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!"
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
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.
To be perfectly honest - which is not something many medical professionals will do in a face to face visit, Chronic Fatigue is associated w/ Ehlers Danlos Syndrome (EDS) for several reasons - the primary reason for most b/c of the constant effort your body has to expend in compensating for what it lacks - which is mainly holding that body (that is literally falling apart) together. Pain is the other reason - both are absolutely draining on an individual.
What many people fail to address is the fact that we EDSers have bodies that do not function the same as others in the 'general population. Our bodies are quite literally 'falling apart at the seams' w/ an already large deficiency in connective tissue strength that is continually degrading with time. I am a 44 yr old woman now (surprised I made it this far) & can attest to the fact that our bodies are literally falling apart - more so as we grow older. We have to build up our muscle mass/ strength to compensate for remaining connective tissue that fails to do its job properly in keeping our joints in place. When we lack or lose that muscle strength, havoc ensues with the continual effort and strain to hold those joints together - which is incredibly draining, whether you realize it or not. I can remember when I was a child, asking the dr why my neck continually caused me such unexplainable pain - he replied by telling me that a person's head weighs as much as a bowling ball & to imagine going about my day trying to hold that bowling ball w/out dropping it. He said that this is exactly what my neck is going through every minute of the day & that it would only make sense thatI (w/ EDS) would have such pain as I did.
While I have seen too many articles online about this disease, one thing I've noticed is that they don't really give people a full undestanding of what this disease is about - in laymen's terms. What they really fail to state is that EDS is a disease in which the collagen in your body is in an already weakend state, and deteriorates more and more over time. What many people fail to understand is that every prson's body is comprised of at least 80% collagen - it is not only your 'skin' that is comprised of collagen. Collagen comprises or is a main factor in connective tissue - ligaments, tendons, even muscle. It is a key factor even in cell structure - forming the walls of the cell, as well as being found within the cell. Collagen is what all your organs, joints, arteries, etc. are made of, even your eyes are comprised of collagen. Your brain, your bone marrow . . . just about anything you can name in your body is somehow either comprised of or has as a main component, collagen.
Now, if you stop to think about it in that light, you tend to come up with a slightly different picture as to what is going on w/ a person that has EDS - regardless of their 'type'. Then there is the issue of addressing which 'type' you have ben diagnosed with . . . and what those doctors mostly fail to recognize is that most all EDSers have cross-type manifestations. We are all different (yet the same) as each other - and each individual EDSer has their own 'things' that
affects them more or less than another EDSer. We are unique to ourselves. . . . researchers are just starting to realize what we have always known (yet, they always failed to listen to).
For me, living w/ EDS for 44 yrs, I have more problems than most b/c things just can't be bad enough - they have to get worse. What has happened to me, is something that hasn't been found in any other (or so I've been told by the world-reknowned geneticist that recomfirmed my Dx). W/ my classical 'type', my spine has decided to completely go south on me - just before I turned 40, leaving permanently disabled for the rest of my life w/ such advanced degenerative spine disease *NOTE* that is INOPERABLE only b/c I have EDS. What would otherwise be emergency surgery for any other person in this world, there is no doctor that exists that can (or will) even attempt to help me. I have lost any & all quality of life that I once had by another degenrative disease that isn't supposed to be common to us. I can no longer do anything much for myself & have been told that I require a FULL spinal fusion = from my neck to my derier. Without that surgery, I have been told that I will end up like a 'rag doll', similar to that of a person in a wheelchair with cerebral palsy. It's a shame that they didn't tell me what I'll do about when that wheelchair comes, b/c I have lost my ability to even 'sit' & am forever stuck lying down. Standing for more than 5 minutes hasits own issues too, then there's the Cauda Equina that developed from my spine being medically neglected - so I am completely incontinent for the rest of my life - which btw, they don't tell you leads to permanent paralysis.
I certainly don't mean to scare anyone, as much as I mean to tell you the honest truth of what 'could' happen from this disease. You all need to take every precaution to 'baby' your body with every opportunity you have b/c it's anybody's guess what your form will develop later on down the road.
I can also tell you that here in the U.S., you had better hope to God that you never end up on Medicare either. They, like almost every doctor I have met, will descriminate against you simply b/c you have a disease that is not common to the 'normal' people in the general public. They will not cover any treatment (of symptoms = only treatment available), if it is not 'common'. You should also be prepared for the fact that there are NO medical professionals that are experts on this disease (other than the geneticist that diagnose it), and in today's day, there are absolutely NO doctors that either know/ heard of your disease without looking it up on the internet 5 min before you walk in the door, and NO doctors that will treat you/ even take you as a patient b/c of the complexity of your disease, and mostly b/c you are not 'cost efficient' enough for them to spend any time on a untreatable/ incurable case. I live in CT, on the border of NY . . . I cannot tell you how many doctors over the years, that I have seen (and ultimately refused treatment/ or to accept me as a patient), even before my spine went. I had ONE doctor when I was 14 that diagnosed me and ONE doctor that reconfirmed that Dx. Since that 1st doctor, it has been over 20 yrs that I have been searching throughout the entire Country trying to find just one drl to accept me as a patient & even longer since my spine decided to quit. I have had dr.s admist that my case takes up too much of their time & they have many more patients w/ 'textbook' cases that they can turnover at a higher rate & just couldn't take the responsibility or time to deal w/ mine. I have had major medical institutions tell e tht they just didn't know what to do w/ me - so there was no reason for me to be a patient there. I needed someone to think outside of the box, yet no one will take the 'risk' involved w/ someone like me (w/ EDS). So I am swept under the rug, w/ handfuls of painkilllers, left to watch my body literally falling apart w/ absolutely nothing to do about it.
It truly is a shame to live in a Country that prides itselfon such cutting edge medical technology, yet are very descriminatory toward people they are supposed to be looking over us. It's a shame when the only people in this world that we have to turn to for help, turn us away for no other reason
So be prepared
just read your post i am 42year old female and reading your condition it is identical to mine also diagnoised by prof grahame and also c.f.s and am now awaiting m.r.i scan maybe chiari? i just want to say i wouldnt want to wish anyone to suffer daily as i do and all the bizarre complications that come with it but to read the similarities i wish to send kind thoughts and true understanding best wishes nu