Chronic fatigue in Ehlers–Danlos syndrome—Hypermobile type

[Complex CFSer]

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31542/full

"Abstract

Chronic fatigue is an important contributor to impaired health-related quality of life in Ehlers–Danlos syndrome. There is overlap in the symptoms and findings of EDS and chronic fatigue syndrome. A proportion of those with CFS likely have EDS that has not been identified. The evaluation of chronic fatigue in EDS needs to include a careful clinical examination and laboratory testing to exclude common causes of fatigue including anemia, hypothyroidisim, and chronic infection, as well as dysfunction of major physiological or organ systems. Other problems that commonly contribute to fatigue in EDS include sleep disorders, chronic pain, deconditioning, cardiovascular autonomic dysfunction, bowel and bladder dysfunction, psychological issues, and nutritional deficiencies. While there is no specific pharmacological treatment for fatigue, many medications are effective for specific symptoms (such as headache, menstrual dysfunction, or myalgia) and for co-morbid conditions that result in fatigue, including orthostatic intolerance and insomnia. Comprehensive treatment of fatigue needs to also evaluate for biomechanical problems that are common in EDS, and usually involves skilled physical therapy and attention to methods to prevent deconditioning. In addition to managing specific symptoms, treatment of fatigue in EDS also needs to focus on maintaining function and providing social, physical, and nutritional support, as well as providing on-going medical evaluation of new problems and review of new evidence about proposed treatments."
"The following should then be excluded or investigated further if thought to be present:

• Chronic infection (e.g., hepatitis, tuberculosis, brucellosis, endocarditis, Lyme disease),
• endocrine disorders (e.g, diabetes, thyroid disease, adrenal insufficiency),
• autoimmune inflammatory conditions (e.g., joints, skin, bowel, liver, and renal disorders),
• cardiorespiratory disease,
• sleep disordered breathing,
• neurological disorders (e.g., myasthenia gravis, multiple sclerosis)."

 

[Woolie]

Oh dear. Even if you're one of the lucky ones to have a diagnosis of EDS, the fatigue part of it will still be treated just as it is for MECFS patients.

 

[Michelle]

I suppose the EDS diagnosis has been "lucky" in helping get things like a wheelchair and physical therapy (sorta). However it came at the cost of the medical geneticist who diagnosed me ending the appointment proclaiming "we just need to get you MOVING!" Then proceeded to report to my GP that the main thing to be done with me was -- you guessed it! -- EXERCISE! The next few months with my GP were a pain in the ass. To be sure, the medical geneticist was a hopeless twit.

The problem with the approach of the research posted by the OP is that it focuses on fatigue. ME/CFS is NOT fatigue. It is easy to see why fatigue would be a problem in EDS. But fatigue does not a dx of ME/CFS make.

 

[Complex CFSer]

The UK's NHS NICE Guidance states:

Your doctor should consider CFS/ME if you have disabling tiredness (fatigue) that is new or started suddenly, lasts a long time or keeps coming back and cannot be explained by other causes. CFS/ME should be considered if the fatigue means you can't do the things you used to, if it gets worse after activity or gentle exercise such as a short walk, and if you also have some of the following symptoms:

• sleep problem
• pain in the muscles or joints
• headaches
• sore throat or sore glands that aren't swollen
• problems thinking, remembering, concentrating or planning
• flu-like symptoms
• feeling dizzy or sick or having palpitations (irregular or fast heartbeats), or
• 
  exercising or concentrating on something makes your symptoms worse.

So they do see disabling fatigue as the primary symptom. Even though they lump ME and CFS together in the bucket.

The issue I think is with terminology. Having EDS a person is more likely to be tired than the average person because of the connective tissue affecting muscles making them have to work harder to perform the same actions and keep balance etc. Pain in the joints is also pretty common in EDS as is brain fog. With PoTs and PoTs-like symptoms also being part of the territory in many EDSers that also accounts for the penultimate one on the list.

I think possibly, the article is regarding EDSers who have more disabling fatigue than the 'norm' with EDS (even though that is a spectrum in itself). As with many conditions, there can be a propensity to co-morbidities and therefore it's vital that doctors get the necessary tests performed (which is another thing the article is saying).

Trouble is, especially with the NHS, they seem very reluctant to do this. This is something I am facing right now.

 

[Complex CFSer]

For me, the takeaway message is that proper investigations have to be performed, to rule out or confirm underlying causes. Until this is done routinely with people suffering CFS it will continue to be a bucket they lump everyone into and it's a very heterogeneous one. There may be a core of commonalities between CFSers, such as imbalances in the blood, possible methylation issues etc. but really, they need to start separating out the causes as they have just done with EDS so people get a clear and accurate diagnosis. At the end of the day, it should be about quality of life for the person and if there are treatable causes, which there have to be in many cases, people should be given access to that treatment.

 

[Invisible Woman]

At the end of the day, it should be about quality of life for the person and if there are treatable causes, which there have to be in many cases, people should be given access to that treatment.

Couldn't agree more but:
1. NICE still seem to (want to) believe that abnormal illness beliefs style CBT and GET are effective treatments, at least for ME.

2. It's much handier to lump everyone and their comorbidities together and call it MUS or FSS.

The fact that neither of these things actually help people is neither here nor there. It's seen to save money, in the short term at least.

 

[Complex CFSer]

Yes, I think there is a financial agenda behind the approach to ME/CFS. As with other conditions. They want to limit the drain on resources (investigative tests such as endocrinology, MRIs, proper thyroid tests, etc. are probably a lot more expensive than telling people to come along to group exercise classes). And the approach of putting as many things as possible down to being psychosomatic is their easiest get-out clause. Quite sinister.

 

[pattismith]

The problem with EDS, if I understood well, is that some doctors think you can have it even though you don't have genetic test nor the usual set of physical signs to prove it...

At this point I can't see an easy way to diffenciate it from CFS/ME...

 

[sb4]

I know this will probably get me grief here but just a thought.

EDS = Bad collagen. If Gerald Polack is right about water then collagen is hydrophilic and creates an exclusion zone at the surface between collagen and water when under the present of IR and UV light. This exclusion zone is simply splitting the water into positive and negative charge from H20. This build up of electrons and protons can be used to facilitate reactions (ie can be used as energy).

CFS seems to be a disease of a lack of electrons/energy. EDS = Bad collagen = small exclusions zones = less electrons and protons = less likely to recover from bacteria/virus/mold = CFS.

 

[Complex CFSer]

"The problem with EDS, if I understood well, is that some doctors think you can have it even though you don't have genetic test nor the usual set of physical signs to prove it...

At this point I can't see an easy way to diffenciate it from CFS/ME.."

Not that I've become aware of. You have to meet diagnostic criteria (which have just been redefined) to be diagnosed. What you might be thinking of, is where it is hypermobile EDS there is no genetic test and with classic type, only about 50% of the people show a genetic sign. Hypermobility is less in classic sign than in hypermobile type. There are differences between all the types. The most dangerous one is the vascular type.

The easy way to differentiate it from CFS/ME is because there are definite physical characteristics with EDS and also a syndrome of physical ailments which can go along with it such as gastrointestinal issues, PoTs etc.

 

[Complex CFSer]

sb4 I have no idea!

 

[pattismith]

The easy way to differentiate it from CFS/ME is because there are definite physical characteristics with EDS and also a syndrome of physical ailments which can go along with it such as gastrointestinal issues, PoTs etc.

Yes I understand that the diagnostic is clinical, like CFS/ME no blood markers, no biopsy that can show histological changes, so you will always have people that doesn't believe it's a real disease....

 

[Complex CFSer]

There is apparently a 'flower formation' of collagen in classic types and genetic tests can show up several of the other types, but not hypermobility type (yet!). Yup another one of those invisible illnesses that garner no sympathy!

 

[Deepwater]

I know this will probably get me grief here but just a thought.

EDS = Bad collagen. If Gerald Polack is right about water then collagen is hydrophilic and creates an exclusion zone at the surface between collagen and water when under the present of IR and UV light. This exclusion zone is simply splitting the water into positive and negative charge from H20. This build up of electrons and protons can be used to facilitate reactions (ie can be used as energy).

CFS seems to be a disease of a lack of electrons/energy. EDS = Bad collagen = small exclusions zones = less electrons and protons = less likely to recover from bacteria/virus/mold = CFS.

Very interesting. Hypermobility (ergo bad collagen) does seem to be a clear risk factor for developing actual classic sudden-onset ME. I fit this category and so do so many others I have met - it's not just EDS being misdiagnosed as CFS. I've often wondered what it is about soft collagen that makes people vulnerable to ME, and have been a bit frustrated that it hasn't been investigated.
Pardon my ignorance, but are you saying bad collagen causes fluid retention?

 

[sb4]

Very interesting. Hypermobility (ergo bad collagen) does seem to be a clear risk factor for developing actual classic sudden-onset ME. I fit this category and so do so many others I have met - it's not just EDS being misdiagnosed as CFS. I've often wondered what it is about soft collagen that makes people vulnerable to ME, and have been a bit frustrated that it hasn't been investigated.
Pardon my ignorance, but are you saying bad collagen causes fluid retention?

It might do, I'm not sure. My overall thought was that if a lack of electrons and protons is the cause/result of ME, and if these electrons and protons in EZ water are used by enzymes to facilitate reactions, as dr kruse thinks. Then having bad collagen means you will have a smaller EZ = smaller reservoir of electrons and protons from water, this means you will not be able to do as many enzyme reactions, which means you will be more susceptible to something going wrong. Collagen is present pretty much everywhere, especially muscles, so I think this is a very interesting theory.

 

[Skycloud]

It might do, I'm not sure. My overall thought was that if a lack of electrons and protons is the cause/result of ME, and if these electrons and protons in EZ water are used by enzymes to facilitate reactions, as dr kruse thinks. Then having bad collagen means you will have a smaller EZ = smaller reservoir of electrons and protons from water, this means you will not be able to do as many enzyme reactions, which means you will be more susceptible to something going wrong. Collagen is present pretty much everywhere, especially muscles, so I think this is a very interesting theory.

I've liked this post because I've never heard any thing like this before and it's a challenging thought. Would be interested to know more, but not sure I would understand it.

My family on both sides shows hypermobility, and I had a grandfather who showed a lot of marfan features. I didn't know him or anything about his health, but he lived to a good old age. I have a sister diagnosed with EDS type 3 with some marfanoid features, and chronic fatigue and POTS. I'm hyper mobile and so are my children.

Having done some reading and discussed with my sister I'm confident that if I saw my sisters consultant he would diagnose me with EDS 3 too. It's something I want to look into more.

 

[sb4]

@Skycloud My mom and brother both have hypermobile joints although have never been diagnosed with anything like EDS. I don't have hyper mobile joints however it would seem thats just one aspect of EDS, maybe my collagen is different in other ways.

I would highly recomend reading Gerald Polacks work on water. It presents a very differen't view on how water works than what is currently believed and if he is right, it has MASSIVE implications for health / how the body works. He doesn't talk about CFS at all but I think it's well worth reading his ideas...

 

[Skycloud]

@Skycloud My mom and brother both have hypermobile joints although have never been diagnosed with anything like EDS. I don't have hyper mobile joints however it would seem thats just one aspect of EDS, maybe my collagen is different in other ways.

I would highly recomend reading Gerald Polacks work on water. It presents a very differen't view on how water works than what is currently believed and if he is right, it has MASSIVE implications for health / how the body works. He doesn't talk about CFS at all but I think it's well worth reading his ideas...

Ok thanks, I'll look into his work. Will start with his TED talk - probably more my level!