nan

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Everything posted by nan

  1. Lisa, I am so glad the surgery was a success. You have a brave little girl! Take care and I hope she continues to do well. Nan
  2. Kellyann, I was diagnosis in 1998 at the age of 41 with Fibroymyalgia, Sjogren's Syndrome, GERD, and Raynaud's. I was having muscle aches, severe joint pain, vomiting, and general stomach problems. I also had very dry mouth and eyes. I lost a great deal of weight. I essentially was exhausted all the time and felt like I had the flu. I used to be a ballerina so I used that mentality of the show must go on and just kept pushing. I have one son and he was only 6. We adopted him after trying for 12 years to have a child. I kept plugging along never feeling very good. I tried accupuncture, I tried a nutritionist that I traveled three hours to see, different diets. In 2003 I started having really difficult times swallowing. The upper endoscopy showed nothing. In February of 2004 I had a fluid filled cyst taken off of my knee. The bone scan had shown osteomylitis. I was fortunate. In the fall of 2004 I had a major GI bleed- My hemoglobin went down to 6.1. The upper endoscopy showed watermelon stomach, which is strongly associated with scleroderma. Since bloodwork didn't come back positive for scleroderma the doctor said I didn't have it. Also at this time I had degenerative joint disease in my right thumb. I had surgery in Jan of 2005 and my hand didn't heal properly. I loss a ton of muscle. I was working full time up until GI bleed. I haven't worked since then. I was able to get disability on the second try. In the middle of all of this my thyroid almost stopped functioning. I had had underactive thyroid for years, but the iron supplement I took now interfered with absorption with thyroid med. I went to a new rheumatologist and he did bloodwork and it all came back within normal range. He said that he thought that I didn't have Sjogren's. but had scleroderma sine scleroderma because my skin hadn't changed. When I went to him again he said that he thought I had Sjogren's not scleroderma and that it really didn't matter because all he could treat was the symptons. He told me the only way to get a definite diagnosis was to go to Johns Hopkins. In December of 2006 I went to Johns Hopkins. I was diagnosed with CREST scleroderma, Sjogren's syndrome, and Fibromyalagia. My ANA was elevated. My baseline echocardiogram was normal. My baseline PFT was mildly decreased diffusion capacity but still within normal range. My gastric emptying study showed delayed emptying. I have started noticing tightening of skin in my hands and feet. It is rather painful. I guess you probably didn't want this much information, but it is a long process to getting diagnosed with this stuff. I hope this will help you. Take Care, Nan
  3. Irene, Fatigue is a major factor for me too and pain! I am on plaquenil, but it doesn't help with fatigue. I make myself walk 30 minutes a day. I prefer doing it in a heated pool, but I sometimes mall walk if air temp at pool is too cold. I can't say that it gives me more energy, but it makes me feel a bit better. I hurt a lot while doing it , but I try to focus on something good and it helps. Don't try to do 30 minutes the first time. Shoot for 5. Take care! Nan I have CREST , Sjogren's Syndrome, and Fibromyalgia.
  4. Barefut, The sun is shining brightly here!!! I hope that the sun is shining where you are and that you have a great day today!!!!!!!!!!!!!!!!! A hug to you, Nan
  5. Sounds good! I usually go to a heated pool and pool walk for 30 minutes. I haven't been able to go lately because the pool temp has been 92, but air temp 70. That drastic difference sets off my Raynaud's. Hopefully when it warms up here I will get back to it. I say, "Give it a try!" Nan
  6. Barbs, I knew you could do it. Keep up the good work! Nan
  7. I don't think that the pain is in your head. I think it is always there. What I have been trying to do recently is focus on good things. Like when I get up if I am able to get up I chalk that up to 1 good thing. If I am able to mall walk, that's a real bonus. :D Sometimes I pretend that I don't have sclerodermra, sjogren's, or fibromyalgia, but I will be reminded by a sharp pain or some other fun thing. Take care of yourself! Nan
  8. Dear Jackie, Recently my arms have felt very heavy and my left elbow especially has really been hurting. It hurts when my elbow touches my chair. My hands are really hurting. I believe that the skin is tightening. My foot doctor yesterday told me that the top of my feet and tips of my toes are hurting due to tightening and tendons tightening. Take care! I can't take any pain meds due to watermelon stomach so I don't know what to suggest. Nan
  9. I have had many gum problems in the past. I had to have gingivial flaps cleaned. GROSS procedure!!! I would call your dentist and he might recommend a periodontist. Take Care! Nan
  10. Bless your heart! I hope your job went well today. At least the lawyer called back, but I still don't see why it takes so long!!!!!!!!!!!!!!!!!!!!!! Nan
  11. The tip of my great left toe really hurts. It's really red. That's been going on for awhile, but it's getting worse. This morning when I woke up my left pinky was in horrendous pain. I was pressing on it to see where the pain was and I made the mistake of pressing the tip of it. The pain was so unbelievable, I thought I was going to throw up. It also is very red. It feels tight and it throbs!!!!!!!!!! My hands have been a little swollen in the morning. I am on plaquenil and that usually takes care of that. Has anybody else experienced this? Thanks ahead of time for any input. Take care! :D Nan
  12. Thanks for all of the replies. I went to my foot doctor today and he said that it was the scleroderma rearing its ugly head. The skin at the tips of my toes is really tight. He said that the pain across the top of my foot is most likely from tendons tightening. He said that I don't have hardly any soft tissue in my feet. I asked him about shoes that people with diabetes wear and he thought that that would be a great idea. I made a comment that those shoes were so fashionable and he said that the red stiletto was the style for the spring. He has a super sense of humor which helps me. Stay warm and take care!! Nan
  13. WOW! That is a lot to throw at you at one time. I am on disability and I will give you any help I can. You can email your questions to me. If you have your doctor on your side I don't think that you will have any trouble getting it. It sounds like you have a doctor that really cares. That's good. I am so sorry you are having to deal with all of this. My thoughts are with you. Nan
  14. I have Raynaud's and that's what it sounds like to me. Take care and stay warm. I too have warmers for my feet and hands. They're great! Nan
  15. Barbs, You will do an excellent job! I love your BLOGS. They make me laugh. :D I just told my husband the other night that I wanted to meet you and your geese. The farmhouse you're renovating looks awesome! Take care and keep up the good work! Nan
  16. I felt so much better when I read your post because I know that I am not alone. Most of the time I am in a "brain fog". I have fibromyalgia too so I figured it was that. I feel that it has gotten worse though. Sometimes my husband and son just look at me so puzzled. Bless their hearts! I love to read and I find that when I read my book before falling asleep the next night when I go to read it I don't remember what I read the night before and I have to go back and glance over it. It takes a pretty long time to get through a book. :D Hang in there and take care of yourself. Nan
  17. You might be right! I was upset at first that they wouldn't see me in the Scleroderma center at Johns Hopkins, but I think I ended up with a doctor that I will like better and she has more time for me because she just started out... Take Care and enjoy hand therapy. I had it after my hand surgery and it was awesome! Nan
  18. Hi, I know when I speak about motility I am saying that my stomach takes a long time to empty into my intestines. I am not a doctor but I would think it could mean for the whole digestive tract. I am also constantly constipated. I had a gastric emptying study that showed the slow emptying. It sounds like you have a difficult time swallowing. Have you discussed this with your GI? Sometimes I feel like I am swallowing glass- I feel every edge of the food. I hope that I have answered some of your questions. Take Care Nan
  19. Hi, I am so sorry to hear about your daughter. I am much older , but I used to be a ballerina too. I injured my foot and had to stop. I have CREST(scleroderma), Sjogren's, and Fibromyalgia. When I look back at pictures from my dancing days it's hard to believe I could actually do that. Take Care and I hope that you can find some answers. This is a great place to get support. Nan
  20. Sam, I am so sorry. That is too long to have to wait. I agree with Heidi. Take Care! Nan
  21. Hi, Welcome. I am sorry about your diagnosis, but you will find great support here. I just found out in December that I have CREST. If you want to ask any other questions you can email me and I can tell you all the things I have been through so far. Take care! Nan :D
  22. Jennifer, Comgratulations!!!!!!!!!!!!!!! Have a super day tomorrow. Nan
  23. Sadie, Recently my shoulders and upper back have really been hurting. I don't know how you shoveled snow. I agree with Michael that you shouldn't do that again. Take care and I hope you can figure out what is going on with you. Nan
  24. Margaret, Bless your heart! I am so glad that Gareth is going to see Dr. Medgser. Happy thoughts are sent your way! Nan
  25. I went and got copies of my PFT, echocardiogram, and xrays. On PFT it said that my diffusion capacity was mildly decreased. This is due to scleroderma? I go to my rheumatologist in March, but I was just curious. Thanks, Nan