Ehlers-Danlos?

helpful

by new to pace.... - 2022-10-26 04:34:14

Hi, it would be helpful if you filled in your profile.  So everyone would know how to answer your question.

new to pace

EDS (Ehlers Danlos Syndrome)

by Gemita - 2022-10-26 05:04:19

Hello urocyon,

For those who wish to read about Ehlers-Danlos Syndromes (EDS), I attach a link.

https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

EDS are a group of rare inherited conditions that affect connective tissue.  Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

Yes I too have EDS, predominantly hypermobility type with overlap with other types of EDS, as well as some Marfan Syndrome features.  There are quite a few members of Pacemaker Club who have this condition.  Hypermobiliy type is more common and may go undiagnosed without a specialist opinion.  

EDS is a complex syndrome which may affect multiple organ systems and autonomic function depending on which type of EDS we have.  There is often considerable overlap between the different types of EDS, making diagnosis difficult without genetic testing and seeing a qualified EDS consultant.  

Joint dislocation and joint pain, over stretchy, fragile skin which bruises easily, digestive problems (particularly swallowing - I have occasional swallow syncope) and autonomic nervous system problems are perhaps the most difficult aspects of having EDS for me personally.  

Following pacemaker implant, healing of my device wound took much longer than expected and my bruising was extensive.  I experienced a pseudo aneurysm in a blood vessel during pre-implant investigations and had to remain in hospital for several days while healing took place.  This trauma still causes intermittent vascular pain and noticeable pulsations. There was some movement of my pacemaker device soon after implant.  I also suffered damage to a blood vessel where my pacemaker leads reside (subclavian/axillary vein) causing vascular pain across my collarbone for months.  This initially affected blood flow around my device, left upper arm until I naturally formed collateral vein circulation around the trauma which improved blood flow. 

Despite the above implant problems, I can honestly say that my pacemaker has improved my quality of life and many of my symptoms, particularly the falling heart rates that would frequently trigger arrhythmias.  My arrhythmias too, although not cured, are better controlled with pacing at a steady, higher heart rate.  A steady higher heart rate has also improved the function of other organ systems too, particularly my digestion.  Brain fog too from low heart rates is less of a problem now.  A higher heart rate has also resulted in better body temperature control.  I was always freezing, even in summer.  I can highly recommend a pacemaker when indicated, although clearly there will be aspects of EDS that cannot be helped by a pacemaker, for example blood pressure control, tachycardia and some forms of vasovagal syncope. 

If you have specific questions, please ask and we will try to help and yes, please give us more information like the indication for your pacemaker, for example, bradycardia, pausing, syncope?  Thank you