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

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Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Stiff Zebras - Someone has started a new group called Stiff Zebras - Ehlers-Danlos Syndrome stiff joints and muscles not Hyprmobile - for those with EDS 3 who re NOT Hypermobile at all but rather are very stiff - yes we are out there - please add anyone or share this link or tell them about us thanks.

here is the link. Also those who are BOTH HM and Stiff are most welcome too - (BTW here has been a huge response to this post so far with a trillion likes and comments so it is obviously a common issue)https://www.facebook.com/groups/455374384560623/

and as many are querying if you can have EDS without being HM - yes you can and here is a link with more EDS symptoms
http://forum.notcrazy.net/index.php?topic=9571.0

So far they have a list of 5 docs who say you do NOT have to be HM To have EDS - including Brad Tinkle

Ally
 
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stayhealthy4

Messages
9
taniaaust1 said:
I personally think that it is very important for EVERYONE who has ME/CFS to work out how much orthostatic intollerence they have (if you have it or not).. and how much it is playing a part in their symptoms (as at least the OI side of things can often be treated).

Most of us find we have a OI component to the illness on top of the rest of the ME. One needs to know if one is crashing due to OI or crashing due to ME/CFS or one just wont know how to be dealing well and making the changes they need to make to adapt for best illness management. eg resting laying down instead of resting sitting. There is more to this whole illness then just pacing but you need to also know how you should be resting!!

I like you.. can crash from the OI side of things. What you may not be aware of.. crashing due to OI also Ive found places more stress on my body so also then at times can lead to a delayed ME crash (the next day). It took me 5 years of OI issues to see OI too lead to next day ME crash. To which many may blame their physical activity for it when it rather may of been that you were upright for too long at one point and hence caused OI which then placed strain on your body causing ME crash the next day. For me.. I have to pay as much consideration to the OI and how long I are upright in a day as I do to how much physical activity I do (I try to look at the OI separately as well).

Those with ME need to learn what is being caused by OI and what is being caused by the rest of the issues ME does. I'd like to see OI tilt table testing for the various OI issues as being a necessarily part of ME testing. Its sad to see so many dealing with OI and not realising it and hence it not being in part of their own ME management plan and not being treated..with it making this whole illness worst.

You may want to consider meds or other things to help raise low blood volume (and hence hopefully remove the need to be laying as much as you need to do now.

Note.. if you have one type of dysautonomia.. you may be more likely to have also other of the dysautonomias which you may not be currently aware of. (I have all the dysautonomias ME patients get). You may also end up finding out you have also something like POTS.


Ive never heard that before... do you have a link to this?



High adrenaline (nor adrenaline) is a problem for me (note there are tests for this).. It quite possibly may be a body adaptation thing to this illness eg (in my case trying to make my heart work faster to get more blood to my brain when Im upright) ...but on the other hand having high adrenaline and it suddenly spiking does also give one symptoms eg in my own case its been responsible for sudden anxiety attacks, hyperadrenalinic POTS, orthostatic hypertension.. and stuff like nausea (I feel sick in my guts when my adrenaline has gone up very high). Im currently taking clonidine to stop adrenaline spiking so high and try to balance my going high and low BP. Fortunately taking this hasnt made me any worst and I havent seen a high BP spike since ive been taking it (a very small dose).

* I personally do think there is some link between EDS and ME/CFS.... a genetic predisposition one.. maybe the same gene predisposes one to ME/CFS . I assume I may carry a EDS gene thou I dont have EDS as my daughter could get a diagnoses for EDS if she went to someone for a EDS diagnoses as she meets diagnostic criteria (she hasnt got ME thou).
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I was diagnosed with brainstem compression -Chiari 1 in 2006 and Fibro in 2007 and eds in 2008, and now 2013 just had Mayo testing and they say orth inance? 2006-2008 was horrendous, with dizzy, pain, blurry vision, almost passing out, fatigue and about 30 more symptoms. I started on flexeril, hydrocodone, and gabapentin and P/t which help a little, and basically adjusted my life to doing "nothing" no work, no household chores, a lot of laying down. I did have low ferritin and iron(anemia) and took me 2 years on iron to get those back to normal range. My doctor I had then, refused to test me for Vit D defiency when I asked her that I thought I had it. So, I went to another doc, who tested me and yes,! I did have it. I take Vit d and feel much better taking it, getting that back up to normal levels. From 2009 to 2012 I pretty much "adapted" to my life, and was in pain and fatigued a lot, but used to it. but then in 2012 Ihad an injury(concussion to my head/neck) Could this have caused my symptoms to worsen? Since the accident, My adrenaline is out of control(starts with abdominal pain, feeling hot/cold, sweaty, clammy, tremors/shaking, anxiety/terror. My blood pressure has been crashing a lot, twice a week to 70/40, before the accident, it only happend once or twice a year. My pain and fatigue has increased(just shaing someone's hand is enough to make me cry, or if my dog steps on my foot) I have NO doctor for eds, or any of my issues. The doctor who diganosed me with eds in 2008 referred me to come back to my State and see a PCP. That did not work, I cant find any doctor who even knows these issues. I dont know how I found Mayo, must have googled my symptoms, but at least, maybe they can help point me to help. No one helped me with fibro either, I think tho, I have cfs, from reading info at this web . I also got diagnosed in 2009 with diabetes 2. My mom was diagnosed with orthostatic intolerance, diabetes, I think she also has the eds if I do, and cfs. Her bp went down to 60/40 and she had to go to ER intensive care for 4 days. and get 3 bags of blood and 3 fluid, And of course her diabetes went nuts/out of control. Does this run ion families/hereditary? worried about my 2 kids. Anyone that has tips/help for me? how to deal with eds/cfs symptpoms. I am at my wits end.I just want to be as healthy as normal as what I can be. I want my life back.
 
A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
stayhealthy4 said:
I was diagnosed with brainstem compression -Chiari 1 in 2006 and Fibro in 2007 and eds in 2008, and now 2013 just had Mayo testing and they say orth inance? 2006-2008 was horrendous, with dizzy, pain, blurry vision, almost passing out, fatigue and about 30 more symptoms. I started on flexeril, hydrocodone, and gabapentin and P/t which help a little, and basically adjusted my life to doing "nothing" no work, no household chores, a lot of laying down. I did have low ferritin and iron(anemia) and took me 2 years on iron to get those back to normal range. My doctor I had then, refused to test me for Vit D defiency when I asked her that I thought I had it. So, I went to another doc, who tested me and yes,! I did have it. I take Vit d and feel much better taking it, getting that back up to normal levels. From 2009 to 2012 I pretty much "adapted" to my life, and was in pain and fatigued a lot, but used to it. but then in 2012 Ihad an injury(concussion to my head/neck) Could this have caused my symptoms to worsen? Since the accident, My adrenaline is out of control(starts with abdominal pain, feeling hot/cold, sweaty, clammy, tremors/shaking, anxiety/terror. My blood pressure has been crashing a lot, twice a week to 70/40, before the accident, it only happend once or twice a year. My pain and fatigue has increased(just shaing someone's hand is enough to make me cry, or if my dog steps on my foot) I have NO doctor for eds, or any of my issues. The doctor who diganosed me with eds in 2008 referred me to come back to my State and see a PCP. That did not work, I cant find any doctor who even knows these issues. I dont know how I found Mayo, must have googled my symptoms, but at least, maybe they can help point me to help. No one helped me with fibro either, I think tho, I have cfs, from reading info at this web . I also got diagnosed in 2009 with diabetes 2. My mom was diagnosed with orthostatic intolerance, diabetes, I think she also has the eds if I do, and cfs. Her bp went down to 60/40 and she had to go to ER intensive care for 4 days. and get 3 bags of blood and 3 fluid, And of course her diabetes went nuts/out of control. Does this run ion families/hereditary? worried about my 2 kids. Anyone that has tips/help for me? how to deal with eds/cfs symptpoms. I am at my wits end.I just want to be as healthy as normal as what I can be. I want my life back.
Click to expand...

yes EDS is definitely genetic.

There are some ti to cope here in this thread

and there are pages on FB for Chiari too

http://forum.notcrazy.net/index.php?topic=9571.0

start with coconut water to rehydrate, or salt and potassium and IM b 12 SHOTS is my advice

best of luck

ALly
 
S

stayhealthy4

Messages
9
Allyson said:
yes EDS is definitely genetic.

There are some ti to cope here in this thread

and there are pages on FB for Chiari too

http://forum.notcrazy.net/index.php?topic=9571.0

start with coconut water to rehydrate, or salt and potassium and IM b 12 SHOTS is my advice

best of luck

ALly
Click to expand...
thank you, I will try the coconut water this week, I know Mayo mentioned salt, but has not gotten my follow up app yet, with them for all the info /my trreatment plan. Is the b12 something I ask the doctor for? and does Physical Therapy/exercsise help? I do abosolutely no exercise. but I noticed when I was in Phys Therapy for a few months and they had me go 2-3 times a week, I felt better than I normally do. but when I stopped P/T the low bp, and low sugar/high sugar, adrenline spikes , passing out, and more pain and fatigue started back worse.
 
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Valentijn

Senior Member
Messages
15,786
Allyson said:
you do not need to be Hypemobile to have EDS but here is the Beighton's score for those who want to see if they are HM at all

http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Diagnosis.aspx
Click to expand...
I score 7 out of 9 (maybe 9/9, but not sure about my elbows).

When I was a kid I used to bend my pinkies all the way back to touch my forearm to freak out my friends, though now they won't go quite as far, but still far enough. I can still put my hands flat on the floor when standing with straight legs. I also discovered I can bend my thumbs to touch my forearms, though it's a bit uncomfortable (I get a lot of swelling around my forearms since I came down with ME) - it never occurred to me try that before.

My knees both bend backwards, which took me by surprise ... I thought they were normal until I had one leg braced straight out on a wall, and my fiance was a bit shocked to see my leg curving the wrong way :confused: I'm not sure about my elbows - I would have said "no" but they seem to bend as far as my knees do, so maybe there's some curve if I brace my hand against something, when someone looks from the proper perspective.

I can also bend over double while sitting down, so my chest is basically on the ground.

I did have some OI symptoms prior to getting ME/CFS, but it was pretty intermittent, much milder, and of short duration. Definitely two different diseases, though EDS certainly could have made me more susceptible to ME/CFS, or is magnifying the symptoms of it.
 
A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Not sure what evidence you use to conclude they are "definitely two different diseases??"

A score of over 5 indicates definite hypermobility syndrome, which is now said to be synonymous with EDS.

OI symptoms and many other symptoms and signs of EDS do not show up until later in life.

Most EDS symptoms are identical to those listed for ME //fibro so how one distinguishes what I s causeing which is not evident.



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Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Brad tinkle's book on eds says that the Beighton score to gauge your hypermobility should be adjusted from childhood to adulthood because we all (and especially zebras) stiffen with age due to general aging and damage from loose joints

In general it is said you need to score at least 5 on the Beighton scale but for adults that number could be lowered and still meet diagnostic criteria

Nowadays many are Dx wih EDS with a score of 0 if they still have other symptoms and family history too.


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