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ME/CFS: A disease at war with itself
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?underlying connective tissue disorder

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by merylg, Oct 22, 2012.

  1. merylg

    merylg Senior Member

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    Some of us may find we have an underlying connective tissue disorder. Not all of these mean long arms and long legs & there are variable expressions between individuals. Some syndromes are so unusual that your doctor will not recognise the features.

    Here is how to tell the difference between possible Loeys-Dietz Syndrome & Marfan's Syndrome. It is interesting that people with LD Syndrome have "allergies to both food and things in the environment".

    http://www.loeysdietz.org/images/LDS-MFS.pdf
    Allyson and WillowJ like this.
  2. Gavman

    Gavman Senior Member

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    Meryl, I think connective tissue problems seem evident in most cfs patients
    I started upping my glycine or collagen, which I think was useful but more a symptom than a cause for me.
    I'm tall and slender but I have put on some functional weight doing physical activity but still have that annoying fat mal absorption. Good for the stomach to look good but not for proper digestion or energy.
    merylg likes this.
  3. merylg

    merylg Senior Member

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  4. alex3619

    alex3619 Senior Member

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    One of the things that makes me different from many is huge hands - they would fit on someone much taller. That includes long fingers. I wonder if that implies there might be a wide range of connective tissues disorders associated with ME?
    Allyson and merylg like this.
  5. merylg

    merylg Senior Member

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    So do I Gav. I also think it's important to find out which one a person might have as there are some serious complications like aortic root dissection, heart valve failure, arrhythmias, endocarditis risk, heart failure, dural ectasia, brain aneurysms etc.
  6. merylg

    merylg Senior Member

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    There is variation in expression between individuals (eg in one family even) of connective tissue disorders. I think that having such a disorder, inherited or from a spontaneous mutation, predisposes one to ME/CFS.
    WillowJ likes this.
  7. Gavman

    Gavman Senior Member

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    Hm tmg hey. I didn't know that glycine was the same type that the body uses to form connective tissue?
    Don't know about the fat mal absorption either. Kind of sick of looking for answers right now and working on life skills instead.
    merylg likes this.
  8. justy

    justy Senior Member

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    Hi Meryl - your rsearch powers are awesome - you are certainly keeping me on my otes and looking for clues. I was interested yesterday to read up more on connective tissue disorders, Marfans etc and links you posted. This is what jumps out at me from my family.

    I was born with a patent Ductus arteriosis (not premature baby) which i had tied, in open heart surgery at 6 (quite old!) Back in thos edays there was no keyhole surgery, so it was yank the ribs apart, massive scar etc. I didnt know its common in some Connective tissue disorders (can we call them CTD so i dont have ot keep typing it?)

    I have long slender fingers, and grew very quickly as a teen ager i was very tall, but didnt realise my potential and only made it to 5 ft 6 in (although i am taller than all preceding members of my family)

    My son, who is not ill with M.E is VERY tall - 6 ft 4in at 21, very long arms and legs, very slim fingers. He has the concave sternum (very thin) also has many stretch marks all over body - especially down back , despite never having been overweight. He has often complianed of aches and pains and bone/muscle aches etc. He had oshgood schlatters as a teenager. He has week wrists, despite being so large - we used to try and get him to chop wood, but he ended up at the doctors with a very sprained wrist.

    My daughter - she has been ill with a mystery debilitating illness, that mainly attacked her digestive system and tonsils - bed bound and lost over a year of school - 4 years on much better, but still has health issues. She has hypermobile joints, but is not talllike her brother.

    I'm wondering if there is some way of being genetically tested as a family (or individually) to see if these disorders come up? I mean a definitive test, not just a possibility test.

    Much to think about Meryl.
    take care, Justyx
    merylg likes this.
  9. WillowJ

    WillowJ Senior Member

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    I think I could have CTD of some kind. I have appointment with geneticist but not for some months.
    merylg likes this.
  10. merylg

    merylg Senior Member

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    Hi justy, you could start by just making a phonecall enquiry like I did. They put me on to a genetic counsellor. I told her briefly what I wanted, mainly interested in Marfan's and EDS & why...She was extremely helpful, gave me phone number for my local large teaching hospital genetic clinic, and name of Dr to get GP to refer to. Said that better, as it gives you 12 mths whereas if specialist refers, only have 3 mths referral.
    I then rang local genetic clinic. Once again I was lucky to get someone really nice and helpful. Said get GP to write informative referral, as they triage referrals for apptmts. Urgent apptmts Feb...non-urgent March. I have been told before that nothing in genetics moves quickly!
    I gather they do actual genetic testing for these conditions if the diagnosis is in doubt? I am not sure, but they look at family history & immediate family I guess. My mum had a brother who died at 16 after having mumps. Not unusual to catch mumps but to die from it is.
    Another brother of hers was said to have a "fatty heart" & was morbidly obese. Died young.
    My father had an abdominal aortic aneurysm that grew to operable size. He had unexplained muscle wasting in his lower leg. He had vascular dementia & Transient Ischaemic Attacks. He had angina pectoris that was severe, but his coronary arteries were not blocked. He had 90% blocked carotid artery (in neck) that needed surgery to clear out plaque.
  11. merylg

    merylg Senior Member

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    Hi Willow, hope your appointment goes well.
    WillowJ likes this.
  12. Rand56

    Rand56 Senior Member

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    This may not be an answer for more serious issues, but since TMG was mentioned, silica is good for connective tissue. I had a nagging lingering hamstring problem for quite some time and within a short amount of time it was relieved by taking Diatomacious Earth. DE is also very inexpensive.
    merylg likes this.
  13. merylg

    merylg Senior Member

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    justy likes this.
  14. merylg

    merylg Senior Member

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    This is an older paper, but the content is interesting.

    http://thorax.bmj.com/content/39/10/780.full.pdf

    Thorax 1984;39:780-784
    Pulmonary disease in patients with Marfan syndrome
    JR WOOD, D BELLAMY, AH CHILD, KM CITRON
    From the Brompton Hospital, and the Paediatric Research Unit, Guy's Hospital, London
  15. merylg

    merylg Senior Member

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  16. merylg

    merylg Senior Member

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  17. taniaaust1

    taniaaust1 Senior Member

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    My newest specialist said he thought I have some form of connective tissue disorder (he thinks that is why I got a frozen shoulder at the age I did and why I had a prolapse).

    One of my children I think has EDS, so I may be carrying a gene for that.
    MishMash likes this.
  18. merylg

    merylg Senior Member

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    taniaaust1 sounds like your new specialist is on the ball! I have been compiling a list, mainly for my genetics clinic appointment, of things in my family that possibly are signs of some disorder. I must say that I was inspired by how organised you were for your apptmts tania! So thanks! I also made a list of all my drs names, addresses, ph & fax numbers.
    I took these to my Neurogenetics clinic apptmt & was able to leave them a copies so they can already liaise with the general genetics clinic. (My apptmt with the general genetics clinic is not until March, 2013)

    Before my Neurogenetics apptmt I spent time talking to my family, which helped me clarify a few things. It was of interest to the clinic that Atrial fibrillation was in my family. I did not know why this was relevant until I later did my own reading and found that AF can be associated with & exacerbated by a mitochondrial DNA deletion mutation.

    http://journal.publications.chestnet.org/data/Journals/CHEST/21989/539.pdf
    taniaaust1 and MishMash like this.
  19. pollycbr125

    pollycbr125 Senior Member

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    I am pretty sure I have an undiagnosed connective tissue disorder possibly a lesser known one but trying to get a diagnosis in the UK once you have been given a diagnosis of me/cfs is nigh on impossible . If anyone knows of any private doctors in the UK who specialise in connective tissue disorders please contact me .

    I have been pos on the ANA test for the past couple of years, I was diagnosed with hashimotos almost 2 years ago which I had to fight for as yet again the doc wanted to label my symptoms as ME related , even tried sending me back to the clinics till I demanded testing again and hey presto I have the antibodies .

    A lot of my problem is due to the fact that none of my family have autoimmune disorders so by some weird logic they think I can't . Though I have just found out that 2 family members have been diagnosed with pernacious anaemia so I am going to be asked to be retested for that too . I was low b12 but not low enough before and my folate levels are up and down like a bleeding yo yo .

    Ive known from the very start that my immune system is at fault but if they can get away with labelling you with ME in the UK they will .

    For the past few years I have thought that I probaly have more than one condition going on at once and thats probably why I am so ill , so I need to find a doc who will ignore the me/cfs diagnosis and look at the whole picture from the day I got ill and all the abnormal results I have had , if anyone can point me in the right direction it would be very much appreciated .
  20. pollycbr125

    pollycbr125 Senior Member

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    Oh I meet at least 5 on the beighton scale though several years ago this was totally ignored by rheumatologists in the UK . My feet have also gone flat this past twelve months and walking is becoming more and more difficult . Sometimes I feel like im being held together by tiny little strings and some day soon they are all gonna snap . I was also born with dislocated hips all of this has been ignored .
    Allyson likes this.

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