Hypocondriasis Or Valid Concern Regarding Ehlers-Danlos?

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I apologize if this is the wrong forum; I knew not where else this would fit.

The internet is a great tool for finding diseases of which one has many symptoms. Usually, I am able to convince myself that I do not actually have X disorder; with Ehlers-Danlos Syndrome, however, I have been debating my having it or not having it for years.

I appear to have many of the symptoms, but not at the severity that is usually recorded with EDS.

Firstly, I am fairly hypermobile-- the mobility in my fingers alone places me at a least a 4 on the Beighton Scale, I can place my palms on the floor with straightened knees (though it is a bit of a stretch!), and my knees sometimes appear to bend back a bit more than usual. I can "pop" my fingers fairly easily. However, I have never, to my knowledge, dislocated anything, nor am I in chronic pain (though my sensation of pain is a bit...unusual).

Secondly, I have skin that stretches fairly far and that is lacerated and bruised easily; I also have a few scars that have an unusual "spread-out" appearance. My skin heals a bit slower than normal, though it does heal, and I am certainly not covered in bruises, though I always seem to have at least one bruise at any given time. I managed to bruise my side pretty severally from a week of using a messenger bag to carry my school books. None of this, however, has ever caused me enough trouble to be of medical concern.

I do not know if my skin is necessarily "thin," but I can see some of my veins fairly easily. I can also see the veins in my chest, which I have read can be indicative of EDS.

I have also had a few other skin and growth conditions; I had a cyst on my toe that I removed at age ten, and I had a bone spur growing out of my arm that was detected at age five and that continued to grow until age 14, when I had it removed (the doctors did some testing on it; I cannot locate the original paperwork, but it appeared to be a regular, benign bone growth). Continuing on the "random symptoms" tangent, my hands and feet are prone to getting extremely cold, and I sometimes feel "bubbles" in my lungs when I breathe.

There is also the speculated and often reported correlation between EDS and Asperger's Syndrome (though psychology still isn't sure in my case, the doctors are becoming increasingly convinced that I am somewhere "on the spectrum").

What concerns me most is my general "weakness." I run out of breath fairly easily-- I always have --and my chest sometimes aches if I exercise too hard or even eat too much at one time. I sleep about 10 hours a night and very seldom ever feel fully refreshed. Though I would not exactly say I have hypertonia, I never did have great muscle mass. I have had blood work done to test for any nutritional deficiencies or hormonal imbalances, but nothing came up.

It would appear that my theoretical case of EDS would be extremely mild; I have read, however, that it is usually degenerative, and it seems wise to be aware of a degenerative disease at its earlier stages. Am I just being anxious and stringing together a bunch of random symptoms, or do I have a valid reason for concern? If I do have a valid cause for concern, how do I raise the issue with my parents (I am still dependent on them)? If I am just being anxious, then how do I quit worrying so much (willingly ignoring the fact that aspies and worrying often go hand in hand)? I am very tempted to get tested for EDS just to clear the thought from my mind, but said testing could cost me thousands of dollars.

Hmm, I never heard of that one before, but from what you say think it is worth testing for. The main obstacle being money apparently, I would ask if you have really investigated all possiblities as far as getiing it covered in any way (medical plan). Not sure where you are from, but if in USA, Obamacare has just started and might be something to look into. Also contact the places that do it to see if they have any suggestions.

Currently there is no way of distinguishing Hypermobility Syndrome from Ehlers-Danlos Syndrome Type III (Hypermobility Type) as there is no blood test for the condition. A lot of experts think that there is a spectrum of hypermobility conditions with severe collagen defects on one end, through moderate collagen defects and mild localised hypermobility at the other end caused by things like hypotonia, unusual bone structure etc. Mild hypermobility is common in the general population and is not considered a disorder. Hypermobility Syndrome is diagnosed when there is hypermobility along with pain symptoms. EDS is generally diagnosed when symptoms become very severe. I have several friends who have an EDS diagnosis and they are all wheelchair users, tube-fed and not capable of holding down a full-time job.

I have Hypermobility Syndrome which is near enough to the EDS boundary that one of the rheumatologists I visited considered it EDS and the other considered it HMS. I am hypermobile at all my joints apart from four finger joints (9/9 Beighton score plus extras). I have had many long periods of chronic pain and a lot of time out from education. I'm lucky enough not to dislocate much but several other members of my family either have or used to have frequent dislocations.

So you may well be somewhere on the mild end of the 'EDS spectrum', but you are only likely to be able to get a medical diagnosis if this is causing you pain or other difficulties in your life. As far as degeneration goes, it is true that having hypermobility can set you up for problems later in life, but this is a problem which can be avoided by keeping fit. Developing strong muscles to support your flexible joints will help stabilise them and prevent problems from occurring. Low impact exercise is best, e.g. pilates, swimming, cycling. In your situation, it's not something to start panicking about, but getting some gentle exercise is most likely a good idea. High-impact exercise like running is not good because it puts too much stress on hypermobile joints which are prone to injury and sports involving twisting in confined spaces are not good, e.g. rugby.

I'm not sure about the 'general weakness' issue you mention, but maybe exercise could help with that too. Raynaud's Syndrome (cold hands and feet) is definitely correlated with hypermobility and can be treated separately but generally isn't treated with drugs unless you are at risk of developing gangrene. Not sure about the breathing issues but they can mostly likely be diagnosed and treated separately even if they are correlated with EDS/HMS. There definitely seems to be some correlation between hypermobility and neurodevelopmental conditions like AS, but there hasn't been enough research on this to say anything really conclusive and the correlation isn't so strong that if you have one then you have the other.

As I see Hemulen already mentioned in much more detail, severe hypermobility syndrome is considered the same as (mild) EDS, because even though they are different conditions they present almost identically and the treatment is the same.
EDS can be indicated by the absence of frenulums - specifically the string under your tongue and under your top lip, so if you're worried it might be EDS you could check that.

Thank you all for your very helpful input.

I am under the impression that my insurance plan is one of the most basic insurance plans the company offers (it doesn't even cover my psychologist), but I will admit that I have not thoroughly looked into it.
I am from the USA, but we already have private insurance, and I highly doubt that my father would be willing to switch to Obamacare anytime soon.


Hemulen,
Thank you so much for all of your input! Your post was extremely insightful.



I agree and will keep this in mind.




My frenulums definitely exist and are in tact.

I'm not sure how valid the frenulum-check is for EDS, just so you know.
If you aren't in pain or have damaged joints then the hypermobility isn't an issue for you now, though you should be careful with what sports you practice so it won't be.
Weakness, chest pain, cold extremities and shortness of breath is often a sign of heart problems, but the cause could be anything really - from not so scary to the very worrying.
You could theoretically not have a nutrition deficiency but still not eat enough carbohydrates to have enough energy for everything to work properly. You shouldn't go out of your way to exercise until you know what the problem is.
You should mention this to a doctor.

Muscles only do so much. It's true that they help to stabilize, but they do not prevent problems fully.
Pilates, yoga and anything that involves stretching is a terrible idea if you're hypermobile.
What do you do when HMS has crippled you enough that you can't exercise anymore?

I do like your other advice and information etc, but this makes hypermobility seem trivial. The amount the OP describes is not at HMS proportions, but still.

I'm sorry, I'm really not trying to trivialise her concerns and I'm sorry if it seemed that way.

I know that muscles don't fully prevent problems, but it can really improve the symptoms if you have strong muscles. The only way my brother has managed to stop his knees dislocating is by developing the muscles of a body-builder in his legs (which was an endeavour which met with many setbacks and no it still hasn't completely solved the problem).

Pilates was recommended to me by various physiotherapists. Obviously if you're having problems then you're going to need a personalised program but pilates is very good because it mostly involves gentle strengthening and improves core stability. I have been in a position where this kind of exercise would not have been possible. If your 'HMS has crippled you enough that you can't exercise any more', then you probably need specialist physio as a starting point. But if you are hypermobile and not having problems then pilates is good. I agree that yoga is bad idea because of the contortions required.

I can see how it might sound like I'm just telling everyone with HMS that their problems will go away if they just exercise, but I'm not. Still, exercise is the recommended treatment by doctors for this condition. If you're experiencing HMS-related problems then you should seek medical advice before starting any exercise. I am speaking from experience and I am only trying to help. I am a bit hurt by your post, Anomiel.

All aspects of pilates that do not include increasing flexibility then (all people that think it's healthy would be horrified if they got what they wished for). It is just too important to leave out.
I dislike the implication that if someone still gets hurt, it is because they don't have strong enough muscles. HMS is not a failure of the muscles in the first place, as I'm sure you know. Especially if you're a woman, as hormones (relaxin) really f**k things up by increasing flexibility - that's why athletes who are women have career-ending injuries more often than men, even though their job is to have strong muscles. But yes, they help somewhat.
Sorry that you got hurt, but I still think it's important to be careful with your wording there.
And all specialist physio in the world wont fix what's already destroyed.

I wasn't trying to imply that it's anyone's fault for getting hurt through not having strong enough muscles. But I stick by the fact that it is helpful. And granted, for some people it's not going to fix things but I wasn't talking about that. You are reading things into my posts that I have not put in there. I am giving advice to one person, the OP, who doesn't have severe problems.

I only corrected you in that it does not prevent degeneration or problems. It doesn't matter if your advice is only for the OP if you are talking about hypermobility in general. So now the problem is solved, as you said it doesn't, and then I presented my perspective of it with some additional information - for the OP too