Sue

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Everything posted by Sue

  1. Hi Marj, I agree with Shellie, I think the medication is helping. I take synthroid and norvasc and did not get any relief until I started the norvasc. It does not stop the red, white and blue but when an attack occurs, it is definetly shorter in duration. My attacks used to end up with a lot of pain. Hope your success continues. Sue
  2. Lady Deb, Just a quick note to wish you luck and offer one suggestion. I had a hard time with fatigue and found out my iron was very low. The Dr put me on iron tablets and my iron went even lower. He was baffled but then we checked my B12 level and it was even lower than the iron. We started B12 shots what a difference. It is taking a long time to get my level up but it has improved the fatigue and my iron is even starting to recover. Seems the body needs the B12 to do lots of good things. Anyway, please have it checked. Might help!! Best wishes, Tiki
  3. Kelly, I think we all have had thoughts like those. I know I have. I think that it would be nice to just have a diagnoses. So many of us do not have a definate diagnoses or one that someone would recognize. Please don't feel that you are alone. We are all here and understand. What others don't understand is our day to day frustration and ill feeling. I know I have problems at work when someoone complalins about a cold and how hard it is to work with a cold. I would love to stand on my desk and scream that they are a bunch of babies and that no one realizes what my struggle is ever day to come to work. But then I think why would I do that. I am the stronger person and I know they don't realize what I am going through so you just suck it up and keep going with you life making it hte best you can. Just try and put a positive spin on the situation after you go through you emotions. You may never stop these feelings but make the most of them!!! May I suggest that you get your B12 level checked. I was getting very cranky along with everything else and a friend suggested I have it checked. Mine was very, very low and it does do strange things to you. Seems a lot of people with auto immune problems have low B12. I get a shot every four weeks now and boy I do feel I need another after 3 weeks! It makes a big difference! Keep that head up and concentrate on your life and not everyone elses. I know it is not easy but will help you get through all this!! My best to you! Sue
  4. Hi Brenda, Glad to hear from you but sorry to hear you are having problems. I can offer a few suggestions as I have some GI problems that no one seems to know how to stop. I have had this problem for over 12 years. I have a positive ANA but have no skin involvement (except I am over 50 and have no wrinkles - a positive note!). Seems mine is all internal with most of it in the GI tract. I am either constipated or running to the bathroom every 20 minutes. It was an unending battle. They have run every test on me and cannot figure out why I get very bloated and sick to my stomach so I had to try and figure it out for myself. Here is what I have found out and I hope it helps. It is not what I eat (like yourself), time of day I eat or anything to do with the type of food. This begins when I am stressed or very tired. It is then that it seems my digestive system seems to just stop. Everything seems to just sit and I become bloated and nausauses to the point where I get bad headaches and cannot get out of bed. I can either wait til this passes and I eventually throw up and then spend two days in the bathroom (sorry for the details) or I can get relief by an over the counter anit-gas medicine. If you want to email me I can give you the products name. I have checked with my GI Dr and he sees no problem with me taking this whenever I need it. At the first sign of bloating or I am beginning to feel tired or worn out I take one or two at night and I am back to my normal self. I cannot tell you why this works, but at this point I don't care. It has helped me lead a more normal life and to me that is what it is all about!!! I wish you well and hope that some of this helps!! Keep in touch!! Sue
  5. Hi Jen, I have been on Norvasc (2.5 - lowest dosage) for over a year and love it. It does not stop the Raynauds but the attacks are much shorter and my blood pressure has also come under control. No side effects. Sue
  6. Lizzie, I know exactly what you mean. My bruises turn into brown marks on my legs and arms. They do not go away and sometimes they stay sore for a long time. If I get a cut or scrape, they are the same, even the small ones. I did ask my Rhuem but she was not too concerned. I am going to ask my general practitioner next visit and will let you know what he says. I don't think it is due to the medicine I take (Norvasc and Synthroid) since I had this before I began any medication. I have been diagnosed with UCTD. Not much help except know you are not alone. Sue
  7. Hi Erin, I find that when I walk on a hot day that my fingers immediately swell and turn white. It is painful and nothing I do stops it except rest. I find it very had to attend all the town fairs in the summer, which I love to do, because of this problem. Sometimes it happens when I go to the mall in the winter...who knows. Wish I could offer more help then just letting you know you are not alone, but that is all I have at this time. Good luck... Sue
  8. Hi Barefut, Good idea to check for anemia. Also suggest you have them check your B-12 levels. I have been having a hard time with being tired and they check my B-12 levels and they were low. Started the B-12 shots and WOW what a difference. Not sure why by levels were low, that comes next but the B-12 shots are wonderful. Good luck!! Sue
  9. Hi Nan, So glad you had a positive experience at JH. Can I ask who you go to? I go there also and Dr. Ratain. Is that who you see? Sue
  10. Hi Patti, I have the head sweats too but not as bad. Mine usually happen when I first wake up in the morning or late at night in bed. I had a total hysterectomy (sp) 9 years ago and am not on estrogen so I know it is not hot flashes. I am 53. I have mentioned it to my doctors and they do not know what is going on nor do they seem to care. I wish I had an answer for you but just know you are not alone. I have any appointment in a few months and will ask again, maybe they will pay attention this time, as see if I can find out anything. Hang in there!! Sue
  11. Been reading alot on Cushing's and was wondering if any of you would share your symptoms/stories with me. Would like more info to help me with my situation. I am so tired all the time but heart, lungs and blood are all good. it seems to be getting worse and I am concerned and looking for answers. Thanks, Sue
  12. I know the feeling. The heat does bother me and so does the sun. It is almost like my cooling system does not work right or is very slow. I am not sure why and when I asked my Dr. she did not offer any information. I guess it is one of those symptoms that bother some and not others. I guess we will have to find a place to live with spring and fall only!!! Best wishes, Sue :)
  13. Thanks for the reply, Sweets. I know exactly how you feel. This is one question I have asked every Dr and they have no explanation, even my gastro Dr. My relief for this is an over the counter gas medicine. My gastro told me that it was ok for me to take and that it would not harm me. Email me if you want to know the product. Best wishes to feeling better soon and keep me posted on any new info on this. I am really relieved to hear I am not alone with this. I have noticed that I start to have these symptoms when I am doing to much and am really tired or if I am stressed. Sue
  14. Sweet, A question for you...does it feel like your digestive system is just not working? Reason I am asking is that is what happens to me at times. Seems like nothing is moving and I am full and bloated. It does pass but if I don't take something to help the process along I become very ill with headaches and nausea. Hope you are feeling better and please keep us posted at to what the Dr reports. Best wishes! Sue
  15. Hi Nan, I also go to Good Semaritan Hosp to see Dr. Ratain (John Hopkins Rhuematology Dept). I have seen many, many Dr's in the past 11 years and so far she outshines everyone. The staff is great too! I wish you the best and if your Dr does not work out, please see Dr. Ratain. She is great!!! Good luck...keep us posted!! Sue
  16. Hi Patty, So sorry to hear you are having problems. I had similar problems, maybe not as bad, but the cramping pain would almost make me pass out. I would go from horrible pain and not able to have a bowel movement to diarreha in a matter of minutes. It would drive me crazy but what helped me was even crazier. I now take an over-the-counter gas reduction medicine (if you want, you can send me a private message and I will tell you the specific product name). At least one a day. It has made a big difference for me. I did ask my Gastro MD and he told me he did not see a problem with me taking them. You may want to check with your MD but it really made a difference for me. I hope you find relief soon. You are in my thoughts. Sue
  17. Hi Barefut, I know exactly what you mean. It seems like when I am getting ready to get a flare my wrist does the same thing. It hurts for a few days like I was swinging a baseball bat all day and then in a few days it goes away. Sometimes I have had to put on a brace just to help. My Dr. has no idea why this happens other than arthritis. I also have more Rynauds attacks before I flare up. Not sure if that helps other than you are not alone. If I ever find out more information I will pass it on. Until then, try and relax and take some anti inflamatories. They do help a little!! sue
  18. I am sorry to hear about your son but so glad he is ok. I believe that is a parents worst nightmare, having a state trooper at your door asking for your child. Take a deep breath, relax and do what you have to do. Your son is OK, a little broken but OK. Don't let yourself get run down... We are all hear if you need us!! Sue
  19. Hi Mary, So sorry to hear about your fatigue and back. Keep the faith. Fatigue is a big problem with me and I know how you feel. I get so mad, angry, upset that I cannot do the things I used to, especially when I get a flare. Then I get to the point that I can barely walk up the stairs. My best advice is when you feel like that to just take it easy. It will pass. I know it feels like forever for it to ease up, but it does get better. You may still want to talk to your Dr. A lot of people with Sclero have problems with their thyroid and that could also be making you tired. Good to hear from you and I wish you the best!! Sue
  20. Hi everyone. I am a 52 year old female from PA. I work as a Controller/Director of Operations for a remodeling company. I have a BS Degree in Health Management/Recreation but switched careers about 20 years ago to bookkeeping. I was an avid athlete before sclero but had to give that up - hardest thing I have to do. I have taken up horse back riding (let the horse do all the work) and enjoy any type of crafts/quilting/sewing. I have a partner of 24 years who I would never be where I am without. She is a great person and we have a great home with three cats. I would like to thank everyone who posts, no matter how small your post is because I always learn something from everyone. It is also nice to know that I/we are not alone!!! Sue
  21. Sally, Sorry to hear that you are having these problems. I would suggest that you have your thyroid checked if you are that tired, if you haven't already. An underactive thryoid can create a lot of problems. I have an underactive thyroid and had a lot of bladder infections before treatment. Just a suggestion!! I wish you the best!! Sue
  22. I'm with Sherion. I do not get a flu shot anymore. I used to but have stopped and have have the same results without the flu shot. I think this is an individual thing and all of our bodies are different. Good Luck!! Sue
  23. Hi Heidi, Sorry to hear about your fall, but I agree with Sweet. You go girl!! Don't ever stop living!!! A bruised palm, backside and ego are worth it!! I took up horseback riding about a year ago. I had ridden before but wanted to learn all I could. I was doing well (at least I thought) until we got to cantering. It was hard for me, but I would not give up. One night, as I struggled to get it, my horse zigged and I zagged. I came out of the saddle and landed right on my hip. It was very painful, to my hip and ego. I took me several weeks to recover - nothing broken and I am now cantering away!! I am so glad I never gave up on riding or living. Keep the heating pad hot!! We are all with you!! Sue B)
  24. :rolleyes: Wow...this is great and so easy. I really like this so much better than MSN. Thanks for your help in getting this up and running!! I think I will bring cupcakes to the party!!! Sue