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

[Allyson]

Acute Dilatation of the Ascending Aorta and Aortic Valve Regurgitation in Loeys-Dietz Syndrome
T Nakajima, K Tachibana, Y Miyaki, N Takagi… - The Annals of Thoracic …, 2014
... 1]. It has been reported that patients with LDS undergo cardiovascular operations earlier (mean age, 16.9 years) and die earlier (mean age, 22.6 years) but have a lower intraoperative mortality rate compared with patients with vascular Ehlers-Danlos syndrome or Marfan's ...


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[Allyson]

Guidelines for GPs produced by the HMSA http://hypermobility.org/guidelines-produced-for-gps/

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[Allyson]

spinal fusion for scoliosis in EDS

http://www.healio.com/orthopedics/j...in-ehlers-danlos-syndrome-kyphoscoliosis-type

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[Allyson]

EDS/joint hypermobility conference for therapists.....spreading the knowledge
http://www.advocatehealth.com/documents/seminars/eds-apr-2014.pdf

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[Allyson]

WHY bother to GET an EDS diagnosis? How will that help me ?

1 it is genetic so you may want to know for your kids/ grandkids who may get it worse than you - and to avoid passing it on

2 there are associated cardiovascular risks so you need to have and echocardiogram every 5 years - for all types of EDS

3 it is a great relief if you get a diagnosis because, when you understand it, it explains all your symptoms logically and you do not feel like you are crazy, depressed, anxious or have social phobias - it has physical reasons for all these.

4 they estimate that one in every 100 people have it but are just undiagnosed - if we all get diagnosed we will get more research and a possible cure.

5 There are great symptomatic management strategies for it.

6 you can connect with others who have it too which is a great relief and a good source of information

7 there are pregnancy risks such as post partum haemorrhage and miscarriages

8 there are dental issues like poor teeth and periodontitis that you may want to take extra care over - EDSers often need more local anaesthetic for dental procedures for example.

9 sometimes it helps you realise what other symptoms you DO have - eg you may not know what brain fog is til you read about it as I did and it clicks - oh that is those days when I lie in bed all day and can do nothing and feel like i have a hangover for no reason...same with heat intolerance, photophobia, hyperacousia (sensitivity to noise) etc

10 there are many eye issues associated with it such as near sightedness and detached retina so you may want to let your optometrist/ophthalmologist know about it.

11 It can help if you are giving up smoking to know that nicotine is a stimulant and part of the reason you feel bad is that smoking seems to mask some of your EDS symptoms so you feel better when you smoke

12 some of the symptoms - brain fog , crashes, can feel like depression when they seem to hit "out of the blue " - these can be relieved by treatments such as rehydrating with electrolytes, wearing compression garments etc and maybe you do not have depression after all....

 

[TCP36]

I Have EDS, ME, POTS and Erythromelalgia. All related and makes sense. Born with mutated EDS gene and predisposed to getting ME after EBV.

 

[merylg]

Program now finalised, looks interesting!
http://www.edsconference.com.au/2014/index.php

 

[Allyson]

Program now finalised, looks interesting!
http://www.edsconference.com.au/2014/index.php

yes and one day I s already booked out I believe a good sign
- thanks Merylg


Autonomic symptom burden in EDS - are Rheumys catching up?

http://www.semarthritisrheumatism.com/article/S0049-0172(14)00107-3/abstract

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[Undisclosed]

@Allyson There is a message in your conversation inbox that you are required to answer.

Thank you.

 

[Hell...Hath...No...Fury..]

This is a really interesting topic and something i've been meaning to check out for years but have been busy dealing with other health things and didnt want to pile everything on new ish GP in one go.

Its interesting that someone mentioned people being told they have 'growing pains' among other things.

I had very severe 'growing pains' as a child yet i never did any growing. The pain in my bones stopped me sleeping for months at a time, but that could be down to my athletics coach pushing me too hard as i could beat most adult members when i was 11-13 so he worked me harder than the other kids.

I ended up with osteo arthritis in my knee by age 13.

On the beighton scale, i score 7 out of 9, sometimes 9 out of 9 depending on the day as some days my little fingers can only do 90 degrees depending on pain levels.

I have migraine from age 4 (or at least it was diagnosed by age 4) and POTS.

I'm putting off asking my doctor about it as i'm not sure how to bring the subject up. Ive only just got her to do my referals for POTS and dont want her to think i'm just pulling random stuff out of the air. I spoke to the POTS doc about possible EDS but he just smirked at me. My GP doesn't do smirking but it did put me off a bit asking.

I'm also worried that if they did think it was EDS that it might encourage them to push stretching and exercise on me as my PEM doesn't allow any right now.

Is it common to have a 9 out of 9 score with no EDS? Ie just loose joints?

Sorry if its already answered. I think i managed to read half of the 500 posts

 

[Allyson]

EDS and POTS lecture by Professor Peter Rowe, Johns Hopkins Uni to physicians
explosion in occurance or diagnosis of POTS
got fatigue? feel too hot then too cold - gut issues ? anxiety? sleep issues?

No need to watch just play it in the background as few visuals
http://www.dysautonomiainternational.org/blog/wordpress/doctor_rowe_pots_lecture/

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[Hell...Hath...No...Fury..]

Wow, what a great video!!! Thanks for posting that Allyson. I've watched half and will do the other half after a rest. The 'POTS' doctor i saw should watch that. I knew they were clueless by how they responded to my description of symptoms but this video makes them look like complete (insert insulting word here) not only were they clueless about ME which they could be forgiven for but this video shows they were just as clueless about POTS, so getting a condascending smirk from mentioning a possible EDS link makes perfect sense now. Its a pleasure to watch that video!

 

[Hell...Hath...No...Fury..]

Hmmm at 37 mins in; he says 'They cannot just rest to get over their symptoms' that explains why the POTS doctor wanted me up and out of my wheelchair and he would have took it off me if he could. (Coz i'm just using one for the fun of it right now)

That above sentence fills me with dread for people who also have ME as it means they won't be allowed to rest because they'll be 'deliberately' not trying to help their POTS. Which was the impression i was given when i was at the hospital; when they appeared to be trying to kill me with 2.5 hour questioning straight after tilt test.

May be safer to be not diagnosed with POTS if also have ME.

 

[wastwater]

1:This is interesting ive just arrived at the conclusion I may have a COL4A1 mutation.The buzzwords surrounding it are leukoencephalopathy.Hereditary Ischemic small vessel diseases.White matter brain diseases.2 (maybe unrelated) Im also wondering if there is an overproduction of Interleukin 2 in response to virus like EBV creating a toxic encephalopathy.I don't have EDS or POTS.

 

[wastwater]

This is my very rare 1 in 200,000 genetic disorder http://www.malacards.org/card/axenfeld_rieger_syndrome.There are many interesting things about it and I wonder if it may hold clues for autism and ME/cfs as many people with it report fatigue states from wondering if they have MS to fibromyalgia to childhood severe fatigue,it mentions vid D3 Doxycycline cannabidol proline and glutamate maybe that's to do with microglial activation.Leukemia,prostate and Breast cancer are all loosely linked to it too.Connexins are important in the heart eyes and brain

 

[wastwater]

Maybe ask is ME due to leaky tissue

 

[Iritu1021]

I don't know if this has been already mentioned but we also now know that in women with EDS (or perhaps other identified or unidentified connective tissue disease) who have been pregnant the POTS is a complication due to pelvic vein congestion because the pelvic veins become stretched out during pregnancy. I always had some degree of orthostatic intolerance but it became worse with each pregnancy. The good news is there is now a new procedure called pelvic vein embolization which leads to 80% improvement. It's also possible to embolize overstretched leg veins. I'm including a link to his talk:

Overall, I applaud Allyson for making the connection over two years ago. I have no doubt that a very large proportion of us ended up here due to a genetic deffect in collagen or connective tissue and subsequent impairment in circulation. Everything else can be linked to the consequences of that. For example, I also have classic ME with chronic active EBV but I am confident that the reason behind it is impaired blood circulation in my head and neck area.

The link has been proven, it is simply being ignored. What we need to do now is get it out there and make everyone to believe it. Right now EDS is an "orphan diseas", the drug companies won't invest money in developing treatment strategies unless we convince them that it is much more widespread than originally believed (just in milder presentations) and they will see that there is a huge market for novel therapies.

 

[physicsstudent13]

I had neurofibromas surgically removed during a colonoscopy and tinnitus and hearing loss. I started on losartan which is a new therapy. Could I have brain tumors and NF2 causing sleep disorders or fogginess and seizures?

 

[wastwater]

white matter changes and brain small vessel desease arnt these meant to be core findings in ME/cfs

 

[Iritu1021]

I had severe ME with sky high EBV antibody titers. Then after treatment with thyroid and stimulants I developed severe POTS. At that time I was diagnosed with Ehlers Danlos. I spent a year in bed. According to every specialist I saw, my situation was doom and gloom. But I had too much to live for to accept that. Besides, being a physician myself, I am well aware of how worthless doctors really are.

In truth, even those who call themselves specialist, only know parts of the truth. Once I began to approach this disease as a puzzle that had more than one answer, my recovery began to move forward with inxredible speed. After being very ill for ten years and essentialy bed bound for a year and a half, I am now able to handle hard core yoga work outs, 30 min swim sessions, long walks, and travel. I see the world the way I used to see it again. I am able to enjoy it again. For me, its truely been a miracle.

At this point, I still have some fine tuning to do to help me deal with anxiety and some procrastination as I am diving back into the full life after being out of business for ao long, but I plan to share my journey to recovery with all of those who are interested through a website I am going to create.

I wish there was a faster way to do it but unfortunately there isn't one because there is never going to be one simple answer as to what causes it. It's about creating a map to your body, brain and spirit and following it, both with knowledge and intuition. The good news is that there is definitely a way!
Stay tuned, my friends!