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Shelley Ensz

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  1. Shelley Ensz

    What’s up with this pain in my chest?!

    Hi Cathy, First of all, we should be celebrating the good news, which is that it sounds like your doctors have already ruled out the very worst causes of chest pain, such as heart or lung troubles. So let's take a deep breath while we all rejoice over that! So now it's down to troubleshooting the lesser causes. See 19 Important Causes of Chest Pain by doctor's Opinion. Given scleroderma, some of the more likely culprits would be costochondritis, heartburn or esophageal spasms, muscle tension, or anxiety. I've had random chest pains for over 20 years. Once I had the baseline testing done that ruled out the severe and acute causes, my doctor just explained it could be this, that, or the other thing, and simply not to worry about it unless it goes on for over 5 minutes, is significantly different, or is accompanied by other symptoms. Variously, my chest pains have been due to esophageal spasms, heartburn, pneumonia, pleurisy, influenza, bronchitis, pericarditis, a mammary gland infection, Raynaud's of the nipples, muscle strain (from pushing a car), palpitations, referred pain from gallbladder, mitral valve prolapse, and costochondritis. Plus, then there are just random ones that appear out of nowhere and resolve themselves without any further ado -- and a fair number that I've personally chalked up to fibromyalgia, when they occur along with other roving aches and pains. So, one thing to keep in mind is that you might be having more than one source at the same time, which can really confuse things. Overall, I like to take comfort in whatever they've proven likely won't kill me today, which helps reduce anxiety, which can also cause or worsen chest pain. Plus, one source of chest pain does NOT mean that all chest pain is due to that particular source. There's such a fine line between reacting and over-reacting, and never is the line quite as difficult to find, as when dealing with chest pain -- it is the most common cause of all for emergency room visits. So, my thoughts are with you as you get this sorted out.
  2. Okay Cde311, we expect you to get such a handle on this that down the road, you'll be able to pitch in and help us all talk other newbies off the cliff! We all know the feeling, and we all need things explained from a variety of sources to start getting the hang of this whole scleroderma misadventure.
  3. Shelley Ensz

    Autoimmune protocol diet/ CBD oils/ GERD

    Hi Cde311, As it happens, we always recommend that people consult their scleroderma expert regarding diet and lifestyle changes. It's not as straightforward as the internet might suggest and scleroderma can pose complications to standard health advice in many ways. The autoimmune protocol can be difficult or nigh impossible for many people to follow, even for a short time (but I've followed it briefly, here and there). It also might not be necessary or necessarily helpful; so discuss the pros and cons and any concerns with your expert. The thing is, we often try to tweak our diet, unaware that leaky gut can also be worsened by poor sleep, stress, gut bacteria, too much OR too little exercise, alcohol, drugs and even toxic relationships. Looking beyond only food to balance our entire life can also be very helpful with autoimmunity. And there's the perennial pitfall with scleroderma, in that, our immune systems are already in overdrive, and not under-drive (like AIDS). Sometimes an ill-advised health kick -- which might be very good for any healthy person -- can lead to strengthening our body's ability to attack itself. Going on a high protein diet, for example, may stress scleroderma kidneys which are already vulnerable to sudden failure. Many diet changes can worsen pre-existing problems with esophageal and bowel problems. Such as, increasing fiber can lead to potentially fatal bowel complications in someone who's g.i. motility is weakened from scleroderma. That's why knowledge is power with scleroderma and it's so great you even asked about this! Now that we have it understood that this is not a do-it-yourself job, but rather one that we research ourselves and then work with our listed scleroderma expert on, here are some additional resources for you to consider: Food Guide for Autoimmune Disease, Diet and Scleroderma, Endocannibinoid System (for CBD), and Heartburn/GERD. Cannabidiol (CBD) derivatives are emerging as a potential treatment for scleroderma (and other illnesses), with several clinical trials in progress. CBD is the part of marijuana that doesn't get you high, so "pure" CBD is legal everywhere, but there are FDA warnings about improper labeling, etc. So in areas that have legal marijuana, it's best to get medical grade CBD from a dispensary. See: CBD for Scleroderma and Warnings for CBD. The GERD link above also has ideas for naturally managing symptoms, such as how to elevate the head of the bed, which side to sleep on, etc.
  4. Hi Cde311, Welcome to Sclero Forums. Under the circumstances, it might be pretty good to talk to your doctor. It'd be reasonable to set an appointment to discuss these results and to begin rounding up a scleroderma expert. I know the first impulse most of us have is to be scared out of our wits and want to make it all go away (like with a stem cell transplant). But, trust me, very shortly you'll have a more balanced view, and realize this is far more often a chronic illness that is manageable. Joint pain and GERD are usually especially manageable and perhaps that's all you'll ever experience from illness, because there is no predictable progression for scleroderma (it can wax and wane all on it's own, even without any treatment of the underlying condition.) Also you'll find reassurance from many of us who were given a brutal and hopeless prognosis decades ago, yet we are still alive and kicking! Treatments and clinical trials are continually improving quality of life and outcomes for people with scleroderma and related illnesses. Generally speaking, stem cell transplants are reserved for those of us with very rapid onset and severe diffuse scleroderma; it's not the common or usual treatment of choice, given that it can sometimes have drastic or fatal complications with scleroderma. Fortunately, joint pain and GERD are not life-threatening and are easily managed with ordinary symptom treatment. Not having skin involvement or Raynaud's at this point is excellent and is likely a harbinger of a slow disease course or good long term outcomes. In fact, you may not even reach the clinical criteria for diagnosis yet, which often relies on the presence of symptoms such as Raynaud's, pulmonary fibrosis, or tight skin, for example. But there is an effort afoot to try to identify "early stage" scleroderma. You may fit that category but be aware that 50% of people with some symptoms of connective tissue disease and some positive blood work never go on to develop a full-blown specific disease such as scleroderma. Thus, the odds are excellent that you might be put in a "watch and wait" category for regular follow-ups. Now, that's a good thing, not being so sick as to ever acquire a diagnosis, but it's a bad thing because of the psychological limbo it can leave people in, wanting a diagnosis to verify it's real or that we're not faking it, for example. As it happens, I know people with a few symptoms and some antibody or another who've been followed for ten years before they were declared to be free of connective tissue diseases, such as lupus or scleroderma; and some who were diagnosed and then later on the diagnosis was overturned. Imagine, all that time spent convinced they might maybe were going to die soon, and then disappointing everyone by keeping on ticking and then, being healthy in the end, after all that physical and emotional ruckus! For the time being, you are alive, you are basically okay without life-threatening complications (that we know of.) But you are most understandably feeling threatened by the scleroderma monster (we all were, all of us who researched anything, at least.) That should fade within the next few weeks, as you gain insight and knowledge about the disease and the people who have it. So, enough of this. Your first obligation is to seek expert care and evaluation. Quite likely, you'll end up in the watch and wait category (merely because the vast majority of us do, often for many years before we know what end is up). It's an average of six years from onset to diagnosis for women, which is adverse by any measure, but it's also a reality that means we need to find ways of coping in the meantime. In particular, you might want to study our information on Diagnosis of Scleroderma, Endocannabinoid System and Scleroderma, also Skeletal Involvement, GERD, and, most importantly of all, listed scleroderma experts. I'm glad you found us. Things are the scariest they'll ever be right now; you should feel a lot better, or at least more comforted, soon, now that you're around people who "get it."
  5. Shelley Ensz

    My mom's overlap worsened.

    Hi Anda, Welcome to Sclero Forums. I'm sorry that your mom has Overlap and that she has new symptoms. Please keep in mind that I'm not a doctor and verify everything I say with a reliable medical source. As you may know, scleroderma can affect any part of the body, including the intestines, and slow motility is a very common result of that. She'd be wise to consult a listed scleroderma expert, if possible. Also, motility issues are sometimes caused by medication side effects (pain killers being a very common culprit). See Bowel Dysfunction in Systemic Sclerosis. Some of us have been able to switch to medical-source CBD for pain relief, thus avoiding side effects like low motility. CBD is the non-psychoactive part of marijuana (meaning, it doesn't get you high). See Endocannibinoid System and Scleroderma. Also note the FDA warning, which is why a legitimate medical source for CBD is crucial. Due to special circumstances, I have to have a colonoscopy every year. So I'm well aware that they are unpleasant and even risky. If by any chance your mother is over age 70, it's likely that the risks may outweigh any potential benefits. See Do You Really Need That Colonoscopy? by AARP. Be sure that she doesn't make any major diet (or other) changes without sound medical advice from a scleroderma expert. With scleroderma, for example, it can be dangerous (as in deadly) to add a lot of fiber, and some people find it necessary to go on a low fiber diet, or what is called a Low Motility Diet, which should be designed by a nutritionist. It isn't a do-it-yourself job to undertake such a diet, so don't try to force any diet changes on her but rather encourage and enable the consultations it may require. Her necrosis might be a complication of steroid treatment. Steroids can pose special problems for scleroderma patients, but sometimes there's not many viable treatment options. However, it's always good to be aware of the issue and to see if alternatives are available. See Steroid Warnings for Scleroderma. Overall, your mother may be encountering a common complication of scleroderma, or side effect of medication which is just less tolerable along with scleroderma, and it may be beneficial to weigh risk and benefits of the procedure with her scleroderma expert, in case a more conservative approach can be tried first (which will depend on many factors.)
  6. Shelley Ensz

    Newly diagnosed with systemic sclerosis (SSc)

    Hi Tamster, Welcome to Sclero Forums. It sounds like you have a pretty good handle on things already. My tip would be to try to learn how to enjoy and not stress over the medical tests, because they will become your new normal. The vast majority of tests you have taken will turn out with normal results, or they will pick up stray things that eventually turn out to be nothing. The wait between having the tests and getting the results can be excessive and thus nerve-wracking. Your first round of tests is likely to turn out basically fine. At this very early stage, they just need to establish your baseline, of how your hearts, lungs, kidneys and g.i. tract are functioning right now so that any changes can be detected early. They are not expecting to find any major problems for years down the road (even if that). Most of us waste too much emotional energy on the initial doctor appointments, perhaps from trying to prepare ourselves emotionally in case anything bad does turn up. Eventually I got the hang of not troubling trouble until trouble troubles me -- but I didn't learn that as quickly or easily as I would've wished, and if I had it to do over again, I'd have focused more on finding ways to relax and add joy to my life during that stage. Attempt to learn about the issues, stay organized, try to stay chill, try not to get too worked up about things because like as not, this is a very long term condition to deal with, and stress only makes everything worse. And, stay plugged in to Sclero Forums, as we are all here for you!
  7. Shelley Ensz

    What does lung involvement feel like?

    Hi Cmfc, Welcome to Sclero Forums. Please keep in mind that I'm not a doctor and have no medical training at all, and that I'm also going into detail for others who may stumble upon this thread with similar issues. Perhaps I should explain that, to the best of my understanding, the shortness of breath that goes along with things like pulmonary fibrosis and pulmonary hypertension typically onset very slowly and so gradually that it is sometimes even hard to recognize. With both, the most common exacerbation would be with exertion; and usually it's just the usual/normal/expected onset of the typical shortness of breath that any healthy person would get with too much exertion -- but it onsets earlier than before, without de-conditioning being the root cause. Whereas, shortness of breath occurring at rest, but not with exertion, would likely have a different cause. You may have residual congestion from your cold, the onset of flu or pneumonia, or good ol' fashioned anxiety over the very stressful worry about illness and diagnosis. It's entirely normal to be hyper-vigilant, upset and depressed for a few weeks following any major life change (such as this). Seeking information and support, like you are doing, typically gets us back to our usual level of sanity within a few weeks. But probably the majority of us (even me) sought out private counseling and/or medication to learn how to best cope with such drastic changes, and get our equilibrium back. Whenever something drastic happens, it's good to set an internal timer if we feel our reaction is going downhill. Usual symptoms would be not sleeping well, feeling exhausted, emotional quivering, feeling cranky or irritable, being tearful, turning to alcohol or drugs for comfort, feeling sorry for ourselves, and eating too little or too much. Or, just having one dominating thought that is difficult or nigh impossible to turn off. It's okay to allow ourselves some space to adjust on our own, let's say, up to two weeks. If we're not seeing significant improvement by then, it's wise to seek extra help and support to avoid developing a chronic mental health condition (such as major depression or chronic anxiety.) Since you're at the two week mark, and you're noticing something (either physical or mental or even both together), then it may be a good idea to see your primary care doctor. It's almost weird to *not* have an emotional reaction to such sudden and scary prospects as a potential chronic illness, so don't waste a minute feeling bad about it. I view times of big change, like this, as prime opportunities to improve my ability to cope with stress, since the usual happy daily life doesn't require much effort from us to maintain our stability. Plus, who knows -- you might have an additional reason (cold, flu, pneumonia) for your shortness of breath, and it could even be several items together (congestion from the cold, stress of the diagnosis stuff, and very early stages of fibrosis). But any way you mark it, this would not at all be *only* the onset of, say, pulmonary fibrosis, and in that regard, you would be in no immediate danger at all. I've had some lung fibrosis for over 20 years now; it was beyond the inflammation stage when it was caught, so I didn't even need treatment for it. And I had chronic shortness of breath on pretty minimal exertion since then, which could have been even just simple de-conditioning, but it turned out to be due to dermatomyositis (a very rare autoimmune disease that weakens muscles) -- and it suddenly resolved upon successful treatment for the myositis. Scleroderma is a chronic illness, sometimes with acute exacerbations, and the reason it's chronic is because it typically simply fails to kill us right away. It's more normal to live with the illness for years and decades -- rather than days or weeks, which is how many of us imagine our prognosis to be, in the beginning.
  8. Hi Garc, Welcome to Sclero Forums. I may be wrong, I often am, but it sounds like you may be experiencing some bloating. A place to start might be with your primary care doctor, who could assess for the most common causes and perhaps refer you to a gastroenterologist, if necessary.
  9. Shelley Ensz

    Scl-75 positive and lungs

    Hi Helen, Welcome to Sclero Forums. The SCL-75 usually occurs in people who have scleroderma in overlap with polymyositis. Polymyositis is an autoimmune disease that affects the muscles. It's possible that your shortness of breath might be from muscle weakness, rather than fibrosis, etc. Also see: Polymyositis and Dermatomyositis. I think it'd be worthwhile for you to consult a scleroderma expert. They are few and far between but worth tracking down. The great news is that the myositis is more treatable than the scleroderma, and treatments for it may well improve some scleroderma symptoms, too.
  10. Shelley Ensz

    Morphea -localised scleroderma part 2

    Hi Julie, Welcome to Sclero Forums. Even with morphea, it can be beneficial to see a listed scleroderma expert, to make sure you are on the best possible treatment plan. Lately, the first-line treatment for morphea is UVA1 phototherapy. See that and other options at: Morphea Treatments on our main website. If side effects of plaquenil are not life-threatening, many times they can be overcome by taking the daily dose at bedtime, which is what enabled me to stay on it for years. But, you may want to see a scleroderma expert, and inquire about additional treatment options.
  11. Shelley Ensz

    Morphea Community from India..

    Hello Deepak, Welcome to Sclero Forums! Please click on the link for Dr. Patel that you find on this page: https://www.sclero.org/scleroderma/experts/worldwide/a-to-z.html#india We've been trying to find experts and resources for India for years. So please let us know whatever you can find. We have some patient stories from India, which I'm sure you'd like to read. They are listed at: India Patient Stories on Main Site My tip would be to stay actively involved in the forums, saying hello and responding to other people here (even if they have a different type of scleroderma), because it will help keep your question at the forefront, and will also help you to network and build more patient resources for India.
  12. Shelley Ensz

    Burning face.

    Hi Pamilla, Burning sensations can occur with the development and progression of scleroderma skin involvement (and of course with other far more common conditions.) So, the sooner you get checked and begin quelling the inflammation, the better!
  13. Shelley Ensz

    Morphea and Scl 70

    Hi Doe, I spent a few decades misdiagnosed with fibromyalgia, which turned out to be dermatomyositis (in overlap with scleroderma and many other friends). It's actually called the PM/SCL-70 antibody. I have the PM/SCL-100 antibody. The PM stands for polymyositis -- which is an autoimmune disease that attacks the muscles. It hangs around with dermatomyositis, which attacks both the muscles and the skin. And they all hang with scleroderma on occasion, especially in those with the PM/Scl antibody. Unfortunately, when I first was bedridden and in a wheelchair, a few decades ago, it was missed due to the rashes being misdiagnosed as psoriasis and the muscle weakness and pain put off on fibromyalgia, largely because this blood test hadn't yet been invented, and also because I came down with way too many things all at once, so it took decades to sort them all out. So, perhaps this is related to some plaque morphea for you. But perhaps it indicates something else. Unfortunately these are all very rare conditions and finding a doctor to properly diagnose can be an enormous challenge. Sometimes it entails doing enough research on your own to eliminate all sorts of things, in order to find out what expert to consider.
  14. Shelley Ensz

    Morphea linear scleroderma

    Diane, welcome to Sclero Forums! I'm glad you have a UVA1 light box. Please don't use it until you have specific instructions from a board certified dermatologist who specializes in skin diseases. To locate such a doctor, start researching dermatology clinics in your city. You'll notice some focus more on cosmetics, some on cancer, and other doctors (sometimes the whole clinic) focuses more on skin diseases. See if their site lists UVA or UVB therapy; that is a strong clue that you may have the right office. If you do the online legwork of researching for the best doctor, it will save you lots of grief down the road. They will prescribe whether or not you need to use a cream/lotion, instruct you on using goggles, and precisely prescribe a regimen for you, such as how many inches to be away from the light source, how many seconds each treatment should be, and how to gradually increase the sessions. Then they will monitor you frequently for progress and possible complications such as skin cancer. Please let us know when you get an appointment and how it goes, etc. It's great to get on a healing path as soon as possible!
  15. Shelley Ensz

    Burning face.

    Hi Pamilla, Welcome to Sclero Forums. As it happens, it'd be a great idea for you to see the doctor about this. It could be a run-of-the-mill skin disorder, such as eczema or rosacia, or even skin involvement of scleroderma, or any combination or other ailment or allergic reaction. In the skin tightening phase, I've experienced various degrees of swelling, burning, itching, tightness, tethering, and paresthesia. Once the tightening episode settles down, then the pain and discomfort largely goes away (at least, the burning, itching which was the part that initially nearly drove me crazy for a bit, trying to figure out what it was and how to cope with it.) Some skin conditions occur in plaques on just one side of the body, others occur pretty much in tandem on both sides of the body. So one thing they look at is, is it just a patch, is it all over; is there a color change to it or not; is it scaling or blistering; is it growing or stable; does it peel or shed; is it red or hot; does it hurt or not, and what part of the face is it affecting? Get seen right away because this may be a treatable phase of inflammation, for whatever is causing it. Please call the office of your listed scleroderma expert and ask them what your next step should be. It's easier to quell scleroderma (and many other ailments) in initial stages, than to reverse any damage that has already accrued. And, please let us know what you find out. My face alone has encountered scleroderma, microstomia (mouth becoming smaller due to scleroderma), dermatomyositis rashes around my eyes and scalp (misdiagnosed as psoriasis), acne, rosacea, eczema, actinic keratosis, age spots, and squamous cell -- often overlapping with each other. It can help enormously to have a board certified dermatologist who has a strong interest in skin diseases -- many of them specialize in cosmetic procedures or skin cancers, so it can take some digging to find them but a good resource can also be a referral from your scleroderma expert. Always remember that just because you have scleroderma, it doesn't preclude anything else from happening. In fact, in my case, I'd say it opened the immune system wide for nearly anything to waltz in and raise havoc, although things have settled down dramatically over the past few years, and I'm much better right now. I'm not saying you'll encounter all of this, I have a very rare case of overlap. But what I am trying to point out is that we should never assume that any new symptom is from an already-diagnosed condition. If any symptoms is new or different or worse, please get it checked out promptly!
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