The Call for Opposition: Challenging the P2P and IOM Processes
In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes...
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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. Allyson

    Allyson *****

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  2. Allyson

    Allyson *****

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  3. Allyson

    Allyson *****

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  4. Allyson

    Allyson *****

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  5. Allyson

    Allyson *****

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    WHY bother to GET an EDS diagnosis? How will that help me ?

    1 it is genetic so you may want to know for your kids/ grandkids who may get it worse than you - and to avoid passing it on

    2 there are associated cardiovascular risks so you need to have and echocardiogram every 5 years - for all types of EDS

    3 it is a great relief if you get a diagnosis because, when you understand it, it explains all your symptoms logically and you do not feel like you are crazy, depressed, anxious or have social phobias - it has physical reasons for all these.

    4 they estimate that one in every 100 people have it but are just undiagnosed - if we all get diagnosed we will get more research and a possible cure.

    5 There are great symptomatic management strategies for it.

    6 you can connect with others who have it too which is a great relief and a good source of information

    7 there are pregnancy risks such as post partum haemorrhage and miscarriages

    8 there are dental issues like poor teeth and periodontitis that you may want to take extra care over - EDSers often need more local anaesthetic for dental procedures for example.

    9 sometimes it helps you realise what other symptoms you DO have - eg you may not know what brain fog is til you read about it as I did and it clicks - oh that is those days when I lie in bed all day and can do nothing and feel like i have a hangover for no reason...same with heat intolerance, photophobia, hyperacousia (sensitivity to noise) etc

    10 there are many eye issues associated with it such as near sightedness and detached retina so you may want to let your optometrist/ophthalmologist know about it.

    11 It can help if you are giving up smoking to know that nicotine is a stimulant and part of the reason you feel bad is that smoking seems to mask some of your EDS symptoms so you feel better when you smoke

    12 some of the symptoms - brain fog , crashes, can feel like depression when they seem to hit "out of the blue " - these can be relieved by treatments such as rehydrating with electrolytes, wearing compression garments etc and maybe you do not have depression after all....
     
  6. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

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    I Have EDS, ME, POTS and Erythromelalgia. All related and makes sense. Born with mutated EDS gene and predisposed to getting ME after EBV.
     
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  7. merylg

    merylg Senior Member

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    Allyson likes this.
  8. Allyson

    Allyson *****

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  9. Kina

    Kina Moderation Team Lead

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    @Allyson There is a message in your conversation inbox that you are required to answer.

    Thank you.
     
  10. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    This is a really interesting topic and something i've been meaning to check out for years but have been busy dealing with other health things and didnt want to pile everything on new ish GP in one go.

    Its interesting that someone mentioned people being told they have 'growing pains' among other things.

    I had very severe 'growing pains' as a child yet i never did any growing. The pain in my bones stopped me sleeping for months at a time, but that could be down to my athletics coach pushing me too hard as i could beat most adult members when i was 11-13 so he worked me harder than the other kids.

    I ended up with osteo arthritis in my knee by age 13.

    On the beighton scale, i score 7 out of 9, sometimes 9 out of 9 depending on the day as some days my little fingers can only do 90 degrees depending on pain levels.

    I have migraine from age 4 (or at least it was diagnosed by age 4) and POTS.

    I'm putting off asking my doctor about it as i'm not sure how to bring the subject up. Ive only just got her to do my referals for POTS and dont want her to think i'm just pulling random stuff out of the air. I spoke to the POTS doc about possible EDS but he just smirked at me. My GP doesn't do smirking but it did put me off a bit asking.

    I'm also worried that if they did think it was EDS that it might encourage them to push stretching and exercise on me as my PEM doesn't allow any right now.

    Is it common to have a 9 out of 9 score with no EDS? Ie just loose joints?

    Sorry if its already answered. I think i managed to read half of the 500 posts
     
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  11. Allyson

    Allyson *****

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  12. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Wow, what a great video!!! Thanks for posting that Allyson. I've watched half and will do the other half after a rest. The 'POTS' doctor i saw should watch that. I knew they were clueless by how they responded to my description of symptoms but this video makes them look like complete (insert insulting word here) not only were they clueless about ME which they could be forgiven for but this video shows they were just as clueless about POTS, so getting a condascending smirk from mentioning a possible EDS link makes perfect sense now. Its a pleasure to watch that video!
     
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  13. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Hmmm at 37 mins in; he says 'They cannot just rest to get over their symptoms' that explains why the POTS doctor wanted me up and out of my wheelchair and he would have took it off me if he could. (Coz i'm just using one for the fun of it right now)

    That above sentence fills me with dread for people who also have ME as it means they won't be allowed to rest because they'll be 'deliberately' not trying to help their POTS. Which was the impression i was given when i was at the hospital; when they appeared to be trying to kill me with 2.5 hour questioning straight after tilt test.

    May be safer to be not diagnosed with POTS if also have ME.
     
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  14. wastwater

    wastwater Senior Member

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    1:This is interesting ive just arrived at the conclusion I may have a COL4A1 mutation.The buzzwords surrounding it are leukoencephalopathy.Hereditary Ischemic small vessel diseases.White matter brain diseases.2 (maybe unrelated) Im also wondering if there is an overproduction of Interleukin 2 in response to virus like EBV creating a toxic encephalopathy.I don't have EDS or POTS.
     
    Last edited: Aug 12, 2014
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  15. wastwater

    wastwater Senior Member

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    This is my very rare 1 in 200,000 genetic disorder http://www.malacards.org/card/axenfeld_rieger_syndrome.There are many interesting things about it and I wonder if it may hold clues for autism and ME/cfs as many people with it report fatigue states from wondering if they have MS to fibromyalgia to childhood severe fatigue,it mentions vid D3 Doxycycline cannabidol proline and glutamate maybe that's to do with microglial activation.Leukemia,prostate and Breast cancer are all loosely linked to it too.Connexins are important in the heart eyes and brain
     
    Last edited: Dec 11, 2014
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  16. wastwater

    wastwater Senior Member

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    Maybe ask is ME due to leaky tissue
     
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  17. Iritu1021

    Iritu1021

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    I don't know if this has been already mentioned but we also now know that in women with EDS (or perhaps other identified or unidentified connective tissue disease) who have been pregnant the POTS is a complication due to pelvic vein congestion because the pelvic veins become stretched out during pregnancy. I always had some degree of orthostatic intolerance but it became worse with each pregnancy. The good news is there is now a new procedure called pelvic vein embolization which leads to 80% improvement. It's also possible to embolize overstretched leg veins. I'm including a link to his talk:



    Overall, I applaud Allyson for making the connection over two years ago. I have no doubt that a very large proportion of us ended up here due to a genetic deffect in collagen or connective tissue and subsequent impairment in circulation. Everything else can be linked to the consequences of that. For example, I also have classic ME with chronic active EBV but I am confident that the reason behind it is impaired blood circulation in my head and neck area.

    The link has been proven, it is simply being ignored. What we need to do now is get it out there and make everyone to believe it. Right now EDS is an "orphan diseas", the drug companies won't invest money in developing treatment strategies unless we convince them that it is much more widespread than originally believed (just in milder presentations) and they will see that there is a huge market for novel therapies.
     
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  18. physicsstudent13

    physicsstudent13 Senior Member

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    I had neurofibromas surgically removed during a colonoscopy and tinnitus and hearing loss. I started on losartan which is a new therapy. Could I have brain tumors and NF2 causing sleep disorders or fogginess and seizures?
     

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