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

[Allyson]

Everyone knows the best part of ice skating is watching every else fall on their butts

He he good one Val
thinking abut hot and cold

had lots of het days - 32 degrees and higher for llast10 days

today is cooler and i fell better
but whne it is very cold we do not feel better?

why not?
maybe because then we are in heated environments and wearing warm clothes and eating hot meals and hot drinks which would vasodilate the abdominal blood vessels???
this is apart from temp regulation problems we may have

 

[VeganMonkey]

A bit off-topic, but I don't want to start a whole new thread on EDS:
The stretchy skin or 'velvety skin' that gets mentioned in many articles on EDS, can someone explain what that exactly is?

 

[taniaaust1]

A bit off-topic, but I don't want to start a whole new thread on EDS:
The stretchy skin or 'velvety skin' that gets mentioned in many articles on EDS, can someone explain what that exactly is?

Photo of EDS skin http://adam.about.net/encyclopedia/Ehlers-Danlos-hyperelasticity-of-the-skin.htm
......

I dont know if I mentioned it here or not but not long ago (probably 6 weeks ago) my skin went stretchy. Next day it was back to normal. It was the first time Ive experienced stretchy skin. So due to that Im going to popose that whatever causes the stretchy skin can change.

Has anyone heard of EDS people having their skin vary in its stretchiness on different days???

 

[VeganMonkey]

Oh wow I have never seen something like that! Except once on a TV show where someone showed it as rare ability. Didn't know it was EDS at the time. And what about 'velvety skin' what is that?

 

[Allyson]

Oh wow I have never seen something like that! Except once on a TV show where someone showed it as rare ability. Didn't know it was EDS at the time. And what about 'velvety skin' what is that?

veganmonkey, my skin is very soft and smooth - not sure about velvety; a lot of people have said how soft it is but i touched my pilates teachers skin the other day and it was really soft and almost spongy; i think she is hypermobile; i will ask her about it after class next week.
boy the more i look at eds pages the more i realise they have ALL the same issues we do - gerd,, htosensitivity exhaustion etc etc... if it is the same disease along the continuum perhaps we could pool resources - PWME seem to have done more medical searching (thanks everyone) while EDS folk seem to have a bit more cudos with doctors - who like that long French-danish namea nd know that the disease is genetic - but think it is rare - perhaps erroneously..

 

[Allyson]

He just did Diabetes Insipidus too--guess the writers are reading the forum!

Sushi

hope they read this too and keep us with us - it might ultimatley help us - publicity!

Thanks to ahimsa for posting this reference - 2002 and a but clunky to navigate but good basic info on dysautonomias

though FEEDBACK HAS BEEN THAT IT IS A BIT HARD TO UNDERSTAND AND I THINK THAT IS ACCURATE

http://www.ndrf.org/NDRFHandbook.htm

NDRF Handbook for Patients with Dysautonomias

It has a bunch of free PDF files - about 300 pages in all. It looks like this was published in 2002 so there may be some new data since then. But it seems to be a good, basic reference document for anyone who's new to POTS and/or NMH.

Table of Contents:

Foreword
Introduction
Section A - Dysautonomias

The "Automatic" Nervous System​

Dysautonomias​

Tests for Dysautonomias​

Treatments for Dysautonomias​

Section B - Living with Dysautonomias

Living with Dysautonomias​

Caregiving​

Support Groups​

Social Security and Disability​

Children and Dysautonomia​

Glossary

 

[Sushi]

hope they read this too and keep us with us - it might ultimatley help us - publicity!
...

Unfortunately the series finished last year so no more publicity.

Sushi

 

[Allyson]

Unfortunately the series finished last year so no more publicity.

Sushi[/quote

ah shme - them mybe the GOOD WIFE - good series - sometimes gret nd they have some people inwheelchairs etc and the marvellous Michael J Fox from time to time in a great role

 

[Allyson]

A bit off-topic, but I don't want to start a whole new thread on EDS:
The stretchy skin or 'velvety skin' that gets mentioned in many articles on EDS, can someone explain what that exactly is?

and see these many eds fb pages for more on EDS

http://www.facebook.com/media/set/?....262760383801105.60508.230559763687834&type=1

 

[Allyson]

Photo of EDS skin http://adam.about.net/encyclopedia/Ehlers-Danlos-hyperelasticity-of-the-skin.htm
......

An here is a very good page on POTS - sure it has been around but very comprehensive

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

 

[Allyson]

I get the Neo B12 ampules and have read the inner sheet on at least couple of occassions and didnt see that. I guess that just shows just how much my brain is missing. Thanks.

IM B 12 i the thing that has helped my sleep incredibly; I now get to sleep easily ; I ofen still wake at about 4 am for an hour or so but now i almost always get back to sleep and sleep til about 10 am an the sleep is deeper than it has been for years; I do not wake fully refreshed however -as in alive and revived- but still feel better to have had some real deep sleep.

i can only assume this is because B12 boosts blood volume or I have also read it is involved in protein synthesis in the body. WHatever , it works for me and is I believe safe with no side effects that I am aware of.
The other thing I note is that when I am on the IM b12 my polyuria and polydipsia decrease totally - maybe that is one reason too why I sleep better - not getting up to pee so often.

 

[Allyson]

this post in on the EDS page - sound familiar???

Ehlers Danlos Syndrome Awareness Page
This is something people need to be more aware of :
Proprioception is a real issue for us! I open doors smack into my head, I smack my head on the car getting in, I lean to far in and hit my face on doors and walls. I miss stairs all the time. I can not ride an escalator!!! going around corners or from room to room i hit my arms & sides on door frames, and walls/corners.
at work i constantly bust my hip and stomach on the counters. When I'm walking i tend to veer off to the right..a lot. (my walking a straight line is much more of a diagonal line)
I stumble. stumble...stumble...trip over nothing, and I stumble. I get wobbly. On top of Impaired Proprioception my ankles and knees just love to give way out from under me.
At work i know people think I am on something, when i go to reach for some ones card I totally miss.I always drop their cards/money. That is a mixture of misjudging and my fingers not wanting to work.
My kids have a lot of the same issues...so I know I'm not nuts.

 

[VeganMonkey]

I use B12 too and it helps a bit. I was told by my specialist that POTS causes a lot of oxidation and B12 is an antioxidant. It doesn't help with my sleep though. It just gives me 5% or so more energy. Sounds little but it counts!

 

[Allyson]

yes thanks vegan- the doc told me it helps some people with enerygy and not others..... and sadly it does not help me with that

i have not heard form anyone else who it helps for sleep so it is odd but I am fairly definite that is what is helping and i am sticking with it -

it was a cumulative effect too - the longer i take it the better sleep gets - lovely !
who knows, maybe i will eventually catch up on 25 years of bad sleep and start getting more energy too lol

 

[Allyson]

People with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a glue in the body, adding strength and elasticity to connective tissue. 80% of the body is collagen. EDS affects every system in the body.
EDS is a heterogeneous group of heritable connective tissue disorders, characterized by joint hypermobility, skin extensibility and tissue fragility.

Features of EDS

Joints
joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); very early onset of osteoarthritis.
Skin
soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing
Miscellaneous
chronic, early onset, debilitating musculoskeletal pain, arterial/intestinal/uterine fragility or rupture,scleral fragility, poor muscle tone, mitral valve prolapse, and gum disease.

Other Complications
Chronic Pain, Chronic Fatigue, Dysautonomia, Gastrointestinal problems, IBS, Bleeding Problems,
Blood Pressure problems, Organ prolapse, Headaches, Dizziness, Vertigo, Osteoporosis, Osteoarthritis, Chiari,

Problems with EDS seem vague and UN-related. Doctors and patients rarely make the connection that many different complaints are coming from one problem. Many doctors have never heard of EDS and most who have don't understand it, they think it only makes you flexible or gives you strechy skin. Most sufferers go years and even entire lifetimes with no proper diagnosis. It is important to see a geneticist who is educated in conective tissue disorders & Ehlers-Danlos syndrome.

For more information please visit EDNF.ORG


unquote

connective tissue also includes blood, muscle fascia and lymph BTW in addition to what they list here

 

[Allyson]

.

About Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome is a group of genetic collagen defects that affect a very wide array of body systems in a surprisingly wide variety of seemingly unrelated ways, including everything from painful "loose" joints to the GI tract, vascular system, teeth, feet, eyes, mood, insomnia, migraines and sensory processing to name a few. This lends to the challenge of diagnosing the condition as patients end up seeing an equally wide array of doctors and specialists in their sometimes decades long journeys to being diagnosed. Symptoms can vary equally widely in severity and nature of onset, adding to this challenge for both patients and doctors. Some experience just one or two problem joints going out easily or repeatedly at first. Others start experiencing fibromyalgia and widespread joint and muscle pain, weakness and fatigue initially. Many experience migraines and lots of food and drug allergies or sensitivies. Depression and anxiety are quite common and may be organic in origin, as well as secondary. It often comes as a great relief to know there may be just one underlying condition responsible for so many issues in a person's life. We like to say Ehlers-Danlos Syndrome isn't rare, it's just rarely diagnosed.

 

[Allyson]

and a very useful link for type 111 EDS from university of Chile medical school

http://oreds.org/uploads/3/1/5/0/3150381/drbravowhentosuspect.pdf

 

[VeganMonkey]

Are there any pictures of the elephant footprint look on fingers. I thought everybody has that, I checked other people's hands and it looks like that for everybody.

 

[taniaaust1]

IM B 12 i the thing that has helped my sleep incredibly; I now get to sleep easily ; I ofen still wake at about 4 am for an hour or so but now i almost always get back to sleep and sleep til about 10 am an the sleep is deeper than it has been for years; I do not wake fully refreshed however -as in alive and revived- but still feel better to have had some real deep sleep.

i can only assume this is because B12 boosts blood volume or I have also read it is involved in protein synthesis in the body. WHatever , it works for me and is I believe safe with no side effects that I am aware of.
The other thing I note is that when I am on the IM b12 my polyuria and polydipsia decrease totally - maybe that is one reason too why I sleep better - not getting up to pee so often.

The IM hydrox B12 only helped my brain.. it never helped my sleep.

Im now off of that and taking methyl B12 under my tongue instead and that is helping my sleep or something as Im able to actually get up at a decent hour now with that. methyl B12 also helps me in a couple of other ways too.

 

[VeganMonkey]

Here is a picture of the so called elephant foot prints:

http://www.flickr.com/photos/jointhypermobilitysyndrome/8411958905/

I have never seen anyone who doesn't have this. All people have it.

Here is a link to pictures of hyper mobility:

http://www.flickr.com/photos/jointhypermobilitysyndrome/

Looks pretty familiar! I can do all those things, but never thought it was an issue. Actually I thought not being flexible was a sign of ill health haha. People like ballet dances, gymnasts all can do this but it doesn't seem to cause them trouble or to be an illness.