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Everything posted by brownsea

  1. i was dx with eds 3 two years ago, a year after being dx with pots. going over family history i decided to get in touch with the prof who dx my eds. he agreed that i should be tested for the vascular type. two years ago i had a skin biopsy. three tiny pieces of skin removed from my upper, inner arm. although the test should of took a year, due to funding, i should get my results back this october. keeping my fingers crossed. i have thin skin, the geneticist remarked on this, visible veins, easy briusing. my sister died when she was a baby, my aunt died at 21. also my three grandparents suddenly died. this all may just be a coincidence, however i feel better for being tested, so at least i will know. along with the skin biopsy they took blood too. i think if i do have type 4 then any relatives can just go for a blood test to find out if they have the gene, i think thats what the prof said.
  2. hope you have a really lovely time puppy. x
  3. ive been veggie for nearly twenty years. because of my nan dying of a condtion related to high cholesterol (think she had undx eds too) we had to be tested. i was 13 the first time. what i have found out over the years is. if im underweight my chol is ok, yet if im a normal weight my chol is high, along with high trig. due to the nausea my weight varies at times, to how much i can eat. usually underweight, or bordering on normal/low.
  4. i understand, the collection of symptoms list. before being dx, took 20 years, i was scared of hospitals, probably due to the lack of dx. yet now when i get another name of a condition i have, i laugh, and add it on to the rest! when people complain of their one condition, (i shouldnt be harsh because i would of been the same) i think wow, just one, have my list!!! ive gone past the point now of wishing for a 'one good healthy day', i guess because i know its not going to happen. yet a day with quiet symptoms would be nice.
  5. aw hes so cute kim. rosy has a schnauzer friend called bertie. on their walks bertie plays the role of protective parent, so sweet.
  6. the past three years ive been like this amy. i can manage to sit up unsupported for two to three hours before symptoms take over. in the car i have a pillow to support my head, with the seat reclined which i find helps so much. at home im in bed with the support of pillows. thought it maybe something to do with instability in the neck. i have eds also.
  7. maggie is so sweet carrie. i could just hug her. x
  8. i get the hot itchy hands, my feet feel the same way too, especially at night. they are red and blotchy too, i run them under cool water which cools them. then ten minutes later they are on fire again. i also experience numb and cold hand and feet in the winter cold.
  9. im glad you posted this emma, i have no answers unfortunately, yet i will look forward to reading the replies. i have put off for a year now going on the eurostar. i was due to go to the south of france last june, yet i didnt know how i would cope under the tunnel, also was poorly with pots and eds symptoms. i asked my pots dr would it be ok to fly, his response was yes. yet i thought differently, and havent tried. i also have problems with my lungs, breathing at times, so i was worried what the pressure would do. good luck with the travel. x
  10. yep i have these lines too, didnt know they had a name! i have a number of lines on each of my big toes. i have pots and eds. i am underweight also, due to the stomach issues both conditions present. its getting around to may again, which time the flip flops come out. what i do for four months is file them down with an emery boards, so they nearly disappear, then coat with clear nail vanish. i do this a few times over the summer. then come september i let them go back to there natural shape, bumpy! i know this is probably not good for the nail, yet i dislike they way they look in flip flops. x
  11. i suffered with extreme nausea, so much so i couldnt eat or drink. the neuro tried me on domperidone and it worked within a few days. thank goodness. i had tried other nausea meds over two years, no of which worked at all. i also tried wrists bands, ginger etc, which didnt work. i hope you can get the med soon, and fingers crossed it will work. x
  12. hi kjmom i was dx with pots first, i think nearly a year later eds was dx. a rheumy dx my eds, however i sought him out, due to the fact that he treats people with eds in england. i thought instead of going to a local rheumy i would go straight to the top. as by this time i was fed up with not knowing what was wrong with me after so many years. im due to go into rehab at stanmore, where they will give me physio for the eds, and pain management. at present i dont have any meds for eds. i had all the classic symptoms of eds. stretchy skin, bruising, flexible joints, marfan traits too, long arm span, tall, skinny, high palate, i just wish i was dx earlier on in life, would of saved a lot of hassle later on, with not knowing what was wrong. good luck.
  13. i have to large pillows under my head, without them i would feel awful in the morning. i have woken up laying on one and felt so ill, it took the morning to feel better. i go to sleep laying on my side, either side, because if i lay out on my back with my legs straight i get restless legs, so i tend to curl up on my side. yet i always wake up on my back. sometimes with my mouth wide open! nice sight!. i cant lay on my stomach anymore, my head spins within a few minutes of doing so.
  14. when i was recommended sports drinks,i found i couldnt tolerate the sweetness. i have tried them a few times but was able to continue to use them. although the pots dr did say they would help. i rely on de-caff tea, which helps my stomach problems sometimes, and water.
  15. hi libby ive noticed this too. the past couple of years since ive been dx with pots. i was going to mention this the next time i saw my neuro too. i also experience hot hands. i normally get this in bed of a night for some reason. years ago when i was able to walk long distances i would get incredible hot feet, so much so i would have to take my socks and walking boots off. will look forward to looking at the answers.
  16. i had a couple of days away last week, came back feeling awful, more so than before i went! i suppose we all get that. rosy came too, she seem to really enjoy it, jumping around the beach, walking in the woods with a spring in her step. we went to the forest of dean, heres rosy sitting on a bench whilst we had a cuppa.
  17. hi bella - i hope you are able to purchase a sewing machine in the future, i spend five or so minutes at a time on the machine, i get there in the end though! hi puppy - aw you kept twix, sweet story. i must admit i think if i fostered a dog, or animal i wouldnt want to give them back!
  18. hi bella dogs are so sweet, sure they know too when your ill. you little one sounds lovely. i was able to trace around an old coat of rosys, add an inch seem allowance, then slowly, very slowly made it into a coat. the reverse side is full soft leopard print, the top is corduroy, my favourite fabric. what would of took hours in the old days, now takes weeks. hey i got there in the end though, thats all that matters.
  19. hope you dont mind me posting a picture of my dog ROSY. shes such a comfort to me when im feeling unwell. shes mostly with me all day. the coat in the picture i made for her. i used to love sewing, now i have to pace my way through projects, yet i get there in the end. would love to see others dogs too. do you still have twix?
  20. i was at my worse with breathing and drinking/eating just before i was dx with POTS. i asked the a&e (er) doctor he said i would have had to be born with a condition where i couldnt breathe whilst eating. that was before the dx of POTS. its reassuring others get this too. im not so bad now im on meds, yet i still have days when drinking is a problem i couldnt gulp down water like before. also i couldnt sing a full song, i gasping for breathe half way through.
  21. i have to wide pillows under my head of a night, without them i wake feeling really ill in the morning. if say one has come away, until i slowly raise myself over the next few hours, i have a headache. laying flat is a no,no.
  22. i have my regime down to a minimum. i use touche eclat on my under eye bags and blemishes, quick and simple. a little bit of mosturiser. its surprising what you can do with a minimal amount of time. good idea for a thread.x
  23. juat before i was diagnosed with pots last april, i was experiencing what seemed like panic each time i ate. luckily with the meds, and a few coping techniques im mostly ok now. i eat my meals in bed, most of them, i know this sounds yucky, i would of thought this before hand, but with my legs on a level and my shoulders relaxed propped up with pillows behind me i find this helps. if i sit upright at the dining table my hearts starts to beat oddly and i just feel awful, even now. also a cool room helps, no way can i be in a hot room. you probably know all this but i thought i would add what works for me. i know this feeling well and its just awful, i lost a lot of weight just before being diagnosed which i dont think helped. good luck.x
  24. i had one filling nearly twenty years ago, because of me ill health then, mostly sore throats i decided to go for a white filling. i pretty sure i had pots before then, so for me made no difference. i would of always wondered if i did have the amalgam filllings.
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