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Everything posted by nan

  1. I had this years ago. I thought I was having a heart attack. It is very painful. I had it before I was diagnosis with scleroderma.
  2. Definitely take your medicine if you have a thyroid condition. You are right to make sure meds don't interact with thyroid medicine. When I was anemic I had to take a huge iron pill daily. I took it the same time as my thyroid medicine. I just kept getting more tired. I finally went to the doctor and my thyroid was barely functioning. I found out that iron affects the absorption of thyroid meds.
  3. Red, I too suffer from fatigue. I have always attributed it to having Sjogren's, Scleroderma, and Fibromyalgia. I also have very low blood pressure. Have you had your thyroid checked? I have underactive thyroid and the iron I was taking for anemia (after a major bleed from watermelon stomach) interfered with the absorption of my Synthroid. Anyway, my thyroid level was off the chart. The doctor didn't understand how I could walk. I have been to a neurologist for headaches and dizziness. He thought I had orthostatic intolerance, but I just have orthostatic hypotension. I am having trou
  4. Tngrits, I too have CREST. I am not a doctor so you could ask your doctor about this. I had restless legs for about a month. It turns out that I was anemic. Restless legs can be a sign of low iron. I have watermelon stomach which causes me to bleed internally. Restless legs are now my cue along with black stools to know if I am bleeding. Again I am not a doctor ,but it sounds like calcinosis is what you are dealing with. Hang in there and you can private message or email me with any other questions. Nan
  5. Kamlesh, Do you think it could be because of H1N1? Didn't you have trouble with breathing when you were sick? Just a thought. Nan
  6. Hi, I have CREST and Sjogren's, so you can have both. I think it is a good question for your rheumatologist to see if he thinks you also have CREST. Take care, Nan
  7. Warmheart, I have allergies and I get allergy shots. I have had bad allergies since birth. So for me allergies came first. Good luck and I think it would be great if you could see a rheumatologist. Take care, Nan
  8. Summer, I too have CREST. I have experienced that type of pain in my toes. Mine hasn't been bad enough that I can't walk, but it is quite painful. Mine doesn't happen all the time. I don't really know what to tell you to do. I would definitely bring it up again with your rheumatologist. Take care, Nan
  9. Craig, I am so sorry. Get going asap on your appeal. I was told by my cousin who is a lawyer to not get a lawyer until you have been denied 2 or 3 times. Hang in there, Nan
  10. Hi, I too have CREST and Sjogren's. Sjogren's by itself can cause extreme fatigue, as can scleroderma, put the two together you get really bad fatigue. I am not a doctor, but that is what I have heard from my doctors and from researching the two. I am lucky in that I don't work, so I can nap as frequently as I like. Take care of yourself, Nan
  11. Patty, I too have CREST and I have had similar problems. I was supposed to have a colonoscopy three years ago and I did all of the prep, throwing up after half due to gag reflux. By noon the next day I still hadn't had a bm. I called in and they scheduled me for the next afternoon and gave me more stuff, but I still wasn't completely cleaned out. GI doctor said it was probably the best I would ever do. Lately, I've stopped using anything and I am going ( not every day), but the stools are very small and hard and I bleed a lot with my bowel movements because I strain so much and the sto
  12. Craig, It sounds like things are going well. I think it's good that you are addressing your depression. Denial is so much easier sometimes. :) Nan
  13. Di, Welcome to the forum! You will have great support here. I am so sorry that you are suffering from such serious complications. I hope that all meds will help you. Take care, Nan
  14. Theresa, This happens to me, but I am going through menopause. I don't know if there is a connection to scleroderma. My scleroderma doctor attributes it to hot flashes as does my gynecologist. Sorry I couldn't be of more help. Nan
  15. Alice, I was told that I have chondromalacia patella in both of my knees. The way I understand it it means softening of the cartilage in the knee. My knees crunch. I am not a doctor, but that's what I understood from my doctor. Take care, Nan
  16. Welcome! You have come to the right place for support. I am so sorry that it took so long for a diagnosis. It sounds like you are getting good treatment now. I send good vibes your way. Nan
  17. Susie, I am so sorry that you are going through so much. I used to dread the motorized carts, but I have had to use them in the past and I find them fun. I have knocked over several displays and done some good wheelies. :) My 16 year old son gets so embarrassed he acts like he doesn't know me. Hugs to you, Nan
  18. My doctor told me that it is the lack of iron in your blood that causes the restless legs. I think it might be a good idea to see if your doctor thinks you should test your blood to check on hemoglobin level. I am not a doctor, but maybe you could tell him your symptoms and see what he thinks. Nan
  19. Kathy, My first major GI bleed was triggered by prednisone. I found out that I have GAVE. Mine is never going away. I have been fortunate in that I have only had two major GI bleeds. I only have had to have two argon plasma coagulation treatments. I know that there are people that have been on this forum that have to be treated monthly and still their hemoglobin is low. My hemoglobin has stayed between 11 and 13 for the past two years without any iron supplements. I think that I am one of the lucky ones. I hope that you turn out like that too. Good vibes are being sent your way.
  20. Hi, I have GAVE. The way I found out was that I was very sick with restless legs, pounding headache, and I went to primary care physician for help. My hemoglobin was 6.1 so I had to be hospitalized and transfused. The GI that did my scope diagnosis me with GAVE. He didn't do argon plasma coagulation at that time because the lesions weren't actively bleeding. In retrospect I should have gone to get help sooner because I had black stools for about 6 weeks. My second bleed I didn't have any black stools. I just had my legs hurting. My hemoglobin came by 7.4. I was hospitalized a
  21. Ann, I had my esophagus stretched and it did help. My husband had the biopsy done for celiac. Neither of us had a problem. Good luck to you. Nan
  22. Susie, Welcome to the forum! Your husband is lucky to have you. I am so sorry that he is dealing with all of the issues that he is dealing with. I don't know of any doctors in your area, but I am sure there are people on this site that do. I was diagnosed with CREST in 2006. Feel free to private message me if you have any other questions. Take care of yourself and your husband. Nan
  23. Craig, You have been given great advice. Get started now if you want disability. I applied in November of 2005. I was turned down the first time. I appealed it and a medical examiner for the state examined me and I got it. I was approved in April of 2006 for state disability and June 2006 for social security disability. I was very lucky because I didn't need a lawyer. I get state disability too because I was a teacher. At the time I applied for disability I hadn't been diagnosed with scleroderma yet. I had fibromyalgia, Sjogren's, Raynaud's, GERD, and watermelon stomach. I also
  24. Cheryle, That's awesome! It is a great feeling when you get that. Sad that you need it, but great to get financial worries off of your mind. I was thrilled when I got mine. Take care, Nan
  25. Shelley, Thanks for answering my question. Nan
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