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Posts posted by nan

  1. 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.

  2. 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,



  3. 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.


  4. 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,


  5. 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,



  6. 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.


  7. 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.


  8. 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,


  9. 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,



  10. 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.



  11. 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.



  12. 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!



  13. 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.



  14. 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.



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