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Everything posted by summer

  1. Hi Doodlehead, I also have the typical Sclero mouth, during the early diagnosis stage, I walked in to see my Rheumatologist the very first time, and she said, you have the typical Sclero mouth. Maybe a few months after diagnosis, I developed ridges under my bottom lip, of course only I could notice them. They haven't developed any further in the last 2 years :rolleyes: . Summer
  2. Hello all, I know I have mentioned briefly a while back about bowel/motility problems, and know that many of us suffer from this daily. I am trying to sort out my diet right now, I have 20 kilos to lose, thanks to taking Prednisolone 18 months ago. I also have bowel/slow motility issues, which is now taking its toll on me. I see a good rheumatologist as well as a Gastroenterologist, and have tried Motilium and Maxolan to move things along, which hasn't helped at all. I had a Colonoscopy 18 months ago which showed mild Diverticulitis and have had many biopsies taken, all was normal. I do n
  3. Would someone be able to tell me how a skin biopsy is performed? Thanks Summer
  4. Thank you so much for all of your replies. Margaret, yes I do have fibromyalgia, I have never thought that this could be why I have the pain. I do take in the evenings Amitriptyline 75mg, for depression as well as for fibromyalgia. Are there any other treatments for fibromyalgia, beside pain killers? Many thanks Summer
  5. Hi, I have for sometime now have severe body/muscle soreness. It feels as though I have been badly beaten. There are no bruises, but If I touch any area of my body it is extremely sore. A while back, my rheumatologist tested to see if my muscle enzymes were normal, they were, but that was nearly one year ago, and the soreness has progressed. I was wondering whether I am the only person that has this symptom. I have Crest/Limited Scleroderma, no skin issues, but lots going on internally. Thanks Summer
  6. Thanks for the replies. I have a whole lot of problems with both feet, ankles, and Achilles tendons. Xrays done 2 years ago showed: Right Ankle Joint Arthropathy, spurs and tendonitis. The swelling is only mild, but it hurts to bend the foot and walk. My Physiotherapist has also told me that I have collapsed arches in both feet, and my Achilles tendons are not where they should be, hence, the problems. I will see how I get on the next couple of weeks, hopefully all will settle down. Regards Summer
  7. Hi, I have Limited/Crest Scleroderma, and have had it now for 2 1/2 years. Since the beginning, I have lots of pain in the feet and lower leg areas. I have had many ultrasounds and x-rays in the past, and basically been told that I need to stretches, wear orthotics etc. My question is how do you know whether to apply ice or heat packs to a certain area? My main problem at the moment is constant nagging throbbing pain on the outside of one ankle going towards the middle of the foot. It is slightly swollen, and is excruciating to touch, even the bone is sore. Any suggestions would be
  8. Hi Margaret, I have been suffering from esophageal spasms (ES) since diagnosis 21/2 years ago. They seem to come on randomly, I can wake up in the morning and it's there, and it can last for me up to 48 hours at a time. It feels as though someone is trying to choke me and is sitting on my chest, and also have breathing problems, it is not very pleasant. My gastroenterologist prescribed me a low dose Nifedipine to take for the spasms. It didn't help at all. My rheumatologist suggested that I get hemorrhoid cream to start with and rub the cream into my chest, neck area to ease the pa
  9. Hi Lisa, We have had 3 cats' for the last 20 years, our last remaining cat died last year at the ripe old age of 18 years. Regarding the kitty litter, I was the main person who used to change the kitty litter. Back in the days when we were watching our money, we used to buy the cheap old kitty litter which looked like gravel. The dust was terrible pouring it in the kitty tray, and I am sure I inhaled some of that dust. It was only a few years before my diagnosis of Scleroderma, I changed the kitty litter to the biodegradable litter(the one that looks like bunched up cardboard). I have
  10. I was diagnosed with Scleroderma 2 years ago, about 18 months ago, I developed oval shaped marks over my back and buttock area. I went to see my local doctor and she said that is was a fungal infection, and to buy some dandruff shampoo. I was told to wash the areas with this shampoo for some time and it should go. Instead, I had some anti fungal cream at home and rubbed some into the areas twice daily. After a few weeks the marks left me, now 18 months later, the marks have returned and are oval shaped and tan in colour, they have also spread. They are not itchy at all, so I will have to go
  11. When I have an ECHO, I am usually asked to wear a gown, open up at the front, at least I can partially cover up.My bottom half is fully clothed. On my last ECHO, I must have sniffed a little, and was told not to do it, as they were trying to find out PA pressures and sniffing can effect the reading. I never knew that, you learn something every day. :rolleyes: Summer
  12. Many thanks Jeannie and Shelley, I will let you both know how I get on. Summer :)
  13. Hi, I saw my Rheumatologist yesterday, for a 3 monthly check up. I did mention to her that I was currently at the end of a flare. For the last couple of years, I have been experiencing constant itching of my skin, which seems to happen when I have a flare. The only thing is that I have reddish purple like welts on my trunk, sides of stomach and breast area, all is symmetrical. It itches terribly, I have seen my local doctor, who has prescribed Cortisone, which hasn't helped at all. So, I have only been putting on the skin heaps of moisturiser, which has helped some. Once the scleroderm
  14. Hi Joel, Thanks for replying to my post, I have had bacterial overgrowth before, I thought you had to have constant diarrhea all of the time with BO. Maybe I'm wrong...... maybe someone will chime in soon. Summer
  15. Thanks for all of the replies. Shelley, all of my specialists are at a major hospital and they are familiar with scleroderma. I had a colonoscopy nearly two years ago, which showed mild diverticulitis, I also had a number of biopsies taken. I tested negative for gluten intolerance and irritable bowel syndrome (IBS). I am due to see my rheumatologist in a couple of weeks, hoping I can get some answers then. Summer
  16. Hi Janey, I just tried a second time, no luck. Just the grey window again :unsure: Summer
  17. Sorry to complain, why can't I get into the chat room?. I click on the purple bar that says chat, all I get is a dark grey window. If someone can help me I would appreciate it. Summer
  18. Hi Pamela, I don't suffer from constipation or diarrhea, it is quite normal, I just pass small amounts at a time, up to 20 times a day every 2nd or 3rd day. I also have chronic cramps,nausea and sometimes vomit. Very occasionally I get diarrhea at times. Summer
  19. I was just wondering, those with slow motility/ bowel problems, what foods do you eat, or avoid. Do you have a high fibre diet, or do you stay clear of wholegrain foods?. I have been having problems with the above for some time now, it has come to the stage that I rarely eat, and just have liquids/soups. I have seen a GI specialist which hasn't really helped me at all and can't offer me any solutions. My rheumatologist has had me on Maxolan, which didn't work and also Motilium. I am currently not any medications for my motility problems, but need advice from others that have experienced this.
  20. I have been on amitriptyline(Endep) now since being diagnosed 2 years ago. My rheumatologist put me on it for depression ,as well as having fibromyalgia. Before being on it I could sleep 10 hours a night and still wake up feeling exhausted. I wasn't getting that deep sleep that you need to feel refreshed in the morning. I started off on 12.5mg in the evening, and was told to take it approx 2 hours before going to bed. It has now increased to 75mg still in the evening as my mood was going down hill and I felt that I was terribly bruised in the chest, which is fibromyalgia pain. It has helped me
  21. Hi, Does anyone take Motilium for their gastrointestinal (GI) problems, if so, how has it helped you and did you have any side effects? Thanks, Summer
  22. I'm still around and still kicking :D , We're in Victoria, one of the main bushfires was 5 kilometres from us, it was terrible, smoke filling up in our house. I believe temperatures reached 47 degrees or thereabouts. on that day. Our house and suburb is fine for now. I have elderly friends who managed to leave their house with the clothes on their back, dogs anc cars, their house and belongings were burnt out. At least they have their lives though. I'm a little worried about Sharonvandee, I know she is on the border of Vic/NSW, and wondering whether she is OK. Take care D
  23. A few months ago, I remember a link on this forum ,where you could print a medical alert information sheet and write your medications that we are on. It was something that you could carry in your purse or wallet. Does anyone know where this is on this forum. Many thanks Celia
  24. I just thought I would give you an update on my Gastroenterologist visit. One of my main problems is esophageal spasms, my doctor prescribed me 10 mg Nifedipine when needed. I have Nifedipine at home prescrbed by my rheumatologist for Raynaud's, which I have managed not to take. Could anyone tell me their thoughts on Nifedipine for both Raynaud's and throat spasms?. Besides lowering of the blood pressure, what other side effects have you had?. I need to check with my Cardiologist before I take this. My next problem is trouble swallowing when eating food, I need tons of drink to get things
  25. Unfortunately here in Australia most of our specialists/doctors are very slack, even some of the so called scleroderma experts. I expect to get my Echo results next week, which I know that they have found a PA reading. I will ask what the normal range is, and if mine is higher, and if my cardiologist starts to give me any excuses to why he won't do a right heart catheterization (RHC), I will dump him. For me this has been hanging over my head far too long. Mari, I have had many second/third opinions and have seen many so called Scleroderma experts here in Victoria Australia. Not all of th
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