willows Posted January 22, 2007 Report Share Posted January 22, 2007 While I was at the hospital with my son last week ( children's ward) I happen to be talking to another mum who had her son rushed in with strange pains , like Mike . Anyhow we got talking and she asked me why I had a stick , as she had one too, I started talking to her about POTS .............. and she was gobsmacked as she had it as well we both nearly fell over in the ward with the shock .This is the first person I have ever actually met face to face with it in my country , so you know what its like we started comparing parts of the body she had this and that and I had the other I think between us we covered ever sign of the condition.BUT ................what was really interesting was that she had the same arms/wrists as mine 'EXACTLY' the same it was like looking in a mirror, she also has it on the front of her thighs and her knees are twice the size at times when she is very bad ( exactly like me as well ) So having nattered to this lady for some two hours while our sons were having tests done I decided that I would get my hubby to take some photo's of my wrists and post them here with the lead in to my photo site which he now tells me he will do tomorrow as he's to tired to do them now ( excuse all other photo's on the site by the way ) So anyone out there got this ?????In the morning after I've laid down all night the wrists are quite flat , almost normal, but within half an hour of being on my feet 'wham' they swell up and look most peculiar. They have these red dots on them and if you push down on the swelling it leaves a white finger or thumb mark which disappears in time .They are not sore, but I do have loss of strength in them , and this is not because of constant use of wrist supports as I try not to use them in the house , only when I'm out in case I fall ( not a good idea) So guys , have you got this on any part of your body ????Photo's on this page tomorrow . Willows. Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted January 22, 2007 Report Share Posted January 22, 2007 I dont have that, but I did want to ask how your son was. Quote Link to comment Share on other sites More sharing options...
becky Posted January 22, 2007 Report Share Posted January 22, 2007 definitely don't have that willows!! but do have swollen wrist at the moment- fell over on the ice today, proper cartoon style flew about three foot in the air and landed on my wrist and back, ouch!i do get really swollen ankles a lot, but they don't seem to have red dots on them. what have your docs said? isn't swelling like that when you have fluid? is your bp normal? another thing, isn't it fantastic to meet someone else with pots? i met persepherone nearly two years ago and she was such a huge help, i'd only just been diagnosed. we are the same age and we keep in contact, it's really great having someone else there,especially in my case, i mean the girl is such an inspiration! Hope you find out what's happening there. anyway how's Mike doing? any more news? read about his girlfriend dumping him, what a *****! i got dumped when i was in sixth form by a boy i really liked. it was awful! One boy i really really fancied in school went out with my best friend for years, we were really good frieds aswell though and kept in touch, and guess what, we got together just over a year ago and we live together now and we are looking for a house together - so it all turns out ok in the end!big love and hugs x x xbecks x x x Quote Link to comment Share on other sites More sharing options...
willows Posted January 23, 2007 Author Report Share Posted January 23, 2007 Oh ........April love you little babies!Well Mike is a bit better now, sleeping , thank goodness and eating well again , but he's on three meds still , we are of to see his consultant in Feb before we go to Newquay for a weeks rest.I do get fluid retention in my ankles and face and take meds for this every day, without them I can't get my shoes on and I look like a hamster having been eating oats all day ............if you get my meaning My blood pressure is always low because I take clonidine to keep it down , without this its sky hi and I'd feel the pits, my doctor hasn't any idea why my wrists are swollen and up until I met this other lady she thought it was 'just me' so now she knows I'm not such an individual at all.Marks going to post a picture of my left wrist after lunch ( a are both having a rest as we went for a walk in the cold ) also a picture of the coat/hat he bought me for christmas so that I could go out in the cold ( Raynaud's normally prevents this ) my goodness it's like being in an oven !Also today I've had a really bad sweat day , Mark took a picture of me first thing while I was trying to get dressed .............and having to strip off again as i soaked the clothes , I get this 24/7 and its the bane of my life , no its not menopause as I've been sweating for 7 years !!!!!! and still sweating each and very day .............crumbs I wonder how many litres of fluid |I've lost in those years ????Well better go as I need to rest , so tired from a 15 minute walk by the sea .Lots of love to all AMI.........watch out for the link to the pictures at about 6 pm tonight. Quote Link to comment Share on other sites More sharing options...
corina Posted January 23, 2007 Report Share Posted January 23, 2007 ohhhh willows, newquay!!!!!!!!!!!!!!!!!!!!!!!!!!i wish we could join you!!!!!!!!!!! my dad lives in st columb?s minor (very near to newquay), we used to walk from there to see the harbour and the lovely (or should i say lively) town of newquay. we've been walking through the headlands and along the coast and the goattrack (a path from behind my dad's house to the coast, but couldn't make it as it was soooo far).i am going through the holiday brochures these days to find a holiday accomodation for this summer but it all is so very expensive, as our holidays are in august (and it is VERY busy in newquay in august). oh and have you ever been to helford river during the summer???? my dad took us to a beautiful little beach and pub near the river where we had lunch and a GREAT afternoon with the kids playing in the water and we watching them and my dad's wife searching for shells with Justin (our youngest son).well, you'd better not start about newquay with me!!! wishing you guys a lot of fun!!!!!!!! and enjoy your stay as much as you can. oh and btw, my dad has a little plant shop/shed (it's called minor garden) where you could take a look if you would like that.corina Quote Link to comment Share on other sites More sharing options...
willows Posted January 23, 2007 Author Report Share Posted January 23, 2007 Ha................hubby's stuck me onto the site , OMG please excuse the flabby side of the face , blimey cant I see how old I'm getting now must do some facial exercises or use my face machine ( electrical thingy that sends sort of sparks into the face to tone it ) also hubby noticed that I was so furry ...............mmm thank you for that dear made me feel every so better NOT he asked me if I'd ever been bulimic in my 50 + years.............not dam likely was my reply , foods to nice to waste like that , but very strange the furriness's all over my face ...........hope I'm not turning into a gerbil .Click on the link below to gaze in wonderment ..............and enjoy the laugh well we all need something to bring a smile to our lips each day , so it might as well be me ..........AMI http://s75.photobucket.com/albums/i318/ban.../miscellaneous/ Quote Link to comment Share on other sites More sharing options...
willows Posted January 23, 2007 Author Report Share Posted January 23, 2007 Just sent you a message Corina ..............blimey cant believe we are so near yet so far from each other , strange that .I've enclosed in the message some info about where we stay and prices if this helps............you can log into the site on the net under the name I gave you .Ta, Ta for now a very furry , spotty armed AMI. Quote Link to comment Share on other sites More sharing options...
persephone Posted January 23, 2007 Report Share Posted January 23, 2007 I met a lady from your neck of the woods last year when I was in London seeing Mathias- she wasn't called Diane, was she?And Becky, don't make me blush, hen! We all know *YOU'RE* the inspiration, hen! xx Quote Link to comment Share on other sites More sharing options...
goldicedance Posted January 24, 2007 Report Share Posted January 24, 2007 Ami,I definitely get those red dots; not the swelling those. I get them on my hands and wrist. They've had my doctor puzzled for years. They seem to get worse when I am out in the cold or in the heat.Lois Quote Link to comment Share on other sites More sharing options...
willows Posted January 29, 2007 Author Report Share Posted January 29, 2007 Hi guys, sorry I haven't been back to you before now but I've just had another really bad session and been stuck flat on my back in bed for a few days, at one point I couldnt even hold a cup I was in so much pain ...........I HATE THAT I to get my red spots more in hot weather and in very cold weather my arms seem to swell more ???I haven't had a chance to look up the names you suggested either , but now I'm up and about ( well ,just about to have another lay down now ) I will have a nose about and see if anything matches.I'm doing a bit of painting at this time , only dragons that I was given for my Halloween event later in the year , they were in a right state , chipped, badly painted and rather dirty . I've repainted one so far and have two more to go , so that will keep me out of trouble for a while .Oh , dear , better go as my clothes are now sticking to me in some rather 'not to nice ' places and I can feel sweat trickling down my back again....yuck !Bye for now ..............must repeat to myself ' I will not panic if I cannot get out of my clothes ' ' I will not panic if ........... Quote Link to comment Share on other sites More sharing options...
willows Posted January 30, 2007 Author Report Share Posted January 30, 2007 Still painting dragons on my second one now, when I've finished him I'll get hubby to take a photo and stick him on my ever growing site of stuff, quite a collection of strange and interesting bits on there now.I've just had a call from the area manger of the children's hospice I do charity work for , so there I am nattering away to her about all the bits and pieces I've been given so far , and she decided that she's also going to put out an SOS to her other area's for strange items ( birdcages, books, dragons, wizards, you know the sort of thing I keep in my shop) so I'm nattering away like mad to her ...............then my voice squeaks...........goes very high ............and then hoarse. OMG not again Every few months I loose my voice , I've been doing this for about 20 years now and its so annoying , sometimes it starts with a sore throat , and other times it just sort of grumbles and squeaks then waves me bye, bye for a few weeks. Hubby and son are used to me doing it , but my boss thought I was messing about ( I'm known for my silly voices , walks and clothes ! ) and it took me ages of squeaks and squawks to get her to believe I wasn't just being daft .Never mind all adds to the great book of life and makes my day interesting and amusing ( well thats what I'm telling people in a voice that sounds like my knickers are 5 sizes to small ) Willows.................blah humbug..............soon be christmas ! Quote Link to comment Share on other sites More sharing options...
thejohnsongang Posted January 30, 2007 Report Share Posted January 30, 2007 Hey...I have those red dot too...they are all over my chest, stomach and back. Doctors have never been able to tell me what they are. My mom has them all over and my daughter just got them over the past couple of months. She is seeing Dr. Rowe at John Hopkins in March. He see and treats kids with CFS and such. Checking her out for POTS. She shows alot of symptoms...a 15 year old should never sleep that much. If anyone knows what the red dots are, please let me know.Willows...glad to hear things are under control with your son. Hope you find out what is/was going on. Quote Link to comment Share on other sites More sharing options...
willows Posted January 31, 2007 Author Report Share Posted January 31, 2007 Well thats proved something at long last , which is .............that other sufferers have these 'red dots' which in a way helps me ( and you others who have it ) because you and I can now go along to the jolly old doctors and say ' look , these red spots/dots that I have , others with this condition have them as well , its not just me ' I'm hoping that every time I find something that isn't 'just me' a strong picture of whats happening to my body inside and out can be formed and it does help to hear that others like me are having such strange and varied conditions , and in a way it makes me feel less of an 'odd ball' and more of part of a community of sufferers who have strange 'bits ' here and there on the body , but who like me will probably never find out or be told by a professional just what is going on and why !I'm as stiff as a surf board today ( two fingered typing here ) and its rather amusing to shuffle along around the house , mind you I moved a bit faster just now when hubby brought me a cup of much needed coffee took a nice long gulp of it and ..............BLAH milk off ...yuck, yuck, yuck ............that got the old bod working as I galloped to the sink to get rid of it May be coffee isn't the nectar of life today , water seems to be the best option at the minute . AMI Quote Link to comment Share on other sites More sharing options...
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