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Everything posted by summer

  1. You are not alone,I have Crest/Scleroderma, and also have severe muscle weakness, especially in the upper arms. To peg the washing out can become very painful. All of my tests also came up clear. I possibly also have peripheral Neuropathy, this will be investigated soon. Maybe there is a link with all of this Good luck Summer
  2. This is interesting, one of my very first symptoms of Limited/Crest Scleroderma was tightness/stiffness of my achilles tendons on both legs. Since having numerous ultrasounds and seeing physios I have been told that my achilles tendons are now not in the right positions. Which is throwing everything off balance, my calves are now being affected, and then there is the pain. Kind regards, Summer
  3. Thanks everyone for replying, I have an appointment with my rheumatologist next week, so I shall be asking a lot of questions. I didn't realise that this is somehow related to Sjogren's, so I shall look further into this. Happy new year to all, Summer
  4. I have Limited/Crest Scleroderma, and also have Peripheral Neuropathy. I'm just wondering whether this is caused by Scleroderma or something else? Many thanks, Summer
  5. Thanks Janey, I am due to go for my Pulmonary Function Test next week, so I will be interested to see if there is any change. I will keep you updated Regards Summer
  6. Thanks Shelley for replying to my post. For the past couple of months, I have finally been able to do 3 days a week, 40 minute walks to the shops, having a short break after 20 minutes. I usually walk at a moderate pace, unless I get tired,then its a slow walk. Yesterday at the hospital, I was told to walk faster than my usual pace, but not that fast that it's too uncomfortable.It was a flat surface. I know that if there is a slight incline or a small hill, I become fatigued and breathless very quickly. I guess I will have to be patient, and wait to see my doctor. If there
  7. I haven't been posting for some time, but read everyone's posts daily. I have Limited/Crest Scleroderma, and have been diagnosed with this for nearly 3 years. I have no skin issues, but my stomach/bowel issues, have worsened this year. I have just come back from the hospital, after having a 6 minute walk test, and an extensive Echo. Last year everything seemed to be within the normal range, and my saturation oxygen levels were near 100%. There has been a change with the Saturation Oxygen levels today. I started at 100%, whilst walking for 2 minutes rather briskly, it plummeted
  8. I have been diagnosed with Crest/Limited Scleroderma for about 3 years now. I don't have any skin issues, only tendon/joint pain, Raynauds and internal thing going on. For the last few months, I have been having problems with one of my toes, the one just before the little toe. I don't have any ulcers, but experience pins and needles followed by the toe being red and hot to touch,and it feels like a sharp hot needle is being pushed into it. This can last a few minutes or up to half an hour. I also am not able to walk at all as the little bit of pressure standing is excruciating. The
  9. I had the TB test nearly 20 years ago, I as well had a positive result. My chest xray was normal, but was told by the doctor to never have another TB test again, as I reacted very badly with the raised lump. I have only been diagnosed with Limited/Crest for 2 1/2 years ago. Summer
  10. I also have this problem, mine looks and feels as though it is bone on bone, all under the feet. I have seen a podiatrist, which has suggested orthotic, I have tried these and they don't seem to work. I do though wear 2 pairs of socks and I find the best thing to wear is clogs. I know they look awful, but they actually work, I use these instead of slippers. I have a pair inside and a black pair which I sometimes wear when going shopping. Regards Summer
  11. Hi Sweet, I also suffer from severe itching which comes in bouts. I went to see a Dermatologist a few months ago, and got a Biopsy done in two areas my thigh and my breast. I went back to get my results, and it didn't show anything significant, only lots of inflammation. I was prescribed a very strong cream, which I doubted would work. Within three days It was completely gone - the itching I mean. I still have the scars though from the rash, and have been told to use the cream for at least a month, even if things appear better. If you want to know what the cream is, you can
  12. Hi Smac, I'm sorry that you are still having problems, if it's not one thing its another. Regarding the blood in your urine, my rheumatologist called me a month ago, to say that my urine sample showed that I had an infection, more specific, a Urinary tract infection. She wanted me to go on a course of antibiotics, I told her that I wasn't having any symptoms of an infection, like burning or urgency. The test was then repeated, and it still showed the infection, I refused antibiotics because I couldn't see the point of taking them without symptoms. Whether this is Scleroderma
  13. I'm a little curious, here in Australia, the Swine Flu vaccine is now available free of charge. I'm unsure whether I should have the vaccine or not. Any suggestions or advice please?. Summer
  14. Welcome Northend Poet, unfortunately I am not able to help you regarding your spot above your lip. Maybe, you ought to mention it to your doctor when you next see them. I just wanted to give you a warm welcome, someone will probably chime in soon and be able to offer you some advice. Shelley, I do have Limited/Crest Scleroderma, all my dermatologist and rheumatologist said was that sometimes people who have an autoimmune disease can get Livedo Reticularis. When I asked whether I need further investigations, they said no. I also mentioned that sometimes, my hand goes very red and swollen wi
  15. Thanks for all of the replies, sorry it has taken so long to get back to you all. I do indeed have livedo reticularis, my dermatologist has just confirmed this. I have asked whether they need to do any further testing, both my rheumatologist and dermatologist has said no. I guess I am going to have to trust them about this. Does anyone know whether I need to keep an eye out with this condition? Many thanks, Summer
  16. I also have had cats all of my life, I don't blame my cats for me having Scleroderma. Mine was most likely triggered for all of the times I changed cheap gravel kitty litter, with the dust everywhere. My cats have given me so much joy over the years, and even if they did give me Scleroderma, I would not part with them. I'm sorry that I am going on and on, it just seems that Cat's are always being blamed for things. No one would say a Dog might give me Scleroderma. Summer
  17. It has been nearly 3 years now since I have been diagnosed with Limited/Crest Scleroderma. I have no skin hardening as yet, but have lots of things going on internally.I also have been having slow motility/bowel problems now for at least 12 months. I am in the care of a Gastroenterologist, which I see frequently. There is not a lot of things that can help me, I have tried Motilium, but it has not helped. Recently I have been experimenting with my diet, to see if anything can help my slow motility problems. I have tried, low fat, high fibre, no fibre, eating less sugars, etc. Nothing
  18. Thanks Jeannie for the link it is much appreciated. I had a good look at the picture, and yes I do have that, except mine is much more purplish/red. They did mention Lupus, could be the cause, but I have limited/crest Scleroderma, do you think that also could cause this.? Many thanks Summer
  19. I have been diagnosed with Limited/Crest Scleroderma now for approx 2 years. Ever since my diagnosis, I have developed a purple/red marks underneath the skin, which look like a splotchy rash. They are in my legs mainly, but can develop in both arms, they are more noticeable if I am cold. My rheumatologist first mentioned it about a year ago, I didn't think much of it at the time, but he checked if I had a pulse near my ankles, which I did. I went to see a Dermatologist a few weeks ago, for another skin ailment, and he also picked up on it, but never said much. I was wondering whethe
  20. Hi Aka, I had an attack of Menieres going back maybe 13 years ago, it is very disabling. With me, I was walking home from the shops, arrived at home, noticed a slight ringing in my ears, all of a sudden the dizziness came. It was so severe, I couldn't stand up or even sit up, if felt like like my eyes were rolling back in my head so fast. The nausea was very bad as well, my husband wasn't at home at the time, so I managed to drag/crawl myself to my neighbours , and she drove me to the hospital. I was in the waiting room in the ER for so long on a stretcher, they gave me an injection of ant
  21. Hi Kathleen, I have limited Scleroderma/Crest, have been diagnosed since 2007. I have very similar results on my PF test as well. My DLCO , baseline test in 2007 was 87%, it is now73% and stable. I haven't had a PFT test since last year, so I will be interested, what the outcome will be. I will be having another one shortly. I also have shortness of breath on exertion and it hurts to breathe at times. I am seeing multiple specialists for my condition. All my Chest xrays and Ct's of the lung are normal. Summer
  22. I have had terrible bowel issues now from the last 12 months. I have had a Colonoscopy, and do have mild diverticulitis, but my GI doctor seems to think it is slow motility. I don't have Gluten Intolerance or IBS, as I have been tested for this. I have gone from having regular bowel habits to passing up to 20 times a day, with terrible cramps and nausea. I have recently been prescribed Movicol to take a couple of times a week, but now am having cramps and nausea, all day, every day :( . I can sympathise with you, the urgency to get to a toilet, especially when out is terrible. I now know w
  23. Hi, I have been suffering from tongue ulcers for a couple of weeks now. Every time I wake up there is a new one, on a different side of the tongue, or, one goes, another one comes. Does anyone know whether this Scleroderma related? :P Many thanks Summer
  24. Hello, I haven't posted on this forum for a while, but I have been diagnosed with Limited/Crest Scleroderma since 2007. I have a question regarding Skin Tightening of the hand. The other night I noticed that one of my hands felt very tight on the palm side of the hand, going towards the fingers as well. My hand was very red and my skin felt extremely tight and the lines on my hand disappeared. It felt as though my skin was going to burst open. So, I put my hand under warm water and dried my hand, it seemed to disappear and my hand was normal again. Do you think this could be the skin t
  25. Hello, I have Limited/crest scleroderma, my Rheumatologist asked the nurse at the hospital to call me last week. Apparently, my urine test showed an infection, I'm not to sure what type. I told her that I wasn't having any symptoms, and felt fine. Should I be concerned about this? Many thanks Summer
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