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Posts posted by Sheryl

  1. Lori, so sorry to hear that your child already is suffering from so many different illnesses. Pretty soon the doctors are going to admit it is passed on to our children in some form. We have so many parent / adult child groups heres. Whether it is one illness or many of the symptoms of several that we suffer from it would be wonderful to have a real fix of some sort. Keep us up to date on how you and your daughter are doing. Fretting is fine. We all do this more than occasionally. Life can still be great. Seize each moment as they come and retain the memories for future pick me ups.

  2. Well said Shelley. I guess I won't even bother thinking about that this month. Cutting back on food. snacks, and losing weight slowly and progressively may be the safest bet for some of us. If I had one of those gastric things done the acid contents in my stomach would have a faster route up my esophagus. Ah! no thanks.

  3. amberjolie, when I went through early menopause my doctors kept saying it must be something else. So, I even had a D&C to "fix" things so to speak. That didn't work. For the next couple years I would have one period a year. By forty I hadn't had any symptoms of cycles for 3 years so the doctor finally said I guess you have gone through menopause. Now you are post menopausal. So, it happens with many of us with other autoimmune problems. Be happy emoticon-congratulations.gif.

  4. Sacha, it is very hard when our children are ill. With this disease it sometimes becomes unbearable. I am glad your daughter is doing much better. Please keep us informed on her well being. Others with children with this illness like to stay up to date and informed on what is going on with other children. Happy news.

  5. Chopper, caffeine can cause vessel constriction. Many of us with Raynauds already suffer from vessel constriction. We can have coffee but we need to limit ourselves to only a couple cups daily. If Raynauds is severe enough then giving up coffee for no Raynauds attacks or painful fingers, numbness or swelling is a good thing. It was good getting to know a bit about you today in the Chat forum. Keep reading and asking questions.

  6. Good morning Indy and welcome to the Sclero forums. There is no way to tell with any of us what the progression of our diseases will be. We learn to accept and adjust and get on with living and getting the help we need from our specialist. You mentioned being cold, the Raynauds, and blood pressure. All of the above can be helped with medications. Something simple like Norvasc will help with all three of those symptoms. As your doctors get to know what is going on with you they can treat things as they develop. Depending on where you live, how many months of really cold weather can change the amount of medication you take. I try to leave for many months of the year to spend time with family or friends in warmer climates to make it easier to move about and live with Raynauds, and being so cold. I am lucky that I am retired and I can do this. If you want to click on the Medical section above our posts and go to the area of Scleroderma Experts you can go down to SCTC main roster of Scleroderma Centers. I don't know where you live so just look around the medical areas and ask your questions. There is always someone that is dealing with that situation that may have some helpful information for you.

  7. Weasel, I am not sure by what you are explaining but it sounds a bit like:


    En Coup de Sabre is a term used when linear scleroderma affects the forehead. It appears as an indented, vertical, colorless, line of skin on the forehead. The indentation looks as though the person may have been struck by a sword. You can read in our medical section on Linear Scleroderma and see if it may be similar to what is going on with you. Sorry to hear that you are getting behind in your household duties. We have all been there. Some days or weeks we go through extreme fatigue. The more tired we become the behind(er) we seem to get. Just do small jobs each day when you have a bit of energy. Many of the people have felt like they were being thought of being hypochondriacs but time told the truth for these people. Don't worry what your doctor may think. Tell him/her what you think or feel at any given time. Keep track of those feelings and how long you are having problems. Everything gets put into proper place eventually. Hope you start getting some of your energy back soon.

  8. Hello Ellie, and welcome to your ISN forums.


    From what I have read you gave all the classic symptoms of Scleroderma. You are getting some help now while you are being watched for progression. You are getting Nexium for you reflux issues. Domperidone for stomach or bowel issues.


    If you are having very severe constant unrelenting muscle pain then I am sure your doctors would prescribe something for that. If it isn't constant and it comes and goes on a given day or week then normal over the counter medications are usually recommended by your physician. There are very good medications that work for your muscles and overall body pain.


    Until more severe symptoms occur usually the doctors just watch for changes and wait to see if the things you are taking are starting to work.


    You have come to the right place to ask questions and discuss how you are feeling on any given day. Many of us have had this disease 10 or more years already so we have been where you are heading.


    To stay warm there are hot packs you can purchase that help. You can buy microwavable socks or slippers and mittens. You get used to wearing several light layers so you can peal and put back on with ease. Electric blankets were never enough for me when I was first diagnosed. I had rice bags and anything someone suggested micro waved and put in the bed to keep me warm at night. Heating pads also work.


    Your doctors will watch your lungs for interstitial lung disease. Though that doesn't happen to many of us so don't start to worry about things that may never happen to you. Research and be your own advocate. Knowledge is a great weapon. You will go through many phases from am going to die to, or I can handle this, to excepting and then getting on with enjoying each and every day from this day forward. Ask your questions so you will know how to talk to your doctors about things.


    Best of wishes and soft hugs surrounding you.

  9. Lynnie, I know it can be terrifying loosing your hair. My hair was about 45 inches long and my mom and sister were sitting at my kitchen table and I got up and many long strands stayed on the bench when I got up. Mother said to me what is going on. Go get a comb. I did and she got up and lightly touched the comb to my scalp and started to walk the comb down my hair and it seemed like well over half of it was coming off into the comb without any pulling at all. I was truly frightened as not one of my doctors told me this might or could happen. I went the next day and had about 20 some inches taken off. After a few days my hair stopped coming out. I guess the medications have to come out of our bodies somehow and do damage along the way. It can be scary but you will soon come up with good answers for your friends that will make them laugh along with you. I also have had short hair for many years now. Less frightening when losing it. Not as much in the comb. Keep in touch. I was hoping you would come into the chat room tonight. You are getting some sleep for a change, I guess. Life goes on and we get to go along with it. Many changes along the way but we can meet most challenges.

  10. Have any of you girls had the different colors and different thickness of bands? When I had Frozen Shoulder I was treated for months with shots, therapy, ice, some sort of machine to break up calcium buildup and had exercises at home to do after going three days a week for therapy. I still use the bands for stretching. I also had a pulley system of ropes to pull my bad arm upward using my other arm to pull up my arm from the wrist. It can be painful but you do what you need to do so that you can recover completely. I also would lay on the floor on my back with a broom stick or long pole and work at getting my arms to pull the stick to the floor over my head. Some of the same exercises can be used for both surgery and non-surgical patients. I sure hope all of you get full use of your arms again. I was told that my frozen should could come back at any time. I have had a two year reprieve so hopefully it won't happen again. Very painful 9 months. Best wishes for a full recovery.

  11. Lynn, my brother in law has had Bell's Palsy almost a year. He is much better than when first diagnose. He just happen to be in great contact with his mother in law and she was in the hospital with a severe case of Shingles. He was helping her up and down out of bed and gave her hugs at night. He had no idea he could contact this disease. I guess when there are chances of contacting anything like that we should try to guard ourselves however we can. The shingles shot is available to many as of 2011 with many insurances. It use to be by age for us to be covered now that isn't true.

  12. jdeb, welcome to ISN. You will find out so much information on our many pages of updated materials. We cover many autoimmune diseases. Many of our members help out daily by answering questions or concerns that each of us have. It is good that you have chosen to see a specialist in Scleroderma. I hope you get the help you need soon. Keep us informed on your tests and appointments as they occur.

  13. Ah Barefut, how soon we forget some of our first signs that something wasn't right. I had the cob webs thing going on. Drove me nuts almost. It seemed to go away after awhile. It comes back very occasionally and I think, did I just walk into a real web or was it just a strange feeling I was having on my face again. I am not always in the middle of a room when this happens so it really might be a web. Ha!

  14. Purr, may your surgery be swift and your recovery speed be without to much tenderness, or pain. Have a safe journey into the twilight of pain medication and a safer recovery. Today is the day and hopefully you will be calling one of us tonight to let us know how you are. Maybe you will even be writing us by tomorrow. I'll be thinking about you often throughout the day. You go girl.flowers.gif

  15. mopsygirl, you have come to the right place to seek and search for information. It is funny how we sometimes diagnosis ourselves and wonder why our doctors didn't put 2 and 2 together. I am happy you have found a couple of specialist to go to. When searching for a Rheumatologist I hope you made sure this doctor was treating other patients with Scleroderma. Or make sure he/she had training under a Scleroderma specialist or that they themselves are a specialist in rheumatic diseases. If not you may want to look deeper into the matter. Have you looked under Aopecia for information on the bald area at your hairline. I look forward to what your doctors have to tell you. Others will show up shortly and give you more places to search here on the site to help you out. I am on my way out the door but wanted to welcome you to our group.

  16. NorthStarHope, I am so happy to hear that your sister is finally starting to feel better. I hope she has a very rest full Holiday Season. Just to be alive and well and able to show up for gatherings will be work for her. I sure hope something was finally done that she can stay away the hospital for quite some time. Its good that you were able to be with her for shopping adventure. One day I hope she will venture onto this forum and say hello. We can tell her what a great sister she has.




    I feel so sorry for you getting an addition thing to cope with at this time. My sister had the very aggressive cancer in her breast and needed it removed along with 20 plus nodes running down her side. She had many different treatments. Any ways that was 20 plus years ago and she is still cancer free at this time. She only had a 20% survival rate at that time and things have really progressed medically since then. I also had breast cancer. Mine was caught very early and was encapsulated so I only had to take Tamoxifen for 7 years. I had several cysts removed in both breasts, prior to the cancerous one being found. One doctor said go ahead and remove the breast since breast cancer runs in my family. My surgeon said he took a large enough area around the growth that he was quite certain nothing was left to grow. So, I did keep my breast and that was about 15 years ago. This is a very scary thing you are going to be coping with. Your doctor can give you names of patients that have gone through what you might have to go through. Talk to these people or I can even have my sister talk with you to help you prepare for this major change in your life. We are all here to help each other in any ways that we can. I hope this man sticks by your side, he sounds like a keeper. Well wishes, fairy dust, soft hugs and whispers for strength are being sent your way. We are strong we can overcome all obstacles. We will survive. You can do this.

  18. nildasus, welcome to our ISN forum.


    Most of us are pretty comfortable discussing just about everything here. If you don't wish to talk to your regular doctor about this then make an appointment with a gastrointestinal physician. That is whom you most likely eventually get sent to anyways. Have you had a Colonoscopy lately? These doctors are so use to discussing these things. You won't feel uncomfortable at all.


    When I was dealing with severe bowel issues I thought I was ready to start wearing diapers for the second portion of my life. I hid my problem from most of my family also. I knew it couldn't keep going on. I would eventually get weak and something would have to be done anyways. I was hoping it would go away the same way it started happening to me. It continued to get worse until I was afraid to go to sleep or relax. Mine was a case of severe bacterial overgrowth. A few prescriptions of antibiotics and I was back to my regular self.


    Once this happened to me then It reoccurred a couple more times the first year or two of my illness. I did have to take medication for about two years eventually, to get my entire system back up and functioning properly. I have to say I was so happy not to be dealing with those issues anymore.


    Once you make the phone call you will be so relieved. You will be thinking how nice it will be to get back to normal. Keep in touch with us and let us know how things work out for you. If you need to message any of us privately you may do that also by clicking on the envelope below our Avatars (pictures) on the left of the messages we post. Tell us more about yourself when you wish.