ME/CFS/FM Patient Gets an EDS Diagnosis

Another Piece of the Puzzle: An ME/CFS/FM Patient Gets an Ehlers Danlos Syndrome Diagnosis | by | Jul 1, 2016 | Homepage

I’ve long noticed the overlap between these syndromes and this article explains them in detail.

Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder caused by structural deficiencies in collagen, the most abundant protein in the human body.

All the tissues of the body including ligaments, bones, tendons, muscles, skin, blood vessels, gums, eyes and large organs rely on collagen for their strength and flexibility.

The problems resulting from a body built with defective collagen are widespread and variable.

Persons with EDS Hypermobility often exhibit symptoms of dysautonomia, a dysfunction of the autonomic nervous system, which regulates unconscious organ function including heart rate, blood pressure, temperature, respiration and digestion.

Chronic pain, sleep disorders and fatigue are common in persons with EDS Hypermobility.

Structural abnormalities of the gastrointestinal track are also common, resulting in a variety of conditions including Irritable Bowel Syndrome.

Chronic recurrent headaches and eyestrain are also common, as a result of abnormal intracranial pressure and enlargement of the dura, a membrane of fluid surrounding the brain and spinal column.

Patients frequently suffer from allergies and sensitivities.

Twenty-eight years into my illness I developed chronic muscle pain after any type of physical exertion that sometimes escalated to full body pain, which I suspected was fibromyalgia.

About five years ago I listened to a lecture on the Internet given by Dr. Byron Hyde, a Canadian physician and researcher for CFS and ME at Nightingale Research Foundation, who said that there was a subset of patients with fibromyalgia who had Ehlers-Danlos Syndrome and one way to ascertain this was if the patient could touch their nose with their tongue.

However, my primary physician immediately dismissed this as did a cardiologist and a rheumatologist because I do not have any overt symptoms of joint hyper mobility or hyper elastic skin.

Such quick and ignorant dismissal of our symptoms is frustratingly common because doctors are always trying to minimize our pain.

These days with all the anti-pain-patient propaganda, they just assume it’s another version of chronic pain without ah apparent cause – without even bothering to try to find a cause.

My elongated tongue had caused some of my chronic fatigue symptoms which were relieved by doing Oral Systemic Balance, a system that employs oral appliances to address restrictions of the air passage due to the anatomy of the tongue and mouth.

Two years ago I was diagnosed with Small Intestine Bacterial Overgrowth (SIBO) and started treatment under the supervision of Dr. Melanie Keller, a naturopathic physician who specializes in this disorder.

Dr. Keller told me that she had several patients with similar presentations of SIBO who had been diagnosed with EDS.

The gastrointestinal tract is primarily made up of connective tissue and persons with EDS often have problems with gut motility that can lead to IBS and SIBO.

The nutritionist I consulted about this condition suspected that I had some kind of mast cell disorder. This was positively diagnosed by blood tests that showed elevated levels of tryptase.

When researching Mast Cell Activation Syndrome (MCAS) I discovered from Jan Groh, chapter coordinator of the Pacific Northwest Mast Cell Support group that EDS and MCAS are overlapping conditions.

Dr. Schirripa was the first and only physician of the countless number that I have consulted over the past four decades who was not mystified by my diverse symptoms and health history.

He diagnosed me with EDS hypermobility type.

Based on his evaluation he gave me a 7 seven out of 9 nine points on the Beighton scale. I think that he was pretty lenient on this scale as some of things I could only do slightly with the exception of being able to bend forward with straight legs and place my palms flat on the floor.

Physical evaluation was also made on the smooth texture of my skin, pronounced gum recession and low blood pressure.

He mentioned a couple of things that were of significance to me. He said that people with EDS are often intolerant of drugs, having adverse reactions or reactions opposite to what the drug is intended for.

This is definitely true for me. He said this is due to an extremely rapid phase one liver detoxification. This was found in several past liver detoxification laboratory tests I did that measure caffeine clearance

Another interesting thing that Schirripa discussed was the fact that there was most likely nothing wrong with my muscles (I know this from extensive testing with a neurologist). Rather, my muscles are working extra hard to protect hypermobile joints.

Schirripa thinks that the emphasis on hypermobility in the diagnosis and understanding of EDS hypermobility type is not comprehensive enough. His preference would be to call it a “multisystem spectrum disorder”.

Last January I read an interview on Yasimina Yklenstam’s blog with Diana Driscoll called “Vagus Nerve Stimulation and POTS/Mast Cell Activation”.  Driscoll is an optometrist who has EDS, POTS and MCAS and has proposed a theory on how these are related to intracranial pressure and abnormal vagus nerve functioning.

As an optometrist she learned how to identify in eye examinations abnormal patterns in the optic nerve and blood vessels of POTS patients. From her experiments in treating her own health problems she suspected that patients with these disorders have low levels of acetylcholine. Supplementing for this made a huge improvement in her health and the health of her children who also suffer from similar disorders.

I then tried taking phosphadityl choline, another substance that boosts acetylcholine and is good for liver function. I had a great response. Both my chiropractor and physical therapist are amazed at the softening of my muscles in the back of my head and spine and my sleep has improved.

The symptoms of EDS hypermoblity are virtually indistinguishable from those of Chronic Fatigue and Fibromylagia Syndromes especially when one takes into account that its presentation is variable from person to person.  

I recall several years ago when I saw Dr. Andrew Holman, a rheumatologist and leading researcher in fibromyalgia, that he mentioned to me that many of his fibromyalgia patients were very flexible.

Strategies for improving muscular skeletal symptoms include

  • minimizing joint impact, hyperextenision and resistance exercise;
  • avoiding excess body weight;
  • wearing shoes with arch and heel support;
  • doing low resistance muscle toning exercises to help stabilize joints;
  • myofascial release type therapies to reduce muscle pain;
  • using supportive mattress and a pillow that keeps head in a neutral position while sleeping; and
  • using fat-grip writing utensils.

EDS is considered a rare disorder but this is most likely because it is under-diagnosed. Physicians are most familiar with the classical type of EDS, which manifests itself in hyper flexible joints and hyper elastic skin. The diagnosis of EDS hypermobility type is much more difficult because the outward manifestations are more subtle.

6 thoughts on “ME/CFS/FM Patient Gets an EDS Diagnosis

  1. BirdLoverInMichigan

    This is a short and potentially helpful article for those who just don’t get it…so many MDs I’ve encountered and still have to deal with. You know the ones who can’t see the forest for the trees.


    Liked by 1 person

  2. kandiapple

    I have suspected for a couple of years that many of the syndromes and diseases that have such a large list of similar symptoms and test findings are either all related or are one disease that has several subsets, or types of disease. For example, rheumatic diseases fall under one heading with more than 300 types. I just think that researchers will find that this is the case with many of the things we all deal with. I am personally going through this same thing right now, and keep getting diagnosed with more and more things. I don’t think I have ten syndromes, I think I have two or three… We’ll see, I hope.

    Liked by 1 person

    1. Zyp Czyk Post author

      I knew I’d be diagnosed with fibromyalgia if I told doctors about all the different pains I experienced instead of just back pain, which is where it originally started, so I didn’t mention the pains in my other piriformis, my headaches, muscle aches, extreme fatigue, brief ins tense joint pains, visceral pain…

      Sure enough, When I eventually decided to speak up about all the other pains and malaise, I received a fibromyalgia diagnosis, but I knew there was more going on because my troubles has been life-long. Luckily I persisted until I got to the source of it all, which was EDS. That finally made sense of all the misery I’d endured my whole life.

      But now they no longer want to treat the obvious pain this disorder causes, so I can only hope for a cancer diagnosis – and I’m not even sure I’m kidding about that.


      1. kandiapple

        Don’t hope for cancer, my friend, because chemo itself can kill you. I watched my little sister die of cancer and she starved to death at the same time. Getting proper treatment for pain sometimes depends upon where you live. I was one of the first people to get disability for Fibro in the US. My pain started in my legs, then I injured my back a few times and then pain all over, etc., you know the drill. Are there no good pain management neurologists in your area? I know there is a huge shortage. I’m lucky I found one in Florida who is amazing and has four advanced degrees. No govt agency is challenging him and he prescribes narcs all day long, but the pain is usually proven via tests/mri’s, etc. first. He told me he has people in the worst pain ever (back pain) who have perfect mri’s, and other’s who have horrible mri’s and don’t need pain meds. If you think you may have a cancer, get it checked. I would, but personally I would not accept Western medicine treatment at my age. I would go all natural (however, I’d have to rob a bank first.) I will not be at all surprised if I have EDS and/or some other things that mimic my Fibro, RA, ME/CFS, Lupus… I KNOW it’s all related! I also have to find out more about my RA because it’s seronegative and that can mean a lot of different types. I was never told or analyzed enough back in the day to see what kind I have. I avoid rheumatologists like the plague but just for a diagnosis that is correct, I’ll go to one now. I will not take any designer drugs — no drugs for it. I just want to know what it is for my kids.

        Liked by 1 person

  3. Pingback: Management of chronic pain in EDS – part 1 | EDS and Chronic Pain News & Info

  4. Pingback: Management of chronic pain in EDS – part 2 | EDS and Chronic Pain News & Info

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