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Shelley Ensz

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Posts posted by Shelley Ensz

  1. 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!



  2. Hi Keelton,


    I'm sorry, I just realized this post had been overlooked, although we've probably answered some of your concerns in other threads.


    As it happens, I think one of the major concerns for nearly all of us in this forum is dealing with fear of the unknown. It's something that binds us together, even if we have different symptoms or different types of scleroderma. Figuring out how to live happily and successfully today, despite whatever we are already dealing with, and concerns over what symptoms we might yet develop, is extremely important. Making a good adjustment to uncertainty, and overcoming anxiety, are vital coping skills that will serve us well in all areas of life.


    I'm delighted that you are taking care of yourself by seeing a psychologist and taking medication. Think of this ordeal as being a fine opportunity to learn how to deal with uncertainty. It's quite possible that all of your concerns will amount to nothing at all, and you will hugely regret having spent a single moment consumed with worry. Then again, maybe something worse will befall you eventually (in the end, we all, inescapably, die, whether we are healthy or not at the moment), and then you may regret any time spent dreading the inevitable.


    Facing our fears straight on, and dealing with them, can pave for the way for a life filled with as much happiness and joy as possible. And, it is definitely possible to live with scleroderma with happiness and joy!  So work with your psychologist to turn off the recordings that say this is horrible and hopeless. It is not!  Learn and reinforce new thoughts, such as, you are capable, you have support, you can find joy and love and laughter, and create an attitude that is bigger than whatever you are facing at this moment.


    You can do it!  It won't necessarily be easy. It will take a lot of determination and effort. But you can face this uncertainty, and learn to live with it, and just accept it and not fight it every second of the day. Kudos to you for realizing its an issue worth dealing with. And remember, we understand, and we are always here for you. And, in a short while, you will probably feel bolstered enough to become the shoulder that is also there for others to lean upon.



  3. Hi Kristyn,


    Welcome to Sclero Forums!  I'm sorry you have morphea, but very glad that you've found our online support group. UVA1 Phototherapy is the first line recommended treatment for it, and shows excellent results overall, so you may want to look into it at your nearest opportunity.


    As it happens, during the inflammatory stage of skin disease, it can cause itching. What's the weirdest of all is that the itching can occur even before there are any outward, visible signs of disease. For many of us, that itching seems to be worse at night, perhaps for a variety of reasons.


    Sometimes morphea can burrow deeper into the underlying tissues, and raise some havoc. Plus, anyone can get sciatica, even without morphea. The important thing is to treat it, typically with physical therapy, until you find methods that relieve the pain. 


    Please bear in mind that I am not even medically qualified to trim a hangnail.  That said, I have an unusual approach to dealing with incessant itching. That is, I apply one of those hot/cold arthritis lotions, or an ice pack, at the back of my neck. Our body processes pain from the bottom up, so it will feel the pain nearest to the head, first.  By giving it the hot/cold lotion or cold pack as it's "pain", then the brain has trouble processes any more pain signals and thus I experience the intentional self-inflicted (but harmless) hot/cold pain, which stops me from itching (which always makes any skin lesion worse, sometimes terribly worse or even infected.) 


    Also, avoiding soap as much as possible and taking baby oil baths can help. See Scleroderma Skin Involvement: Itching on our main site.



  4. Hi Keelton,


    In my personal non-medical opinion (and keep in mind that I don't even have a valid First Aid Certificate), most health problems are likely to either stay the same or get worse during pregnancy, and not magically evaporate.


    It's probably borrowing trouble to be concerned about it at the moment, when the very first order of business should be to consult a listed scleroderma expert. They could discuss whether you may have early scleroderma, or your odds of developing it, and the considerations for pregnancy in your particular case.



  5. Hi Keelton,


    With suspected autoimmune disease, you should consult your rheumatologist or scleroderma expert prior to becoming pregnant. There are many things to consider, such as timing in regard to flares or remissions, medications to avoid or discontinue, and discussions about the potential affect on the mother and the fetus. With careful planning, there are often successful outcomes -- it's the lack of careful planning that can be problematic or even life-threatening in some cases.


    See our guide to Scleroderma and Pregnancy. And, if you haven't already, it would be a good idea to consult a listed scleroderma expert. Bear in mind that diagnosis takes an average of six years in the U.S. (which just shouldn't be, and there is now an effort underfoot to diagnose scleroderma sooner, but it will likely take years for that to actually catch on among the non-experts). But part of the problem is that autoimmune diseases often develop very slowly -- which is a great thing from the aspect of not getting overwhelmingly sick right away, but a bad thing in regard to not having answers right away, either.


    What could matter for you is whether any treatments you could have for dysphagia could/would adversely affect the fetus. Dysphagia can often be managed with some lifestyle changes, like eating slowly, sipping fluids, avoiding difficult foods, favoring easier foods like smoothies or soups, etc.  But I guarantee you won't regret raising the question with your rheumatologist ahead of time so that you can make the best possible decision.

  6. Hi Keelton,


    Welcome to Sclero Forums. I'm sorry that you have esophageal dysmotility, and send my best wishes to you. Even without a distinct diagnosis yet, it would probably be a good idea to be seen and monitored by a scleroderma expert. That way, you can know that a complete evaluation is done, and that any associated disease can be detected as soon as possible. Also, they can be a wonderful help in managing esophageal issues. 


    Esophageal problems are common in scleroderma, but range in severity from very mild and intermittent to very severe, so you will always hear a chorus of "everyone's different!" around here. Whereas I know, you just want to know what to expect, and what's in store for you. Yet unfortunately none of us have a crystal ball for that. Mostly with issues like this, the real challenge becomes learning how to live with uncertainty. 


    I have only mild and intermittent trouble swallowing, but even the slightest trouble swallowing is very impressive at the time it's happening. I've learned that I have to eat slowly, chew well, always have a liquid at hand, and pay attention. I tend to run into trouble more when I'm eating out or with others, as I can get distracted, forget to be cautious for a second, and there we go again. Once I realized that connection, I became more alert, and that sure helped avoid issues. Also, I found I need to tilt my head slightly forward, not backward, to swallow and to take pills, especially. It's a bit counterintuitive, you'd think it would be putting your head back that would help.


    Liquids are often easier to swallow for people (I have the most trouble with dry foods that I haven't chewed well). I've had throat spasms from ice cold food before (too much, too fast, too cold), so consider that the temperature of the food might sometimes be an issue and adjust accordingly. You can also work with a dietitian to design nutritious meals that work around this issue. For example, a smoothie for breakfast might be much better than Melba toast.  Making any soup, but then blending it at the last minute, removes perhaps troublesome chunks but saves all the nutrition. 


    There are entire cookbooks for people who need or want to be on liquid diets. Tubal feeding is an eventual solution. We've had a few members who absolutely thrived on tubal feeding, feeling like it gave them their life and energy back. One of my friends was able to return to work full time, and another one, with a wicked sense of humor, started her own radio cooking program. So there is definitely a path forward for you, but it will still be an unavoidable adjustment phase, anyway. 



  7. Hi Sweetcarrot,


    I'd like to emphasize how right Jo and Dimarzio are, in that it is so much easier for me to just stay warm in the first place, rather than to recover from it in the second place. 


    I like to dress in layers, and always wear just a little bit more clothing than necessary in order to stay warm.  I keep my heat on just a bit more than it needs to be, have one more blanket than absolutely necessary, etc. Keeping the head and chest warm helps to keep the hands and feet warm, so it is sometimes more helpful to wear a hat or sweater than to wear gloves or heavier socks, and it took me awhile to really understand that.


    Think warm, stay warm, be warm!  Also see: Raynaud's Prevention on our main site, for many more practical tips!



  8. Hi Sweetcarrot,


    Welcome to Sclero Forums!  I'm glad you found us, and hope to get to know you better.


    There are so many different things we can do to make living with Raynaud's easier. I never thought about smaller rooms, though it makes perfect sense. My grandfather used to have a sun porch, which kept him toasty warm all the time, which was very important to him, since my grandmother craved ice cold room temperatures.



  9. Hi RLM,


    Welcome to Sclero Forums. I'm sorry you have Morphea. Did you know it is common for people with morphea to experience one or two other symptoms, such as heartburn, without ever getting systemic sclerosis?  See Morphea Scleroderma, on our main site, for more info.


    In fact, depending on the study, only 0 to 4% of people with morphea ever have an overlap with systemic. Many scleroderma experts have never had a patient who has had both.


    We have Amanda Thorpe here, and she does happen to be one of the rare people to have both morphea and systemic. So, it's not entirely impossible, but also it is NOT ever inevitable, either, that morphea will "turn into" systemic. It's not like it is an automatic progression of some sort, since there is a 96% to 100% chance (depending on the study) that someone with morphea will not ever get systemic.


    Morphea is very treatable now, especially with UVA1 phototherapy. Many people with morphea are treated by dermatologists. Please let us know how things go for you.



  10. Hi Linda,


    Welcome to Sclero Forums, I'm glad you found us.


    Fatigue can be a big issue with scleroderma, and with many other conditions as well. Sometimes it is due to general inflammation, but it can sometimes be caused by overlapping conditions or complications, such as internal organ problems or even sleep disorders.  Occasionally just the stress of illness or the diagnostic process can cause anxiety or depression, which can also lead to exhaustion.


    And, all fatigue is not necessarily the same. Sleeping sitting up is probably an indication that it is time to discuss a sleep disorder evaluation with your doctor.  Sleep disorders are very common in the general population, and also with scleroderma, too.



  11. Hi Dechri,


    One aspect to consider is that some scleroderma experts only see people who are referred by another rheumatologist.  Often they will request complete medical records before agreeing to take on a case. So it can be very helpful to have various symptoms tracked down and documented.


    Consulting a board certified dermatologist for skin issues can be helpful. Be sure to take (good) photos of any skin abnormalities, such as rashes or discoloration. If your doctor recommends vascular lab testing to prove Raynaud's, or any tests that could nail down one of your symptoms, jump on it.


    Regularly request your medical records so that you have any pertinent ones available for consultations.


    Probably the vast majority of scleroderma patients first see local rheumatologists.  Very often they get diagnosed with something that is more common or that the rheumatologist is more familiar with, such as fibromyalgia or lupus. I'm not saying don't trust local rheumatologists, but if you have very clear symptoms of scleroderma, such as skin tightness or pulmonary fibrosis, also maintain enough wherewithal to consult a scleroderma expert, and get their input on the matter.


    Connective tissue diseases can take years to manifest and develop.  The languid course usually offers plenty of time for patients and doctors alike to debate what is, what is developing, or what was misdiagnosed.  So getting individual symptoms diagnosed and documented and treated as they arise, is the most common course of action.  It is very rare for people to get such prompt diagnosis as Jo, and her case was helped along substantially by getting referred to the proper experts immediately.



  12. Hi Madusa,


    Welcome to Sclero Forums. I'm sorry that you are concerned about possible scleroderma, and send my best wishes to you.


    As it happens, it is possible, although quite rare, for scleroderma skin involvement to onset rapidly.  I know a few weeks seems like forever when you are sick and worried, but it is common for people to wait for months to see a rheumatologist for the first time. In the interim, stay in touch with your primary care doctor and see them for any change in your symptoms. They may be able to hospitalize you to jump start treatment of some sort.


    You're very fortunate to be in the U.K., where they have truly fabulous world scleroderma experts who stay on top of all the latest developments.



  13. Hi JustAsking,


    Welcome to Sclero Forums. Since lab test analysis varies, it is important to check what your lab report says, and what your doctor says the test result means, in light of your symptoms.


    This is important because it is possible to have antibodies without associated illness, and it is possible to have illness without antibodies. Generally speaking, it is the symptoms that rule the day when it comes to a scleroderma diagnosis.


    We are not doctors, so we cannot diagnose nor rule things out. However we do have some good resources on Scleroderma Diagnosis, including videos and symptom check lists. Scleroderma is far more common in females. In men, it usually occurs due to occupational exposures (such as construction workers, miners, or firefighters.)


    I'm not a doctor (in fact, I have no medical training at all).  Lab ranges vary for every test, laboratory, and method that was used, so reference ranges for other tests are useless. The only range that matters is the one that is given by your laboratory. So, if they list it as Negative, it's negative, and if they list it as Positive, it's positive.  Even then, doctors sometimes decide that the test result isn't helpful if it doesn't correlate with the symptom pattern.


    The most telling symptoms for scleroderma are generally Raynaud's, tight skin, and pulmonary fibrosis; it's often more of a constellation of symptoms that leads to diagnosis, unless there is one very prominent symptom early on, like unmistakable tight skin.


    As it happens, Cushings can cause osteoporosis (low bone density) and vertebral compression (back pain and stiffness). I don't know if it can cause tenosynovitis (trigger finger) or not, but many things can, including repetitive use and many other forms of arthritis, too.



  14. Hi Miocean,


    If it's definitely not skin tightening from scleroderma, then it may be peripheral neuropathy/parasthesias and/or edema, perhaps caused by uremic neuropathy, given your kidney failure.


    If I were you, I think I'd see my nephrologist about this, before changing any medications. Both the pain patch and plaquenil are probably more likely to be helpful than harmful for you right now.  I can understand looking askance at the newest medications first (I always do that, too!), but in this case, you might want to have your doctors take a second look at the underlying illness(es), as well.


    Of course, that's just my two very uneducated cents, which isn't even enough to buy penny candy anymore!



  15. Hi Speedo,


    I may be wrong, I often am, but I think the take-home message from that research article was supposed to be that using enteric-coated mycophenolate sodium, instead of just plain mycophenolate mofetil, solves the absorption problem, when someone is also taking omeprazole. From what I can tell, it looks like the two drugs are supposed to be therapeutically equivalent.


    Enteric coated is a more advanced formula, which is supposed to help reduce gastrointestinal side effects. Which means it probably costs more, too. Oh whoops, I just looked it up, and it seems Myfortic has finally gone generic, so the generic cheaper than Cellcept now.


    You might also want to talk to the manufacturers directly. Genentech may be able to advise you as to whether just spacing out the medications is enough to overcome the malabsorption. Cellcept is made by Genentech, and Myfortic (the enteric coated) is made by Novartis.



  16. Hi Kathy,


    You'll need to see your doctor over any change in symptoms, including hot flashes, of course.  As it happens, hot flashes are very common in women, and as you've already discovered, they can be caused by many things other than just menopause.  As we age, our comfort zone for temperatures shrinks, so even without scleroderma or thyroid dysfunction or menopause or anything else, we are likely to encounter hot flashes.


    A first step is to review all your medications to see if this is a side effect. Many medications have this as a side effect, See Hot Flash Guide by Drugs.com. Hot flashes are the polar opposite of Raynaud's, so also look closely at any treatments you may be taking for Raynaud's, as it might be a bit overly effective at the moment.


    Please let us know whatever you find out about this with your doctor.



  17. Hi Kathy,


    Welcome to Sclero Forums. I'm sorry that you are sick, and dealing with conflicting opinions.


    If I were you, I'd seek a tie-breaker opinion from a listed scleroderma expert.  Since your illness is not moving fast or aggressively, and you don't yet have prominent symptoms of any particular connective tissue disease (such as a lupus butterfly rash, or tight skin from scleroderma, etc.), you might still have a long wait for a definite diagnosis. And, it might be beside the point if your symptoms remain mild, as about 50% of people with some symptoms of connective tissue disease never go on to develop a full-fledged, more specific, illness. Therefore, it's normal for many doctors to sit on the fence for awhile, waiting to see what else develops, if anything.


    It can be extraordinarily stressful to have reason to suspect serious illnesses, and more stressful to have loose or disputable answers. Most of us find support during this phase to be absolutely vital.  So I want to assure you that you, and everyone else in your position, are very welcome and encouraged to participate fully in Sclero Forums.  We know you know that doesn't equate to a diagnosis. But we know you know that you need and deserve support just as much, if not more, than someone who already has an iron-clad diagnosis.