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

My specialist thinks it may all be due in my case to " stretchy veins " in the Ehlers Danlos (EDS) spectrum
so that when i stand up i get inadequate blood to the brain
(yesterday my BP dropped 20 points in a minute when i stood up - from 125 to 105 systolic but then returned to 125 within 5 mins) so adrenaline must have kicked in quickly
this instant adrenaline release happening constantly may be the cause of many ofl our problems
(possibly leading to low Cerebral spinal fluid levels too which exacerbates things further)
maybe a high protein diet helps as it helps build collagen to strengthen the veins
IM Vit B12 increases blood volume so may help because of that
certainly since he suggested this i have been observing my position in relation to symptoms and noticing a definite correlation
eg. resting sitting up does me no good so it is not the resting that helps but the lying down
yes i am ill after being upright- no exertion needed
and i am better after a day or two lying down
and it would explain why we have an energy boost sometimes for no apparent reason...eg in the evenings or early mornig.. after lying down for 6 hours or so all day or night

not wanting to be over simplistic here but would love to know if anyone has researched this aspect of the illness or if anyone else has observed this correlation between posture and symptoms

years of constant adrenaline boom crashes - and resulting in blood sugar boom crashes too - would take its toll on anyone.
It should be easy to test and even predict crashes according to your position... and yes I know for sure that a certain amount of time spent upright ...even sitting up in a chair doing nothing... will cause me to crash, while after about 2 3 days off lying flat my symptoms will improve or even disappear.
Lyng down is the first thig we all do for a crash, and in fact most of us feel we would die if we coujld not lie down but we never mention it in list of effective treatments
so it may not be fatigue we suffer at all
rather need to be horizontal plus acing muscles and joints, headache, swollen tissues of feet and calves due to fluid estravastation and accumilation there...all of which is summed upp erroneoulsy as fatigue. Fatigue is cured by rest and selppe. ME isn't.


I would love to hear everyone’s thoughts on this theory that comes from top ortodox medical sources please.

at a recent EDS conference it seems the list of symptoms closely overlaps ours.so they may be the same disease for at least some of us…and wiki is not reliable on EDS..

cheers
Ally

 

Have you seen Dr. Diana's videos at www.prettyill.com? She has EDS and is trying to find a connection between Multiple Sclerosis, Ehlers-Danlos Syndrome, POTS, Chronic Lyme, CFS, and Fibromyalgia.

 

Allyson,

I have EDs III and OI and symptom patterns as you described from being upright, but, for me anyway, more is going on since I also have some viruses, infections, gut dysbiosis and infections, messed up immune system, messed up HPA etc.

Yes, position matters but I think more is going on. And there are many here who don't have EDs, but are still sick. I kind of see EDs as part of the predisposing genetics for some of us.

And if your doc thinks EDs is at the root, how does he propose to treat it? That seems to be the kicker. We can try to increase collagen but we have some genetic errors. I also inject B12. Did your doc mention the probably "floppy" vein valves in the legs? Just like the floppy heart valves.

Best wishes,
Sushi

P.S. Somehow your post came through in tiny type--almost couldn't read it. Maybe you could edit it and increase the font size?

 

EDS and POTS could well lead to the symptoms of ME. It's definitely something you should investigate, and it could lead to useful treatments for you (there are drugs like midodrine, and specific exercises which can be helpful for POTS and EDS too). Good luck with it.

 

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).

 

I'm currently looking into underlying connective tissue disorders in myself, my immediate & extended family. I do think they can make a person susceptible to ME/CFS, but on their own are not the whole story. Here's a paper (fairly recently updated) on Ehler's Danlos Syndrome (mainly type IV but does refer to other types & other CTDs)

http://www.ncbi.nlm.nih.gov/books/NBK1494/

 

It may well be a risk factor, but many people with ME don't have EDS, so the direct link isn't there.

 

Allyson,

Doctors who work with CFS have been talking about blood pressure abnormalities for years. Here's an old one from Dr Bell.

(quote)
From pain to brain fog
Bell hypothesized at that time that the low blood volume could help account for the prevalence of "orthostatic intolerance" - worsened symptoms, from pain to "brain fog" - among PWCs, because the limited amount of blood would tend to pool in the legs and feet, that common feeling of unbearable gravity and of wearing lead boots, with a corresponding drop in the amount of blood available to the brain. Other researchers' work has added to the evidence that this is a core problem in CFIDS, including reduced cerebral blood flow on SPECT scans, while some, like the Johns Hopkins group, have demonstrated neurally mediated hypotension on tilt-table testing (changes in posture).
(end)

but he is thinking that this is due to constricted blood vessels

(quote)
In fact, the blood vessels in CFIDS seem to be constricted dramatically, and yet attempts to restore normal blood volume (through use of Florinef, salt, saline injections, transfusions) have met with only limited success so far. "All of the body's normal mechanisms to restore blood [when it is lost in other ways] seem to be turned off." It is as if the CFIDS body <wants> to have low blood volume and that its blood vessels want to stay constricted. Bell likens the blood vessels to water pipes that are only half the proper diameter - you simply cannot make a metal pipe hold any more fluid than the pipe is built to carry

and he is also interested in norepinephrine

(quote)
"It could be," Bell said, "that a physiological mishandling of norepinephrine ('norepinephrine transport'), for different reasons in CFIDS than in this exceedingly rare genetic condition, plays a role in both conditions."

http://www.anapsid.org/cnd/diagnosis/oi.html

 

Many thanks all for the interesting replies;


IM Vit B12 increases blood volume
in reply to the query on this Ive never heard that before... do you have a link to this?
this was written in the intruction sheet that came with/inside the Neo B 12 pack;

Regular IM B12 is certainly helping me more than anything else so far...especially for sleep... when sublingual B 12 had no effect at all.

Snow leopard, people may not know they have EDS.
EDS you will know is hard to diagnose ....it took me 25 years to find out i had it
but apparently symptoms often appear at about 12 to 18 years of age

I am indeed about to start on midrodine after a 48 hour halter monitoring
fludrocortisone made me feel bad so I had to stop it
licorice root seems to help me somewhat

I do not dispute the many other symptoms of ME such as infections etc etc etc and i have about 30 symptoms myself but I am asking: could those symptoms be the result of the constant assault on the body of

1. lack of blood to the brain and heart every time you go upright
2. the immediate release of adrenaline when this happens to compensate
3 the resulting blood sugar fluctuations and
4 possible effect on (?decrease in) cerebro spinal fluid

all of the above happening constantly for many years would take its toll on anyoe and cause many complex symptoms.

I would love to know is there anyone for whom lying flat or lying down is NOT important in their treatment

personally, now that D ribose has relieved the constant muscle aches if I lay down for several days I then feel perfectly fine and totally normal for as long as I keep lying down most of the time.

But lying down is always the first thing I have to do when I feel bad, and lying down regularly is really what is meant by pacing, is it not?...resting upright in a chair is of no use to me at all.

In fact i can rarely ever sit up in a chair for more than a few minutes so it is not a rest at all.

So I would like to know has anyoe studied this by things such as lying down and doing exercise as opposed to being upright while exercising or even something as simple as someone staying recumbant for long periods and monitoring how they do symptom-wise in this position.

then perhaps you could time the length of time you can stay upright until symptoms reappear.

For me the interesting is that my symptoms TOTALLY disappear sometimes and so somthing is causing them; standing or sitting up is a constant thing I do that could cause them...... and has anyone tested this.?

Yes I know Dr Cheney and others have posited low blood volume or cardiac insufficiencies as causing the same thing but could it be as simple as defective veins with the same result.

 

Merylg, thanks for the paper reference
My specialist actually thinks I am on the spectrum ot type 3 EDS ...connective tissue rather tha vascular

apparently it goes along with many other symptoms including some of
migraine, asthma, exema, varicose veins, haeimorroids, hay fever, aneurysm and a positive gorlins sign ( ie the ability to touch your ose with your tongue which many of my family can do and we thought it was just a party trick for years

apparently geneticists now studyig EDS have indeed nominated many many complex symptoms that overlap ME as sigs of EDS including multiple gut issues and ,... a new one but yes i have it ... many more lines than normal on the palms of your hands

 

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

 

EDS can present itself with some ME-like symptoms, but it is a different disease. It happens that EDS patients get falsely diagnosed with ME.

Obviously, there will be a small percentage of patients that have both. Having one disease does not make you immune to other diseases.

 

Constricted blood vessels do seem more likely than stretchy/dilated blood vessels. It makes more sense with regards to cold limbs and doctors being unable to find hiding veins to draw blood. That said, I'm also double-jointed (hypermobile) in a lot of joints.

I'm also very interested in norepinephrine. My blood platelet (long term) levels were very low, and taking an NRI (Strattera, one known for increasing BP) has caused a huge improvement in my OI/NMH symptoms, particularly my narrow pulse pressure. Norepinephrine, although produced by the adrenals, also regulates the adrenals to some extent, so norepinephrine problems could be a cause of other adrenal issues (cortisol, DHEA, hormones, etc).

 

There is an apparent link between EDS and mast cell disorders (it is on the prettyill website somewhere). If ME/CFS is nothing more than some undiagnosed Mast Cell Activation Disorder (my hypothesis), then the link between ME/CFS and EDS becomes apparent.

 

Allyson,

Hi, re: exercise lying down: I can do pilates (with weighted pilates machines) lying down with no problem, but not similar exercises sitting or standing.

And midrodrine--good luck with it but also monitor yourself carefully. It was great for me for 2 weeks and then very suddenly I had really alarming side-effects. And I didn't lie down while it was active in me.

Best,
Sushi

 

WOW... yet another theory!! And another label that was slung at me when I was in my 30s and had completely forgotten about! I was the cheerleader in Highschool who did the russian spreads at the end of he cheers and great entertainment during recess being able to touch all of my fingers to the backs of my hands!! Still can do the fingers but no more splits for me!

 

Allyson, your aim is true. I won't generalize a diagnosis on any other patients, but your doctor was probably right. And I think EDS is probably the main factor behind my situation, and many other CFS cases. I have the hypermobile joints and stretchy skin too. It's a case of the elephant sitting in the middle of the living room, and being ignored by everyone. It would be nice if CFS researchers would start with the simple explanations. They usually turn out to be the correct ones.

My mother always had low blood pressure, low energy, sensitivity to smells, unexplained malaise going back many decades (her mother had all of the same symptoms). She asked an ordinary internist about this back in the early 1960s, and he intuitively responded "of course, that's because you have flaccid veins." When she first told me that I thought, what a strange thing for a doctor to say. In retrospect, the doctor's intuition was probably right. They weren't all ignorant back then.

When the blood flow is not channelled properly around the body, the body responds immunologically and neurologically in all kinds of ways. I think that's the open door that allows all these crazy virus reactivations. Probably our blood brain barriers, muscosal barriers are thin and flimsy too. Resulting in cognitive problems, endless gut issues, constant sinus issues and so on. Also, more women than men tend to get this illness, and women are more likely to have hyper-flexibility, -mobility, connective tissue deficits.

Your comment about the continual shocks to the adrenal system, because of the body's panic about not having enough blood, seem especially true. Many folks with CFS like Klonopin or benzodiazopine drugs. I thought it was just because they are palliative drugs, and relieve the symptoms.

Now I wonder if we don't benefit from the relief of adrenal stress; and that's the big reason we tend to like them.

Thanks for your very interesting post.

 

I like what Mish Mash said. I agree that sometimes the most simple and obvious solutions are what is going on. If you read some of the theories on this website....sorry....but they are just absurd. I do think the EDS has some merit, or may lead in a direction that could give you some functioning back, just knowing what's going on and what makes it worse vs. better. I think that for some people, this COULD (but what do I know?) very well be a big issue. I think that not everyone on this website has the same disease, and we should all keep that in mind! Sorry to say, but no researcher grouped the people on this site....some of us will not have the same cause as others. We should all be vigilant to try to figure out if we actually have X, not Y.

My grandmother is actually blue and purple on her arms and legs, under the skin (her skin must be very thin), from bruising so easily; the bruises have just run together. That is an EDS thing, from what I gather. And she is "like me" with fatigue, so I am almost 100% positive she has EDS, but has never been diagnosed (and I don't talk to her, so can't really get her help, it's more of a moot point). Now that I think of it, my great grandmother may have had a little of the same bruising. I don't have that symptom, so far, but I have been told I have the stretchy vein thing by a specialist in dysautonomia. He said that my veins have too much collagen, so they are basically "stretchy," and so my blood doesn't pump up to the brain effectively. The doctor didn't go so far as to diagnose EDS, because he said it's genetic, and the genetic testing wouldn't change the fact that I DID have hypermobility syndrome, so he would treat no matter what. The extra collagen is also why I am super flexible. I would have liked to have the genetic testing, but I guess he wanted to treat no matter what, and not bother with more testing.

That doctor treated with Midodrine, but I couldn't get him to try Florinef before I stopped seeing him. He also preached avoidance of any drugs/substances that can make blood pressure lower, like the Trazodone I was taking for sleep. I think many things can make it worse, there is a list on dysautonomia websites of drugs that could make the condition worse. I personally have noticed that coffee helps me, seeemingly moreso than just a stimulant, so I think it actually helps my blood vessels and helps blood go upwards. A vasoconstrictor. But some with this condition find it makes things worse.

The other thing this doctor preached was strengthening the muscles of the legs. He said that when you have more muscle, especially in the lower half of your body, you will be better off with moving blood upwards.

Anyways.....for me, I think glutathione/B vitamin issues, like what Rich describes, are more of a factor. But, you just simply never know.

 

Oh, the other thing he told me to do, of course, is get enough salt. No salt restriction, etc. And get electrolytes.

 

justy,
hypermobility is classic symtom of EDS ; but i do not have it - hypermobility all. There is a spectrum - some people have all the syumpotms and signs some have a few; i have none except varicose viens and history of feint and migraine in adolescence. But needing to sit with your legs up is interesting; i used to be like that but after 3 years of forced exercise i have deteriorated; but if you crash do you not need to lie flat?
I am chasing up the symptom overlap now; there was a good list circulating on Me cfs forums a while back for ME and my speciallist has just been to and EDS conference and showed me his list of their symptoms and they seemed so similar - such that he thinks it is the same disease - but i do not have hard copy. They were geneticists at te conference apparently looking at EDS in kids but my OI specialist says he is seeing hundreds of patients with similar symptoms...and they are a huge range of symptoms including almost all possible gut issues.