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Everything posted by erika

  1. fragiledancer2, Your problems remind me on my acid reflux problems I had few years ago caused by food sensitivity. For many years I had to take the highest dose of Controloc to decrease acid in mouth and a lot of Xanax to relax bronchospasms. When I stopped eating bread with yeast my acidity has stopped in less than a week. No medicines for that any more. No acidity, no bronchospasms. Hope you will soon find the cause of your acidity. Keep going. Erika
  2. Recently I have read a medical article about SS and morphea overlap in which the author says that this overlap is not a rare case as it was taught. According to the author it is more frequent in patients which have negative lab work. Here is the link of an article:- Systemic Scleroderma associated with Morphea Regards Erika
  3. Although I still do not have proper diagnosis (lab tests negative) my rheumatologist assumes that I have limited systemic (CREST). Additionaly, for 2 years I have a shiny itching part around my belly button which has started to collapse (small hole within the tissue 3-4 mm wide). Rheumy thinks this might be morphea. For me it would be a very favourable diagnosis because it would mean that there is a chance that I do not have difuse sclero. Regards and a wish for long hot summer. Erika
  4. 40 years ago my father had an bowel cancer surgery. His general practice doctor told him that he may have 3 more years to live. My father is now 93 years old and healthy as can be in this age. Do not always trust doctors prognoses. Erika
  5. Dear Girls, Thanks for visiting my topic and finding a time to answer. Of course I will go to optamologist but it may be after my rheumatologist since I won't be able to get appointment so soon. It is important to me that this eye problem seems not to be the case in sclero. May be also something else here. Susie, I am amazed that you have calculated my last eye exam! I would have to check twice to calculate that myself. I go home now. It is nice sunny day outside. Wishing pleasant evening to nearby sclerodermians and night, morning or afternoon to those further. Erika :e
  6. Dear all, I am now in my third year of undiagnosed scleroderma symptoms (of which one and a half since skin changes started). My skin is still relatively stable for a year (changed shiny fingertips, bellybutton, piece of the upper mouth). I have developed starch sensitivity and my food choice is very limited. I can not tolerate pills which contain starch (most of them do). Joints are hurting variably, more or less with no recognizable pattern.I am sometimes on NSAIDs (according to the need). One month ago I have had strong headaches and have noticed that my eye focus is "running awa
  7. Dear Miocean, If I were you I would try not to take antidepresives since they interfere with other drugs you are taking. Easy for me to say. But consider that you have been in such a stressfull situation during previous months (moving is one of the most stresfull situations in our lifes). If you have managed that without antidepresives (did you - I didn't catch the moment you stopped to take them) now when you are back home there is a chance that things will calm down. Especially when your health is so much better. I have been on Xanax high doses for few years because of the pressure in my
  8. Breathe easy nasal strips may help the congestion. Buy it in the pharmacy. Just stick it on your nose on the right place. It opens the soft nasal tissue. Erika
  9. Sometimes you have antibodies in your blood of the diseases which you did not have but you have been in contact with. For example I have antibodies of hepatitis B, which my father had 20 years ago, but I did not. It is like natural vaccine. The body builds it's defence itself. Therefore it is not always good to live isolated under a glass cover. Now with my autoimmunity at hyperactive level, I very seldom get any infection, but if I do I always get well much sooner than my family and colleagues. My body fights too good against everything. It fights even against harmless substances like pol
  10. Miocean, compared to what you have been through already, hand surgery seems like peace of cake. Take care. :high-five: Erika
  11. Hi Miocean, Wooow! As you are progressing you will soon come to zero. Has the function of your hands improved too? Erika
  12. Congrats Miocean! :emoticons-yes: :emoticons-yes: :emoticons-yes: :emoticons-yes: :emoticons-yes: :emoticons-yes: Erika
  13. Dear Judyt, Jeannie, Joelf, Amanda and Shelley, I knew that I will find some similar experiences here and also that the answer will be quick and usefull. I am totally interested to find this low starch book and have sent Jeannie PM with a request to send it to me. I am under a frequent doctors supervision regarding food intolerance and I will let you know about doctors advice. Thanks a lot. Hugs. Erika
  14. Dear all, Allthough I am still not not on immunosuppressant (my rheumatologist advised not to take it yet) I have been reasonably well regarding sclero recently. My joints and muscles are better, skin is not progressing - it is even better, mouth shrinkage has reversed (the skin on mouth has peeled !). However, my food intolerance (or whatever this is) has worsened during the last 3 weeks. I have problems when I eat any of carbohydrates. Any flour (even without gluten) , pasta, rice and even banana makes my mouth extremely dry with white tongue and my stomach cramping and making noise
  15. Hi Susie, Just one tip: it is very good for a diet to make green smoothies. These are mixed fruits (pear, pineapple, mango, apple, banana, strawberries etc.) with addition of green leaves (kale, spinach, lettuce etc.). Do it yourself. Without sugar of course. Keeps you not hungry and provides essential vitamins. There are books about this. Try to google recipies and experiences. You can take as much as you want but it is important to take it before lunch or dinner - not after! Best for breakfast and during the morning. I take fruits for breakfast and than smoothies. Fingers crossed for fu
  16. Dear Susie and girls, Since 3 years ago diet has become part of my life and I am happy for that. I am on a diet due to some food intolerance and in the few months I started my diet I have lost 15 kg. Needless to say that I feel much better and my figure looks much better. I do not have ILD but I had problems with asthma. My breathing has almost completely recovered since I am on a diet. Only my face looks worse but I contribute that to sclero (loosing chin volumn) and aging. The secret for me was fruit for breakfast, salad/vegetables for lunch (with some goat cheese or fish) and
  17. Dont worry Shelley about turning around the words. We, tired/exhausted/fatigue as we are, have not noticed that at all! :rolleyes:
  18. Hi Amanda, I also have PA = 25 of something. Cardiologist said it is border value but in his report he wrote that there is no pulmonary hypertension. I have never heard of wedge pressure(?). I have never heard about lot of things. Keep enlightening us on this issue. Erika
  19. Well done Miocean! Keep going that direction! Happy for you! Thank you for the update! Erika
  20. Hi Lil Dee, I have bought myself electrostimulator (is this machine you are asking about) which has a lot of programs for various purposes. It has massage, TENS, fat-eliminator, microcurrents and even face and breast lifting. It has sticky electrodes and can be used also with abdominal belt. It is in the range of quality of professional devices. I paid a lot for it (some 1000€) but I am satisfied. I do not have to go to physio every time I get pain in joints. It would be too much time wasted. I just apply it in the evening when I watch TV in my armchair. I have heard that some speci
  21. Girls, thanks for comfort, it is nice to have someone to complain to (I can not do that at home). I have wiped the tears of and feel much better now. This low feeling happens from time to time even to the healthiest people. It is not strange that it happens to us. TAke care Erika
  22. Hi Lynn, I don't know about steroid injections but I would like to join your weary feeling. With this illness I feel like Don Quixote fighting with windmills. It takes time and effort to achieve -nothing. But tomorrow is another day, as Scarlet O'Hara said. Looking forward to that! Erika
  23. Dear Andrea, I am in the similar situation as you are. Negative blood work, negative biopsies, all doctors except my rheumatologist deny that I have sclero. My rheumatologist says that according to the symptoms it may be sclero but that they still cannot prove it. I am sure it is sclero. In the beginning (2-3 years ago) I was desperate to find diagnosis. I knew something was very wrong. Now I have found some peace of mind. On outside I pretend that I am healthy (I have told only few closest friends and my family). Only my mouth shows sclero (wrinkles and some thick skin on the upper mo
  24. Me too: I never really understood what this sympa.....whatever represents. Was afraid to ask but taught that it was some kind of amputation. :VeryHappy: Not even similar! Now I can see on the pictures (for which I thank you) and from your posts that this is not such a big deal as I thought. The major "scarf" on the pictures is from the black thread and violet pencil marks. After it heals it will be almost invisible. Good luck. Erika
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