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

Messages
445
Location
Georgia
Have you ever been sitting at the table, having lunch or dinner with a friend. And you hear a constant cracking and popping every time he/she opens her mouth. All you can think is: "for the love of God, will you please stop making that noise!" How many folks with diagnosed ME/CFS have some form of TMJ or jaw irritation issue? I'm betting, again, it is another connective tissue weakness. It is pretty common among our group.

Oral Surg Oral Med Oral Pathol. 1991 Nov;72(5):514-9.
Temporomandibular joint dysfunction syndrome: a close association with systemic joint laxity (the hypermobile joint syndrome)

Buckingham RB, Braun T, Harinstein DA, Oral K, Bauman D, Bartynski W, Killian PJ, Bidula LP.
Source

Western Pennsylvania Hospital.

Abstract

Sixty-two patients admitted for elective reconstructive surgery of the temporomandibular joint (TMJ) and eight seen as outpatients with a chief complaint of TMJ dysfunction during the same time interval were evaluated for possible etiologic factors contributing to the disease. All hospitalized patients had severe, end-stage degenerative changes within the TMJ, whereas outpatients had less severe disease and did not require surgery. TMJ dysfunction in some patients was said to be a result of established causes including bruxism, malocclusion, and trauma. No patient in this series had evidence of a systemic inflammatory polyarthritis. Of the 70 patients, 38 (54%) met criteria, based on those of Carter and Wilkinson, as modified by Beighton et al., sufficient to warrant a diagnosis of the hypermobile joint syndrome.

Five patients had classic Ehlers-Danlos syndrome and therefore were not patients with "benign hypermobility," and an additional two cases were described as "marfanoid" and as possible Ehlers-Danlos syndrome, respectively. Radiographs showed TMJ hyperextensibility in four hypermobile patients. Long-term surgical outcome was identical in the hypermobile and nonhypermobile groups. The incidence of hypermobility in this series is strikingly higher than the expected incidence in an otherwise population. Magnetic resonance images of the TMJs on separate groups of asymptomatic normal and hypermobile women identified excessive anterior movement in the hypermobile group, together with abnormal anterior disk position in some. We hypothesize that hypermobility within the TMJ may cause accelerated disk destruction and degenerative disease.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I have no idea if I have EDS but I can touch my nose with my tongue.

Thanks, Sherrie,

that is almost the defining feature of EDS type 3 - Gorlin's sign positive - ie being able to touch your nose with your tongue. !!!

Not sure if it means 100 per cent you have it but it was the very first thing the prof asked me and the fact that my mother can do it was seen as very important in the diagnosis.

Until we have genetic testing these small signs are all we can go on.

As someone pointed out to me in a PM, so many people here are saying .. It doesn't apply to me .....BUT I am bendy or have stretchy soft skin or I can touch my nose to tongue etc....

Maybe it does apply to a lot of us at least and the more of us that recognise it and give it some serious thought ....the sooner we will get a push for a genetic test, recognition and treatment.
Please can I ask people to consider it it DOES maybe apply to them.. as it explains so many things about our illness that nothing else does.

Thanks again so much, Sherrie and everyone, for the valuable feedback....please keep 'em coming guys!
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Have you ever been sitting at the table, having lunch or dinner with a friend. And you hear a constant cracking and popping every time he/she opens her mouth. All you can think is: "for the love of God, will you please stop making that noise!" How many folks with diagnosed ME/CFS have some form of TMJ or jaw irritation issue? I'm betting, again, it is another connective tissue weakness. It is pretty common among our group.

Oral Surg Oral Med Oral Pathol. 1991 Nov;72(5):514-9.
Temporomandibular joint dysfunction syndrome: a close association with systemic joint laxity (the hypermobile joint syndrome)

Buckingham RB, Braun T, Harinstein DA, Oral K, Bauman D, Bartynski W, Killian PJ, Bidula LP.
Source

Western Pennsylvania Hospital.

Abstract

thanks Mish mash.

Yes I have a bad bilateral TMJ though my jaw does not make any noise
It is just very painful ... especially if I have been talking for any length of time
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
This is a good tip to share. I always put something in between the laptop and my lap so that my lap does not get too hot. Right now I'm using a hardback book that's about the same size as the bottom of the laptop. I keep thinking maybe I should get a padded lap desk (see http://www.lapdesk.com/ OR http://gifts.barnesandnoble.com/u/Lap-Desks-Lapdesks/379000575/ ) but the book is working pretty well and it's free. :)

Yes, I do the same thing. As you say, doing it before you get too hot is the key. I wear a tank top or t-shirt when I'm inside the house, even in the winter, and just add or remove a light jacket or sweater (zip up is easiest, pullovers are a pain).

Also, taking off both shoes and socks after coming into the house is another way to keep cool -- bare feet on a cold floor really helps. Taking off and putting on layers is pretty essential for me.

Thanks Ahimsa,

yes I am astounded by the amount of heat form the laptop,
Even on a thick foam cushion I can feel the heat on my body after a time and that heat toyou abdomeem is likely really bad for expanding the veins even more.

Another thing I do when I notice I am starting to heat up is drink a big glass of cold water... kills two birds I hope and cools you back down quickly ...and from the inside where it seems to count
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
[quote

Oral Surg Oral Med Oral Pathol. 1991 Nov;72(5):514-9.
Temporomandibular joint dysfunction syndrome: a close association with systemic joint laxity (the hypermobile joint syndrome)

[/quote]

And yes Mishmash, TMJ is up there on most list of symptoms for ME. ...until now it was a mystery as to why....mystery solved.

Thanks indeed. Wonderful.
Ally
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I have no idea if I have EDS but I can touch my nose with my tongue. I just wanted to add to the hormonal changes etc

When I was first really sick with ME/CFS, I think I had it mildly since having glandular fever 20 years ago but I didn't get really sick until bringing it out whilst on a health kick, dieting, doing weights etc

And I wonder, Sherrie, did that health kick involve giving up coffee and switching to water as a main drink , perhaps? thus removing a stimulant that may have bene masking symptoms?

Cheers,
Ally
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I forgot to add ;"Social phobias" is another symtom of EDS

In my case I have always disliked going to parties and never known why

Now I know why: they usually involve standing for a long time in a crowded, hot space with lots of people and lots of adrenaline.. plus alcohol... the great vasodilator.
And all that talking is hard on the jaw muscles ( thanks Mish Mash).

Throw in hyperacousia and photophobia from the adrenalin (which is being punped out to keep the blood going to your brain and heart while you stand) and it is not my idea of a good time.

I know "mall syndrome is listed as a common ME symptom.. and shopping centres have a lot of the same issues ....plus bright lights.

Any one else noticed this kind of issue?
 
Messages
62
Location
Adelaide
And I wonder, Sherrie, did that health kick involve giving up coffee and switching to water as a main drink , perhaps? thus removing a stimulant that may have bene masking symptoms?

Cheers,
Ally

No I didn't give up coffee, I did drink 1-2 cups plus decaff but I did give up my1-2 ltr coke (cola) habit. However I did switch fully to decaff during my pregnancy and continued caffeine free until after I relapsed. It wasn't until after trying the supplement regime by Dr Sarah Myhill that I introduced coffee back, she recommends coffee to help recycle ATP. I was also a smoker until maybe 1-2 years before the health kick when I gave up.
 
Messages
62
Location
Adelaide
I forgot to add ;"Social phobias" is another symtom of EDS

In my case I have always disliked going to parties and never known why

Now I know why: they usually involve standing for a long time in a crowded, hot space with lots of people and lots of adrenaline.. plus alcohol... the great vasodilator.
And all that talking is hard on the jaw muscles ( thanks Mish Mash).

Throw in hyperacousia and photophobia from the adrenalin (which is being punped out to keep the blood going to your brain and heart while you stand) and it is not my idea of a good time.

I know "mall syndrome is listed as a common ME symptom.. and shopping centres have a lot of the same issues ....plus bright lights.

Any one else noticed this kind of issue?

Yes, I put it down to having trouble processing all the information that's going on around us, various noises, movements etc
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Yes, I put it down to having trouble processing all the information that's going on around us, various noises, movements etc

Yes hey thanks Sherrie, interesting; and there is now another - concrete and physical - explanation for it
ie lack of blood supply to the brain (and heart and peripheries) makes it hard to process anything ... we go into emergency survival mode.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
No I didn't give up coffee, I did drink 1-2 cups plus decaff but I did give up my1-2 ltr coke (cola) habit.


H
Hey Sherrie, thanks.

Yes the C ( unnameable brand of COLA) word is another stimulant , just like coffee you will know it contains lots of caffeine...and a sugar hit to boost.

So that could expalin why your symptoms came on then when you stopped it.... they had been masked previously by an all-day-long caffeine intake....exactly as was the case with me.

In fact I started to notice after that that anytime I felt a bit of enegy and did something like garden or clean I would look back and realise that just before that I had had strong tea or coffee or dark chocolate.

And the energy would last for a while then just stop .... as the caffeine wore off.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Interesting thread - my daughter who has an M.E type illness is hypermobile in many joints - i just am in my toes and my youngest daughter can touch her tongue to her nose!

On the other hand, as long as i am sitting in a comfy chair, i feel better from resting - i dont need to be laying flat. Having said that i have ALWAYS sat with my legs up on the chair or sofa next to me - i hate sitting with feet straight down - have been like that all my life. I also had a patent ductus arteriosis as a child - which i had tied age 6 - which is more common in connective tissue disorders. But i also dont really seem to have OI.

Allyson - do you have a link to the many symptoms that you talk about above as overlapping with M.E - i have read the wiki on EDS - but it didnt sound like me. Me and my daughter have a strong immune component in our illness that i wasnt aware was an issue in EDS or other CTD - perhaps i am wrong on this.

All the best, Justy x

Hi Justy,

I am still looking out for the symptom list for EDS. But I do know the wikki page is woefully inadequate now in light of recent research and is not to be trusted really.
If it is the connective tissue in the entire body that is affective it seems really a logical explanation to me.. that is going to affect all systems; and when the blood supply to the entire body is compromised on top of that ( as the collagen in the blood vessels is ineffective) I really think this is the best match for something that will explain the complex and multifacted nature of our symptoms. Throw in adrenalin surges on to of that and it is a recipe for the disater we call home!
 
Messages
62
Location
Adelaide
Yes hey thanks Sherrie, interesting; and there is now another - concrete and physical - explanation for it
ie lack of blood supply to the brain (and heart and peripheries) makes it hard to process anything ... we go into emergency survival mode.

My spect scan in the Kwiatek study that's not published yet showed reduced blood flow in the brain.
 
Messages
62
Location
Adelaide
Hey Sherrie, thanks.

Yes the C ( unnameable brand of COLA) word is another stimulant , just like coffee you will know it contains lots of caffeine...and a sugar hit to boost.

So that could expalin why your symptoms came on then when you stopped it.... they had been masked previously by an all-day-long caffeine intake....exactly as was the case with me.

In fact I started to notice after that that anytime I felt a bit of enegy and did something like garden or clean I would look back and realise that just before that I had had strong tea or coffee or dark chocolate.

And the energy would last for a while then just stop .... as the caffeine wore off.

I don't feel like they give me energy, sometimes my 85% choc and coffee which I have every morning makes me dizzy.

After I had my daughter my symptoms had gone for 3 years before they started slowly coming back and I was caffeine free that entire time.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I don't feel like they give me energy, sometimes my 85% choc and coffee which I have every morning makes me dizzy.

After I had my daughter my symptoms had gone for 3 years before they started slowly coming back and I was caffeine free that entire time.

Hey Sherrie, and yet they are know stimulants.
Last night I saw a program on skin. The collagen in skin decreasee in quality as we age... for everyone. This could be reason why our symptoms do not show so much when we are younger.... as we age the collagen in our blood vessels deteriorates and so symptoms worsen. Throw in some assaults on it like air travel depressuraisation and think that we could be also masking early symptoms with caffeine use and I htink it is a pretty coherent argument.
 
Messages
2
Just a curiosity worth a mention: teenage girl with ME: then got EBV hepatitis; post-EBV: had marked varicose veins in one leg i.e. Acute Unilateral Varocose Veins Post EBV - Dr John L Whiting
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Just a curiosity worth a mention: teenage girl with ME: then got EBV hepatitis; post-EBV: had marked varicose veins in one leg i.e. Acute Unilateral Varocose Veins Post EBV - Dr John L Whiting

Hi Thanks for that John; interesting. It is amazing how many people are relaizing they have some signs of connective tissue disorder... hope this may be the answer wea are looking for.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Btw John, yes my varicose veins are only in my left leg.

But I have spider viens in both and easy bruising and petechiai

do not know if varicose veins are usually bilateral... does anyone?
Thanks
 

AFCFS

Senior Member
Messages
312
Location
NC
Yes I have a bad bilateral TMJ though my jaw does not make any noise
It is just very painful ... especially if I have been talking for any length of time
I have had this; it first manifested as ear pain and thought I had an ear infection. I think mine may have been caused by getting used to an oral appliance for sleep apnea, which draws the jaw forward.There are a bunch of videos on YouTube to help out with this. I found the fist one informative an the second one, though not a high video quality, very helpful.


 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
My spect scan in the Kwiatek study that's not published yet showed reduced blood flow in the brain.

Hi Sherrie, I'll be travelling to Adelaide to be a part of this study in Feb 2013. How did you get your results? I thought dr Kwiatek said that we wouldn't get individual results. Very pleased if I can