1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

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

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Nov 12, 2012.

  1. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne

    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



     
  2. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    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..
     
  3. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
  4. newearth

    newearth

    Messages:
    15
    Likes:
    15
    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 :whistle:
     
    Allyson likes this.
  5. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    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
     
    newearth likes this.
  6. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    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


    ..................................................................................................................................
     
  7. PNR2008

    PNR2008 Senior Member

    Messages:
    442
    Likes:
    692
    OH USA
    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 likes this.
  8. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne

    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
     
  9. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
  10. John H Wolfe

    John H Wolfe Senior Member

    Messages:
    220
    Likes:
    36
    London
    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)
     
  11. PNR2008

    PNR2008 Senior Member

    Messages:
    442
    Likes:
    692
    OH USA
    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 likes this.
  12. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    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


    A
     
  13. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    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
     
  14. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    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


    A
     
  15. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    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.

    A
     
  16. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
  17. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    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
     
  18. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    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.





    A
     
    merylg likes this.
  19. WillowJ

    WillowJ Senior Member

    Messages:
    3,104
    Likes:
    2,733
    WA, USA
    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 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 likes this.
  20. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne

    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
     
    WillowJ likes this.

See more popular forum discussions.

Share This Page