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Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Nov 12, 2012.

  1. MishMash

    MishMash *****

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    Sharon,
    Thanks for your excellent input. I happen to agree that most ME/CFS is rooted in some form of connective tissue disorder (I hesitate to use the term EDS, because it has so many variations!) Your posts present a strong case. It is just so damned depressing, because there is no pharmacological way to treat something as widespread as weak tissue syndrome.
  2. Sharon Lang

    Sharon Lang

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    Just to be clear, I am Ot saying that ME AND EDS are the same. It has taken decades for everyone to figure out what is going in with me. If you have chronic pain, ask. See if this fits you. Just because you are Ot hoer mobile does Ot exclude EDS, you could have the skin toe or vascular (which can be life threatening). I want to share as I was probably one of the earliest person in the USA tested for NMH , other than the study participants. The abstract came out, I ran to a cardiologist who told me no way, that was an old persons disorder. I explained I had always passed out and eventually learned to predict when and lie down, sometimes in the middle of a store, to humor me, he Gave me the to test. I did not know Ot to eat and had coffee, which raises Bp. I passed out in 6 seconds, before medication. Went on meds, retested and passed out in 90 seconds. Dx was nmh, worst case he had ever seen. Tough living in a warm climate. I evolved into fm do and cries/me, seizures, Chiari I, and now eds. As stated earlier if you have EDS you do not have FMS. I thought the neurosurgeon was ridiculous when he said this, I had going to see a rheumatologist for almost 20 years who used to run the arthritis foundation. How would he have missed EDS and called it FM. Well. He did...if you are in chronic pain, as I am, severe , I wanted to share the information. I have no need to be right here . Many symptoms overlap, exercise intolerance, fatigue,and orthostatic I tolerance. You definitely want to rule out vascular type if EDS as there are surgical contraindications and reasons to have a cardiologist intro the aortic artery annually. Feel better all.........
    Allyson likes this.
  3. Sharon Lang

    Sharon Lang

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    Thanks, mishmash. Where in georgia re you!
  4. Sharon Lang

    Sharon Lang

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    Not always.. There are three kinds of EDS.....

    http://www.ednf.org/documents/EDSinPracticeS.pdf
  5. Sharon Lang

    Sharon Lang

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    CARDIOVASCULAR … … Possibility of aortic root dilatition, mitral
    valve prolapse, other valvular abnormalities,
    enlarged right coronary artery. … Postural orthostatic tachycardia,
    leading to chronic fatigue, is especially
    found in young persons with EDS.
    … Some doctors have seen onset of lipid
    abnormalities in EDS youth; in any case, attention to heart health should begin early.
    GASTROENTEROLOGY
    … Irritable bowel syndrome with constipation and/or diarrhea, reflux, food allergies, gastroparesis.
    RHEUMATOLOGY & ORTHOPEDIC
    … Joint hypermobility can be assessed using the Beighton scale; however, joint hypermobility also depends on age, gender, family and ethnic background.
    …
    MAXILLOFACIAL/DENTAL
    … High palate and teeth crowding (prior to orthodontic corrections).
    … TMJ pain.
    … Early onset gingival recession
    and gum problems.
    … Cavities, dental discoloration and dental pits.
    NEUROLOGY
    … Cranio-cervical instability, cervical disc disease, Chiari I malformation.
    … Syringomyelia.
    … Tethered Cord Syndrome.
    … Migraine headaches.
  6. Sharon Lang

    Sharon Lang

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    Lady post, check out the above link but overlapping symptoms are
    Fatigue
    OI
    Ibs
    Exercise intolerance


    Three most common types are as follows, but you may not be hyper mobile...



    Hypermobility: Most common type






    Soft

    Classical: Occasional internal organ fragility



    Soft, fragile, elastic

    Vascular: Fragility of arteries, intestines & other internal organs


    Soft, fragile, elastic, translucent
    Kyphoscoliosis: Very rare; kyphoscoliosis, hypotonia, fragility of eyes and arteries



    Soft, fragile, elastic
  7. Sharon Lang

    Sharon Lang

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    OI specials know nothing about eds. This is a rheumatologist or a geneticist that would diagnose.

    Sorry for errors. Autocorrect is over riding typing. I did not say lady, I said last post I will copy. Just suggesting a rule out due to the vascular type needing to be followed by a cardiologist.....
  8. Sharon Lang

    Sharon Lang

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    Well more than three, but three common types of he rare genetic disorder.....confirms that pt should do stretching not strength training. Opposite of what most pts will want to do. Luckily mine has an EDS diagnosis herself and gets exercise intolerance.....
  9. Sharon Lang

    Sharon Lang

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    It is not a spectrum. The test is called beighton abound just like FMS , you need so many to get the diagnosis for the HYOERMOBILE type. The Beighton Score is a simple validated system used to quantify joint laxity and hypermobility. If you think you may have hypermobility, you can check your Beighton Score using the table below


    Give yourself 1 point for each of the simple tests that you can do, with the maximum score being 9 points. Most people score less than 2, and only three to four in a hundred healthy people score 4 points or more.

    Test Points
    Able to put hands flat on the floor with knees straight 1
    Able to bend left elbow backwards (hyperextend beyond 10°) 1
    Able to bend right elbow backwards (hyperextend beyond 10°) 1
    Able to bend your left thumb back on the front of your forearm 1
    Able to bend your right thumb back on the front of your forearm 1
    Able to bend you left little (fifth) finger back beyond 90° 1
    Able to bend your right little (fifth) finger back beyond 90° 1
    Able to bend your left knee backwards(hyperextend beyond 10°) 1
    Able to bend you right knee backwards (hyperextend beyond 10° 1
  10. Sharon Lang

    Sharon Lang

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    Yes, there is no treatment. It is a ole ten issue. Unfortunately, there are precautions. No chiropractic date, no contact sports. Check out the pain management brochure if you have chronic pain......I agree, no cure, just management.
  11. Sharon Lang

    Sharon Lang

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  12. Sharon Lang

    Sharon Lang

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    The gut is an EDS symptom. There is no treatment, just management. Again, I am Ot saying it is be cause, just want people to rule it out due to the needing cardiac monitoring if you have vascular type.


    GASTROENTEROLOGY
    … Irritable bowel syndrome with constipation and/or diarrhea, reflux, food allergies, gastroparesis.
    MishMash likes this.
  13. Sharon Lang

    Sharon Lang

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    It's not a spectrum. There is a height on scale
    I completely agree not everyone on here has the same diagnoses.

    Florinef did not work for my nmh. Which is what Cheney discovered...http://www.prohealth.com/library/showarticle.cfm?libid=8361
    MishMash likes this.
  14. Sharon Lang

    Sharon Lang

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    4) If symptoms have not improved or have become worse ask your doctor to check you for Diabetes Insipidus (DI). (This is not the same condition as the more familiar Diabetes Melitus in which the pancreas does not produce enough insulin. Diabetes Insipidus results when the pituitary or hypothalamus are not functioning normally. The only thing the two conditions have in common are the symptoms of excessive thirst and frequent urination.)

    If the DI test is positive, Cheney usually treats it with Vasopressin nasal spray. Cheney finds that about 50% of CFIDS patients show low-level DI. (Not surprising, given that the HPA axis - hypothalamus/ pituitary/adrenal - is suppressed in CFIDS.) Low level DI might respond to salt and water and licorice treatment. High level DI will not respond at all to those treatments, and without Vasopressin those patients cannot keep their blood volume up high enough.

    Note: Dr. Cheney has found that Florinef is not a good treatment option for NMH in most CFIDS patients. Florinef forces potassium depletion and further suppresses the HPA axis, which is already suppressed. Initial short-term benefits are seen with Florinef, but they degrade over time. With extended use Florinef actually exacerbates the disease in many patients.

    Source: http://virtualhometown.com/dfwcfids. Thank you to Carol Sieverling.
    MishMash likes this.
  15. Sharon Lang

    Sharon Lang

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    diagnosis isbasedonsymptoms as well as personal/family medical history. Your doctor will examine your joints and skin and ask you some questions. You may be referred to a geneticist for further evaluation. Hypermobility or Classical Types of EDS are diagnosed by comparing your symptoms and history with established diagnostic criteria.
    If Vascular Type EDS is suspected, your doctor may order genetic testing for this specific type.
    HOW IS JOINT HYPERMOBILITY TESTED?
    Your doctor will assess joint movement using the Beighton Scale (shown at right). One point is scored for your ability to perform each maneuver depicted. Left and right limbs are each scored separately.
    A score of 5 out of 9 (or greater) indicates generalized joint hypermobility.
    HOW IS SKIN EXTENSIBILITY TESTED?
    Your doctor will check skin extensibility by pulling the skin at a neutral site until resistance is felt.
    HOW IS VASCULAR TYPE EDS TESTED?
    A blood test or skin biopsy may be performed to confirm or rule out Vascular Type EDS.
    SKIN CONDITIONS
    Suturing may be difficult if fragile tissues tear – use of proper techniques can minimize scarring. Skin should be protected daily with sunscreen.
    HEART MONITORING
    All types of EDS patients are recommended to
    have baseline and periodic echocardiograms,
    plus CT imaging of the aorta, to monitor for aneurysm, enlarged aortic root, or valve
  16. MishMash

    MishMash *****

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    Was living in Augusta. Which is on 20, about an hour and a half from Atlanta. It is not as nice or exciting as Atlanta. In fact, the young kids call the town "Disgusta." Most leave after high school.
    Allyson and Sharon Lang like this.
  17. Sharon Lang

    Sharon Lang

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    He did not say eds was the source of everything. I have a Chiari I malformation, grand mal seizures etc. just sharing that there is an overlap and monitoring of vascular system is a must .....i do not need to be right here,I am not a physician. Well all have many diagnoses. This is one that if you have, you do not want to ignore.....

    He did Not rule out me/cfids, just FMS. No cure, but the pain brochure is excellent. It confirms that exercise should be to stabilize and stretch.

    Do not know what to do about fonts..
  18. MishMash

    MishMash *****

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    If anybody can step forward with a a more widely shared anatomical abnormality than "connective tissue disorder," for patients with some kind of "chronically fatiguing illness," please step forward and be heard. Obviously, there are post-polio syndrome, true Lyme disease, and other sources than can cause the main symptoms we all have. But those can be ruled out. Here we have to consider that the most obvious anatomical manifestation is probably the most likely cause of CFS. It's basic logic.
    Sharon Lang likes this.
  19. Sharon Lang

    Sharon Lang

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    It's at least testable, for lack of a better word. I say if you have chronic fatigue, OI, gut issues and severe pain. Ask your doctor. You may have the vascular type and then you need to know,as this is life threatening.
    MishMash likes this.
  20. Sharon Lang

    Sharon Lang

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    Alpharetta here...
    MishMash likes this.

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