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Shelley Ensz

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Posts posted by Shelley Ensz

  1. Hi Sakar,


    I'm sorry you are having such a rough time with this. Please check with your doctor about it. Generally the recommendation is to eliminate or cut down on laxatives if they are working too well. Chances are you don't need a remedy (laxatives) for a problem you don't have (constipation) -- especially since not everyone suffers the same side effects from medications.


    See our page on Bowel Involvement for an array of possible treatments. Many people are able to control issues with very careful management of diet and exercise. Eating just some oats in the morning is a starvation diet, which can have disastrous effects on your health. So please get in touch with your doctor and back on track soon, and let us know how things improve.

  2. Hi Dave,


    That sounds more like a near-death experience than a little "bump in the road" to me. But it is probably your manner of taking things in stride that will pull you through the whole transplant procedure.


    I'm sorry your transplant is delayed, but at least it has not been cancelled. I'm sorry about your dog passing away, too. It sounds like a tumultuous time, but your flexible attitude will go a long ways towards making the very best of all situations.

  3. Hi Sweet,


    Abdominal distention can be basically harmless (from eating too much or swallowing air) or be caused by irritable bowel syndrome or partial bowel obstruction. See:

    Scleroderma Bowel Involvement and the article for abdominal distention listed there.


    The distention alone probably wouldn't be so much of an issue, but since you also have other symptoms, you should check with your healthcare provider. A simple thing would be to call your local E.R. (since its the weekend) and ask to be screened by a nurse, who can advise you whether you can safely wait awhile on it or if you need to be seen pronto.

  4. Hi Jaxs,


    We have a whole section on Scleroderma and Sleep. There are many interesting articles there, and here are a few of them:


    Scientists Finding Out What Losing Sleep Does to a Body. Beyond leaving people bleary-eyed, clutching a Starbucks cup and dozing off at afternoon meetings, failing to get enough sleep or sleeping at odd hours heightens the risk for a variety of major illnesses, including cancer, heart disease, diabetes and obesity. Washington Post. 10/09/05.


    Long-term sleep apnea as a pathogenic factor for cell-mediated autoimmune disease. This hypothesis strengthens the evidence pointing to the danger of unresolved sleep apnea by a mechanism previously unrecognized, namely the risk of developing an autoimmune disease. PubMed. Med Hypotheses. 2005 Aug 3. (Also see: a href="."/medical/research/causes/a-to-z.html#apnea">Causes of Scleroderma)


    Sleep disruption in systemic sclerosis (scleroderma) patients: clinical and polysomnographic findings. Patients with SSc have significant disturbance of their sleep. Esophageal dyskinesia and dyspnea, which are common complications of SSc, were commonly associated with indices of sleep disruption. RLS (restless legs syndrome) but not sleep apnea appears to have an increased prevalence in SSc. PubMed. Sleep Med. 2002 Jul;3(4):341-345.


    Systemic Sclerosis Associated with Sleep Disturbances. Two common complications of systemic sclerosis, esophageal dyskinesia and dyspnea, are related to indices of sleep disruption, according to investigators. Also, restless legs syndrome appears to be more prevalent in patients with systemic sclerosis. Sleep Med 2002; 3(4): 341-345 Doctor's Guide 8/13/02


    Sleep Apnea People with untreated sleep apnea stop breathing repeatedly during their sleep, sometimes hundreds of times during the night and often for a minute or longer. American Sleep Apnea Association

  5. Hi Sam,

    I'm very sorry that your hands are so painful and hope they settle down soon.

    CREST is just another term for Limited Systemic Scleroderma. The "limited" part only refers to the fact that the skin involvement is usually limited to the hands and/or the face. In other aspects, it can affect any or all of the internal organs.

    Sclerodactyly is the "S" in CREST and it refers to the swelling, tightening, and sometimes eventual hardening of the hands, which is where the very abrupt but sometimes apt phrase "the disease that turns people to stone" comes from.

    So yes, CREST (Limited Scleroderma) can affect the hands. The initial phase is usually swelling, either with or without discomfort or pain. Sometimes it stops at the point or recedes. In other cases, it can advance to tightening; and in a few cases it progresses to hardening. Generally the process takes years, but in the very worst cases it can seemingly take place in a matter of weeks.

    Of course, I'm not a doctor, I have no medical training at all (etc.) But you should report this symptom to your doctor. Occupational therapy for the hands can be beneficial but needs to be started right away, as it is easier to prevent progression than to ameliorate any damage that is already done.

    The best thing, of course, is to have a scleroderma expert on your medical team. Most regular doctors or rheumatologists are lost at sea when it comes to scleroderma and thus do not properly monitor or treat the illness, or actively work to try to prevent complications.

  6. Hi Lynn,


    Welcome to the forum! I'm sorry you have lichen sclerosus and I hope the itching settles down for you soon in this round. There are some treatments for lichen sclerosus now, which might help quell things a bit.


    Just so new forum members understand it, and as you know, lichen sclerosus is not any form of scleroderma. Rather, it is a separate skin disease which is sometimes confused with morphea scleroderma and which sometimes occurs in overlap with morphea scleroderma.


    We serve people with scleroderma and related symptoms and diseases, so you are definitely in the right forum, but many people here will be referring to scleroderma and other skin and autoimmune diseases here, or just assuming you are referring to scleroderma. So I just want to let people know that the symptoms you describe are not due to any form of scleroderma, but rather, lichen sclerosus. Again, our link is Lichen Sclerosus et Atrophicus.

  7. Hi Barefut,


    I'm not positive, and of course I'm not a doctor and I have no medical training at all, but I think this would qualify as the very first case of Hexagonal Round Dot Scleroderma of the Knee Caused by Alien Abduction. And I can't hardly wait to see the protocol for the clinical trial investigating this phenomenon. :blink:


    More seriously, but not much, I've never heard of scleroderma appearing in the form of a perfect hexagon of dots on the knee, so we can probably rule out scleroderma as being the cause of it.


    It could be some sort of weird and hopefully non-alien rash; you'd have to check with your doctor on that, of course. Or, just put yourself on display at the Ripley's museum? Hmmmm....

  8. Hi JJ Knitter,

    We can all certainly try to answer that question here, but I thought you'd love to know that we have a great and thorough article about this in Voices of Scleroderma Volume 2 - by Professor Carol Black of Royal Free Hospital in the U.K. She is simply one of the very "tops" as far as scleroderma experts go, and it is a long article about pulmonary hypertension, and its diagnosis and treatment.

    Just go to ISN Secure Donations and Purchases, and select the Volume 2 book. You can purchase it by mail (check or money order) or by credit card or PayPal.

  9. Please keep in mind that I'm not a doctor and I have no medical training at all. It's my understanding that as long as the injured area itself isn't prone to Raynaud's, and as long as there is no other reason not to take Ibuprofen, you should be able to nurse any injury along as you used to do.


    For example, I broke my ankle and immediately elevated it, took pain meds and applied ice, until we could get to the hospital. My toes are very prone to Raynaud's but at that moment, an attack of Raynaud's or heartburn from the meds would have been the least of my worries, but I was still careful not to put the ice directly on my toes.


    If I had a badly broken a toe, I probably still would have rather reluctantly applied ice in an effort to contain the swelling -- just long enough to get to the hospital -- but not if I had any active ulcers there at the moment (since it would be a worse reaction and perhaps precipitate gangrene; thus swelling would be less of a problem than complications of the ulcer.)


    It's always a bit of a trade-off. So try doing what you usually do if its a minor injury, using your common sense about it, and don't hesitate to consult a doctor for advice.

  10. I'd like to mention one thing, which is that a lot of people quite understandably think Watermelon Stomach refers to a really large stomach, a stomach shaped like a watermelon, or a stomach with stretch marks (like stripes of a watermelon).


    However, Watermelon Stomach doesn't refer to any of that. You can have a perfectly small or flat or unblemished stomach on the outside. It refers to only bleeding on the INSIDE lining of the stomach. It can't be detected through any outward symptom. It is usually discovered through blood tests, since it eventually causes anemia, and sometimes the blood tests are run since people are feeling more rundown than usual.


    Watermelon stomach is a very rare complication of systemic scleroderma. It is treatable. But it is not something most of us would ever develop, and it is my understanding (although I'm not a doctor and have no medical training at all, so please correct me if I'm wrong) that the anemia it produces would be detected in a normal blood panel.

  11. Thank you, Margaret. Our main website is over 1200 pages (in 22 languages, no less). So we have accumulated scads of information and we are still building it every day. All of the news items you see posted in this forum also end up somewhere in our main site.


    Just click on any of the blue buttons, in the far left hand column of each Sclero Forums page, to go to our main site. Click on the main MEDICAL button to see hundreds of pages of listings -- such as the main SYMPTOMS page, which is a bit daunting, in itself.


    You can also use the internal site search to cull some goodies. There is a search function both for Sclero Forums and for the main Sclero.org, which also helps.


    This is all operated by the nonprofit International Scleroderma Network through dozens of worldwide virtual volunteers. We have to be very careful about posting links in the forum, to avoid malicious codes which are so rife on the internet these days, so nearly all the links we post are directly to our main site. We are very fortunate to have it all -- the stellar medical information, hundreds of fascinating patient stories intertwined with the medical content, and this terrific support forum.


    Anyway, that's part of why and how our team is able to be so johnny-on-the-spot with answers to many of the questions posted here. But nothing beats a good old fashioned discussion of things, on top of it all!

  12. Hi Margaret,


    This would be something to report to your son's doctor. There are different causes of voice loss. Since it is intermittent, it might be related to heartburn. But it could be due to an infection or something else.


    Scleroderma can affect the voice, called dysphonia, but it is my impression that relates more to a consistent diminishment of vocal ability (like chronic hoarseness) than an intermittent one like you describe. See Dysphonia (Loss of Voice) on our Esophageal Involvement page.

  13. Hi Dee,


    As it happens, systemic scleroderma is the most fatal of all the rheumatic illnesses. However, the prognosis isn't as thoroughly grim as it used to be, and you are right in that it is not always a death sentence or an immediate threat to longevity. Plus we have more treatments for symptoms now, and more awareness of the importance of consulting scleroderma experts, too.


    But the statistics on it are rather complicated. Here's the section from our website that you want: Systemic Sclerosis: Prognosis and Mortality.


    It is the localized forms of scleroderma (morphea and linear) that are not fatal.


    Diffuse scleroderma more often has a rapidly progressive course (but not always), whereas limited systemic scleroderma (the type most people with scleroderma have) is more likely to have a lingering course, or perhaps even "burn out" along the way.


    However, there are certain pitfalls to limited scleroderma (aka CREST) as well, such as the possible development of pulmonary hypertension. So regardless what form of systemic sclerosis a person has, they should always have regular (at least annual) monitoring and seek the best possible medical advice for their particular circumstances. For more information, see Types of Scleroderma.

  14. Hi Sarah,


    For an SSDIB review, you can expect for them to request the records from all of the doctors that you have seen recently. They will also want to know if you've been working and if so, how many hours per week and how much you are earning. You can still work up to 20 hours per week and earn up to a certain amount (usually about $800 a month) while keeping your benefits, provided you are still sick/disabled.


    You can also earn an unlimited amount of money for 9 months or so (the 9 months all need to be within a 5-year span) and still keep your monthly benefits, in their trial work program.


    Basically they want to know if you are still sick, or if you have happened to have enjoyed a complete cure and returned to a good paying job full time, without letting them know. You might need to see a doctor of their choice to review your case, or they might be able to handle all of it by mail.


    Provided you're not healthy as a horse and working full-time, you probably don't have a thing in the world to worry about. So just relax, fill out the paperwork with the doctors names and addresses right away, and kiss your worries goodbye when you put it in the mail. Stress over disability is just not worth it, as it can worsen all sorts of symptoms; and they are hopeful that you will improve by not working, and not worsen over worries about the benefits.


    As many people here have discovered, its quite a hurdle to get benefits in the first place. Once people have overcome that, they quite rightfully figure you really and truly are very sick, either chronically or terminally, and thus they tend to act more like your advocate to maintain benefits (provided you are still qualified, of course!) than an evil overseer that is trying to swipe them away.

  15. Hi Kamlesh,


    You may want to consider having a sleep study done. There are many types of sleep disorders and if you have sleep apnea, treatment for insomnia will only make it worse.


    I have severe insomnia with alpha-wave intrusions; my husband has sleep apnea. We have entirely different treatments. It has helped me a lot to use full spectrum light therapy, which I started for psoriasis but found it was helpful for my sleep as well. Used properly and diligently, it can regulate the circadian rhythms and the whole sleep/wake cycle. I simply use full spectrum (therapy level) lamps (not the light boxes that you stare at, I could never do that) for my work and hobby areas, which are dimmable and like an ordinary desk lamp.


    My husband simply enjoys having the true light around (it is better to read by and easier on the eyes) -- but it would do absolutely nothing for his sort of sleep disorder; he has to use a CPAP machine. So the real key to treating a sleep disorder is to be sure of exactly what is causing it before launching a treatment program.


    Sometimes depression can cause sleep disorders -- but sometimes sleep disorders can cause depression, too. See our page, Sleep and Autoimmunity.


    Ask your pharmacist when you should take the med -- many of them are to be taken a few hours before bedtime, and then you can sleep through most of the hangover effect. Also ask if you can reduce the dose for a few weeks while your body learns how to adapt to the medication. And do look into sleep disorders testing, especially if you have any other symptoms like snoring or significant pauses in your breathing at night (which are possibly indicative of sleep apnea, which will not respond well to sleeping medications.)

  16. Hi Sheryl,


    As I understand it, there are only a very few children who have the systemic form of scleroderma. The vast majority of them have localized scleroderma (morphea and linear), which is very different in many ways from systemic. It primarily affects the skin, and for the large part lacks internal organ involvement.


    Oddly, scleroderma affects children equally until about 8 years of age, whereupon it predominantly affects females. That is mentioned in our most recent book, Voices of Scleroderma, Vol. 3.


    There has been a lot of research done into causes of scleroderma, and as I mentioned a lot earlier in this thread, we have dozens of pages on it, beginning at Causes of Scleroderma.


    A few of the causes are definitive. I think part of the difficulty is that many of us have been exposed to many things which could adversely affect our immune system, which makes things even more difficult to pin down. And there may be many different causes, too.

  17. Hi Michael,


    That's an interesting question. We have a very large section of our site devoted to Causes of Scleroderma. Mostly, the cause is still unknown. However there are dozens of possible causes. Some of them are proven, such as genetics in a few cases and environmental toxins in a few others.


    See Causes of Scleroderma. Here are some page topics from that page:


    What Causes Scleroderma?

    Advanced Glycation Endproducts (AGES)


    —B Cells and T Cells

    Cluster Studies (Main Page)

    —Cluster in South Boston


    Dendritic Cells

    Environmental (Main Page)

    —Artificial Joints & Breast Implants

    —Drugs and Medications


    —Mercury (Dental Amalgam)


    —Silica Exposure


    —Vinyl Chloride

    Fetal Cells


    Homocysteine, MTHFR C677T Gene

    Hormones and Chromosomes


    Molecular Defect-TGF Dysregulation

    Natural Killer Cells

    Neuropeptides and Substance P

    NF-kB Protein

    Oxidative Stress, Lipid Peroxidation

    Serum TIMP-2

    Sleep Disorders


    Tissue Kallikrein



    Vitamin D Deficiency


    Those topics are all available at Causes of Scleroderma.

  18. Hi Jennifer,

    Dr. Philip Clements is a very prominent world expert in scleroderma.

    The SCTC is a worldwide organization of the top scleroderma centers conducting peer-reviewed international research for scleroderma. By the same token, the UCLA center is a stellar scleroderma center.

    I don't know what the "two week treatment" is all about. But regardless, if you are nearby, it would probably be a good idea to have a consult at a scleroderma expert center. That's the best way to be alerted for any clinical trials or research registries that you might be eligible to participate in, and to hopefully get the very latest treatment advice.

  19. Steve, when I was still searching for life insurance coverage, several agents had gently suggested that I may want to avoid a formal application with them, because it would very likely go on file as a denial by the MIB. In other instances, they flat out told me that they would not even consider coverage for (systemic) scleroderma. And the insurance clearinghouse that had provided coverage for me for years came up with only a few carriers, at truly exhorbitant rates.


    But you were able to find coverage for me at very reasonable rates, without jeopardizing my MIB file in the process. So is there a difference in how the applicaton process works, between various companies, clearinghouses, or agents?