Jump to content
Sclero Forums

Shelley Ensz

  • Content count

  • Joined

  • Last visited

Posts posted by Shelley Ensz

  1. 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.)



  2. 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.



  3. 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.



  4. 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.


  5. 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!



  6. 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.



  7. 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.



  8. 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!



  9. 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.



  10. 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.



  11. 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.



  12. 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.

  13. 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. 



  14. 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!



  15. 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.



  16. 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.