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perfect

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About perfect

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    lupus
  1. Hi, I thought I would let you know that I have this quite often, in fact I was diagnosed with IBS for quite a few years now, but the symptoms were getting so bad, (I also work full time)so I know how hard it is. I ended up having to have a colonoscopy which showed that I have colitis. My Primary care giver said that the IBS, colitis, is all disease-related. I can really relate to your plight. I also have to plan out everything, when I eat, where I am going, how long will it take me, will I make it there before I have to go again. It is very embarassing and sometimes I do have an accident. Stress seems to make it worst, along with eating dairy, raw vegs, lettuce, just to name a few. Although sometimes it seems it does not matter what I eat. Have you tried over the counter anti diarhea meds, I find it does help a little. Good luck, to you and so sorry you are suffering with this also. Susie
  2. Hi Jeannie, thank you for your kind reply. I am going to have to see about this GERD, I have had acid reflux throughout my life, but not like this where my throat actually burns from it and I feel like it burns all the way up my esophagus. I did mention this to the pulmonary specialist last week, and he said this needs to be treated because it can have something to do with lung involvment. I did research this and did see it should not be ignored, it should be treated. He did say he was going to prescribe something for it so I will see him again the 16th and I believe that is when he will do the prescribing. You are also right about the right and wrong foods. I learned this years ago, but right now it just seems like what ever I eat or drink causes it that is why I thought maybe it was the plaquenil, but like I said I really do not want to stop something that I know has made me feel a little like my old self again. Thanks again Jeannie and I hope you are doing ok also. Sincerely, Susie
  3. Hi Dales Girl, I am so glad you brought this up. Before I knew I had CREST, I had been suffering for the past three or so years with reacurring vaginal infections that would lead to UTIs and then to severe bladdar infections where I thought I was going to die. Now if I get any type of discomfort in that area, I am worried I have something started again. My primary care physician a couple of years ago prescribed a estrogen cream for the vaginal area because it was very very dry. I thought it was my age, now (56) I was blaming everything on my age, stress, etc. Now I think it had to do with the whole scleroderma picture. I really do not try to blame everything on this disease, but when I finally got diagnosis this past Jan. it was a light bulb went off, and I started to connect the dots. So I would say go back to your doctor and ask about the estrogen cream or such, because a lot of times when we have the discomfort it is really just dry. Really I am not a MD so I hope I do not sound like I am giving medical advice just my own experience. Good luck to you. Susie
  4. Hi, I have not posted for a while. I have been a little over whelmed with this all, but I have a question. I started taking plaquenil about two months ago. Now the past few weeks I have reflux really bad, burning up into my throat so bad I feel I can not swallow food. I do but the sensation is there that I will not be able to from the burning. Could this be from the plaquinil? Has anyone else ever had this happen after taking plaquenil? I wonder also if it could be the stress I feel I am under with all the tests, and diagnosis recently with lung involvement, being told I am a complicated case (yikes), who isn't who is diagnosed with Scleroderma? I will say that the plaquenil has seemed to help, I am almost afraid to say this for fear I will have to revoke these words, but I do not hurt half as bad as I have for the past few years. YEAH so I really hope I can keep taking this. Thanks everyone for your support, and know even if I am not posting I am reading all your posts and appreciate all the great discussions and keep you all in my thoughts. Susie
  5. Hi Snowbird, I do not know if I am right or not but I believe they stay, that they do not come and go. I have had this area on my face for a few years,and did not know what it was, until I finally got the diagnosis of crest, scleroderma just recently.Then all of a sudden it all made sense. I hope that helps. Have a great day, Perfect
  6. Wow, ladies, I really thought it was just me. I never thought the bra thing could be related to all of the symptoms of scleroderma, but it makes sense. I never, never wear one at home either. I can not stand anything tight around my rib cage, or around my waist either in fact.I have had to buy my bras with front hookers and a size or two too big. The front hooks because with my fingers hurting so bad, I could not hook a back hook, nor can I pull down a sport bra. As far as my waist goes, I have not for years worn anything remotely tight around my waist, everything is bigger so it hangs a little off the waist, or is stretch material. In fact I would rather wear a dress, instead of pants. With a dress nothing touches anything. Thanks ladies for making things become clearer to me. Best Regards Perfect
  7. Shelley I just want to apologize for not signing the post, so here goes, hugs to you too, Perfect
  8. Honey, thank you for your reply, I certainly appreciate your sharing with me your syptoms, like mine. I should have been alert to the changes of my feet also, before I did. They have hurt for a long time, but I have worked retail for over twenty two years and thought they were just old feet but the top of the instep where it hurts so bad, should have alerted me sooner. Like you said the skin on my feet is so taunt that every little vein and ripple and bone is sticking out. I do believe that is the disease. After giving it some thought last night, I decided to try massaging my foot, and then kept bending back and forth no matter how it hurt, because I did read that physical therapy is good for this disease,I know I should not just do these things without talking to a doctor, but I had to try something, well this morning it felt better, now whether it helped or it was just time for it to feel better I do not know but I have to work the rest of the week and I will see what happens. I hope you feel better also, and I am so sorry to hear that you have this problem too. Sincerely, Susie
  9. Shelley, thank you for you reply. I did not even think about the type of doctor I should have for a primary.I have a nurse practitioner right now. I will certainly investigate this. It makes sense. When I woke up today, my foot felt better, amazing since I could hardly sleep last night because it ached so. Who knows, tomorrow I have to work so I will see when I am done with a 9 hour shift how they feel, and if it starts again I will make a appointment. This diagnosis is so weird to me, I am not a complainer, and I have a high tolerance for pain, I hate going to doctors, or calling them so I guess my attitude is going to have to change.
  10. I was wondering if anyone could answer this for me, my one foot is hurting so bad for two days, it is the top of the foot and the toes, the other foot hurts also but not as bad. I have had this before but not to this extreme, and it did not last this long. It throbs like a toothache would throb.I have tried an NSAID but that has not helped it either. I know I did not hurt it at all, just woke up the other morning with this severe pain. I have noticed my feet lately are looking so thin, (LOL the only part of my body) like there is not enough skin on them, on the top. I have had no fat pads on the bottoms of my feet for over twenty years, and my toes and feet have hurt for a long time, but not like this. Could this be the scleroderma? Is the thinning look from the disease also? I have also started the last few months with my other foot's ankle hurting bad, when I get up in the morning. My feet do not look swollen, but it hurts like it is. Is this something I should let my rheumatologist doctor see? I was just recently diagnoised with Crest, Scleroderma, about a month ago, and do not have a follow up appointment for two months. Any help would be appreciated. Sincerly Perfect
  11. Hello everybody, another issue that I feel passion for. I too have the severe dry throat and mouth dryness, in fact it was so bad a few months ago at work while taking care of a customer I thought I was going to pass out, I could not swallow and I could not get any spit to make myself swallow ( this was before I was diagnosis with sclero, they thought I had lupus) ended up in the emergency room. I have had this for a while waking up in the middle of the night panic thinking I could not breath because I could not swallow. It is amazing to me all these symptoms that you all have is what I have been living with for a few years, just thinking it was me or the extreme stress I was living with, thank you to all of you for being here and sharing your stories for all of us. It really does help. Sincerely, Susie
  12. Wow, I really know what you all are talking about when you talk about your feet. My feet have been so bad, for many a year. I have no foot pads on the bottom of my feet at all, my toes, the tops of my feet and ankles hurt so bad also, this is a more recent development, but I had no idea it had to do with the scleroderma when I read all the posts, it is describing me. I am so sorry that you all have the same issues, but you really make me feel that I am not nuts. All these symptoms all these years, and now I know what it was and is. My ankles feel like the skin is tighten so tight over the ankle bone, I thought it was sprained but this makes more sense. I work 8-10 hours a day retail on my feet, sometimes when I get home I take my shoes off and I can not even walk. Wow I feel so enlightend thank you. P.S. You also talked about the tendonidis in the shoulders and that is also what I have my rheumatologist doctor told me. I thought it was arthritis, I did not know when he told me I have that, that it was also a sign of this disease. Again thank you for clearing up a few things for me. P.S.S. Do any of you have your nails on your toes thicking also? Susie
  13. Hi I am so sorry that you have to go through all of this. It is so scarey to have something wrong that doctors do not know how to treat. I hope that you will be feeling better soon. Susie
  14. perfect

    itching

    Hi, I also was just diagnosed in January 2010, but have suffered with the severe itching for the past few years, sometimes so bad I would be up all night itching. There was a time that they gave me a steroid for a short amount of time that did help but then when the steroid was gone, it came back. I found that when I shower in the morning, I put on a after shower oil. I am not sure that I am allowed to tell you brand or anything, but it is a oil made from sesame seed, which it does help me. You do not rinse it off you just pat dry. Plus the dermatolgist gave me a pill called cyproheptadine that I take twice a day.I am not sure that this is helping or not, it is so hard to tell with all this. I also am so bad at night I can not stand anything touching my skin, just cotton with no seams, or tags. My eyelids itch awful too. I feel for you, I wish I could offer more suggestions, I do have cortisone cream but when the itching is so wide spread I feel like I can not put on enough of it, or spread it far enough around all the parts of my body. I wish you good luck Susie
  15. :) Hi, enjoytheride, I love your name here lol. I agree with you about the ups and downs, one day you are all positive and the next you feel confused sad, a little cheated, at least that is how I am feeling right now. I am more confused than anything I think. Just not knowing if I should continue my education, I am 55 almost 56, should I spend another year on this, and they want me to do an (internship) at a clinic, (will I be sick during this period) I am afraid to schedule something like this, considering I just found out that I have this diagnosis. What to do, what to do? You were also right that I will find help and comfort on this site, I already have. Thank you and have a great weekend, I am Susie
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