have the other joint symptoms associated with EDS. I /am/ being tested and most likely diagnosed with Psoriatic arthritis which i think explains some symptoms but not all.

all those syptoms do fit the EDS picture though - many of us ares tiff rather than flexible - but the Beighton score can clarify hypermobile isssues and if you can touch your thumb to wrist it is indicative,

YOU do NOT NEED to be hypermobile now to have EDS is the latest research brom top British specialist s and others world wide - but if you are you almost certainly do have it

my skin is not stretchy either - not sure yet if psoriasis is part of EDS but my mother had it very badly- they are still loking into that

EDS symptoms vary a lot from person to person and you do not need all of them to qualify - there are many types and crossers between types are common too

have you been assessed correctly for POTS/OI?

cheers

Ally
 
Messages
78
Location
Paducah, Kentucky
all those syptoms do fit the EDS picture though - many of us ares tiff rather than flexible - but the Beighton score can clarify hypermobile isssues and if you can touch your thumb to wrist it is indicative,

YOU do NOT NEED to be hypermobile now to have EDS is the latest research brom top British specialist s and others world wide - but if you are you almost certainly do have it

my skin is not stretchy either - not sure yet if psoriasis is part of EDS but my mother had it very badly- they are still loking into that

EDS symptoms vary a lot from person to person and you do not need all of them to qualify - there are many types and crossers between types are common too

have you been assessed correctly for POTS/OI?

cheers

Ally


Oh yes I have Pots/OI quite badly. I use a wheelchair when I have to stand for too long because I've bottomed-out a few times and get faint easily.
How would I go about getting tested or diagnosed with EDS?
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Oh yes I have Pots/OI quite badly. I use a wheelchair when I have to stand for too long because I've bottomed-out a few times and get faint easily.
How would I go about getting tested or diagnosed with EDS?

That all does sound like and EDS picture - you need to find someone who knows how to diagnose it

ask on an EDS fb page for a good informed doc near you

here are more symptoms too in this handy link
http://forum.notcrazy.net/index.php?topic=9571.0


good luck

Ally
 
Messages
78
Location
Paducah, Kentucky
Wow that symptom list is eye-opening, I'll definitely get that checked out. I have an app at my Rheumotologist soon so I will definitely take that list..I have most symptoms that line up with that, than i thought.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Wow that symptom list is eye-opening, I'll definitely get that checked out. I have an app at my Rheumotologist soon so I will definitely take that list..I have most symptoms that line up with that, than i thought.


yes a lot of Aussies are finding they have EDS when tested properly for it Rinxx

be aware thought that a lot of Rheumys do not know a lot about it and so may say you cannot have it as it is a rare disease - it is now known not to be the case

so you may need to find one who does know about it if yours is not open to new research

In the US apparantly - especially many rheumys - are not up with the current research sadly

best of luck

Ally
 

Asklipia

Senior Member
Messages
999
I think these abnormal spine curvatures are not only caused by bad posture and weakening of muscles, but also by the pressure of an engorged lymphatic system.
This is a self-perpetuing situation.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I think these abnormal spine curvatures are not only caused by bad posture and weakening of muscles, but also by the pressure of an engorged lymphatic system.
This is a self-perpetuing situation.

that may be I do not know about that - but it did seem logical to me to read that a curvature could be caused by uneven ligament tension - the ligaments pulling unevenly on either side of the spine


A