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Everything posted by nan

  1. nan

    Stress fracture

    I was mall walking each day for 30 minutes at the local mall last fall. I guess I had been walking for about 5 weeks. I got a stress fracture on the fifth metatarsal on Nov. 15th. I was in a soft cast with a shoe for 6 weeks. I was out of the cast for two weeks. I missed a step walking down the steps and refractured it. I was put back in a soft cast and shoe for about 10 more days. The x-ray looked ok, so I was out of the cast again. 7 days later I went back to the doctor because my foot was killing me and was really inflammed. At that point I got put in a tall boot that I could take off at night. I went back a month later and my foot was still broken. At this point I was told to start using a bone stimulator 10 hours a day. I went another month and you guessed it my foot was still broken. At that visit he put me in a soft cast again and put the tall boot over it. I went back after two weeks and he recast it. I go back on April 16th for more xrays. So essentially I have had a stress fracture for 5 months. A fifth metatarsal fracture is one of the hardest to heal because of the decreased blood flow to that area. Also, I have the double whammy because of Raynaud's. Have any of you experienced a stress fracture with slow healing? My doctor said it could take 4-6 more months. Have a super day! Nan
  2. nan


    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.
  3. nan

    Systemic and hypothyroidism

    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.
  4. nan

    Fatigue Issues

    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 trouble sleeping at night due to cut back on sleep med because a side effect can be lowering blood pressure. I also am in more pain lately. I am constantly battling fatigue. Sometimes I will be out and it feels like somebody has let the air out of me like a balloon losing all of its air. I didn't help you much, but do know that you aren't alone. Fatigue is a pain. Take care, Nan
  5. 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
  6. nan

    Had my PFT today

    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
  7. nan

    Bloodwork Results

    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
  8. nan

    Allergies and scleroderma

    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
  9. nan

    Little toe problem

    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
  10. nan

    Disability Question

    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
  11. nan

    Severe Fatigue

    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
  12. nan

    Slow Motility/constipation

    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 stools are so hard. I take two stool softeners daily. I don't want to go to my GI doctor because he says there is nothing else he can do. I think it would be great if you got in to see your doctor. My problems have been bad, but not that bad. Let us know how it goes. I am so sorry that you are suffering so much. Nan
  13. nan

    Disability Question

    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
  14. nan

    So happy to find you all.

    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
  15. nan

    hot head

    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
  16. nan


    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
  17. nan

    Newly, finally, diagnosed!

    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
  18. nan

    For sure Sine Scleroderma

    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
  19. nan

    Stomach Tissue Bleeding

    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
  20. nan

    New member

    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. Nan
  21. nan

    Stomach Tissue Bleeding

    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 and transfused and I had to have treatment this time because my lesions were actively bleeding. I went back 6 weeks later and had another treatment. That took care of it. At this point I have bloodwork done every 2-3 months. I also know now that black stools are a sign of it , as well as restless legs. I hope this helps some. I don't know about the bleeding in the tissue sample. Good Luck! Nan
  22. nan


    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
  23. nan


    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
  24. nan

    Disability Question

    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 had had a botched hand surgery on my right hand and couldn't use it very well. I don't think you should have any trouble getting it. If you have a doctor that knows how to write it up it really helps. Best of luck to you. If you have any other questions feel free to PM me. I too have CREST. Nan
  25. nan


    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