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!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
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

    29.6%
  2. no

    51.9%
  3. not sure/did not notice

    7.4%
  4. after several air flights

    7.4%
  5. I suffer bad jetlag

    18.5%
Multiple votes are allowed.
  1. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Sushi,

    Do they wheel you around it or you push yourself or how does it work? Are you in the wheelchair all the way up until the time you get into the place itself? Do OI/POTS issues get exacerbated just by being in a place?
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    I am one of the easy ones to diagnose with EDS. First my father had it and was diagnosed, and it was also obvious in my body structure from early childhood. I score really high on the Beighton Criteria. The manifestation of symptoms became more difficult over the years with more and more subluxations, stretched ligaments and tendons and ensuing pain. I have been seeking treatment for EDS for decades. I have the "classic form," so it is very easy to diagnose and most of my doctors have spotted it--including the osteopath I see at present.

    My history with ME was quite different--suddenly I was unable to stand and suddenly I had rather extreme autonomic symptoms. I had high titers for a number of viruses am positive for several of the infections associated with ME.

    HPA dysfunction is a medical diagnosis. It is not a genetic condition and is found in the majority of ME/CFS patients.


    http://www.holtorfmed.com/dr-pdf/Diagnosis Treatment CFS FM.pdf

    Sushi
    ahimsa and Valentijn like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    Hi Ocean,

    They push you and carry your hand luggage (many of the wheelchairs have a place for hand luggage). You usually get the wheelchair at check-in, they push you to the gate and tell the gate attendant to board you first. They will help you board if you need it.

    Then there is a wheelchair waiting for you at the door of the plane both for transfers and at your destination. They push you to the luggage pick up, grab your bag for you and either take you to a taxi or to the curb.

    I don't find OI issues worse from simply being in a plane, but from the sitting in an uncomfortable seat without enough room. I think some are bothered by the air-pressure changes and the dry air in planes though.

    Best,
    Sushi
  4. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thanks a lot Sushi. So, you don't have to reserve it in advance, right? You just request it when you arrive? Also, if you are with someone, does that person push you or does someone from the airport still do it?

    I'm one of the ones who is bothered by the dry airplane air, possibly the change in air pressure too. I'm hoping I could handle a flight of 1 to 1.5 hours but I'm not sure yet. It's good for me to start asking questions here and think about it well in advance of when I may want to try it. Actually before this post I thought I could do it and wasn't questioning it at all, but I think this thread brought up some anxieties, especially since my last flight did lead to a crash. But that one was a very long flight and there were other circumstances involved also.

    I'm hoping I can handle a short flight but I am nervous to try. I don't want to do anything to jeopardize the improvements I've made and this flight wouldn't be essential at all. It's something I want to do but don't have to do.

    I think some good ways to try to prevent a crash if I do decide to fly is to not take an early morning or late night flight, take a direct flight, make sure to rest in the day or days prior to and after the flight, use the wheelchair, and keep hydrated in the plane.
    Allyson likes this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    Ocean

    Yes, it is good to reserve it in advance though I think they would give you one even if you didn't. I have traveled alone but I've seen couples where one was in a wheelchair and an attendant was pushing it--not the spouse.

    There is no charge, they don't ask you why you need it, but it is good to tip the person who pushes you--they are often students.

    Good luck with this,
    Sushi
    Ocean, ahimsa and Allyson like this.
  6. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    669
    Australia, Melbourne
    OK great thansk Sushi ; i get it now.

    so they are only countiing your hypermobility and joint issues as the EDS smptoms; what if the same thing that caused those problems also affected your veins and other connective tissue , causing many of your ME syptoms as well? eg reflux ( lax pyloric sphiinter) IBS ( connective tiissue in the bowl, hence allergies and affected villi, IO/POTS ( lax or stretchy veins and supporting connective tissue) etc for all or most of the connective tissue in the body....RSI, TMJ, valves,.....so easy blooding and bruidig, trnange scars and stretch marks....

    That is basically what this professor is suggesting, and it seems highly likely for me.

    As it manifests differently in different people symptoms ......

    I for example have no joint hyperbobility - in fact i am extremely stiff, with very tight musclesad get frrequent muslce inuries.

    one of the main reasons this theory makes sense to me is the intermittent nature of many of our symptoms - why do we crash and recover? HPA axis problems don t really explai this for me.
    but interrupted blood supplly does.

    On the EDS sites people are talking about nearly all the same symptoms of ME in addition to the reccognnised joint issues

    do they all have ME as well? or are the two diseases the same thing and docs have overlooked all their symptoms that were not joint related ....and therefore visible and consitent.

    n ohter words the exact Same thing that has happened to us (without the joint issues).

    Now that BP measurements are being done acccurately however they are starting to see evidence of why we would have such problems and so are now taking them seriously

    ......food for thought.


    best,

    Ally
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    No, my doctors realize that EDS affects all connective tissue and can predispose patients to certain symptoms. However, EDS does not explain most of my disease--the primary markers being viral and bacterial pathogens.

    As I mentioned previously, I have had EDS all my life but ME was acquired.

    BTW, if you want to continue this discussion it would fit better on the EDS thread.

    Sushi
    Valentijn likes this.
  8. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    669
    Australia, Melbourne
    HI Sushi.

    not to be rude or insist on your conition .. b ut whey you sy you have had EDS all your life ... you mean the joint issues?

    It amazes me how many people on ME sites when asked about this say that they DO have EDS .... has the link between the two illnesses ever been expored I wonder? In your experiencce have you ever heard of a link?

    For my part i dislike the assumption that EDS is only hyermoblie joints or subluxations as that excuded people like me.

    the other thig is onthe ED sites peole say they get onset of symptoms at 20, 30 , years old ... so th idea that if it it conngential the sympotm must manifest form birth is erroneous.

    best and thanks again..
    Ally
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    Allyson

    EDS is a genetic condition--you have it from birth.

    And yes, the relationship between EDS and ME has been pretty thoroughly explored. As many have said (and researchers have explored), EDS is one of many genetic predisposing factors that can affect the manifestation of ME.

    This has often been discussed on the EDS thread and this discussion would be more appropriate on that thread.

    Sushi
    Valentijn likes this.
  10. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    669
    Australia, Melbourne
    Hi Sushi , thanks yes good idea to move discussion over to the ME thread

    I will go there as there are two points i think need to be clarified.

    Firstly, just because you have a condition form birth and it is genetic does not mean you have manifest (evident, apparent) symptoms form birth. Symptoms often do not appear from that condition til later in life. eg MS, Huntingtons, ....ME itself is thought by many to have genetic cause.

    Secondly the relationship between EDS and ME has not, to my knowledge been thoroughly explored - I have been engaged in research looking for link between the two for some time now and have found very little material - maysbe three of four published papers that come to mind.

    I would greatly apprectiate it if you have links to any more publications on the subject..... but yes, lets continue the discussion on the EDS thread....see you there.. and thanks again for all your useful input.



    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/

    Cheers,

    Ally
  11. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    669
    Australia, Melbourne
    why we get bad jetlag


    Vasodilation due to depressurisation from altitude
    plus dehydration from aircon
    plus sitting upright for prolonged period
    plus sitting STILL for prolonged period - no muscle movement to help venous return
    plus hot crowded environment
    plus lots of waiting around in queues and lounges

    If you happen to throw in alcohol you are a dead duck - that does most of the above as well so you get a double whammy

    these reasons above are why normal people get drunk more easily at altitude too - dehydrated so alcohol has a more potent effect.




    A
  12. Kina

    Kina Moderation Team Lead

    Messages:
    5,536
    Likes:
    4,077
    Ontario, Canada
    A simple answer would be that it's not just the act of sitting on an airplane that would cause a person with ME to crash.

    Consider the following factors -- packing a suitcase is enough for some of us to crash, then there is the physical trip to the airport (for me it's two hours or 4 or 5 depending on the traffic jams), then it's getting your luggage into the airport, then waiting in usually long line ups in a noisy, bright environment, then after that it's usually going through a security check with more long line ups, then it's waiting in the departure area which usually means standing because the few seats that are available are taken. The last time I flew was to Heathrow from Toronto back in 2007 and I can tell you being able to sit down on the airplane to rest is what I looked forward to.

    To mitigate the effects of dehydration, drink tons of water. Make sure you have an aisle seat so you can stretch can go for little walks in the aisle. There is one thing you can't avoid though is the cabin pressure causing a bit of hypoxia, which if you are prone to, will be greatly exacerbated. It is my personal belief that be able to use supplemental oxygen on a flight would be of great help to people with ME. Also having access to a wheelchair is very helpful at the airport.

    After getting off the plane, there are again long line-ups -- clearing customs, getting your luggage. Then getting out of the airport is another hurdle to get over.

    Does air travel exacerbate symptoms -- too right it does but why could be due to quite a few things. Considering that there are days when some us can't even get out of bed, it's not that shocking that air travel could cause a huge relapse of symptoms which isn't just down to 'jet lag'.

    I doubt air travel could actually cause ME/CFS -- maybe if there was a person who spread a nasty viral infection or something which set off a cascade of events where you never recovered. When it comes to catching an infection,there's nothing quite like being in a closed environment.

    It would be impossible for air travel to cause EDS since it's a genetic disorder present from birth. I suppose if you have been asymptomatic all your life, it could perhaps exacerbate symptoms into becoming noticeable. I do believe that air travel can make even healthy people feel like crap for a few days after they fly.

    Jet lag is related to a disruption of our circadian rhythms. Symptoms are caused by a circadian rhythm that is out of sync with the day-night cycle of the destination. Vasodilation, dehydration, venous pooling, environment, long wait times do not cause jet lag. These symptoms/issues seem to be related to reasons why one would easily crash before, after, or during a long flight. You can have all these symptoms on a flight that does not cross time zones. You can encounter these things without actually being on an airplane.

    My conclusion is that air travel would indeed exacerbate symptoms of ME due to a huge number of variables combined.

    I doubt that air travel alone would cause ME and there has been nothing to suggest that is would.

    The question is impossible to answer as there is no such thing as ME/EDS. If one has been diagnosed with both then one could attribute symptoms during air travel to one, the other or both.

    Also the questions are a bit misleading for me.

    DId your ME/EDS symptoms first appear after AIRPLANE travel?
    1. yes
    2. no
    3. not sure/did not notice
    4. after several air flights
    5. I suffer bad jetlag
    Perhaps either yes or no to the question 'Did your ME symptoms first appear after AirPlane travel in the absence of any other explainable factor? would have been better a better question.

    I am not sure how one could not notice they had ME.
    If you had symptoms of ME after several air flights, does it indicate that the first few flights have any correlation with the symptoms you later developed.
    Suffering bad jet lag is a whole different kettle of fish. I know extremely healthy people who suffer terrible jet lag. I would assume messing up your circadian rhythms would naturally exacerbate symptoms of ME -- for me turning our clocks forward and back messes me up and can instigate a crash.
    Valentijn likes this.
  13. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    So Kina, do you think if given the choice between a short flight and closeby airports, say airport is 20-30 minutes away on both ends, and flight is one hour or so, or being a passenger in a car to the destination, say 7-8 hours, which do you think is preferable for someone with cfs/me? One might be more exhausting due to its length while the other may be more so due to some of the reasons you wrote about above.
  14. PennyIA

    PennyIA Senior Member

    Messages:
    264
    Likes:
    354
    Iowa

    I would think it might vary per trip and person. I.e., I would almost always prefer a short flight, but then my economy car isn't the nicest ride. A really nice, comfortable seat with extra leg room would almost certainly make a long drive more comfortable (and someone else to drive, so I could knit - lol). On the other hand, I had one flight that was supposed to be 45 minutes that turned into the most miserable experience in my life. Combining extreme body odor (half the plane was struggling with a specific person) and pain meds without enough food to settle the stomach... along with an airport closing due to blizzard and five hours on-plane due to re-routing and returning once the airport was opened... and I would NEVER want to go through that again... and I don't tend to have issues with odors. Someone with chemical sensitivity is going to have much worse situations much more often when exposed to the large crowds without even adding in a lot of the other issues that come with plane travel.
    Allyson and Kina like this.
  15. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,339
    Likes:
    9,116
    Amersfoort, Netherlands
    Lots of good points here. I have to agree that the flight itself has little or no impact on my symptoms.

    I did a 9 hour flight in one direction with very little disabled assistance in the departing airport. Tons of walking, standing in lines, etc. I collapsed into my chair (a great relief) and spend the first few hours of the flight in a really bad state. I was able to sit with my feet up, and slowly recovered somewhat - OI got better, though legs were still very shaky.

    On the return flight, I had great assistance at the airport. Wheelchair ride everywhere, stoop up briefly to walk a few feet through Security, and again to use the bathroom, and then to walk a few feet from the door of the plane to my seat. And again, was able to sit with my feet up after take-off.

    After the first flight I was in very bad shape. Basically crashed for a couple weeks, laying down on my parents' couch. Luckily it was a long visit, so I didn't spend all of it on the couch. After the return flight I was tired due to having been up for 36 hours or so, but no crash, no OI problems, etc.

    It's the airport that causes all of my symptoms, not the flight.
    Ocean likes this.
  16. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,339
    Likes:
    9,116
    Amersfoort, Netherlands
    I'd prefer the car. A lot more personal space, complete control over food, water, etc, can stop and stretch pretty much any time. And I'm flexible enough that getting my feet up on the dashboard is pretty easy if I'm having OI problems.

    Airports also can involve long waits for ticket counters, security, boarding, retrieving luggage, etc. Good disability support at the airport can offset the misery, but it's a bit of a crap shoot. Some airports are great, and some are horrible.
  17. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I like those same advantages of the car too. But I wonder if a long car ride would be too much for me, especially if it's only the beginning of a trip. The plane sounds nice in that it would only be a few hours total, door to door. But then there's the issue of being stuck in a close space with tons of people some of whom are probably sick, and dealing with all the airport hassles and all that. I can't decide which way is better!
  18. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Good point. I was on one flight where a woman was putting on nail polish, the smell was awful. She has a hard time understanding why I asked her to stop!
    Allyson likes this.
  19. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    669
    Australia, Melbourne
    OMG i would have thought nail polish illegal on a plane.

    Yes i have walked iinto a room where someone was applying nail polish and the fumes are obnoxious.

    There are apparently brands around now that are less toxic - like butter london - but still... is it worth it?
  20. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Yeah in a small enclosed space like that it was awful!
    Allyson likes this.

See more popular forum discussions.

Share This Page