Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Everything posted by Honey

  1. Thanks to all of you who have expressed your feelings and shared you experience. I give thanks everyday for the love given to me and the kindness shared with me.I am learning to accept that I can live daily with whatever circumstances come my way. I will have peace on the mountaintop as well as in the valley. I make my quarterly visit to my rheumatologist in 3 days. I am hoping for a good report. Kindest regards, HONEY
  2. Hello to all. I have systemic sclerosis and grave's disease. I am 58 and have been a professional exercise instructor and personal trainer since 1982. After the diagnosis in January, 09, I had to give up my clients and exercise classes. I continue to teach Gentle Yoga classes (therapy for me and my students), but no cardio and strength classes. I have qualified for disability, and I am so grateful for that. I would like to know if anyone has had the experience that I have had with their bodies. I used to weigh 120 pounds (very fit), and immediately prior to and after the diagnosis I started losing weight (muscle and tissue) very quickly. I now weigh 100 pounds and look anorexic. My arms and legs have lost so much tissue that all of the veins are showing like I am 90 years old. I am literally skin and bones. All of my joints protrude (shoulders, elbows, spine, hips, knees, toes and fingers). I wear long sleeves and pants even when teaching due to the appearance of my body. My torso and face seem to be normal, but the rest of me is shocking. I am not vain, but it does bother me. I am high in spirts and have wonderful support with friends and family, but I am curious about my appearance and if anyone else has experienced anything similar. Kindest regards, HONEY
  3. I was diagnosed with systemic sclerosis in January, 09, and I applied for social security disability in May, 09. I am a fitness instructor teaching group exercise, and needless to say my ability to teach strength and cardio classes came to a screeching halt. I was approved in August, 09. I consider myself blessed. Kindest regards, HONEY
  4. Hello. I was diagnosed with Systemic Sclerosis (Scleroderma) in January, 09. My doctor put me on MTX right away (7.5mg 1x week). I didn't have any side effects except a headache every now and then. I take it on Saturday to give me a full day to rest in the event it wants to react in me. I teach Yoga M-F and can't take a chance of feeling ill from it on those days. It took about 5 months before I noticed the good it is doing. I am no longer fatigued all the time, although I have to watch how much energy I exert at one time, or I will fatigue. Joints are still tight, but they don't hurt as much. I don't, however, notice any improvement in my skin involvement (still hope). It is still very tight and hard. I, too, have lost a total of 20 pounds with the disease, 15 prior to diagnosis and another 5 after diagnosis. It was one of the symptoms that caused me concern when seeking help in why I was feeling like I did, along with a change in the pigment in my feet, pain in my feet, joint indications, and daily fatigue. In one of my blood tests 6 months ago, it was determined that I have Grave's Disease, something that can accompany Scleroderma. My thyroid was overactive and that may have contributed a bit to the weight loss. With medication, it is under control, and my endocrinologist has even lowered the mg I am taking daily. But sadly, my weight has not increased. I used to weigh 120, and if I weigh 100, I am happy. Most times it is 95-100. You are not alone. That is one of the comforts of this site. Many others are suffering with their individual health battles, but one thing is certain. We can fight together. Kind regards, HONEY
  5. As a fitness instructor and personal trainer, I found right away that I could not do any of the strength or cardio classes I was teaching. Now my instructing is yoga 5x weekly and line dancing 2x weekly. I am happy to know that what I am missing is necessary for me. But, of course, I don't think this gives us license to do nothing in the form of exercise. I believe all aspects of my being (mind, body and spirit) are the better due to the yoga practice. It is a gentle yoga without the infringement on my faith or anyone else's. There is a beautiful coming together with each other in the class setting as well as individually. Kindest regards, HONEY
  6. Susie, I know for me it is good to massage and move the joints of my toes and ankles. Otherwise, they stiffen so with more pain involved. Yoga has been good for all of my joints, including the feet. Yoga and physical therapy was the first recommendation out of my rheumatologist's mouth, other than the necessary echo, blood, lung function, skin, and bone density tests. The pain can be so unbearable that I take gabapentin (neurontin) just to be able to walk. Wearing shoes is almost out of the question, as well as socks. I failed to mention that my feet started with swelling and pigmentation prior to the pain and skin tightening. That is why I hesitated to see the doctor at first. I thought it was from being too much on my feet. The skin was so tight at the biopsy that the doctor could not stitch the skin, and had to cauterize it. The skin tightening has progressed all the way up my legs, including the thighs. I have lost so much muscle and other connective tissue, I don't look or feel like the same person. But I manage to keep my spirit lifted, thanks to my family and friends. This disease just sneaked up on me, and now I am learning to live with it. Regards, HONEY
  7. Perfect, My feet are like what you described. It was my feet that first alerted me to the possibility that there could be something happening to me other than just pain in the feet. The skin on the top of my feet is so thin and tight that I still have the scar from the skin biopsy that was done last summer. It took forever to heal. It is very painful, especially at the ankles, with skin peeling and cracking, and HURTING all the time. There is a good possibility it is from the sclero, but mention it to your rheumatologist, and perhaps he will want to view your feet. I know when I was diagnosed, my rheumatologist told me it was scleroderma as soon as she saw the skin involvement of my feet (along with other symptoms). I am sorry you are experiencing this. It is bothersome as well as painful. Warmest regards, HONEY
  8. Debo, I, too, have peeling and cracking of the skin on my outer ankles, where the skin tightening is the most severe. The skin has tightened so much on my feet that I am unable to move my toes and barely my ankles. I do believe it is the sclero that is the cause. I must apply shea butter 4-5 times a day. I was diagnosed with systemic sclerosis one year ago this month. My feet hurt 24/7 and I am taking neurontin (gabapentin) for the pain. It helps a lot, but they still hurt. Wearing socks is painful...forget shoes! I hope you are able to manage your condition. You can ask your doctor for his opinion, most certainly. Kindest regards, HONEY
  9. Hello. Has anyone had success with stem cell research or clinical trials for systemic sclerosis? Warm regards, HONEY
  10. Hi, warmheart. There are so many things associated with our disease that I wonder about, such as the ANA testing and why it is so different for so many people. Like Amanda and you, I, too, am ANA negative as well. I understand that it is not the only tool used to determine or confirm diagnosis, obviously, since maybe 10%-40% come back negative. It is considered secondary to the clinical features when diagnosing scleroderma. Further testing should always be performed. There are some "false positives" that come back for people without any autoimmune signs or symptoms, and many who are diagnosed with diffuse scleroderma without the specific detectable antibodies within the cell. It is something to ponder, indeed. A skin biopsy subsequently confirmed my diagnosis (diffuse scleroderma) after my rheumatologist listened to my clinical symptoms and history, looked at my feet and joints, and made the supposed diagnosis the first time she saw me. Warm regards, HONEY
  11. Hi, Seton. It was not my intention to not reply to your post of a bad sunburn feeling in your skin around your knees and lower legs. That is a good description of the feeling. You are not alone in that symptom. I would say that it is even more painful, as I described the pain in my feet. The resulting cracking and peeling is a pain of its own. I have found so many different symptoms and physical results that this disease encompasses...some that I have not experienced that others have, and I am grateful for that. I believe each individual's journey is similar to others, but personally designed by the body. We are on our own path of destiny with our disease, hoping for another joyful day along the way with peace for our family and friends. Isn't it a relief that we can compare and discuss our pathways with each other? Warm regards, HONEY
  12. Happy New Year to All! May we find restoration to our health and peace for our family and friends. Annie, I, too, can relate in a small way to what you are living with. I have systemic sclerosis and was diagnosed a year ago this month. Prior to the diagnosis, and what prompted me to see a rheumatologist, was the skin symptoms that occurred in my feet, first with swelling and no pain, then after a few weeks, warmth, tenderness, pigmentation, and skin tightening. There was such intense pain, as , if electrical charges were being applied, and I couldn't wear shoes or socks. The sheets and blankets hurt so badly, I couldn't use them to sleep (if I could sleep at all). Like you, it hurt so much to have anything touch my feet, and because I couldn't wear shoes, if I hit my foot or something fell on it, the pain was unbearable! It was like they were on fire! After the diagnosis, I was prescribed neurontin for the pain. But, as the disease progressed the tops of my feet and ankles started to crack and peel. I applied lotions and creams, it seemed all day and night, but it did not stop the skin from peeling. After a year, the neurontin has eased the pain somewhat in that I can walk, thankfully, but shoes and socks are still painful because the skin is so tight. The "electrical charges" that were constant in my feet happen only a few times daily. My ankles and feet continually crack and peel, and I apply cream throughout the day. This is just a daily routine now. I hope you find relief very soon with the correct diagnosis. I was fortunate that my rheumatologist gave me a suspected diagnosis as soon as she saw me. Of course, there were other conditions that were present and had occurred physically that led her to this conclusion. I had the necessary blood tests, but they could not confirm scleroderma due to normal ANA levels. A skin biopsy confirmed her suspected diagnosis. I have been introduced to more doctors in specialized fields than I ever thought I would...cardiologist, pulmonologist, endocrinologist...all for my health to be monitored. Kindest regards, HONEY
  13. Hi. I think I can relate to what you may be going through. Before my diagnosis, my feet became pigmented, warm, tender, and so sensitive that I could not wear shoes or socks. Going to the rheumatologist, I was told it was scleroderma. Skin biopsy confirmed it. The skin thickening started right away, my feet were the starting point. That was January, this year. Like you, even the blankets and sheets were hurtful. Walking was the worst pain! I was prescribed Neurontin (Gabapentin-generic) for the electric nerve-like pain, and it has made a big difference. Talk to your rheumatologist. Warm regards, HONEY
  14. My local SS office, too, is very patient and kind to deal with. It is my concern that staying with our current health plan might be less expensive, especially since my husband's employer pays almost half of the cost. Things will change when my husband retires in a few years. I will call my SS office for information. Thank you so much, Peggy, for your reply. Warm regards, HONEY
  15. Hello, friends. I have systemic sclerosis (diffused scleroderma) diagnosed in January, 2009. I applied for disability in May-June this year, and was approved in August. I started receiving benefits in September. I am wondering about MEDICAID application, since 2 years is a long time to wait for medicare. Should I contact my local office and ask them how to apply? Warm regards, HONEY
  16. Hello. I was diagnosed with systemic sclerosis in January 09, and have been on methotrexate since February. I was taking prednisone for 5 months, but my new rheumatologist weaned me off of it. I am severely deficient in Vitamin D, and now taking 50,000 iu weekly. In August, I was diagnosed with Graves Disease, and am taking methimazole. I thought my 20 pound weight loss and 30 bpm increase in heart rate was due to the scleroderma, but more than likely due to Graves Disease. I find it disturbing that my cardiologist did not recommend the TSH test. I am also taking propranolol prescribed by my endocrinologist for my rapid heart rate. I am due for blood work in 3 weeks to see the progress of the meds. My feet are severly scarred from the sclero, as well as my lower legs, including my knees, making it very painful to walk and stand. I have just received approval for social security disability, for which I am extremely grateful. I have posted a few comments to these forums, more when I was first diagnosed, and have found them to be very comforting. Kindest regards, HONEY
  17. Hello everyone. I have not posted in a while due to changes in doctors and changes in my health. To answer this question, when I first started taking methotrexate (MTX) (systemic sclerosis diagnosed in January 2009), it took about 3 months before I started to get my energy back. Then I really had a lot of energy these past 2 months. When I found a new rheumatologist, she did a TSH test and found I had none, indicating a very high production of thyroid hormone. I was diagnosed with Graves Disease. I think it must have been this that was causing my losing 25 pounds in 4 months and an increased heart rate of over 30 bpm. All the while I was thinking it was the sclero. I am fortunate to have found a doctor who wanted to confirm the diagnosis from my previous doctor, not just work with the diagnosis. A skin biopsy confirmed it, and the additional blood work indicating the thyroid being attacked by my immune system as well as my connective tissue is now being treated. My endocrinologist has also prescribed beta blockers for the heart rate, and I found it thought provoking that my cardiologist didn't even mention the possibility. In a month we will find out how it is working. I hope I don't have to consider the radioactive iodine treatment, although I understand there is nothing to worry with it. Kind regards, HONEY
  18. Hello, again. I omitted that my feet and legs are warm and tender, just as you are feeling. That's one of the first symptoms my feet and legs experienced, and it is still with me. HONEY
  19. Yes, me, too. I have constant burning pain in feet and skin peeling at ankles. Skin is so scarred on feet, that at skin biopsy, the dermatologist couldn't stitch the skin. She had to cauterize it. My calves and shins hurt because the skin is so thick and shiny there. I wake up several times at night due to the pain, and wearing shoes is foreign to me. Even socks hurt. Walking is painful, too. I take neurontin, and it helps the pain a little bit. I have been on methotrexate since February (diagnosed with systemic scleroderma in January), and it is just now starting to help me with not being so fatigued. I am hoping it will suppress the immune system from being so aggressive. I was taking prednisone 10mg daily, but my new rheumatologist is weaning me off of it. I should be completely off of it in 2 weeks. My thyroid is being tested because of low TSH levels, as well as my Vitamin D. I see the doctor in 2 weeks and will know more then. You are not alone in this. Although its symptoms are exceptional, there are many people with similar pain and consequences of this disease. Be blessed, HONEY
  20. Thank you, Shelley. I so much appreciate your suggestions. I will update as soon as I know more. HONEY
  21. Hello, friends. I am still slowly losing weight, although I have a great appetite. My bodily functions seem normal, too. I started losing weight prior to the diagnosis of systemic sclerosis in February, about 15 pounds. I have lost 10 pounds since January. All of my joints are poking out, hardly any muscle and tissue left. I am going to see my rheumatologist in July, and this will be a topic for discussion. Any suggestions? HONEY
  22. Hello. I have been on Methotrexate (MTX) with folic acid since February and I understand it is supposed to reduce pain and inflammation in the joints and improve daily physical function. I am not sure how it is supposed to suppress the immune system, but I know that blood tests are generally required to make sure it doesn't cause damage to the liver or other internal organs. It is normally prescribe for arthritis, but is commonly used for scleroderma. I was diagnosed in January very quickly, so I am uncertain how I would have felt had diagnosis not been made so swiftly. I do know that I haven't had side effects from it, and my joints are not swollen and painful as they were except in my feet (where the disease first made its outward appearance). Hopefully, someone with fuller knowledge of the drug can shed more light. Kindest regards, HONEY
  23. My fingers have tightened so much that I am unable to wear my rings for falling off! I will have to have them undersized, hoping fingers don't swell again. HONEY
  24. Hello, again. It is great to write to you and anticipate your reply. Yes, I am on medication...prednisone 10mg daily for the inflammation and general well feeling, methotrexate (MTX) & folic acid for the joints (primarily a rheumatoid arthritis medication), and neutronin (primarily an anti-seizure medication) for the nerve pain in my feet. I have no side effects from the meds thankfully, and they help me tremendously. I missed a prednisone pill one day, and my feet let me know right away. I have lost 20 pounds of muscle and other connective tissue with this disease. The collagen just squeezes it together and it sure is painful. I think the last time I was 94 pounds was when I was in 9th grade! All of the dedication to strength and cardio workouts so I could be strong in my older days probably delayed its onset; maybe with you, too. Swimming is an excellent choice of cardio. And it feels so good to be in a pool moving and having fun. I take my grand-daughter to our club's pool and it is a blast! I, too, focused my workouts on cardio and strength, and wanted so much to teach Yoga, being certified, but just didn't have the time for it on my schedule. With a second club opening on the other side of town, I was able to adjust my schedule at one club, and start teaching a Gentle Yoga class 3x a week. It was just what my body needed, to focus on strength and stretching with restoration and relaxation. And you know what? Right when I started teaching it is when the carpal tunnel, TMJ, and skin manifestations of scleroderma appeared. If you seek swimming and yoga as a regimen to your exercise program, you will be pleasantly surprised. It will be a change, but for me, a change for the better. Yes, my students are wonderful for me, and most of them have some physical issue they are living with; fibromyalgia, arthritis, back and knee conditions. I fit right in. It makes for good fellowship. Keep in touch, please. Let me know how you are doing. It is great therapy to know others are living with the same or similar health conditions. I feel comforted and encouraged to know others share in the same emotions and thoughts I have. Kindest regards, HONEY
  25. Carol, thanks for your reply. I have had to retire from personal training and all cardio and strength classes, but I am teaching 3 Gentle Yoga and 2 Line Dancing classes a week. I am very grateful I can continue those forms of exercise. I have contractures in all joints, which makes range of motion very small; especially in my knees, wrists and elbows. I wouldn't be surprised if the trouble you are having now with muscles and joints isn't related to scleroderma, if that is what you are diagnosed with. My journey may have started with the Raynaud's in 1994, but a 18 months prior to the diagnosis, I had carpal tunnel in both hands. I was truly perplexed as to how I got it, but attributed it to using the tubing in one of my strength classes. I had surgery on my right hand and a few weeks later I had dental surgery. My dentist asked me if I had arthritis of the jaw after reviewing an x-ray, and I told him that I didn't. He said it was either arthritis or TMJ. I was astounded once again that I could have something else I didn't anticipate. I also started to feel tired and fatigued a lot, but I attributed it to "getting older." One good thing happened, however. The carpal tunnel in the left hand disappeared. It was just a couple of months after the dental surgery that I had my first skin symptom. My feet started swelling and the skin was pigmented, warm and tender. It progressed to where I could hardly walk without pain all the time. Range of motion in my knees started to decrease and my grip never came back after the CT surgery in the right hand or even in the left. My knuckles were swollen before the CT, and never released. My doctor told me that I needed to see a rheumatologist since it wasn't vascular or bone related. I did, and the rest is history. The scleroderma was manifested in my body as several different things before it started to aggressively attack me. It is amazing how your body will react to changes in itself. I was getting all sorts of reactions, and had no clue it would have been scleroderma until the changes in my joints and skin. I had learned of scleroderma after seeing a documentary several years ago. I was praying that I wouldn't have it, but my rheumatologist told me right away just from seeing how my feet and legs looked. Oh, that was heart-breaking. Each day is a gift for me and my family. It put my life more into perspective, for sure. As far as living actively, you may still be able to. I am still teaching exercise and playing with my grand-daughter, the two things I love the most. Just take one day at a time...that's all you can handle anyway. Just be grateful for what you have, not what you may not have. Kindest regards, HONEY
  • Create New...