Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

[Sushi]

over here, the drafts are third from right, after the two arrows...a little zip-disk looking thing.
to be fair, @Sushi, it is to the left of the arrows!

OK, move my post to ME moments! Yes, it is 3rd from the right to me too! Duh and double duh!

I was counting to the left, from the right hand side!

Sushi

 

[WillowJ]

just lo

just lost my reply again Sushi - about 5 lines written, and it disappeared -very frustrtating - I wil have to type them in word form now on first - is anyone else getting this still ? it does not happen to me on any other site, just here

yes, my messages at PR sometimes disappear, or sections of them disappear. It generally happens when I hit enter or when the compose box acquires a side scroll bar. Either the whole message will disappear, or it will disappear up to a quote, or a paragraph or three will disappear.

Sometimes I can recover them with the Edit/undo function on my browser (Firefox), sometimes not. I have not lost one since the "save draft" feature came back here, so I've not tried that yet.

@wdb

 

[Allyson]

thanks, allyson. it's unfair that everything is on FB now, which I am not.
oh, and thanks too for notcrazy--which is where i learned i prolly am EDS.

yes there is a LOT on FB now Leela - heaps of POTS pages too - you do not need your real name to sign up - many use evident nick names etc and it is well worth being on for the wealth of info and exchange of symptoms

good luck with it all - and do keep us updated on your progress

ALly

yes I just got a draft saved message then thanks @Sushi in bottom right - thanks - that seems to be working for me now !

 

[merylg]

 

[Allyson]

thanks MerylG - very interesting. Dr Francomano is, I believe, one of the several top specialists around the world who now believe NOT need to be hypermobile to have EDS.


cheers

Ally

 

[Allyson]

Exertnal Dyspnea - a common symptom of EDS and ME - how common is it ??

I remember when I was ill but still at uni and I went to an all-day seminar in the usual hot, crowded room - Well I kept getting up to run out for water, toilet, errands... any excuse to move (all largely unconscious) -- which made people wonder how ill I was if I kept moving around that much - but it was preferable to sitting - and of course I crashed subsequently - which they did not see.

So it occurred to me that one very common and easily tested but hugely overlooked symptom is exertional dyspnea, which I think is almost universal to this illness?

I notice they are running lung ads on TV here in Australia at the moment saying that if you can't walk up one flight of stairs without getting short of breath there is something wrong and you need your lungs tested

I have just 10 steps up to my bedroom and never fail to get SOB when I go up them - have had it since I was 30 at least , and no matter how fit I am - eg when I was doing aerobics and cycling regularly.

It is kind of a litmus test I have read - cheap and easy but no docs test for it.

Everytime I go up to answer the phone people say "Oh, did you run to the phone" - No.

Does anyone else get this - or more to the point does anyone NOT get it please?

many thanks

Ally

 

[Allyson]

EDSAUS are pleased and excited to be able to tell you all about a major EDS study that is happening through the University of Sydney, Australia and to invite you to consider becoming a part of the study as they are still looking for 120 participants from around the country. I do have documents with more detailed info about the study, but thought I would just share 'must know' information with you all here as I have with all EDSAUS members (so if you are a member of EDSAUS - You may have seen this already

This study is aimed at adolescents (over 16) and adult patients who have:
- Been diagnosed with EDS Hypermobile Type (or a combination of Types, one of which being Hypermobile Type)
- Been diagnosed as having Joint Hypermobility Syndrome/Benign Joint Hypermobility Syndrome
- Generalised hypermobility who meet the Brighton criteria (see attachments) - even if they haven't been given a formal diagnosis of any kind

The overall goal of this study is to determine the prevalence of the broad range of signs and symptoms in an adult population who are perceived as being hypermobile.

To be a part of this study, participants simply need to contact Anne Krahe and she will send you a detailed questionnaire to fill in (taking about 30mins) which covers things like age, ethnicity, joint pain, soft tissue injury history, family history, fatigue, episodes of fainting or stress incontinence, gastrointestinal symptoms and history of low trauma fractures. Your height and weight will be recorded and then a series of physical tests will follow such as assessing your hypermobility, skin elasticity and thickness, balance, joint laxity etc.

For those living in Sydney, physical testing will take place at the Faculty of Health Sciences in Lidcombe NSW, or possibly in your own home at a time that suits you if you are unable to travel. Interstate participants are encouraged to fill in the questionnaire, and if, in the future we have enough participants and a venue in various states, we may possible be able to organise a day where physical assessment can take place. Even if it turns out that physical testing cannot be performed, filling in the questionnaire is crucial to the data collection aspect of this study.

Because this study is completely voluntary, participants may choose to withdraw at any time. Any and all aspects of the study are strictly confidential and while a report of the study may be submitted for publication, all participants will remain anonymous and unidentifiable.

I urge all our members who meet the criteria to consider applying to participate. The researchers need a large pool of patients with varying degrees and severities of EDS Hypermobile Type/JHS/Generalised hypermobility to be able to compile a broad, solid list of data that gives them a proper insight into this particular group of patients. This study is the first of its kind here in Australia, and it is important to support these studies locally, not only so we can get statistics on various populations of patients, but so that we as a country can contribute to the worldwide effort of piecing together of EDS, its genes, prevalence, research and management options.

If you would like more information about this study, please do not hesitate to contact Anne Krahe via email at akra2983@uni.sydney.edu.au - she is more than willing to discuss this study with potential participants and will be able to answer any questions you may have.



A

 

[Allyson]

Latest collagen gene testing for OI type VII, Marfans and more

http://www.pathology.washington.edu...hp/available-tests-right-column/col-3a1-gdna/

A

 

[Allyson]

POTS EDS and pelvic congestion symptoms

comment form LIsa_
This is long but the Dr is great & knows his stuff, so if you can get 23 mins into this you'll learn a lot about how our veins are impacted by EDS, (our leaky valves, bulging veins, abnormal veins and varicose veins) and why compression stocking work so well for POTS. It's so much more than pelvic congestion. I'd see this Dr if I was in the US.



Ally

 

[Allyson]

AORTIC DISSECTION - OFTEN MISSED AND Mis-DIAGNOSED AS HEART ATTACK
WHY EDSers need an echocardiogram every few years
aortic dissection
http://www.thedoctorstv.com/videolib/init/1548
Ally

 

[Allyson]

and for those unsure of EDS diagnosis and wanting more info this is a good site for sorting our rare diseases
http://www.eurordis.org/rare-disease-information


A

 

[Allyson]

.—Classification of EDS. and genes associated - note now 17 types

CASTORI 2103

Subtype Inheritance Gene(s)

Major forms
Classic AD COL5A1, COL5A2
Hypermobility/JHS AD? Mostly unknown
Vascular AD COL3A1
Kyphoscoliotic AR PLOD1
Arthrochalasia AD COL1A1, COL1A2
Dermatosparaxis AR ADAMTS2
Rare/emerging forms
Tenascin X-de!cient AR, AD? TNXB
Classic with vascular rupture AD COL1A1
Cardiac-valvular AR COL1A2
EDS/OI overlap AD COL1A1, COL1A2
With periventricular heterotopia XLD FMNA
Musculocontractural AR CHST14
Spondylocheirodysplastic AR SLC39A13
Progeroid AR B4GALT7
Kyphoscoliotic with deafness AR FKBP14
Parodontitis AD Unknown
Fibronectin-de!cient AR Unknown
AD: autosomal dominant; AR: autosomal


Ally

 

[Allyson]

EDSers are prone to Keratoconus

http://www.keratomania.com/keratoconus-vision-simulation.html


A

 

[Allyson]

July 2014 EDS conference in Sydney

http://www.edsconference.com.au/2014/

EDS Conference 2014 Sydney Australia - definitely July not october
www.edsconference.com.au
To be held in Sydney, Australia in October 2014, focussing on Ehlers-Danlos Syndrome and other hypermobility syndromes and associated conditions.

A

 

[Allyson]

Castori et al 2013

thanks to Bob for finding this

Am J Med Genet A. 2013 Dec;161(12):2989-3004. doi: 10.1002/ajmg.a.36315. Epub 2013 Nov 6.
Re-writing the natural history of pain and related symptoms in the joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type.
Castori M, Morlino S, Celletti C, Ghibellini G, Bruschini M, Grammatico P, Blundo C, Camerota F.
Source
Division of Medical Genetics, Department of Molecular Medicine, Sapienza University, San Camillo-Forlanini Hospital, Rome, Italy.
Abstract
Joint hypermobility syndrome (JHS) and Ehlers-Danlos syndrome, hypermobility type (EDS-HT) are two clinically overlapping connective tissue disorders characterized by chronic/recurrent pain, joint instability complications, and minor skin changes. Fatigue and headache are also common, although are not yet considered diagnostic criteria. JHS/EDS-HT is a unexpectedly common condition that remains underdiagnosed by most clinicians and pain specialists. This results in interventions limited to symptomatic and non-satisfactory treatments, lacking reasonable pathophysiologic rationale. In this manuscript the fragmented knowledge on pain, fatigue, and headache in JHS/EDS is presented with review of the available published information and a description of the clinical course by symptoms, on the basis of authors' experience. Pathogenic mechanisms are suggested through comparisons with other functional somatic syndromes (e.g., chronic fatigue syndrome, fibromyalgia, and functional gastrointestinal disorders). The re-writing of the natural history of JHS/EDS-HT is aimed to raise awareness among clinical geneticists and specialists treating chronic pain conditions about pain and other complications of JHS/EDS-HT. Symptoms' clustering by disease stage is proposed to investigate both the molecular causes and the symptoms management of JHS/EDS-HT in future studies.

 

[Allyson]

And another useful article on the multi-systemic nature of EDS - thanks again to BOB

http://www.hindawi.com/isrn/dermatology/2012/751768/


ALLy

 

[Allyson]

this illustrates why abdominal compression can be so helpful in POTS sue to EDS

who can remember tht their mother wore a girdle? maybe this is why

when these large vessel get enlarged like a varicose vein does there is going to be a LOT of blood pooling

http://www.healthline.com/human-body-maps/female-abdomen-circulatory


for my money tight compression to the abdo and light to the legs is the go


ALly

 

[Allyson]

EDS and GIT function

http://www.chronicpainpartners.com/...yndromes-affect-on-gastrointestinal-function/


A

 

[Allyson]

regarding EDS
I read the other day that one of the things adrenaline does is makes you tense all your muscles ready for flight/fight

of course I knew that but the word "tense" caught my eye

if we have constant adrenaline release that might lead to constant muscle tightness and aches

especially the typical coat hanger pain of EDS

cheers

Ally

 

[Allyson]

http://www.medpagetoday.com/MeetingCoverage/AAAAI/31471


food allergies and EDS