Lillskuzi

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About Lillskuzi

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  1. Hi! I think it is the temperature change which sets it off. I too still get Raynauds in the summer and I don't go anywhere without a pair of gloves in my bag, in case I walk round a corner from being in the sun to the shade and get cold hands! I too also get cold right after eating. I also wondered if it is because the blood has been diverted to the stomach! Glad it's not just me!
  2. Hi Amanda I just read your post. My thoughts are with you. I can't imagine how shell-shocked you must feel. Stay strong and positive - you have great strength of mind to face this. I am so glad you have received good care at TRF and have heard great things about the Brompton, too, so hope they treat you just as well. Stay warm and take care, Susie
  3. Hi Amanda I just read your message! Very funny! I am sure she was trying to be helpful, and she came across very sincerely but I just felt patronised. Just like at the age of 25 when an endocrinologist said to me, "I suppose you are thinking hard about children now - otherwise it will be getting too late." Where did he get that one from? I was not 35 and didn't look it either, looked younger than 25 if anything (still get ID'd). Pointless comment!
  4. HI Vanessa I had a 7 day stay at my local hospital, so not the Royal Free, and had Iloprost and IV antibiotics for 5 days. 6 hours a day for the Iloprost, during the night - very bad idea as you can't sleep, well, I couldn't - had such bad headaches and the nurses were taking my BP every hour during the infusion, so sleeping was out of the question. I am hedging a bet that I was the first person there to have had Iloprost so no-one had thought what would be a good time to give it or not. I don't know what is standard practice, but to me, it would seem better to have it during the day. I got dressed (tricky with multiple cannulas) every day for the same reasons that Lizzie stated - it made me feel better and meant I could wander, and made me feel a bit more dignified when the dr's came round than if I had been sitting in my PJs. I had all the usual tests, echo, lung function, chest xray, bloods and it was a single-sex ward, but just a general medicine ward, not a rheumatology ward wih sclerodermians, but I guess that is not going to happen in a local general hospital, I guess the RF could be v different. Food was ok, better than I can cook (not saying much, though), and a good selection. There was nowhere to make tea for yourself, so I frequented the League of Friends tea shop quite a lot - mostly for something to do as yep, once the novelty wore off, it was boring. I was lucky, my bed was at the entrance to the ward and outside the door, there was a desk where doctors and nurses worked, so it was great people watching! I can imagine life being a bit more boring if you are stuck in the corner of a ward with not much to look at. Hope all goes well for your stay ;-)
  5. Talking of registrars making off the cuff remarks, I saw one once (or she might have been a house officer) who, when I commented that my Raynauds had been worse than usual (and bearing in mind my notes say I have a history of infected ulcerations, Iloprost etc suggesting I have had a lot to deal with and have been through lots of treatment options), she asked if I had thought about trying to wear gloves to keep warm when it is cold. I was speechless!!!! I wear gloves in the middle of summer!
  6. Hi Paula Thanks for reposting! I don't have problems with my magnesium levels, but I know someone who does, so I have let her know your post is back up so she can have a look. It sounds like a pretty rare problem. Warm regards
  7. Interesting, sounds like no-one likes Iloprost at all and no-one seems that convinced that it works. I avoided it last year but I am wondering if I should give it a try this year. I really don't want to, but the thought of painful hands from October through to whenever it warms up a bit is not pleasant.
  8. Hi Shelley and Jeannie OK, thanks for your replies. That must be why. Fingers crossed they will post again :-)
  9. Hello Bobby I have had Iloprost and had the most awful headaches on it. I didn't have anything like the knee pain you are describing, which sounds very unpleasant. I hope they manage to get it sorted soon. Did you find Iloprost useful, by the way? I assume you had it for Raynauds. I am not sure if it helped or not. I had infected ulcers and they did heal after the Iloprost, but then I was on loads of antibiotics at the same time, so they might have healed anyway, even without the Iloprost. Often the doctors ask me if I thought it was useful, and I have to be honest and say I am not sure. I certainly still had bad Raynauds after it, but then it was bad before. And then it got a bit better, but I did have it during the spring, so we were headed for summer anyway and although I still get Raynauds in the summer, it is not as severe as in the winter. I am already cringing at the thought of driving to and from work each day with painful hands, not able to warm them up. Must stop moaning as I know things are a lot worse for some people. Vent over!
  10. Hello all Yesterday I read a post from a lady who said she had unexplained low magnesium levels. I wanted to show that post to someone I know who has the same problem, but I can't find that post again. Can someone help me find it, please? I think yesterday it was one of the newer posts. I have tried searching for it using the search function, but haven't managed to find it. Thanks :-)
  11. Hee Hee, so now we have a President, Vice-President, and Historian and Conservator. Now we need Mitten Makers (people to knit them) and Mitten Members (people to proudly wear them, summer and winter alike) and support the founding principle of SMU (Sophisticated Mittens United). FOUNDING PRINCIPLE OF SMU: "it IS perfectly OK to wear mittens whenever or wherever, whatever the weather". Let's raise our mittens united!! :rolleyes:
  12. I have heard that mittens are warmer than gloves anyway, as your fingers are closer together, so they keep your body heat together. Though if your hands are cold, there is no body heat there anyway, so I am not convinced about that. Maybe I will try and see myself and join you in that sophisticated mittens club, Amanda. You can be President of Sophisticated Mittens United, and I can be Vice-President (since it was your idea, I thought it only right to let you be president...!)
  13. Hello Carol And I don't go anywhere without a pair of gloves close to hand either! I, too, have had a bit of respite from wearing gloves this summer, though there have been plenty of occasions where I have worn gloves since it has not exactly been a hot summer. I am on the South Coast. I am sure it is warmer down here than up in Scotland, but it has been really windy all summer, and that sets my Raynauds off! Stay warm and cheerful :)
  14. Hello Amanda Here's my personal tried and tested tips controlling both reflux and regurgitation of food (horrible, horrible, horrible): 1) I don't drink around meal times (for an hour or two before and a few hours after, or if I do drink near a meal, it is only a small volume. But if I haven't eaten very much food, I can drink ok, so I guess it's a question of limiting what goes in at once) 2) Don't let myself get too hungry as that seems to be when reflux gets worse; when this happens, between meal times, I have something small and bland like rye crispbreads a or oatcakes which takes away the reflux taste and don't drink too much water at that point or it makes the reflux splash up! 3) don't drink fizzy drinks, coffee or fruit juices at all and alcohol seldom (ie just at holiday). Though sparkling water seems ok 4) don't drink tea too much, or the reflux gets yucky. But then I like my tea, so it's a balancing job <_< 5) avoid fatty and greasy and oily foods 6) avoid chocolate and really sweet things, particularly when eaten in isolation (but I can manage some biscuits and fruit cake now and then, oh joy!) or the sickly sweet reflux hangs around too long 7) wear skirts and trousers a size too big so there is no pressure on my stomach 8) try to avoid foods that seem to float in my stomach undigested for hours, eg mushroom, pepper, strawberries, apples, carrots etc. However, I do like these things so I don't cut them out, just eat them occasionally and bear in mind I will probably get to eat them twice when they revisit me hours later...even if my cooking was ok, I don't want to eat it more than once! 9) put some blocks under the head of my bed to elevate it 10) don't eat desserts often as I just seem to get sickly sweet reflux and if I am full from the meal anyway, the dessert will just keep coming back to my mouth. Having said that, who doesn't like desserts?! So I do eat them now and then... 11) Don't have cereal with milk for breakfast unless it's only a little bit of milk totally absorbed by the cereal (ie wheat biscuits- I am sure you know the brand I mean) I don't know why, but if I have, for example, muesli or any other type of cereal with milk, the milk just seems to slosh up and I get a yucky reflux taste from it for some reason. But I can eat yogurt for breakfast with no problem, so it is not a dairy thing, just a milk thing. I would be interested to hear if anyone else has a milk and reflux problem! 12) If I do have something bad, like spicy or fatty, I try and just have a tiny bit and "dampen" it with bland stuff at the same time, such as veg 13) clean my teeth when I get reflux, as the mint taste takes away the taste of the reflux for a while Those are things I try and stick to, but if I am round a friend's house and they offer me a cup of tea and biscuit, I will just have it and enjoy it and not say no thanks because otherwise I will get reflux, as I think life is for enjoying, too, and part of the social event of going to see a friend is drinking their tea <_< and eating their nice biscuits :rolleyes: so it will be worth it! Honestly, though, when I started getting regurgitation of food I had eaten many hours early, I used to get really upset as it seemed so yucky and abnormal. To be honest, I still get upset when it happens as it seems so unsociable and makes me feel dirty in some way, like it's due to poor personal hygiene, like when you haven't cleaned your teeth when you are supposed to or something similar. I know it is not my fault, but I still feel "dirty" whenever it happens. I rarely get actually heart burn pain in my chest. I just get a horrible tasting reflux in my throat and mouth and it can feel burny in my throat sometimes, though I do take a PPI every day, so it can't be a real burn, I don't think. I think that some people can have a more sensitive oesohopagus than other people, so maybe I am just a whoos! I'd love to hear more tips from anyone else, too. Hope these are helpful.
  15. Hi Amanda Me, too, I got a sore, burny throat from reflux, even when taking a PPI. I get problems pretty much every day. Though like the others, I seem to have good periods where it is not noticeable. At first I thought I had a sore throat all the time (I have had this for about 7-8 years), but now after all these years I can tell the difference between sore throat from reflux, and a sore throat from a cold. I avoid all the triggers for it, but still get it a lot. Drinking water, especially on an empty stomach, is a big trigger. Sometimes I don't drink the water because I know it will be sore, or I drink it but in smaller quantities.