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Shelley Ensz

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Posts posted by Shelley Ensz


  1. Hi Alone,

     

    Welcome to Sclero Forums.  I'm sorry you have confusing symptoms and diagnoses.  It's actually fairly common for lupus and scleroderma to occur in overlap, or for either disease to occur in overlap with other diseases.  It's common for both diseases to take many years to be diagnosed, and for them to also be mistaken for each other, too.

     

    I have multiple autoimmune syndrome (MAS) so I know how confusion can reign supreme as symptoms and bloodwork change. It's also common for relatives of people with autoimmune disease to exhibit antibodies and symptoms of any autoimmune disease, without necessarily ever getting a full-blown version of it.

     

    You're not exactly alone in the universe anymore, since millions of people worldwide have autoimmune and connective tissue diseases, and millions are also in a quandary as to their diagnosis -- typically, for many years, as the ailments are so difficult to sort out and diagnose. Plus, even years later, the diagnosis can still be subject to change, or even for the illness to go into remission.

     

    Anyway, welcome to the forums. You can relax now, not feel so alone, and let go of the confusion. It's normal for this to be confusing and neither you nor your doctor are doing anything wrong.

     

    :hug-group:


  2. Hi Wilson,

     

    I'm sorry you also have diastolic dysfunction. It's one of those things that is quite common, in that a Mayo Clinic study showed that 21% of people over age 45 have it; and, it can also occur in scleroderma (which is a more rare cause of it, because scleroderma is much more rare, of course.)

     

    It's a good thing to get diagnosed, and to take proper care of. It can be caused by coronary artery disease or by hypertension so those factors are often treated with blood pressure medications, diuretics, and sometimes even aerobic exercise to improve heart function. Keep on working with your cardiologist, of course.

     

    As I understand it (and I am not a doctor; I have no medical training at all), there is no different treatment for it, even if scleroderma is an underlying cause.

     

    I know how you feel about not wanting to have any particular diagnosis, but being glad to have any accurate diagnosis. Simply because, it's accurate and true!  And who knows, maybe someday various things may help solidify an umbrella diagnosis.

     

    :hug-group:


  3. Hi Kathy,

     

    I've never heard of a caregiver pact, so I don't know what you mean, exactly.  Do you mean like for the care of children?  Most issues surrounding death could be handled in a will or a Living Trust, including arrangements for children or pets (if necessary).

     

    I agree with Amanda. It it's possible, you may want to consider the idea of not trusting this situation to antidepressants alone. If it's possible to include individual and joint counseling, that might maximize the growth and happiness out of any disruption. It's nice for things to be a bit better now, but it'd be fabulous for things to still be going strong ten years from now, as an outgrowth of this period of reflection and change.

     

    Oh, and there is one thing I'd like to add, if you don't mind. The usual marital pledge is "for better or worse, in sickness and in health, til death do us part", because nearly all of us get sick, and none of us get out alive.

     

    All of us are going to get sick or die someday. Your husband could be run over by a truck tomorrow, for all we know -- and you hardly deserve that, do you?

     

    It's for that reasoning that I personally would prefer not to ever give nor accept blame for being sick. I like to turn to good counselors when I can use gentle guidance to resolve issues like that. Sometimes a fresh perspective can assist with introducing more acceptance, peace, love, joy and happiness, at least, in my experience. And you certainly and richly deserve that, after all you've been through!

     

    :hug-group:


  4. Hi Wilson,

     

    I do know, in many ways, what you are feeling, as I've suffered extremely delayed diagnoses over the years. Several times, I've felt completely exasperated by it.

     

    At one point, I read that about 40% of lupus cases were diagnosed by autopsy. I really don't know if that is true or not, as I haven't found that reference since.  What I do remember though is that I adopted as my slogan, "I refuse to be diagnosed by autopsy!"  Sometimes that rallying cry was the only thing that got me out of bed or gave me the courage to face yet another test.

     

    It's taken literally a lifetime for me to be mostly diagnosed, as I have multiple autoimmune syndrome (MAS) with all sorts of overlaps, which has been endlessly confusing both for me and my doctors.  So, on that hand, I know how extremely difficult some autoimmune diseases can be to get properly diagnosed.

     

    On the other hand, my late husband had a variety of things that emulated scleroderma, yet beyond the shadow of a doubt he did not have scleroderma or any autoimmune disease. He had alpha-1-antitrypsin deficiency (A1A) which caused him to have severe lung problems at a young age. Eventually he had a lung transplant. 

     

    So he was on oxygen for many years. But other than that, he also had severe esophageal ulcers and strictures, and had to have his throat stretched regularly. His heartburn was so severe that he had to have Nissen Fundoplication surgery. He had severe sleep apnea; costochondritis; atrial fibrillation; short-term insulin dependent diabetes from prednisone; osteoporosis; recurrent cellulitis; collapsed lung; ruptured Achilles tendon; and even Dupuytren's contractures in both hands.

     

    Everything other than the lung involvement was due to either the usual effects of aging or the side effects of medications. There was absolutely nothing (other than A1A) systemically wrong with him, and I can assure you that every test known to man was run prior to his transplant.

     

    So it's kind of funny. People can have only a few little things wrong with them but clearly have an autoimmune disease but a rosy prognosis, yet others can have dozens, of things wrong with them at once and not have any underlying disease process that is driving it -- other than aging, which is a mighty adversary all by itself, never to be underestimated.

     

    Please keep in mind that it is NO LESS SICK (and certainly, no less important) to have symptoms without a cohesive underlying illness, than it is to have the same symptoms without such an illness. Maybe the prognosis is sometimes better for people without an underlying illness. But all of us, healthy or not, have one thing in common which is that we suffer from a condition called Life, which is always, and inevitably, and unpredictably, fatal, whether by disease or accident or foul play.

     

    I suppose in the end, all of us actually get our final diagnosis by autopsy. But oh, so little, and so absurdly late!  It is today that we wish to know exactly what ails us, so that we can thus try to thwart our final diagnosis by a few days or weeks or months or years with proper care.

     

    Hopefully through our Sclero Forums, we will all find the strength to face another day with courage, with grace, with laughter...whether with or without any particular diagnosis at the moment, knowing that we all share the prognosis of Life together, along with all of its joys and blessings, and uncertainties.

     

    :hug-group:

     

     

     


  5. Hi Wilson,

     

    Welcome to Sclero Forums!  I'm glad you found us for support as you continue to deal with the question of whether or not you have an underlying disease that is causing your symptoms.

     

    Please keep in mind that I'm not a doctor, in fact I have no medical training at all, and verify everything I say with a reliable medical source.

     

    As it happens, about 50% of people who have a symptom or two of connective tissue disease (CTD), or even some antibodies too, never go on to develop a full-blown diagnosable CTD.  Also, with age, we can all acquire a variety of symptoms as our bodies inevitably display the effects of wear and tear (whether or not we have an underlying illness.)

     

    It does sound like your doctor is taking your symptoms seriously, and running appropriate tests. Scleroderma would be only a rare cause of diastolic dysfunction. Dehydration can cause thirst as well as worsen kidney levels, so please make sure you stay well hydrated (but not over-hydrated, of course).  And be sure that you have regular screenings for diabetes, which can emulate scleroderma in many ways (including the face swelling and thirst.)

     

    A scleroderma expert might be able to help you sort things out, as in tell you whether you have scleroderma already or tell you what the odds are that you may ever develop it...or perhaps even see what else it may be, if it is anything beyond the scope of normal aging (which can raise all sorts of havoc, all by itself!)

     

    :hug-group:


  6. Amanda, you've totally cracked me up, yet again! :happy:

     

    Miocean, I hope you get to another waning then plateau stage again soon!

     

    I've experienced the waxing and waning myself, sometimes just through the natural course of the disease itself, and sometimes through various treatments. It's an emotional hurdle to leap across, each time we encounter the waxing bit again. It's such an uncertainty, knowing what it was like when it worsened before, wondering if this is going to be the final downturn, but also knowing that things -- a few symptoms, or all -- could improve at any moment. That's what makes scleroderma such a roller coaster ride, and while not exactly thrilling, it is certainly enough to make us want to scream at times, isn't it?

     

    I'm glad we have each other, for comfort when the going gets tough or tougher, and for rejoicing together when things get a bit mild or milder. Fasten your seatbelt, follow expert advice, enjoy life as much as possible plus a bit more than that -- and then hang on for dear life, for scleroderma may be an interesting ride, but very seldom is it a boring or easy one!

     

    :hug-group:


  7. Hi Judy,

     

    I'd recommend that you advise her to consult her scleroderma expert about this. In scleroderma, the immune system is in overdrive (as opposed to AIDS, in which it needs to be boosted.)  So the goal in scleroderma is typically to regulate the immune system, which often requires immune suppressants.

     

    Exercise has been shown to increase inflammation in systemic sclerosis, so a health kick that entails excessive exercise could provoke rather than ameliorate symptoms.  See Exercise in systemic sclerosis intensifies systemic inflammation and oxidative stress. PubMed, Scand J Rheumatol, 2010;39(1):63-70.

     

    However, some "health kicks" may be beneficial, such as adopting an anti-inflammatory diet. It's great that she wants to take responsibility for her health and is willing to exert effort on it!  However, hopefully some of that effort will also entail consulting and listening to her scleroderma expert, as well. See Diet and Systemic Scleroderma and Supplement Guide for Systemic Scleroderma on our main site.

     

    :hug-group:


  8. Hi Kathy,

     

    Yes, you may share the link to our Hope on the Horizon video or to any of our pages, anywhere. The trick is to just include the link and to attribute the link to sclero.org or the International Scleroderma Network (ISN).

     

    That video is very special to me.  The scenery I used is from our old family cabin on the lake. The poem is by Fran Waranius who felt inspired by the SD World website that Judy Tarro had created.  Fran and Jude have both passed away.  Jude was also a volunteer for the ISN, and a member of Sclero Forums as JudeTheGrouch, literally up until the day she passed away. She donated her lovely SD World website to the ISN when she passed away.

     

    This year, Jo Frowde has been updating and revamping the SD World website as part of her webmaster training program with us. Recently she redid all the pages for Don and Karol's cross country tripKarol was the original penguin mascot for our Scleroderma Webmaster's Association (SWA) and that link includes photos of Fran and Jude and Syl, even me.  Some people here may still remember my speech at the first SWA meeting. In the middle of my speech, Don's service dog, Brandy, was kidnapped by a penguin, and held for a ransom of chocolate for the whole audience!  

     

    Karol and Brandy have since passed away, as well, so Don's heart was warmed by the effort Jo undertook to revive the trip section of Jude's site.

     

    Syl would be delighted for you to use her poem for your Father's Day card. (Also see: Syl's Poetry on our main site.)

     

    :hug-group:


  9. Hi KTerrell,

     

    It would probably be a good idea for you to consult a board certified dermatologist to diagnose your skin lesions. They could possibly be telangiectasia.

     

    As it happens, scleroderma is only a very rare cause of telangiectasia, which can also be caused by things such as aging, alchoholism, pregnancy, rosacea, steroids, and other connective tissue diseases like dermatomyositis and lupus.

     

    So, for a scleroderma diagnosis, telangiectasia are only "counted" when they occur on the hands and face, and when they are combined with other significant and specific symptoms of scleroderma (such as tight skin, pulmonary fibrosis, Raynaud's, etc.).  See Telangiectasia, and Diagnosis of Scleroderma.

     

    The good news is that skin telangiectasia are harmless, and they can also be treated by dermatologists if they are bothersome or too noticeable. Since you report having recent adult onset of Raynaud's as well, it would be a good idea to be screened by a scleroderma expert to see if you have possible early scleroderma. 

     

    But I must warn you that it is still an average of six years for scleroderma to be diagnosed (from the onset of symptoms in women; three for men), and even though there is an effort afoot to diagnose scleroderma earlier, it is very far from pervasive and the majority of doctors are likely unaware of this effort.  The old school method was to postpone the diagnosis for as long as possible, and only treat the symptoms as they arise, because it was considered to be an "adverse diagnosis".  So, it is still the norm to just be monitored periodically, until or if other significant symptoms of connective tissue diseases develop.

     

    :hug-group:


  10. Hi Ivybennett,

     

    Welome to Sclero Forums. I'm sorry that you have multiple sclerosis, and onycholysis (the formal name for nails separating from the nail bed.)

     

    As it happens, it's very odd that your doctor would suspect scleroderma, based only on that. It would be far more commonly caused by trauma, tapping on keyboards, manicures, soaking hands in water too long, fungal infections, psoriasis, certain medications (especially some antibiotics), anemia, and hyperthyroidism.  And, as Jo pointed out, onycholysis is not part of the diagnostic criteria for any type of scleroderma (either localized or systemic). 

     

    Unless your doctor has additional reasons to suspect scleroderma (or lupus), I'm sorry they have put you through this worry, which is unnecessary in the absence of other specific symptoms such as Raynaud's, tight skin, and pulmonary fibrosis.  Of course, your doctor might be on guard because of your family history, and because very rarely, multiple sclerosis can occur in overlap. If this is just a single symptom, and otherwise you don't have things outside of MS, then I'd look in other directions for a cause of this.

     

    I have scleroderma in overlap, and I've had onycholysis, too (two fingers, one on each hand, at the same time) -- but it was chalked up to psoriasis (which I also have), and I seriously doubt that the thought of scleroderma as a differential was even briefly entertained. In fact, it never even crossed my mind, and it wouldn't have unless I was also having significant sclerodactyly and prominent Raynaud's attacks, etc. at the same time.

     

    Even in a person already diagnosed with scleroderma, it should still be the last culprit considered for any new symptom, because all the normal or more common causes need to be ruled out first. Often, more common causes are also more treatable.  Just think, this could also be a symptom of hyperthyroidism or anemia, both of which can also be associated with MS.

     

    If it's a one-time problem, I wouldn't worry about it, so much as if it recurs. But I'm not a doctor, I have no medical training at all, so you should absolutely bear in mind that your doctor is much better equipped to assess your health, and suspect and rule out various ailments, as we are here on the forums!

     

    I just want you to be assured that, if this is the only reason they suspect scleroderma (and I actually rather doubt it is in your case; I am aiming this at others who stumble upon this thread who only have onycholysis), it would be insufficient, by any standard that I'm aware of, which should hopefully set your mind at ease if or until any other symptoms outside of MS develop.

     

    :hug-group:


  11. Hi Miocean,

     

    I'm really happy for only one part of your situation, and that is, that you are posting here. We all really miss you when you are offline for any reason!  So come what may, good or bad or indifferent, please keep our connection as best you can. (And that goes for all our members.)  We aren't here only for the good times, we are here for it all, or what sort of support would we be?

     

    As you know, the natural course of scleroderma is to wax and wane. And wax and wane. And wax and wane. Like a roller coaster ride, with all the screams but none of the fun!

     

    Unfortunately, the waxing part brings with it all sorts of stresses, and stress exacerbates inflammation, and away we go again. I try to pick away at the stress, doing every tiny thing I can think of to reduce it, as I figure, even a 1% reduction will eventually hopefully add up to something. Capturing time for living, and enjoying, becomes increasingly difficult when we are sick, and that frustration adds to the burden of trying to deal with the never-ending rounds of hospitals and doctors and tests.

     

    You are doing absolutely marvelous to be hanging in there still, despite everything that you have gone through and are continuing to go through. Like you, I figure, the doctors and the treatments are just part of the equation for our well being. The other part is the tiny bits of goodness and little blips of joy and tiny dabs of happiness that we can work into our life, but we have to fight like crazy to find and get and cherish them, and they are so easily lost in the shuffle!

     

    I know you're doing all this list below, and lots more, but some of this could be fresh ideas to newbies who might begin experimenting with their own stress reduction techniques.

     

    This list is for anyone struggling with the waxing part of autoimmune disease, just notes from my own experiences of tiny things that have helped me, and I'm sure you, and others, will be able to add to it mightily!

     

    In keeping with our guideline to avoid religious connotations, here is my layman's version for ways that I try to reduce stress in order to reduce inflammation:

     

    1. Forgive everyone, for everything (but remember the lessons, and the people who are best to love only at a distance).  I pull up a thought of anyone or anything that hurt or angered me, face it squarely, offer the thought forgiveness, and watch it get tiny as dust and then blow away on the wind.  Some people or situations require multiple breezes, but that's just fine. It doesn't matter if it's from today or many decades ago. If it's there, if it's harboring resentment, it's impairing my stress level. That increases inflammation. So, away it goes! 

     

    2. Ask for my energy back. Okay, this one is weird. Sometimes the forgiveness thing doesn't work for me. Maybe I'm still too mad to really forgive, which is only human. Sometimes forgiveness is a process and requires time or counseling (even for me). So what I do then is, I picture the person or situation, and ask it to please "give me my energy back".  I don't care if the issue still exists or still needs resolution, I just need the energy back that it is absorbing.

     

    I imagine cutting the cord of energy between us that is draining me. I picture the energy being restored to me. It's amazing but then right away another person/issue will then pop into mind that is depleting my energy, so I will ask it for my energy back. I know it sounds beyond silly and not something to discuss at the dinner table lest people think you wear an aluminum hat, too. But you can quietly do it and nobody will know the difference.

     

    3. Find and do a one or a five-minute vacation, and take as many of them as you can cram into a day.

     

    For one minute, I do deep breathing or visualize my favorite relaxation picture. If you don't have one, you can borrow mine. I recall sitting under a birch tree, on a hill overlooking a lake.  I hear the waves lapping, and loons calling. I smell fresh wintergreen, moss, and pine. Each outgoing wave carries away one of my cares or fears or worries, and each incoming wave restores my hope, my peace, and my energy. Breathe in relaxation, breathe out stress. Breathe in fresh minty air, breathe out toxins. Breathe in calming waves, breathe out cares.

     

    I do small stretches when I'm waiting for things in the microwave. Neck stretches are the best for relaxation!

     

    Yesterday, I took off my shoes and walked barefoot in the grass for a few seconds and tried to crystallize the memory of it. Anything savored can be a mini-vacation -- even peeling a carrot or cutting an apple, if it is done slowly and attentively enough. So, I try to slow down and savor when I need to relieve stress.

     

    4. Make nice long lists of enjoyable things, or things I'm grateful for, to drum up more of a relaxation response. When I can't do anything at all, I can at least make a list or read the list of things that make me feel better. I find that if I put my mind to it, I can always do something on the list, even if it's just taking a nap, or having a cup of camomile tea.

     

    5. I find what makes me laugh the hardest, and seek it out in doses. I view laughter as a medical treatment and literally schedule it into my week (I prescribe a healthy dose, every other day, for myself), whether it's watching funny videos, reading a humorous book, hanging with a funny friend, or going to a stand up comedy show. Even forcing laughter, when there is nothing at all to laugh about, induces a relaxation response. I just try not to do that when other people are around. But laughter yoga is based on this premise, that it is not necessary to be inspired, in order to laugh and benefit from it.

     

    There now, I've exhausted my chipper little ideas for the day. It's okay to just laugh off this silly list.  I guess I just want to say, there are many times with illness when we can't do anything more medically at all, and neither can our doctors. But we can take many tiny steps to induce a relaxation response and that reduces inflammation, and also helps reduce attacks of Raynaud's.

     

    Plus, with illness, we need at least ten times more stress reduction than the average person, because there is no end to the stresses and some of them are on a massive scale, like you've continually encountered, Miocean. And you've set a fine example for all of us in overcoming one major hurdle after another. Even if it's just to explain your predicament on the forums, that's a great stress-buster, right there, and another wonderful method for letting go, too.

     

    None of win the mortal game of life, in the end, but many of us still manage to win it all along the way, like you, and the vast majority of our forum members, by basically letting ourselves feel defeated, from time to time, but not actually be defeated. Somehow we hoist ourselves up together and make it for another bit, as best we can. It's not over til its over, and we are entitled to all our feelings about all of it, along the way, and to share them here.

     

    Thank you for setting a good example for our other members, on the importance of sharing our journeys with each other, all along the way.

     

    :hug-group:


  12. Hi Peter,

     

    I missed your initial post, and just want to welcome you to Sclero Forums. It sounds like your appointment will be quite an adventure, so I hope it all goes smoothly!

     

    :hug-group:


  13. Hi Sierra,

     

    I thought you might be interested in this 2010 article posted in our forums, which is about tumeric (the Indian spice) delaying the progression of primary sclerosing cholangitis, in scleroderma patients.  See: Tumeric Delays Liver Disease Progression

     

    I thought it might help for me to point out that everyone in the UK can also post in our Main forum, unless you have a question specific to scleroderma resources/experts in the U.K.  And, everyone in the forums may also post in the UK forums, you do not have to be a UK resident to respond to messages here. Anyway, since this particular message could use larger exposure, to help discover other lSSc/PSC'ers, I'm going to move it into our Main forum.

     

    :hug-group:


  14. Hi Cathy,

     

    Welcome to Sclero Forums! 

     

    As it happens, we used to have a listing for South Africa, but apparently lost the listing somehow over the years. Yes, I found him. His name is Dr. David Gotlieb in Capetown, who is known online as "Drdoc".  If he's anywhere near you, that may be a resource to consider, as well as looking through our Scleroderma Expert World Listings.

     

    As you see, we have many discussions for skin care. My personal favorite is plain coconut oil, which I slather on before and after showers, and before bed. But any oil that you like and can afford is good. I just prefer to go straight to the "real" oil itself, without other added ingredients, and to shy away from hot water and most soaps, which can be very drying. I seldom even wash my hair, just skipping straight to the conditioner instead (this is gentler on the hair and the skin.)

     

    :hug-group:


  15. Hi KTerrell,

     

    Welcome to Sclero Forums. It's good that you are trying to get answers for your symptoms.

     

    Generally speaking, whenever Raynaud's onsets in adulthood, it's my understanding that it is a good idea to request a referral to a rheumatologist for evaluation, to monitor or check for any underlying or associated disease. (Bear in mind, of course, that I'm not a doctor and have no medical training at all.)

     

    Popping noises from joints are okay/normal and get worse as we age (provided you don't have an injury that is causing it, of course.) Rashes aren't so typical of scleroderma, but are perhaps more likely with other autoimmune diseases or allergies.  Skin changes should also be checked out, and you might also find a visit to a board certified dermatologist helpful (on top of a rheumatologist or scleroderma expert), because of the rash and changes you've noticed. Particularly screen them so you find one interested in skin diseases, since many specialize in beauty procedures.

     

    Please keep in touch, and let us know how things go for you.

     

    :hug-group:


  16. Thank you for leading our Skype chat initiative, Jo! 

     

    For those who are considering this, I'm very fortunate to be able to Skype with Jo regularly.  Skype video chatting is very easy, and typically free, even internationally. It's a wonderful way to get support for scleroderma, and Jo is looking forward to meeting more of you "in person" via Skype.  Each session is limited to only the first few who register, to keep things manageable, so you don't need to worry about being overwhelmed, either.

     

    :hug-group:


  17. Hi Amanda,

     

    What a fun topic you started! 

     

    I just want to add, that no matter what you decide to use on your face, consider protecting your hands from it, because your hands are severely affected by scleroderma so the skin may react differently than on your inner elbow or face.  If you can't get protective gloves on, you could consider using some clear food wrap to shield your hand.

     

    Good luck, and let us know how things go.

    :hug-group:


  18. Thanks for this article and for all your fantastic news-gathering, Jo! 

     

    I think this article is particularly interesting, in that they expected that people who gradually quit would be more successful than people who quit cold turkey.

     

    As a former smoker, having finally quit about 20 years ago, I earned my chops by quitting in a thousand different ways. I quit hundreds of times, including many attempts at tapering, cold turkey, classes, patches, pills, and promises and pacts with fellow-quitter-friends. I threw out partial packs, full packs, even whole cartons of cigarettes in absolute desperation. I can't even count the times I went through withdrawal. I was very addicted, physically and psychologically.

     

    The most interesting part of this article to me was that the success rate for a single attempt of quitting was so low.  I think many of us have to quit, and keep on quitting, and just don't give up on trying to quit, until we finally manage to get it right.  For anyone out there who is struggling with quitting, I say:  try again!  Maybe this time you'll garner all the right resources and attitudes. Maybe this time you'll make it over the hump. Maybe this time you'll succeed in your goal to only inhale fresh, restorative, pure air. Maybe this time you can actually let it go, and let it let you go. Maybe this time, you can be free. The only failure in quitting is when we fail to quit trying to quit!

     

    :hug-group:


  19. Hi RM6,

     

    Altogether, it probably wouldn't hurt for you to consult a scleroderma expert. They could figure out if you have "only" morphea or if perhaps you also have an overlap of some sort. They could make sure you have baseline tests done, and determine whether or not you need any treatment.

     

    After all this time, it is quite likely that your morphea is "burnt out", meaning that it has quieted down and isn't getting any worse. It's normal for that to happen in two to five years for most people, even without any treatment at all. And only very, very rarely does morphea ever co-exist with systemic scleroderma, from zero to 4% of the time, depending on the study, and although many scleroderma experts claim never to have encountered such an overlap, we do have Amanda here, who has both types of scleroderma at once.

     

    An interesting thing is that they can run a blood test, as people with morphea who have anti-centromere antibodies are the ones most likely to develop systemic.  Also, about 25% of people with morphea develop one or two symptoms beyond just skin involvement. It doesn't mean that they are developing systemic, but just that their morphea affects more than only the skin. See Morphea Scleroderma on our main site, for more information.

     

    Please keep in touch, and let us know what you find out.

     

    :hug-group:


  20. Hi Dimarzio,

     

    I hope you get some of your test results soon, and perhaps the monitor or MRI will provide a path forward for appropriate treatment. But if they don't, keep pressing for sleep disorders testing. It's just not right, to not sleep right, and we all need as much in our favor as possible when dealing with chronic illness.

     

    :hug-group:


  21. Hi Dimarzio,

     

    I'm glad you've found some relief with pregabalin. I'd like to note for others, and as a disclaimer, that it is generally prescribed to help with neuropathic pain, or fibromyalgia. It is in a class of drugs called anticonvulsants. It can have some very serious side effects and the dosage should never be altered, or stopped, without consulting a doctor.

     

    As it happens, people who are not typically sleeping soundly for a normal amount of time every night, and awakening refreshed, should seriously consider sleep disorders testing and possibly even neurological evaluation. Inadequate or poor quality sleep is very hard on the immune system. Additionally, scleroderma is also associated with several sleep disorders.

     

    Coping well with chronic illness requires good sleep hygiene, nutrition, and stress reduction -- all of which are challenging to achieve at best, not to mention, when we are tired and stressed!

     

    Anyone reading this thread who is not sleeping well and feeling refreshed, in general for over two weeks (with or without scleroderma), should ask their doctor to evaluate them for a sleep disorder. This typically requires sleeping overnight in a sleep facility and being monitored while sleeping. It can detect things like insomnia, depression, restless legs syndrome, and sleep apnea.  Once the problem(s) are identified, then the appropriate therapy can be used.

     

    Meanwhile, anyone who is significantly sleep deprived should avoid driving or operating machinery, as sleep deprivation can be as hazardous as drunk driving. See Neurocognitive Consequences of Sleep Deprivation, and Sleep Disorders and Scleroderma. With insufficient sleep, we are subject to "microsleeps".  See Microsleeps: 30 Seconds to Catastrophe.

     

    I hope that with some good treatments and evaluations, you will continue to feel better, and more functional, soon!

     

    :hug-group:

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