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

[Allyson]

Allyson (I like Mish Mash Elvis Costello Aim is True reference) a question for you, you mentioned you had had a holter monitor and implied it was diagnostic of something relating to this.....what did they find out? I had one last year and they didnt tell me the results other than I am "fine" no heart problems. I found out after the fact they were assuming my complaint was about racing heart when it was really about oxygen hunger. They said my "palpitations" werent a problem, well I hadnt felt any significant palpitations then grrr seemed like an assumption on their part because of being female with "CFS". Anyway, I digress, I wouldnt think holter would be useful for stretchy vein problem diagnostics etc?
I had a positive tilt table 15 yrs ago but the cardiologist last year dismissed that theory as not significant.

I have had OTs/PTs tell me I am hypermobile in spots, causing some of the spine pain probably. I am short tho and don't look like classic EDS person.

I am not sure ever answered this sorry Spex so do so now

as for classic EDS looks - is that your pic in the avatar?.

EDS face could well fit you if so

my holter monitor was to measure my BP and pulse

It detected that my heart rate went up on static standing - eg in the supermarket.

And it measured my BP overnight which helped the doc determine that my BP was sitting too high ovrnight for midrodine. ( BP rises overnight for unknown reasons)

more info on EDS sympotms and facal features on this link - please share widely

http://forum.notcrazy.net/index.php?topic=9571.0



A

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[Allyson]

Can connective tissue disorders cause blood noses? My son gets blood noses a lot especially when hot. When he was young he also used to dislocate his elbow a lot after his pop gave him a wizzy.

Yes i think so

I get them all the time

easy bleeding an bruisig ai a symptom of EDS

My geneticist told me it is because the capilaries and surrounding CT are weakeed - the same thing that makes our veins stretchy; hence the frequent small bleeds - easy bruising and petecheiae are also common in EDS, as is slow wound healing..

 

[Allyson]

For those looking int IV Saline fluid replacement as I am in light of my low blood volume i was sent this article - a bit dated but at least it exists.

http://circ.ahajournals.org/content/96/2/575.full


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[newearth]

I think you all might find this interesting....a .org site...dysautonomia information network

http://www.dinet.org/what_causes_pots.htm

and wiki even makes mention of EDS and POTS as associated diseases

http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

and here too

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847865/

And here from the mecfs themselves re EDS, hypermobility and Dysautonomia

http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-2010Haavisto-Joint.pdf

Not sure what the big deal is about accepting that its possible for them to be linked and is true in a lot of people who have both or more...and they do....an awful lot that I know of....but not everybody of course just like other diseases for example I have hashimoto's, which is linked to all sorts of other diseases and I have a fair few of them but it doesnt mean everybody will get them all or any of them for that matter, but that doesnt take away from the fact that those other diseases are linked or associated. I dont believe allyson is saying that everyone with ME or POTS or anything else has EDS....just that it's possible for some. Why not just think about it, disagree if you feel not relevant and move on? This thread can actually help a lot of people to maybe ask the specialists and/or get the tests if found to be a candidate due to symptoms/other diseases and actually find out if it applies to them if they feel it rings true. My two cents

 

[Allyson]

I think you all might find this interesting....a .org site...dysautonomia information network

http://www.dinet.org/what_causes_pots.htm

and wiki even makes mention of EDS and POTS as associated diseases

http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

and here too

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847865/

And here from the mecfs themselves re EDS, hypermobility and Dysautonomia

http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-2010Haavisto-Joint.pdf

Not sure what the big deal is about accepting that its possible for them to be linked and is true in a lot of people who have both or more...and they do....an awful lot that I know of....but not everybody of course just like other diseases for example I have hashimoto's, which is linked to all sorts of other diseases and I have a fair few of them but it doesnt mean everybody will get them all or any of them for that matter, but that doesnt take away from the fact that those other diseases are linked or associated. I dont believe allyson is saying that everyone with ME or POTS or anything else has EDS....just that it's possible for some. Why not just think about it, disagree if you feel not relevant and move on? This thread can actually help a lot of people to maybe ask the specialists and/or get the tests if found to be a candidate due to symptoms/other diseases and actually find out if it applies to them if they feel it rings true. My two cents

Hi Thanks forthe helpful links and input Newearth
sums it up pretty well I think so hopefully we con move on to productive discussion


Janet kindly sent this - for once the intro does not descirbe EDS as being characterised by joint hypermobllity which is progress.

2013;2013:764659. doi: 10.1155/2013/764659. Epub 2013 May 16.
Ehlers Danlos Syndrome: An Unusual Presentation You Need to Know about.

Karaa A, Stoler JM.
Source
Boston Children's Hospital, Harvard Medical School, Boston, MA 02115-5724, USA ; Boston Children's Hospital, Genetics Division, Hunnewell 536, 300 Longwood Avenue, Boston, MA 02115, USA.

... Abstract
The Ehlers Danlos syndromes (EDS) comprise a group of connective tissue disorders characterized by tissue fragility of the skin, ligaments, blood vessels and internal organs.

Variable degrees of clinical severity and organ involvement are due to the molecular and biochemical heterogeneity of this group of disorders and have led to classification into well-characterized subtypes that are extending with the discovery of new genes and overlapping syndrome. Types include classical EDS (EDS I/II), hypermobility EDS (EDS III), vascular EDS (EDS IV), kyphoscoliosis EDS (EDS VI), arthrochalasia (EDS VIIA, B) and Dermatospraxis (EDS VIIC).

Even to the well trained professional, the diagnosis of EDS remains a challenge due to overlapping symptoms and cases can remain without a well-defined classification. Life altering complications of this group of disorders include vascular and hollow organ rupture and ligamentous laxity leading to chronic dislocation with ensuing pain and long term disability. Patients initially present to the general practitioner who is expected to recognize the symptoms of EDS and to proceed with appropriate referral for definitive diagnosis and management to prevent devastating complications. In this paper, we describe a male with classical EDS complicated by devastating vascular and orthopedic events

 

[Allyson]

BLOOD VOLUME MEASUREMENT IMPORTANT NEW POST


have you had your blood volume measured?
this is important for all of us as it it some positive proof of our illness
Print it off and take it to your GP and /or or specialist
I have had this done in Australia at ROYAL Melbourne Hospital with a hematologist ( from RMH) referral
My GP referred me to the hematologist who ordered the test - not sure if a GP can order the test.

My blood volume was very low - 4.33 litres intead of 5 litres and i may have some brain damage due to small blood vessel ischaemia as a resultt according to my MRI - also done at RMH after a referral from a neurologist there.

I drink LOTS of electrolytes every day so they evidnetly do not fix it
A MAJOR hospital wil be needed to do this simple non-invasive test - the blood volume test though as it need a nuclear medicine department to do it MRIs can be done in a lot of places.
http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx


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[PNR2008]

I have ischemic damage shown in 2 MRI's but thought from the many complex migraines I've had since age 11 yrs. Also 2 TTT at Cle Clinic showing some decreased blood volume but not much.

 

[Allyson]

I have ischemic damage shown in 2 MRI's but thought from the many complex migraines I've had since age 11 yrs. Also 2 TTT at Cle Clinic showing some decreased blood volume but not much.

HI PRN - lovely pic


thanks, how does a TTT show decreased Blood volume please?

Did they use an upright MRI with it to check blood flow?

Otheerwise how did they measure it precisely?
Thre was no posisitonal change involved in the red cell mass test - i lay down throughout.

Also early migraines often occur in EDS - have you had that ruled out?
there is an EDS sympotm list in the first post here if not.

It occurred to me that low bood volume would likely put someone at increased risk of embolis, stroke, heart attack etc

Best regards,


Ally

 

[Allyson]

Useful articl on connective tissue - and i see our frinds themast cells tucked away in there too!

http://www.courseweb.uottawa.ca/medicine-histology/English/SS_BasicTissues/Connective_Tissue.htm


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[John H Wolfe]

It seems likely to me that certain types of POTS probably relate to the stretchy veins aspect of comorbid EDS but that ME/CFS, at its core, likely relates more to the structural (hypermobility) aspect that Dr. Rowe is currently investigating (re: restricted neurodynamics, as per another of your threads)

 

[PNR2008]

MRI's were done separately. I don't think the tilt table test revealed my blood volumn but all the hook-ups did. I fainted within 7-9 min on both at a certain angle. Will find paperwork if you need more specifics. No I haven't checked if I have EDS, another weird disease after 25yrs of fighting for CFS/ME. Sorry I just don't have it in me, but glad you're on this.

 

[Allyson]

Thanks for that PNR


I got the plasma volume testing done at Royal melbourne hospital nuclear med dept.

Any one including GP can refer a patient to Nuclear medicine department at RMH for the test


It was bulk-billed so no cost involved.

(they call it a Red Cell Mass test but it is the same thing - aka plasma volume test as it meaasures both.)

My GP referred me there to hematology as my red cell count was high

hematologist looked back last 3 year and said it had been high all that time so probalby mine just sat always in the high range but he mentioned the test was available to determine if it could also be from low plasma volume...... but said it was probly not worth doing the test

However i knew low blood volume was a symptom of ME/cfs /OI/POTS/EDS etc so i insisted on having it

Then i found a blood slip of mine from 1998 when i first started going to docs for "fatigue" and my RCC was normal then at least so this WAS abnormal for me -as he confirmed on next appt .

Glad i had it now as it explains a lot and fits in with all my symptoms.

I
had been taking lots of fluids beforehand - oral eclectrolytes - so somehow the fluid is not getting into the blood stream - no one has ever known why we have low blood volume that i can find but it has been stated for many years that we do.


I did stop my B 12 incjections and the licorice root a week or two before the test.

this was the test dexcription
http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx


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[Allyson]

MRI's were done separately. I don't think the tilt table test revealed my blood volumn but all the hook-ups did. I fainted within 7-9 min on both at a certain angle. Will find paperwork if you need more specifics. No I haven't checked if I have EDS, another weird disease after 25yrs of fighting for CFS/ME. Sorry I just don't have it in me, but glad you're on this.

they are now doing upright MRIs in some places PNR which would show a decrease in cerebral perfusion if htat is happening I should think - my lying one showed no apparent low csf as the neurogist had suspected- though i wonder if a standing MRI would have

best

ALly

 

[Allyson]

Someone in remote area pm'ed me about tranport issues and I just realised

Prof O'Callaghan does skype consults for those in remote and rural areas ' who want to get theri POTS /OI issues cheked out

Not for me alas as i live too close by but it might help others


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[Allyson]

Marfan's Syndrome is also closely related to EDS - it is quite possible to have both I believe too

My grandfather had Marfan's habitus as does my brother ( ie tall, thin, long - limbed, hare to put on weight.)

My geneticist was very interested in these as related to EDS.
Lots of models and supermodels nowadays are Marfan's habitus at least - as that is the current look.

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[Allyson]

Joint Hypermobility Syndrome is now considered synonymous with EDS-Hypermobility Type by a group of the top experts. http://www.hypermobile.co.uk/index.php?option=com_content&view=article&id=157&Itemid=37 Not everyone has caught up yet, though.
www.hypermobile.co.uk - Latest HMS/EDS information.
www.hypermobile.co.uk


So as i read it - if you are HM you do have EDS. but if you are NOT HM you can still have EDS.



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[Allyson]

Latest update -Joint Hypermobility Syndrome is now considered synonymous with Ehlers-Danlos Syndrome-Hypermobility Type by a group of the expert British doctors. http://www.hypermobile.co.uk/index.php?option=com_content&view=article&id=157&Itemid=37
.

www.hypermobile.co.uk - Latest HMS/EDS information.
www.hypermobile.co.uk
So as i read it - if you are have HMS you DO have EDS.
But it is also possible to have EDS and not be hypermobile.
http://forum.notcrazy.net/index.php?topic=9571.0

ALso someone asked me about petechiae - tiny red dots just under the skin - often on the trunk of the body- yes they are a symptom of EDS - the same weak connective tissue that leads to defective joiints and veins causes defective capillaries and surrounding CT - hence also easy bruising and bleeding.


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[Allyson]

Good descriptions here:

http://www.physio-pedia.com/index.php?title=Ehlers-Danlos_Syndrome

Hey thanks Meryl,

unfortunately they trot out the hackneyed and innacurate intro that the illness in charactersed by joint hyperwxtensability and skin elasaticity - they are not necessary to have to have EDS but i suppose as Physios that is what they look at mostly.





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[WillowJ]

Latest update -Joint Hypermobility Syndrome is now considered synonymous with Ehlers-Danlos Syndrome-Hypermobility Type by a group of the expert British doctors. http://www.hypermobile.co.uk/index.php?option=com_content&view=article&id=157&Itemid=37
.

www.hypermobile.co.uk - Latest HMS/EDS information.
www.hypermobile.co.uk
So as i read it - if you are have HMS you DO have EDS.
But it is also possible to have EDS and not be hypermobile.
http://forum.notcrazy.net/index.php?topic=9571.0

ALso someone asked me about petechiae - tiny red dots just under the skin - often on the trunk of the body- yes they are a symptom of EDS - the same weak connective tissue that leads to defective joiints and veins causes defective capillaries and surrounding CT - hence also easy bruising and bleeding.


A

That's interesting.
http://www.ncbi.nlm.nih.gov/pubmed/16396727

These data indicate that a subgroup of patients with CFS present with generalized joint hypermobility and most patients with of CFS fulfill the diagnostic criteria for BJHS.

http://www.ncbi.nlm.nih.gov/pubmed/12219066

Joint hypermobility is more common in patients with CFS than in otherwise healthy children with common skin disorders. The etiologic significance of the observed association remains to be defined.

The leading EDS geneticist in my country says it is not necessary to have traditional joint hypermobility as an adult to have EDS, even EDS joint hypermobility type, as one may have tight tendons/muscles which may mask the looseness of the joints.

Of course there are other types of EDS, not quite all of which include JH as a diagnostic criterion.

A Netherlands study did not find joint hypermobility.

Patients with CFS did have lower blood pressure and more extensible skin but lacked the most important parameter indicating constitutional laxity, ie, joint hypermobility. Moreover, the collagen metabolism measured by crosslinks and hydroxyproline in urine, mainly reflecting bone resorption, was not different. The unexpected finding of stiffer arteries in patients with CFS warrants additional investigation.

Not sure whether the urine test is an appropriate measure for CTD. Osteoprorosis is one possible symptom of CTD but I don't think that is diagnostic test for CTD.

Pretty sure Julia Newton has found arterial stiffness, too.
ETA: it was Gwen Kennedy who found arterial stiffness in adults. (details in post 883) Although the Netherlands abstract may seem to imply this is related to CTD, I'm not sure whether this is so.

 

[Allyson]

That's interesting.
http://www.ncbi.nlm.nih.gov/pubmed/16396727


http://www.ncbi.nlm.nih.gov/pubmed/12219066


The leading EDS geneticist in my country says it is not necessary to have traditional joint hypermobility as an adult to have EDS, even EDS joint hypermobility type, as one may have tight tendons/muscles which may mask the looseness of the joints.

Of course there are other types of EDS, not quite all of which include JH as a diagnostic criterion.
A Netherlands study did not find joint hypermobility.

Not sure whether the urine test is an appropriate measure for CTD. Osteoprorosis is one possible symptom of CTS but I don't think that is diagnostic test for CTD.

Pretty sure Julia Newton has found arterial stiffness, too.

Great thanks Willow - yes my specialist also says you do NOT nd joint HM. I suos that got picked u as it was recogniable - then all the invisible sympotms tended to be overlooked by doc as they are in ME/cfs.
DO you have any Julia Newton reference please? I don not know her; si will sentd this to my docs - the arterial stiffness is new to me too but sounds logical. And yoeu the 2011 International concensus doc on ME says that joint HM is common in those with ME.

thanks again - is it OK if i it elswhere? ( I have made a condensed thread on this topic on NC as this one had got too long for people to read.)

cheers
Ally