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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. A

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    EDS and POTS lecture by Professor Peter Rowe, Johns Hopkins Uni to physicians explosion in occurance or diagnosis of POTS got fatigue? feel too hot then too cold - gut issues ? anxiety? sleep issues? No need to watch just play it in the background as few visuals...
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    Has anyone had lower back and hip pain associated with constipation?

    and to the person who noted abdominal bloating - that can be due to lactose intolerance and fructose intolerance - you can do a home lctos e challenge to test for the loactose intolerance Ally
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    Has anyone had lower back and hip pain associated with constipation?

    lower back pain is common in EDS as is scoliosis - have you ruled that out; so is IBS - a low FODMAPS diet may help that I take Magnesum too if I eat cheese as a balance never noted the link with B12 - must look at it IBS can be diarrhoea, constipation or both alternating Ally
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    My Air Hunger has improved dramatically !!

    I should add this is different form other air hunger things I get - one is exertional dyspnea, another is a tightness that may be mild asthma or bronchospasm in top of chest. Ally
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    My Air Hunger has improved dramatically !!

    I have a different kid of issue also related to air / breathing - it feels like I stop breathing occasionally and have to remember to breathe manually - does this come under the same category as air hunger? Does anyone else find this ? TIA Ally
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    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    yes and one day I s already booked out I believe a good sign - thanks Merylg Autonomic symptom burden in EDS - are Rheumys catching up? http://www.semarthritisrheumatism.com/article/S0049-0172(14)00107-3/abstract A
  7. A

    What type of vacation or break do you still manage to do?

    yes I am the same with temperatures Justy - so hard to regulate; an yes carry bag of supplies like that even for a short trip - say to the cinema lol Ally
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    What type of vacation or break do you still manage to do?

    thanks - a friend had recommended cruise to but the she s well - she said lot of injured people take them for reasons above but I can see your downsides would affect me too - I need room service...hate sitting up for meals and yes with strangers you would need to talk too ....eek! Plus I...
  9. A

    successful treatment for light/noise sensitivity?

    Interesting a B12 is also essential in making connective tissue come to think of it y photophobia is better after months on B 12 injections and vit D involvement? Ally
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    POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

    Yes my doc says the OI is the problem too Alex - and that POTS is a by -product of the OI I guess POTS is easier to say than OI and so gets more airtime ? CHeers, Ally
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    Polyuria, Nocturia and Polydipsia--ME symptoms?

    That sounds very interesting I will read - it is one symptom my doc as never asked about And when i mentioned I he said it was not part of POTS but when I asked on fb lots of POTsies said they did have it...so maybe it is now.... Allly
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    What category do you fall into for your diet?

    Thanks MeSci I have lately found that good pure cocoa is actually quite nice with just hot water - does not even need the milk at all Yes I was taking it with Soy milk at times too - was OK and you get used o the different taste Ally
  13. A

    throwing out supplements

    I never know - use by dates are really for cottage cheese if stored in the dark and kept col maybe some are OK Ally
  14. A

    testing for hypovolemia in POTS

    I have heard of only a few who have actually been tested so far - and yet they say it I a common symptom of ME and FM and EDS and POTS.... Ally
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    Isaiah Austin Diagnosed with Marfan Syndrome, Ending Potential NBA Career

    no you do not need those symptoms - many do not have them. A friend just went for a Dx with a god specialist yesterday and even though she is only about 168 cm he suspected Marfan's - He measured her arm and leg to body ratio - apparently that counts more than just height now - she is also...
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    successful treatment for light/noise sensitivity?

    I take healthy origins form iherb - I may try a different brand tho as it does not give me any more energy, just relief for muscle aches which is enough tho I have been happy with this one Ally
  17. A

    successful treatment for light/noise sensitivity?

    for me it did otelp with noise sensitivity managing my POTS helped with the noise sensitivity as adrenaline from POTS causes it for me more about that an how to manage it here Raindrop http://forum.notcrazy.net/index.php?topic=9571.0 good luck Ally
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    POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

    also I have found others on fb with your large hands /feet issue and POTS Alex - been meaning tell you ALly
  19. A

    POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

    wow that is terrible Alex - did thy give yu IV fluids afterwards to revive you? does your pulse rise by 30 bpm when you stand up anyway? Ally
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    Does everyone who has ME/CFS have Fatigue ?

    the million dollar question!
  21. A

    Does everyone who has ME/CFS have Fatigue ?

    yes t is a vast word and needs to be defined IMO - but yes I get it all the time in one form or another Aly
  22. A

    Skin heals very slowly

    does it vary in different parts of your body ? is is slower on e legs for example? DO you have any unusual scarring? Ally
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    successful treatment for light/noise sensitivity?

    yes it helps my muscle aches Rosie - a staple for me now! cheers Ally
  24. A

    successful treatment for light/noise sensitivity?

    IMO it is aused by excess drenaline due to POTS Gavman Adrenaline is flight of fight - so all senses are hyper alert, muscles tensed, digestion impaired etc so treating the OI/POTs helps h photophobia see more in this thread the logic and management strategies...
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    POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

    and NO POTSs still not taught in med schools - and even many cardiologists do not know the first thing a bout it Ally
  26. A

    POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

    yes agree - but they have not known about that long and it takes time for teaching to catch on that is why I advocate so much to patients Gigergirrl- we need to spread the word ourselves and now with the internet we have a golden opportunity to do so there re about 20 000 people on POTS...
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    Polyuria, Nocturia and Polydipsia--ME symptoms?

    thanks Nila - what is the best kind of topical to get plz? - time I started It ALly
  28. A

    Polyuria, Nocturia and Polydipsia--ME symptoms?

    SO sorry I never saw these til now Me sci - thank you so much! are you able to say quicklywhat they re about or is that pushing envelope? CHeers! much appciated Ally
  29. A

    Polyuria, Nocturia and Polydipsia--ME symptoms?

    great idea Leopard - that will also let you know if you go over a litre or two in a certain time - if your hands get wet y have polyuria! lol Ally
  30. A

    Polyuria, Nocturia and Polydipsia--ME symptoms?

    cynacobalamin iall have treid so far X Cheers