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

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

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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. Allyson

    Allyson *****

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    Hi, I am interested to know how many people found their symptoms came on or got worse after air travel.


    Also as a separaated question could you answer if you suffer jetlag badly and for how long please.

    Thaat is you can tick two or morboxes. Many thinsk in advvance for any replies.
  2. SickOfSickness

    SickOfSickness Senior Member

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    I put not sure. I think my ME/CFS was from an overloaded immune system. I think my OI is related to EDS and might have started or gotten worse because of air travel.
    Allyson likes this.
  3. PennyIA

    PennyIA Senior Member

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    My illness started around six months after suffering a massive, bilateral Pulmonary Embolism. I had flown about three years previous from the USA to England and back and suffered some pretty severe jetlag, but recovered fairly quickly. I did have an extremely short flight Iowa to Michigan a couple of months before I started getting ill. But since I'd just had some blood clots, I was hyper-aware of my medical state after that short flight because I knew that it was possible for me to develop clots and the doctor wanted me to take note of all my symptoms at the time - but really didn't experience any discomfort during or the weeks after the flight - except the symptoms I had from before the flight, which were still getting better as I was healing.

    I honestly wonder if it's tied to the 'shock' my body went through with the PE combined with the standard treatment of Folic Acid (wrong form), B6 (wrong form) and B12 (wrong form) the doctors had me go on due to high homocysteine identified after the PE. Now that I know more about MTHFR, I think I was slowly poisoning myself - I've tested toxic for B6, sky high for B12 and the doctors are still refusing to test me for Folic Acid (because it's supposedly not possible to get toxic from taking the standard form of Folic Acid). I'm not seeing those doctors anymore. I'm focusing on dealing with my methylation issues instead.
    Allyson likes this.
  4. maryb

    maryb iherb code TAK122

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    I got an inner ear virus 12hrs after getting off a plane. It never went away..........
    Allyson likes this.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I flew eight days before I got sick and back again the day I got sick. I don't know about jet lag because I have never traveled more than two time zones.
    Allyson likes this.
  6. Allyson

    Allyson *****

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    Thanks for the replies guys - interesting
  7. Allyson

    Allyson *****

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    )
    Thanks Penny - srry to hear the health problems; I just had a MTHFKR gene test done yesterday

    I saw a geneticist today who siad so far it can only tell us about thrombosis.
    (more on that on last post in this thread....


    http://forums.phoenixrising.me/index.php?threads%2Fis-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351%2F

    He thought IM b 12 might help as like itamins c it is viatal for making connective tisue.

    i wonder about airfight - they hae made the link with DVT s now but i wonder if PW EDS/ME are more prone to thromboses due to the stretcy veins allowing blood to pool - sitting still, upright and in a hot environment would not help. OS many people think their ME stareted after a flight.....intereting area to reesearch.

    Thnks again everyone for the thougthful replies.

    Allly
  8. SickOfSickness

    SickOfSickness Senior Member

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    PEM is a worse problem than jet lag for me. The PEM sometimes helps my jet lag if I need to go to bed earlier in the new time zone. (I can fall asleep early because I pushed myself physically.) It's hard to be having PEM and also stay up later. I can do it the first night but not the second or third.
    Allyson likes this.
  9. Valentijn

    Valentijn Activity Level: 3

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    I think this question is impossible to answer because you are suggesting that EDS and ME/CFS are the same thing. EDS, however, is a purely genetic condition that is present at birth. ME/CFS is a condition that develops some time later, usually following an infection.

    Additionally, EDS has many symptoms not typically present in ME patients, and ME has a major (defining) symptom which is not part of EDS - Post-Exertional Malaise. People with ME are usually very healthy, lacking either ME or EDS symptoms, prior to developing ME - which rules out the possibility that it is an entirely inherited genetic disease.

    If someone is not experiencing PEM and is experiencing lifelong EDS symptoms, then they have likely been badly misdiagnosed. And while it is remotely possible that people with very mild forms of EDS are more susceptible to developing ME/CFS, ME/CFS and EDS are still very different diseases based on their very definitions.

    EDS is not ME/CFS.
    Sushi, Blue and valentinelynx like this.
  10. valentinelynx

    valentinelynx Senior Member

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    I agree with Valentijn. I don't think it makes sense to think that all ME/CFS cases must be misdiagnosed EDS. Sudden onset EDS symptoms doesn't compute. I was at peak fitness when I became ill (at the age of 31) and had never suffered any of the symptoms associated with EDS (yes, even though I am more limber than most people). Airplane travel never bothered me before I became ill. Now I hate it because the stress and exertion wipes me out, and the uncomfortable seating makes my pain worse.

    However, I hope that people who truly do have EDS get the appropriate diagnosis and not lumped in with those with ME/CFS out of physician laziness.
    Valentijn likes this.
  11. Allyson

    Allyson *****

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    Hi Val, nice to hear form you after a long time!
    no i am not saying they are the smae thig or for everybody - but so far myself and at elast 30 ohter have got doagnsed withe EDS - or already had the diagnosis as well as ME and did not put the 2 toghether.

    Well it is possible to have both

    MS is a gnetic illness that often shows no symptoms till later in life and so is muscular dystophy ofhen, so is huntingtons and many other genetic conditions.

    An i think researhc in to EDS ahs been so minimal that many epopl ewith it have never been diagnosed so we do NOT knwo all the symptoms yet - for example they onth EDS sites are compoining about sleep issues and brain fog ... and gues what ??? the doctors of ten do not listen to hta tbecause they are invisible so do not list it in their papers.

    I myself had brain fog for over 20 years before i heard the term and it took me another year or so to realise i had it .. now i see it occurs only after i have been upright - if i stay i bed 2 weeks I have NO symtoms at all? Nada, zip , feel fit as fiddle - till i get up

    what else can expalin that?

    I have severe PEM - not sure if it is an EDs symptom or not and it is really too early to state it categorigcally I owuld say. Here ian a lecture from atop rheumy on doctors percetptios of EDS - most think it has no debilitating effect - but all the patients say they are totally debilitated like PWME.

    takes a while to openn but well worht it.

    World-renowned EDS expert (rheumatologist) Dr Rodney Grahame (University College London) points out that, in America, almost 650,000 cases of EDS are missed ANNUALLY, based on studies that suggest almost 95% of cases presenting to clinics are missed, most often diagnosed with other things (fibro,ME/ csf, etc.). -

    See: http://tinyurl.com/cc5qk57


    and found this while i was looking too

    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.'
  12. Allyson

    Allyson *****

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    no i am not saying all ME are EDS - but many are and it is a shame to miss this diagnosis for want of knowing about it

    the question was for this thread - did flying coincide with your initialonset of symptoms if you can remember


    this is my own theory -


    i know it did for Tony Bernardt and many others And wonder why?

    many say - oh it must have been a virus, stress, etc etc - - but we do NOT know - so why not look at all options?


    Many of us were also at peak fitness - myself included -but so are many with other tragic genetic illnesses - think of Jacqueline Du Pres.

    most of the symptoms of EDS are actually identical to ME symptoms - that is why the diagnosis is missed

    David Suzuki on science - paraphrased

    it is not scientific to just dismiss anything simply because it is a new idea or you do not like it

    examine it first, test it , then decide to dismiss it ( if it doe nto stand up to the scientific testinng)

    EDS has never been tested and that is all i am asking - for discussion and consideration of it

    the general theory is not mine at all but was told me by a senior professor of medicine at a major teaching university who is investigating it.

    He is the teacher of tomorrow's doctors so i am glad he is believing us at last

    HE told me " I used to be skeptical (about our alleged symptoms!) .....

    BUT SO MANY PEOPLE SAID THE SAME THING that i had to innvestigate it and now i believe it.

    cause and efffect - we do not know

    I saw a meme recently that said -

    BIRTHDAYS are good for your health
    Research has shown that people who have more birthdays live longer..



    'Airplane travel never bothered me before I became ill. Now I hate it because the stress and exertion wipes me out, and the uncomfortable seating makes my pain worse.'

    But sitting in a plane is not exertion for most people ....boring , yes , but WHY does it wipe us out and not most people? I know many people who are over their jetlag in 2 days.

    My docs explanation - the vasodilatation caused by altitude ( to which I add, the heat, the sitting still and sitting upright , the dehydration due to airconditioning and heat.)

    He says many people find out they have EDS when they go mountain climbing tfor the first time ... and drop dead!

    due again to the depressurisation which is major - flying in a plane is like climbing to 9000 feet

    (He is head of a major Spinal Unit so i think he knows of what he speaks.)



    Sudden onset ME symptoms do not compute either - but maybe they were subtle or masked for many years.

    Anyway, within a year of two they will have a gentic test for EDS and that will resolve it the matter....

    I have a firm diagnosis and am annoyed to say the least that it took over 25 years to find it so am sharing this information to hopefully save SOME others the wait and lost lives....

    but really sometimes i despair - i would have thought PWME of all people would have open minds at least .......after all we have been through with people not accepting that our symptoms are even real.
  13. Allyson

    Allyson *****

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    no it is just a question Val ... it is easy to answer

    - did your symptoms first seem to come on after air travel ?

    i guse yes, no , dont know and dont remember woul be liekly choicesl


    Mine did ...many others' did...some do not know or do not remember.

    all the rest is discussion about the causes, likelihood, credibility etc but the question is still there if you get my gist.

    My point about the PEM if i did not make my sef clear is - so many poelple like me have been undiagnosed with EDS that we simply do Not know yet if PEM is symptom or not


    - and hypermobility is not the same thing as EDS - you can be hypermobile and NOT have EDS. So lot s of people with EDS do not have recognised symptom onset til later in life....for whatever reason.

    I did not realise when i fainted at 12 that that was a symptom of EDS yet it is apparently , then i was well until migraines at 18 - another symptom of EDS I am informed . then muscle weaknes - transient .. brain fog "fatigue" .....downhill form there .. who know s where it ends?

    (CCF ? Infarct? Stroke? we just do not know as the long term research is not there as so many poeple remain undiagnosed)

    And again you say - onset is "usually following an infection" but firsty that is not the case - millions do not have onset that coincides with infection and even if we all did, that co-incidence does not prove a causative relationship - PWME get lots of infections with this illness - i get one every 2 months and the first one may have been coincidental with symptom onset..

    An example - I remeber they used to think elderly people ofetn fell over and the fall caused a fratured neck of femur (#NOF) ; then someone realised they had osteo or similar so the #NOF was weak and snapped - and the fracture of the NOF actually caused the falls.
    never heard if the theory is true so do not quite it but it was an interesting new perspective of th kind we should remain open to.
  14. Allyson

    Allyson *****

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    thaks for the thoughtful reply Penny and sorry to hear of your health problems.
    I am surprised to hear your B 12 was sky hihg - i was under th impression that th e body did not store it - it is exceterd rapidly so did not realise levels coudl go high ///av ei been msinformed?/

    I have just had the MTHRFKR geene test too and am awaitig results,

    best,
    Ally
  15. Allyson

    Allyson *****

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    Just turned on the tv and caught a progam about epigenetics - that could also ezplain a lot

    I was not aware there is a gene test to exclude ME/cfs?

    ie has it been proven that there is NO genetic component to it?

    Actually I also remember Dr Don Lewis at the last ME/cfs Australia conference said that his research indicated there was a likely strong genetic component to the disease ME /cfs - saying it is more prevalent in "viking populations"

    thanks for the feed back
    ALly
  16. Valentijn

    Valentijn Activity Level: 3

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    A genetic component for ME is very likely, just as it is for many diseases. But there is a big difference between a disease (ME) probably having a genetic component and a disease which IS genetic and present from birth (EDS). And the genetic component, in the case of ME, -has- to be triggered by something else to explain sudden onset of severe symptoms. Whereas in the case of EDS it has been present since birth and symptoms will not be suddenly emerging or massively changing, aside from an acute manifestation (not a chronic one), when something bursts, etc.

    And while ME and EDS do have a few common symptoms, ME has symptoms in common with dozens of diseases, some to a far far greater extent than EDS. It is extremely unlikely, if not impossible, that ME is really undiagnosed EDS. The two diseases have almost nothing in common.
    helen1 likes this.
  17. PennyIA

    PennyIA Senior Member

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    NOTE: This response is my internatl interpretation of the logic that has been explained to me.... I have yet to find enough scientific studies that help me validate it.

    I think that for folks with a normal methylation cycle - it's true that the body would excrete excess. Which makes sense in a way. If your body is able to break down and utlize the viatmins/minerals properly - get them into the cells our out through the urine when in excess, then your levels would never climb as high as mine have.

    I've also been told it's impossible to overdose on a standard dosage of OTC B6. Yet, my blood tests came back with toxic levels. I was taking a single capsul of B6 (the standard form) daily. Apparently, if your methylation process is normal: you have to take excessively high doses of B6 to overwhelm the bodies ability to excrete it in your urine.

    But, when the methylation process is broken - it has trouble breaking them down correctly for use and trouble eliminating them as well - so they just float around until the body does it's best to protect them from you by storing them in muscles, similar to how it handles toxins.

    Which testing are you having done? I originally just had the MTHFR testing done through my MD - and it only tests for two genes - the MTHFR C677T and the A1298C. I came back homozygous for the second, but when I went to www.23andme.com I ended up discovering a whole boat load of genetics that impair several points along the methylation process pathway.

    I've heard tons of folks say that having only one heterozygous marker of the two most common genes tested - getting told that it can't impact their health - but then I wonder if they move on then to another theory and never follow up to test the remaining genes to find out that perhaps the issue they have just isn't the common-culprits?
    Allyson likes this.
  18. Valentijn

    Valentijn Activity Level: 3

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    Then please stop saying they are the same, if that is not what you mean. You have made many posts lately saying that, and posted to many unrelated threads saying they must be the same. Then creating this "ME/EDS" terminology on top of it all is completely unfounded.

    Options have been looked at, including EDS. But not all possibilities are equally likely, and EDS is very unlikely to be the same as ME/CFS.

    PEM - not an EDS symptom.
    Sleeping problems - not an EDS symptom.
    New food allergies/intolerances - not an EDS symptom.
    Hypersensitivity to sensory input - not an EDS symptom.
    Flu-like symptoms - not in EDS.
    Sensitivity to chemicals - not an EDS symptom.


    It has been examined, and pretty much dismissed. There are few shared symptoms, completely different methods of acquisition, etc. There may be some shared characteristics or mechanisms, but that's true of ME and many other diseases with far more in common than ME and EDS have in common with each other.


    Many diseases have orthostatic intolerance as a component. Two diseases having the same symptom does not make them the same disease, especially since there are many types and causes of orthostatic intolerance.

    I'm glad you seem to have found the answer for yourself. But you are not being open-minded yourself when you insist that everyone else accept that they have received the possible misdiagnosis that you may have. If you want to share an idea, or information, then the usual way to do that is by starting a thread. Not by turning any discussion of ME symptoms into an "ME is EDS" thread.
    Sushi likes this.
  19. Ema

    Ema Senior Member

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    Air travel can be more difficult for those of us with HPA axis dysregulation because altitude causes an increased need for cortisol to maintain homeostasis. This is well documented in the literature. Many cases of altitude sickness are treated with dexamethasone which is a synthetic glucocorticoid drug.

    Here is an article that discusses it as well:

    http://www.highaltitudemedicine.ie/index.php?view=article&catid=38:physiology&id=113:high-alt..

    I would think that it is much more likely that the ill feelings after air travel are related to a lack of homeostasis kicked off by low cortisol and an inability of the HPA axis to properly respond to stressors such as altitude. This would also make sense in terms of jet lag. Cortisol and melatonin are intricately involved in the circadian rhythm which is what is disrupted in jet lag.

    I've had EDS my whole life and had no trouble with air travel (or anything else, really) until adrenal insufficiency was uncovered. EDS may have predisposed me to other conditions but it is constant while ME/CFS symptoms have followed a relapsing/remitting pattern.

    Ema
  20. Allyson

    Allyson *****

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    Hi Penny - i just hat the mthfkr test done and have not got the results yet

    but the gebetisit i saw for my EDS diagnosis said so for it is only proven to be reliable as a predictor of thrombosie - everything else is anecdotal.


    As to EDS testing if that is what you mean in the last line - he said he could test now but it would involve testing for 300 to 400 genes. Iimagine each gene test costs several hunderds of dollars so that is as he said , impractical at the moment but it will happen in the next couple of years.

    Best, and thanks for the thoughtful reply.

    Ally

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