Chronic Fatigue/Ehler's Danlos Syndrome

[Mike432]

My son (14 yr old) has been diagnosed with CFS and ADS. His muscles are very soft and he suffers through periods of extreme fatigue upon exertions. The doctor who diagnosed him seemed to think CFS is the primary cause. He did, however, cite ADS as his primary condition in a letter he provided to the family. I'm curious which condition is the cause of my son's fatigue and what if any genetic relationship there is between the two conditions? Also, and if you know, would use of any medications and/or steriods serve to strengthen his body?

[jawsUK]

Hello Mike

I live in England, UK, am 45 yrs old and both a CFS and EDS sufferer (I am not sure what you mean by ADS - especially as you typed it twice - is this a double typing error or a condition I have not heard of?!)

I have suffered from CFS since 1990, and had the same very recognisable symptoms for all those years.  I still get it from time to time (like today - brain fog etc!) but the EDS symptoms are more prevalent now.

Basically, my symptoms suddenly started changing around 5 yrs ago, and I was not sure what was happening to me.  My CFS symptoms had been so familiar to me over the years, that new pains such as those in the joints were a bit of a shock - I could not understand why something different seemed to be taking over.

It took a lot of research on my part to find out what was wrong (I am 9/9 on the Beighton Hypermobility scale, but never considered there was anything wrong with me - just that I was very flexible!)  To cut a very very long story short, after numerous disc herniations, TMJ problems, excruciating foot pain, joint pain, fainting spells etc I worked out what was wrong, got a referral to Professor Rodney Grahame in London (one of the world's leading experts) and got a diagnosis.  I am classed as EDS Hypermobility type (formerly known as EDS type III).

When you say your son has Ehler's Danlos Dyndrome, which type does he have?  There are several different types, the most benign of which (although no less painful!) being considered to be the Hypermobility type.  The most serious is the vascular type, which is extremely rare (but I have a relative being tested for it at the moment actually).

For the purposes of this answer, I will assume your son suffers in the same way that I do (HEDS).  Hypermobility Type EDS (Type III) is considered by most in the medical profession to be equivalent to a condition known as 'Joint Hypermobility Syndrome'.  When I say 'most in the medical profession', you will be lucky to find anyone who can call themselves an expert in this field - there are very few.  Ehlers Danlos often goes unrecognised which is sad.  One reason for this is that medical students (in England anyway) are trained to look for REDUCED movement at joints as a cause of pain and not INCREASED movement.  (This clearly needs to be addressed in the future!)

In the UK we are more advanced than other countries when it comes to research and expertise on these particular genetic disorders, so might I suggest you check out the websites of both the HMSA and the Ehlers Danlos Support Group (both based in England).  I have just returned from a weekend conference, which was most interesting (and 2 of the world's top Professors  - Prof Grahame and Prof Bird contributed).  If you check out the message boards, you will be able to chat to us all and ask more questions.

Now, back to your son.  I find that the exercise/activity related fatigue is directly related to my CFS.  I can almost time it without a watch that my flu like symptoms will appear 24 hrs after exercise.  I can find no such link with the intermittent fatigue I get from the EDS, although I notice that my suffering with the EDS is somewhat affected by hormones.

I am not able to advise you on the genetics linking CFS and EDS, however I can tell you from the contact I have with other EDS sufferers that these 2 conditions often go hand in hand (Fibromyalgia being another condition that seems to link in).

From my own case, I can tell the 2 apart, as symptoms are very different.  I can understand though that for someone apparently suffering from both at once that it could be very confusing indeed.  I had about 10-15 years experience of having CFS on its own, so can see the difference!

Some people believe that CFS is actually one and the same as EDS but I don't buy this -I know a lot of people with CFS who clearly are not EDS sufferers.  I believe that something in the brainstem area at the top of the neck could be one area that affects both sets of symptoms but I am not medically trained!  This area does control the autonomic nervous system though, so it would explain poor temperature control, low blood pressure and other weird symptoms.  Some EDS sufferers have been found to have what is known as a 'Chiari Malformation' (see Chiari Institute website) which causes brainstem related symptoms.  (I have never had a brain scan, so don't know if my brain stem has 'settled'!)

I wish I could help you on the medication question.  For my CFS the only thing I've found that helps is NADH (which can be bought online - I buy mine from the Nutri Centre).  Actually, VegEPA has also been a great help.  I must start taking it again!

The EDS being newer to me is not something I have conquered yet, but the main message which came out of this weekend's conference was that exercise is key to coping with Hypermobility Syndrome and helping stop the decline in mobility etc (NB!  This will only apply if your son has Hypermobility Type EDS which is the same thing really).

Your son will have the same issues as me - by exercising to manage his EDS, he may well suffer the after effects through a relapse of the CFS. It is a nightmare.  The only exercise I would recommend is Pilates.  I won't go into the reasons in full, but basically it is because in Hypermobility sufferers, often the big muscles are being worked at the expense of the smaller ones.  Any exercise that therefore works on STABILITY is key.  Pilates, Alexander Technique, T'ai Chi etc.  (For me, anything more would be impossible anyway with the CFS!)

I hope this helps you!  Please note I am a fellow sufferer, not a medical professional, so I am simply telling you things as I see them, and from my own experience.

Good luck!  Information is key...as Professor G said at the conference "Take charge of this illness or it will take charge of you!"

[jaymcc]

hi i have a daughter who was diagnosed with cfs 12 months ago and reffered for possible eds. We have recently received the diagnosis fro eds hypermobility type. my problem is that now i have this, the doctor is trying to say that she no longer has a diagnois for cfs. i don't know where this assumption comes from, as all the same problems are still there, although now they are better managed due to a time management system given to us by the cfs specialist.
Just wondered if you could get in touch so i could pick your brains as regards how i show the link between the two, as i'm now being accused of creating facticious illnesses and may yet face prosecution for refusing to allow mt child to attend full time school

[jawsUK]

Hi there!

Are you based in the US?

Sorry to hear about the problems you are experiencing.  I have two thoughts (I'm just a sufferer of these 2 conditions rather than a medical expert, so I hope this helps):

1.  Your child is clearly suffering WHICHEVER the diagnosis.  If you can only get an official diagnosis of "EDS including symptoms of Chronic Fatigue" then this should be good evidence to present to the authorities investigating you, as they indicate the level of suffering!

Either your daughter is well enough to attend school or not, and either one of these debilitating conditions alone might be sufficient to explain your reasons for her absenteeism.  A diagnosis of EDS is serious enough on its own! I expect from what you say (and from my own experience) that your daughter is indeed suffering from both cfs and eds together, as they often go hand in hand.  I know only too well how real but frustratingly 'invisible' these two conditions can be, so it is important that an expert can write a letter explaining the debilitating symptoms and their impact.  I would recommend going to the HMSA (Hypermobility Syndrome Association based in the UK) website and printing off the introductory letter (from memory I think it is on the home page and is written by world expert Professor Rodney Grahame). This open letter explains clearly how debilitating this condition is.

If you have an official diagnosis of eds, the specialist who diagnosed should know about the link between these 2 conditions and be able to confirm it.  Experts are still unsure WHY there is a link between EDS and CFS, and which came first.  In my case I suffered from cfs for decades before the eds, but was clearly born with the EDS - it was just a matter of years before the symptoms became evident.  Fibromyalgia is another linked condition (and FM is often confused with CFS).  Some 'schools of thought' now believe that Fibromyalgia is one and the same as Hypermobility syndrome (personally I remain unconvinced).

I don't know the ins and outs of your personal situation (the law, the education system etc) but I feel it  would be appropriate to get a letter from the specialist (i.e. a rheumatologist or I suppose a geneticist), diagnosing the EDS and also commenting that symptoms of associated CFS have been evident for 12 months.  Whether the diagnosis is one of official 'CFS', or 'EDS with associated chronic fatigue' the symptoms are equally debilitating.

2. Depending on which definition of CFS you look at, the presence of other conditions sometimes means that  a diagnosis of CFS is not possible as a stand alone illness.  (For example, I remember reading recently that people who suffer from bipolar disorder for cannot get a diagnosis of 'CFS').  However, it is usually a case of ticking symptoms off on a list and if you relate to more than a certain number of symptoms, a CFS diagnosis is made.

Very recently, a new human retro virus called HMRV was discovered in a research study (in the US) of CFS patients.  95% of CFS patients tested positive for it, which has been a revelation.  It will soon be possible to be blood tested for this HMRV retrovirus, which should prove very enlightening.  In the case of myself, your daughter and others with CFS and EDS together, researchers should be able to confirm through a blood test whether this retrovirus is present (and if so, I cannot see how a diagnosis of CFS could be denied).  This could prove extremely helpful to you, as it would be one very measurable, tangible 'sign' of severe illness.  I believe that testing is already being made available in the US (but it probably costs a few hundred dollars!)  Here in the UK things may become available on a much slower basis!

I hope this helps you and wish you the very best of luck.  Do write back to let us know how you get on.