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Everything posted by Sharonvandee

  1. Sharonvandee

    Swelling feet, ankles anyone else experience this

    Celia on a bad day they are an 8 - 9 and I can barely walkk on them for the pain that is causes. On a genreal day a 3-4 with low level pain. On the general day they look like a sprain ankle on a bad day they look like oedema when I was pregnant and the onlything I can wear on my feet is my clogs. On the bad days the whole foot from the toe back is swollen.
  2. Sharonvandee

    Swelling feet, ankles anyone else experience this

    Hmm thanks for the comments I went to general practitioner today and she is baffled as the swelling is behind the ankle and she rulled out edema. She has sent me off for ultrasound and xrays. If they show nothing she will then refer for chest ct and echocardiogram. So for now I will wait and see. It does though concern me that it happens even when I have raynauds and toes are purple so I am sure it is not a heat thing :(
  3. Sharonvandee

    Swelling feet, ankles anyone else experience this

    Thanks all for the replies Celia I spoke to Kathleen, who then got DR Sahar to ring and we discussed the possible causes, Finally she said that it is a problem with the bodies ability to transfer blood back to the heart. She suggested a few things to try and recommended that I ask my general practitioner to organise some test. So I am off to general practitioner on Friday and will see what the tests show. Shaz
  4. Sharonvandee

    Is this the start of something worse?

    Celia Sorry things arent going well at the moment. I have a dodgy bowel and severe stomach issues and I know that antibiotics give me the same symptoms that you are expereiencing, once you stop the antibiotics with in a few days you may find the syptoms will disappear. all the best Kindest regards Sharon
  5. A huge thank you to the girls in the chat room, especially Sheryl. I stumble in there and for the first time there was someone in there. Well it must of been fate, we got onto discusssing symtoms and she told me about Norvasc for raynauds and how much it had helped her. I spoke with my DR and straight away she put me on a low dose for starting with a check up tomorow to see how it is going. After 5 days I can already see an improvement. I am warming and coping alot better, I am able to do things I havent been able to for a while. I still have some limitiation but any improvement is great. So thanks for the support and sharing of experiences and helping me to get a little bit of life back.
  6. Sharonvandee

    Blood Pressure

    I have never had high blood pressure in my life till this disease flared up on me. I was placed on Verapramil for heart palpitation and mild blood pressure, when it was checked the other day it was elevated again hence the reason the Dr was able to prescribe Norvasc for raynauds. So now I am on two high doses of blood pressure tablet but still have elevated blood pressure. Is this part of the condition , has any one else been in this situation.
  7. Sharonvandee

    Getting my life back a little at a time

    Lovemoon I still get a litttle cold at times but both the external and interanl coldness seems to be a little more bareable. It is winter here at the moment and I too was at the point of crying from frustration and pain, winter is miserable. Even though it plays up in summer with airconditioners at least I can go out side and get a little heat, save on the electricity bills is for sure. I hope you too are able to find something that helps even a little is better then none. Lucy I to suffer from external and interanal cold taking an hour or two to warm up, and usually under and electric throw rug, so I will keep what you said in mind in case ever needed. Magret Yes that is me and my daughter, the apple of my eye.
  8. Sharonvandee

    Blood Pressure

    Barefut and Craig My general practitioner has just done all my bloods and says they are not too bad, not sure if she checked kidney will ask next time I see her. I am off to a clinic in two weeks to finally get checked out properly so will hopefully know more then.
  9. Sharonvandee

    Help to find a good rheumatologist

    Thanks so much for all the love and warm wishes. Thanks for the replies with suggestion. I tried the biotene product as recommended by my dentist but they caused other issues so at the moment I use pronamel twice daily, tooth mouse twice a day and after reflux episodes, which is way to often and special mouth wash and mouth spray. This has helped alot with the dentist saying the strength of my teeth has increased by 50 % yay. There is still alot of work and repair to do but she is slowly giving me back my smile.
  10. Hey Been ages since I have posted on here, as I buried my head in the sand and tried to get on with life. My general practitioner, cardiologist and gastroenterologist all agreed early this year that I have mixed connective tissue disease and that they would treat the symptoms as they come up. My dentist 3 mths ago diagnosed severe sjorgren meaning all my teeth are deteriorating at a fast rate.I now struggle with speaking and swallowing on a daily basis along with daily raynauds attacks. I sit here crying because reality has hit this will get worse even if I fight it. I know that the time has come to see a good rheumatologist but my general practitioner says she knows no one decent enough to deal with me. So I am wonder if anyone see a rheumatologist that they would be willing to recomend so that I can let my general practitioner know and get a referral. Please if you could PM or email I would appreciate it. Melbourne of Canberra would be ok. Thanks so much
  11. Sharonvandee


    Hey CED I took the adalat for a while and it did little good except bad headaches so they stoped it. Due to a problem with heart arythmia I was put on Verapramil, which my dr said can also help the raynauds but thus far I have moved to a warmer house but still suffer raynaud attack daily. The Dr did double the dose but still doeant help that much, but I have to stay on it for my heart now anyway. I dont get any side effects from it except constipation. Kindest Regards Sharon
  12. Sharonvandee

    Cold On The Inside

    Dear Margret I do have Raynaud's and I feel cold on the inside and out. even in a warm room I can take a couple of hours to get warm. I mostly feel it in the hands and the feet. It is summer here at the moment but simple things like showers, airconditioners, wet hair and walking on wet grass will start me off and I feel like I am shivering on the inside. I drink warm drinks which help a little. good luck
  13. After two and a bit years of sheer frustration we are finally getting to a point where the medical porfession are starting to co-ordinate the care and managment of my symptoms. So far Gastroscope- found emptying issues in the stomach, helio bacter virus, gastroenteritis and the valve on the top and bottom of the stomach no working plan must loss 10 kg so nissen fundipication can be performed, on motilium to help with emptyng and nexium for reflux. Dietician discussed best ways to get nutritional value when you can not swallow properly. This was an eye opener and with a new fancy device I am now eating simular foods to the rest of the family just mine is minced up, still tis better then nothing Heart Specialist found problem with a irregular heart beat and placed me on verapramil has helped with the palpitation and racing heart though has really helped the raynauds. Denitist diagnosed sjorgen and says the teeth are slowly being destroyed but gave me some product which will help with saving the teeth for a while longer, she was amazing, knew what the disease was all about and even got a blanket to put over me as the air conditioning set my raynanuds off, she restored my faith in dentist GP placed me on cereblex for arthritis pain which helps but has not so good side effects. All round diagnosis is now mixed connective tissue disease. Raynauds is still effecting me with the over use of aircondtioners everywhere I go but at least in summer I can go outside and get warm bonus is I have over the last few weeks relanscape our yard so I now have a haven to visit when I need to warm up. I would not have gotten through the past months with out the support of everyone here, especially Tangelo *hugs* so thank you all and a Happy Holidays to all may we all get out holiday wish :) for those yet to be diagnosed hang in there, for those diagnosed every moment is precious dont forget to smile
  14. Hey I have finally gotten the result of the gastroscope done a few weeks ago. The specialist diagnosed gastropaesis. He informed me that neither valve on the stomach works. He discussed doing a nissen fundipication but said he would only do this if I lose at least 10 kg lol whilst on steriods. Just wondering if there is anyone else out there with this and wheather is is related to the whole connective tissue problems or if it is a seperate problem thanks
  15. Sharonvandee

    Gastroparesis? Part Of Scleroderma?

    Hi Jefa Thanks for the link. I suppose I just want to know if there are others out their with this and if so how they cope, medication etc I was a little overwhelmed when I posted as I had just gotten back from the Dr and feel like this is just another thing to add to the list On the other hand what I have suspected has finally been confirmed
  16. Sharonvandee

    Depressed And Fed Up!

    Hey CED I am in Australia and was prescibed 1mg tablet to help with the weaning process. I am now totally off it though I have lost my puffiness, i have increased the amoung of joint pain, stiffness and breathing problems, so I may have to go back on it. Cant win em all. See if you can get a script for the lower dose.
  17. Sharonvandee

    Lump In Windpipe Area

    Hey Celia As a result of ongoing reflux I have the sensation of a lump in my thraot when I swallow and even when I do, there still feels like there is something there. I am due for a gastroscope this week to evaluate a course of action. Might be worth mentioning to your general practitioner or rheaumy.
  18. Sharonvandee

    Trouble Swallowing & Esophageal Dysmotility

    Welcome to the forum you will find it is a great source of support and information. I can totally relate to the symptoms that you are having as I am having the same symptoms. I am currently waiting for an endoscope to confirm diagnosis of dysmotility.
  19. Sharonvandee

    Ana Test

    Just a silly question but can ana test change from positive to negative or is it that once they are positive they stay positive? How many people have gotten a diagnosis without the positive ana test sorry just curious after reading a couple of posts
  20. Sharonvandee

    Dr's Do They Really Care?

    Lately it feels like every day is a battle. I no longer eat, just liquids and even that leaves me feeling like there is somethings stuck, I am breathless and my muscles ache, I feel like half the person I used to be and yet everyday I hop up and try and pretend this is not happening, quickly though your body has a way of telling you otherwise. The Dr here seem to care little, the rheumatologist says we can't help till you aree really sick and have skin invovlement, the cardiologist has a 5mth wait, the gastrenologist, who I am waiting to have surgery with that was 4 months ago says it will be a while yet before I get to the top of the list. I see how much this effect my husband and children and it makes me want to cry why are Dr so uncompassionate and there bedside manner so lacking. It is a disgrace that Australia calls itself the lucky country yet people that need medical care can't and dont get it till they are desperately sick. sorry about the ramble I am just so frustrated and tired of all the hurdles, for no gain
  21. Sharonvandee

    Dr's Do They Really Care?

    Hey Thanks for all the love and support that this forum gives. I am currently on 40mg somac twice daily and 10mg adalat twice. I sleep with the bed raised and dont drink coffee anymore :( but you do what you got to do. I am of to the general practitioner tomorow and after a quick phone to explain what is going on he is going to try and put a little pressure on the gastroenterologist so we shall see how that goes. In the meantime thanks again for your caring words and thoughts
  22. Sharonvandee

    Dr's Do They Really Care?

    Sheryl I have a hiatus hernia and no function in the lower sphicter valve which means for the past two years I have up to 150 reflux episodes a day. The number of episodes arent any worse but the damage the acid is doing is what worries me, i have tooth decay, damage to vocal chord and damge to esophegus and lungs, i get alot of pain, but still over here I have waited 5 mth for them to do a gastroscope so that the specialist can decide if he can do a fundoplication and hernia repair.
  23. Sharonvandee

    Burning Stinging Palms

    Thought I would ask if anyone else has had this happen to them. I did have it happen once a couple of months ago but I put it down to an allergy, which I am starting to think is not the case. My hands are a little dry and change though out the day but the stinging/burning sensation is there almost all day and is starting to become annoying. any thoughts appreciate
  24. Sharonvandee

    Welcome To The Sclero Den

    Thanks for setting up this wonderful extension of the sclero forum for us all to enjoy. Its nice sometimes to talk about the positive things that help keep us sane, it also a great opportunity to get to know people on a different level. So a huge thanks and big hugs
  25. Sharonvandee

    Hearty Soup Recipes

    Zuchinni Soup 3 small to medium zuchinni chopped 1 onion finely chopped 2 carrots chopped 2 peeled potato chopped 2 litre chicken stock 1/2 cup grated cheese 1/2 cup sour cream Put zuchinni, onion, carrot, potato into chicken stock and boil till all vegies cooked, then add cheese and sour cream cook for further 5 mins. Remove from boil and blend with a stick blender serve with hot crispy bacon bread *bacon can be added to soup for xtra flavour *squash can be used in place of zuchinni