1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

DId your ME/EDS symptoms first appear after AIRPLANE travel?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, May 5, 2013.

?

DId your ME/EDS symptoms first appear after AIRPLANE travel?

  1. yes

    28.6%
  2. no

    53.6%
  3. not sure/did not notice

    7.1%
  4. after several air flights

    7.1%
  5. I suffer bad jetlag

    17.9%
Multiple votes are allowed.
  1. PennyIA

    PennyIA Senior Member

    Messages:
    272
    Likes:
    356
    Iowa
    I do think there is a lot of talk about methylation (really the only thing I was referring too)... is anectdotal and a lot of it unproven. I think that it is NOT the answer to everyone's chronic illness.I know my old Internist was very dismissive of this being an issue. However, I do believe that there is more to it and it's just going to be a matter of time before we figure out how to study it and identify the real depth of it's impact on health. Which is probably somewhere between nothing but a clotting risk and the answer to everyone's prayers.

    That said. I do think that there is a subset of folks who are suffering from chronic illness and that subset is responding well to methylation treatments. I found a specialist I am working with who is an integrative MD and has had a lot of luck helping people with cfs with methylation defects. I know I'm just starting my treatment journey, but already seeing some improvements and I've really only been seeing the new doctor for a week.

    My last remission was related to my starting methylation treatment without the genetic results and without MD guidance - and I really wasn't addressing all the 'moving parts', let alone the 'deadlock quartet'... so I still have hope it will help me - albeit conservative hope.

    Of course, who knows how much it will really help in the end... that's something that I will be figuring out for myself with my doctor's assistance.
     
    Allyson likes this.
  2. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    thanks for that Penny; tht is interesting and helpful ( and refreshingly polite!)

    I think - and my doc sid this first actually - that there is so much going on and so much variation from day to day that is exremely hard to know what , if anything is actually really helping and what is just day - to day variance in symtoms.
    We just need so much more research and as it is so complex that research is likey complex, expensive, time- consuming.

    Thanks again for your input.

    Ally
     
  3. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    How do you get diagnosed for it? I'm curious about this conversation since I was considering a short flight for the first time in years. Now, I'm questioning it after this thread.
     
    Allyson likes this.
  4. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    Hi Ocean - you need to see an INFORMED specialist

    like ME it is something a lot of docs - and others - do not know anything about at all.

    my diagnosis was by a blood pressure specialist looking ino my OI/POTS who did extensie BP piulse testiga nd 48 hr halter monitor

    He then took an extensive personal family history - over 2 hours in the appt

    I then had it corroborated a few days ago by a geneticist - again by symptoms history, family history and physical examiation

    bot h these docs are senior medical staff at one of Australia 's top universitys and - 2 different - major teaching hospitals.

    where abouts r u?
     
  5. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I'm in the US. Could you tell me more about what they look for if you don't mind as far as symptoms and family history.
     
    Allyson likes this.
  6. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    but the main thing is , Ocean it is still very much like ME - so many people are ignorant of it and so little research has been done

    many people think it is "just " hypermobiity

    many docs ignore all the other symptoms that seen to be identical with many of those of ME

    ie the "invisible" symptoms - but if you go to the EDS sites people are listing all the same symptoms as us including sleep issues reflux IBS and pain and brain fog ...but they often do not connect them ...and like us they may take many many years to get a diagnose - 10.20 30 i have read recently.

    so these innvisible symptoms do not get listed or paid much attention when the disease is described.

    cheers,
    ALly

    many doce think - genetic heart eyes
     
  7. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thanks. I'll have to do more research on it.
     
    Allyson likes this.
  8. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    sorr y


    sorry that possted too soon Ocean

    just lookig for the symtom list for you meanwhile i found this may be a start

    Ehlers-Danlos Syndrome is a group of genetic collagen defects that affect a very wide array of body systems in a surprisingly wide variety of seemingly unrelated ways, including everything from painful "loose" joints to the GI tract, vascular system, teeth, feet, eyes, mood, insomnia, migraines and sensory processing to name a few. This lends to the challenge of diagnosing the condition as patients end up seeing an equally wide array of doctors and specialists in their sometimes decades long journeys to being diagnosed. Symptoms can vary equally widely in severity and nature of onset, adding to this challenge for both patients and doctors. Some experience just one or two problem joints going out easily or repeatedly at first. Others start experiencing fibromyalgia and widespread joint and muscle pain, weakness and fatigue initially. Many experience migraines and lots of food and drug allergies or sensitivies. ...... It often comes as a great relief to know there may be just one underlying condition responsible for so many issues in a person's life. We like to say Ehlers-Danlos Syndrome isn't rare, it's just rarely diagnosed.'
    EDNF


    more soon

    ally
     
  9. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    here are some notes from the gentic appt Ocean which gives you an idea of what to look for

    They have booked me in for a cardiac ultrasound on me prior to my appt. - everyon ehwi ny kind of EDS all types shoudl have a cardiac ultrasound as a matter of urgency is the latest news - not just the vascular type as once thought.

    They phoned and a nurse asked a full history including my symptoms, all siblings and parents' symptoms and who of the siblings had had kids and their symtpoms ; ( they started a family tree on the phone)

    They were interested in things like Gorlin's sign - who was positive ( ie can touch nose with tongue)

    stretch marks? Are they large and unusual

    any clear skin that you can see the veins through

    Other symptoms: ,migraines asthma, excema, allergies, hay fever, aneurysisms, hernias, haemoerroids, nosebleeds, easy bruising, slow wound healing, unusual or excessive bleeding

    skin tags, sore joints, arthritis

    unusual scars (eg with white tissue in them) - this occurs esp on lower legs

    ??double jointedness/ hyperflexibility (they were not SO interested in this)

    POTS/OI - they will request my 48 hr halter monitor and BP readings from my specialist prior ot my appt.
     
  10. valentinelynx

    valentinelynx Senior Member

    Messages:
    194
    Likes:
    68
    Tucson

    You misunderstood me. I didn't say sitting on the plane was the exertion. It is getting packed, getting to and through the airport with the luggage, to the gate, waiting in line, the layovers, the crowds, the delays and cancellations that are the exertion.

    The airplane seats are just d*mned uncomfortable!
     
    Valentijn likes this.
  11. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    thanks Val for clarifying

    I still think flying does not bother well people as it does us.

    But how can you tell what it is that knocks us out? whether it is all the bother or the flying - waiting in line and stopevers all involve lots of sitting and standing...... which are both really bad for anyone with POTS/OI/EDS,even withouthte heat and altitude.

    my specialist could tell when i had been in the supermarket (after he put on the halter monitor) my pulse went up -
    all that standing and slow moving means you are not getting enough blood pumped up to he heart and brain in the abscence of muscle movement - esp in the legs.

    It does not get more serious than that in ay area of medicine - insufficient blood to the heart and or brain is s critical emergency in any light.


    cheers,
    ALLY
     
  12. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne

    this might be of use too Ocean,

    - thereis not a lot of reliable or up-to - date info onthe web yet as it is all so new

    from Mark Martino EDNF...who kindly gave permission to share.

    However, most people wind up at a geneticist's office because it's hereditary, or at a rheumatologist's office, because it's connective tissue. Rheumatologists in the US, however, seem to be a generation behind the rest of the world, except for individual excellence, they probably should be avoided in the States.

    Diagnosis is done through examination. An EDS exam for diagnosis probably will include testing skin for what it feels like, how much it stretches; the Beighton Score or the newer Brighton Score http://bit.ly/X8dVFY for testing hypermobility, taking a look at your medical history to figure out what EDS symptoms you may shown in the past and whether you inherited EDS. It ...[should] also include an echocardiogram.... or other tests depending on the symptoms and doctor. .....

    [NB IMO you do NOT need to be hypermobile though, to have EDS - there is likely a musculo- contractural type typified by very thight muscle tone - Ally]

    There are cases in which multiple collagen genes are found in genetic testing to be mutated, but clinically, since EDS is still diagnosed through clinical signs, the type that has the most matches to your symptoms would be the type diagnosed. This may change, of course. EDS is still a young syndrome as it's less than 100 years old as a named disorder, although cases have been described through history of what would probably be called EDS today; and the current diagnostic system was established in 1997, so it's less than 20 years old.

    There are genetic tests for most of the types that can confirm a diagnosis, but can't be used to rule one out in most cases; if you don't test positive genetically, that doesn't mean you don't have EDS. We simply aren't sure of all the gene mutations yet. The exam for EDS is a good, thorough basic physical examination. Classic type has a test that catches more than 50% of cases (and perhaps as much as 90%); Hypermobile type has no test, although there's a possibility at least one of the causes may have been identified. The test for Vascular type is 98+% accurate now; the rarer forms also have well defined tests.

    There are some doctors who refuse to diagnose EDS because it's so rare—this is just bad logic; of course it's rare if no one diagnoses it because it's rare. Rarity of a disorder has nothing to do with whether or not it applies to you personally. You will find doctors who don't want to diagnose it because it's not curable. Remind them that even though it has no cure, the symptoms can be treated, and knowing you have a type of EDS gives you and your medical team some idea of where problems might come from and why they're happening; if there ever is a cure, at least you'll all know to use it; and the more of us who are diagnosed, the more likely it is EDS will get the attention we all need and the more likely researchers will work on finding a cure. Even knowing what type you have, your own case of EDS will be your own case; while knowing what might happen is helpful, you'll probably have only a subset of symptoms and not the whole set.

    EDS are a collection of genetic collagen defects. Each type of EDS is defined as a distinct problem in making or using one of the types of collagen. Collagen is found throughout the body. Ehlers-Danlos syndromes come down to a structural problem. An analogy. If you build a house with bad materials, say weak wood or cheap nails, you know you'll have problems. Some problems are more likely to show up than others, but because the bad materials were used everywhere and aren't necessarily visible, you can be surprised by a problem. It's the same thing with EDS and collagen. The collagen you're built with is not structured the way it should be. Collagen is what the body uses to provide strength and elasticity to tissue; normal collagen is a strong protein that allows tissue to be stretched but not beyond its limit, and then safely returns it to normal. WIth a badly built or processed collagen, some of the tissue in your body can be pulled beyond normal limits, causing damage. Collagen is the most abundant protein in the body and can be found almost anywhere, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on.

    So the problems resulting from being built out of a protein that doesn't behave the way it should can be widespread, in a wide range of severities, and maybe even show up in places you wouldn't think are related until it occurs to you that collagen is used there, too.

    Each doctor you see is going to look at things differently. Endocrinologists see hormones as the problem, or CFS. Rheumatologists in the US think fibromyalgia's the problem. Surgeons see weaknesses that need surgery. And if none of them are remembering that EDS is the root cause, and maybe their solution won't work in that environment of your body, they may be inappropriately treating you.
     
  13. PennyIA

    PennyIA Senior Member

    Messages:
    272
    Likes:
    356
    Iowa
    Thank you for sharing so much more detail about EDS. I do think it's something that I'd like to dig deeper into... while there are some things that are in the list that don't apply to me (which is why I disregarded it initially from my own research) - knowing that EDS is different for everyone helps me see that I might still need to do more research.

    One thing that has spawned a lot of conversations with my doctor is that perhaps one of the reasons that so many people are so ill with chronic, undiagnosed chronic illnesses -might be that there's more than one thing going on.

    Which he just shakes his head and say, no - that's very unlikely.

    Then I remind him of the fact that I had over ten trips to the hospital where I had 'classic, textbook' scans proving I had pluerisy in a one year period. Followed by my eleventh trip in identifying that I ALSO had a gallbladder that had been going bad for over three years and needed to be out within two days.

    Which does not mean that I didn't ALSO have pluerisy. I had both. They just quit looking when they found the first explanation that made them happy about my severe pain.

    And then the second conversation that we have that goes round and round. I understand Occam's Razor - the simplest answer is usually correct. And/or when you hear hoofbeats, that doesn't mean it's a heard of zebras.

    BUT - if you've ruled out all the simplest answers. That's when you have to start looking for zebras, or less common things. Again and again, he'll refuse a test because 'well, that's really rare'. OK. But I am an individual. And I already have at least ten health experiences in my life that were 'rare' and hard to diagnose. If I left all my research to him, he wouldn't be looking for any answers - I am simply 'undiagnosed' in his opinion with symptoms that include chronic fatigue and chronic pain along with nuerologic symptoms.

    I love the part about the - even if there isn't a cure today - just having that label helps you identify the types of symptoms management that might be helpful as well as set you in the right place so that if a cure is identified you'll be first in line for it. As well as raising the awareness of the condition and helping confirm that it's not as rare as originally believed.

    My regular MD refuses to apply the cfs diagnosis to me even though I have almost textbook symptoms of it with pain, PEM, etc. But we have to keep fighting the fight and exploring our options. That's why I'm working with an MTHFR expert. Worst case scenario is that I spend a little bit of money on supplements (far less than the early MRI scans every six weeks) and I don't feel any better. Best case, although at this point, I'm still somewhat skeptical - I get better. Middle ground? It either gives me some remissions - OR it alleviates SOME of my symptoms which might be enough to diagnose a second overlapping condition.

    Same irritating doctor gets a little 'anxious' every time I mention that my immunity is lowered. But it is. I catch every bug that goes around and I have that cold three times longer than everyone else. That sounds like a compromise immunity, to me. Which makes it even more likely that an infection (regardless of source) might have gotten it's hold on me and might be aggrevating what might not be so serious of symptoms from MTHFR.

    I guess that'e enough rambling. But, when it comes down to it, the reason we don't have all the answers already is because this is not cut and dried simple. It's going to take looking for zebras and looking at things with new eyes or they are never going to find answers.
     
  14. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thank you for all the info. Now, if I don't have EDS, should I still be worried about flying beyond the usual issues of exertion? Is a short flight that severe of a problem for CFS/ME or mainly only if you have EDS also?
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,064
    Likes:
    6,027
    Albuquerque
    Yes, the standing in the supermarket, the standing and sitting involved in flying--all certainly can lead to insufficient blood to the heart and brain, but this is more likely an autonomic problem for most of us--OI, POTS, NMH, etc.--rather than EDS. And yes, there is a certain amount of crossover between EDS and ME (a certain percentage of ME patients also have EDS), but ME is something that develops sometime after birth--seemingly with a coincidence of several factors (usually including a viral or bacterial infection)--and EDS is there from birth.

    I do have EDS but flying never bothered me until I had ME, nor did supermarkets. Even now, though flying is very tiring (partly because it is a whole series of physical and mental stresses, beginning with planning, packing etc.) I recover from jet lag in about the same length of time as a "normal" person.

    I think it is misleading to try to equate ME with any other illness. Sure, there are misdiagnoses, but these are misdiagnoses not one illness equaling the other. With EDS, there are just so many critical differences from ME. This isn't just a casual comment. Because I do have EDS I have investigated this thoroughly as has my ME specialist.

    Best,
    Sushi
     
    ahimsa, Ema, Valentijn and 1 other person like this.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,064
    Likes:
    6,027
    Albuquerque
    Hi Ocean,

    I have EDS and flying is not a problem for me due to EDS--it is the exertion, stress, lack of sleep, prolonged sitting that gets to me and this is because I have ME/CFS. I counter this by requesting a wheelchair from the airline. They usually take good care of you then and you don't have to stand in any lines.

    I think the issues of flying are mostly because they exacerbate the issues of ME/CFS. I have always had EDS and flying was never a problem until I had ME/CFS.

    Best,
    Sushi
     
  17. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    Hi Sushi thanks for the feedback but i do question it


    Many people with EDS do not report symptoms til later in life

    and i do not think - with all resepct - that you can know the differences - for example standing in a queue is not inherently stressful.....why do we crash after that ? sure it may be due to POTS/OI .....but EDS causes POtS/OI too ...i think there is still lots of questions to be asked and we cannot trust our feelings for REASONS.... but only for symptoms. you may well be very right but it has not beeen tested IMO.


    I am surprised how may say on this site they already have a diagnosie od EDS - an illness i had neveer heard of before last year nad i helped my sister study thought med school lol.

    does that diagnosis just involve hyper mobility? Lots of docs ignore the invisible symptoms of EDS as they do for ME - so they do not list or include them in diagnostidc criteeris - but the EDS chat sites ar full of comments lies ours - and may do not get sick or diagnosed til later in life -

    an i am not hypermobile at all so i would be excluded itf that were the only criteria.

    Also just because a disease is genetic does not mean it manifests form birth - by any means
    think ?M E, epilepsy, diabeties type 2 and one for that matter, Huntingtons, MS etc etc Lou Gehrigs...


    best and thanks again


    ALly
     
  18. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    Hi EMa and thanks for the reply and link; gorgeous dog - I always wanted a golde retriever but was too ill - now i have a cat equivalent - long haired golden turkish van! - all the beauty, half the love, twice the catronising attitude lol.


    COuld I ask - did you Know you had EDS your whole life and how ... are you just referring to hypermobility symptoms or the full catastophe? I am surprised how many PWME say the DO already HAVE EDS!

    many thanks

    Ally
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,064
    Likes:
    6,027
    Albuquerque
    My very thorough Tilt Table Testing by an autonomic specialist (who was also well educated about EDS) provided a lot of clarity about what was going on that gave me problems with standing--it was autonomic dysfunction, vagus nerve dysfunction, HPA axis dysfunction. Later, while seeing an ME specialist I learned that viral and bacterial infections also exacerbated my OI and by treating these, my OI has improved.

    While EDS can be a genetic predisposition for OI in some patients, many OI patients do not have EDS.

    Sushi
     
    ahimsa, Valentijn and Allyson like this.
  20. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne

    Thansk Sushi - how do they tet for HPS axis dysfunction?

    And on what basis then did thy seaparte the EDS - ie how did they make that diagnosis do you know?

    I am surions as to how they searate things out - esp i light of the fact that all the EDS sites are full of problems like you see in ME/OI and POTs

    thanks indeed for tht thoughtful replies - much appreciated.
    Ally
     

See more popular forum discussions.

Share This Page