Jump to content
Sclero Forums

Shelley Ensz

  • Content count

  • Joined

  • Last visited

Posts posted by Shelley Ensz

  1. Hi Barefut,

    It's my understanding (and please correct me if I'm wrong!) that if it is a mild and fleeting thing, it may be nothing to worry about. If it is stronger or recurring, you will need to check with your doctor on it.

    Many people have palpitations without any underlying heart disease. Major culprits for that are coffee and stress. See our section: Arrhythmias, Palpitations, and Conduction Disturbances.

    Spasms in the esophagus (throat) can also give some interesting feelings, as can any fasciculations (tiny muscle spasms or tics or twitches). Fasciculations are usually harmless and often caused by things such as caffeine, stress, magnesium deficiency or even withdrawal from some medications.

    You may want to read up on palpitations and such, and of course, consult your doctor over any new or worsening symptoms (because I'm not a doctor, I have no medical training at all, and I could be wrong, I often am!).

  2. Hi Jennifer,


    There might not be much that can be done, if it is part of the disease process (which it very likely is.)


    See: Scleroderma Skin Involvement. And particularly this section:


    Scleroderma Lips Deep lines around the lips worry many scleroderma sufferers but unfortunately collagen injections and laser treatment are not advisable as they may cause scarring. Tightening of the skin of the face may lead to microstomia - a small mouth. Facial and mouth exercises may help. "Disappearing lips" can be a very upsetting cosmetic problem and a reputable plastic surgeon may be able to perform an operation called a mucosal advancement. Royal Free Hospital (Also see: Dental Involvement)

    I'm sorry that's not very good news. On the positive side, it really is true people notice facial expression far more than they notice facial features. You may notice that smiling makes the grooves disappear or at least be less noticeable. Frowning, or lack of expression, makes them more prominent.


    So although it seems very trite, the best treatment for scleroderma lips is to smile! It is a good stretch for the tight skin, and it distracts people plus brightens up their day at the same time.


    Lip thinning can be covered up (a little) by using a lip liner the exact same shade as lip color to extend the lip area -- and the closer both of these are to your natural lip color, the better -- then if/when the lipstick wears off the lips, the liner will not be noticeable, and it looks as though the lips are larger and fuller.


    Telangiectasia can be covered up well with DermaBlend cosmetics, or with my personal favorite, which is a mineral (brush on) foundation. A properly matched mineral makeup looks virtually invisible and is extremely easy to brush on. Some brands are anti-inflammatory. Mine covers all sorts of my imperfections, including telangiectasias, rashes, freckles, moles, and even facial (and eye) psoriasis.


    Distraction is also one of the major ways to improve looks. If you don't want people looking at the cannula, wear a lively hat, or a bright scarf. My husband, Gene, wears the OxyView glasses, which deliver oxygen through tubing in the glasses, so he doesn't have a visible cannula.


    Also, wearing stronger eye makeup can draw the attention to the eyes. Lucky for nearly all of us, the eyes are the #1 feature for sexual attractiveness...and eyes brightened up by a glowing smile simply can't be beat!

  3. I just wanted to point out that Judith did not make a typo with "Scleredema" --


    Scleredema is an illness similar to scleroderma. It is also known as Scleredema Adultorum, Scleredema Adultorum of Buschke, Scleredema Diabeticorum, and Scleredema Diabeticorum of Buschke. This is a very rare disease. Up to 1965, only two hundred twenty-three cases of scleredema had been reported worldwide.


    Read Sue Ann's story for more information and an update on her son's progress.

  4. Hi HDHBCH,

    Welcome to Sclero Forums, I am glad you found us!

    Gidget makes an important point. Scleroderma is a very unusual and difficult illness to treat. Most doctors may see only one or two cases of it in their entire career (if that). Thus, odds are very good that they don't know how to manage and treat scleroderma. Some medications that are perfectly okay for other (or even similar) illnesses can backfire with scleroderma patients. (See our recent discussions about prednisone for an example.)

    There are a few dozen centers in the U.S. that specialize in scleroderma. The best thing you could do would be to consult a scleroderma expert. They can review your treatment plan and make sure you are on the very best medication(s) for your condition. See Scleroderma Experts.

  5. Janey, as you know, I am thrilled to pieces that you are back home and starting on the road to recovery. I really can't imagine all you've been through.


    I must say, you were adamantly optimistic through the whole ordeal, and I think your attitude had a lot to do with the fact that you pulled through, despite everything.


    It's great to have you back...even with very wobbly legs and in-home rehab!

  6. Hi Peanut,

    Sometimes prednisone might be unavoidable, but many doctors prescribe it readily, and they may not be aware of the especially adverse impact it can have on scleroderma patients.

    At the very least, I'd make sure the matter was thoroughly discussed and that your doctor is aware of the risks involved. Usually there are alternatives to steroids. (But of course, I'm not a doctor, I have no medical training at all.)

    See our Scleroderma Lung Treatments page for some ideas. And do the best you can, under trying circumstances.

  7. Jackie, I just couldn't resist....I gave you an "avatar gift" of shoes so we all have something to remember your good day with.


    For those who don't know about avatars yet -- they are the little picture underneath each member's name, next to their post. You can select an avatar from our large selection that has been custom designed by our ISN artists. There are hundreds to choose from, in many different categories.


    To set yours up, or to change it, click on the link for "My Controls" which is near the upper right hand corner of the page. Select the link for Avatar settings that you will see in the left column, down a ways. And follow the simple directions to pick (or change) your avatar.

  8. Hi MaryFanPhilly,

    Thank you for pointing out the issues that you are encountering with prednisone.

    I'm very glad for everyone who has found relief with prednisone, and I really don't want to rain on anyone's parade, as I know how precious even a few moments of relief can be!

    Unfortunately, prednisone is strongly associated with kidney failure in people with scleroderma, and with pneumonia (increasing the risk by 70%). Even low-dose steroids can cause irreversible loss of brain tissue in people with autoimmune disease. Thus it is strongly recommended to try to avoid corticosteroids (such as prednisone) in people with systemic scleroderma. See Medications: Steroids.

    When avoiding it simply can't be done, work with your medical providers to try everything possible to keep it to the lowest dose. As Mary so aptly points out, you don't need to be on it very long for severe and irreversible problems to begin -- and scleroderma puts us at greatly increased risk of severe (and even deadly) side effects from prednisone and other corticosteroids.

  9. Hi Sakar,


    I'm sorry you are so sick. My advice would be just to call your local Urgent Care or Emergency Room. Or just go in. This is not normal. The color change might be caused by a medication, since they can do that.


    But in my humble (and my I'm-not-a-doctor) opinion, you seriously need to have your treatment plan reviewed and your g.i. problems further investigated.


    Most doctors are simply not set up to handle urgent problems or acute illness. You can call them if you want -- after you call the E.R. and ask for a triage nurse, who can tell you how urgent your symptoms are, and how soon you need to be seen.


    That can make the difference between knowing whether you have time for a shower before you go to ER, or whether you can mosey on in to your doctor's office in a few weeks.

  10. Hello Smac,


    I'm very glad that you have found us, but sorry it is because you have diffuse scleroderma. It's always such a catch upon being diagnosed -- on the one hand it is super to have answers, at long last. And on the other hand, it can be quite daunting at first.


    But we are here for you, and delighted that you have joined us.

  11. Hi Barefut,

    Well, as you know, we don't have any medical training at all, and this is an issue for your medical team. We can share bits and pieces, but nothing on earth can replace an in-person evaluation by a medical professional.

    My husband has lung disease, and his lung doctors ask him about ankle swelling and examine his ankles at every visit. Lung problems can affect the heart and the reduced circulation can cause swelling.

    As was already mentioned in this thread, kidney failure can cause swelling, too. Not to mention that scleroderma skin involvement typically starts as fluid retention in the affected area.

    Also, many medications -- including prednisone -- can cause swelling of the legs and feet. Thus, we need to send you back to the doctor again. Sorry! sad.gif

    To see the impressive list of nearly everything that can go wrong with the systemic types of scleroderma, many of which could cause fluid retention, see: Scleroderma Symptoms.

    Often, just reducing salt in the diet (particularly hidden salt, as found in processed foods) and increasing walking and activity levels can get many cases of fluid retention under control.

    I'm very glad that you've found some pain relief, and I really don't want to rain on your parade, as I know how precious even a few moments of relief can be! But most unfortunately, another thing to seriously discuss with your medical team is that prednisone is strongly associated with kidney failure in people with scleroderma, and with pneumonia (increasing the risk by 70%). Even low-dose steroids can cause irreversible loss of brain tissue in people with autoimmune disease. Thus it is strongly recommended to try to avoid corticosteroids (such as prednisone) in people with systemic scleroderma. See Steroid Warnings for Scleroderma..

    It's a constant balancing act, isn't it? Please let us know what you find out.

  12. Hi Giorgigirl,


    Please keep in mind I have no medical training at all, but it sounds to me like sciatica. See your doctor for further info, and possibly for some physical therapy. It tends to be a chronic condition but there are many things that can be done to alleviate the pain.

  13. Just another reminder to please resend any emails to sclero.org that you sent us in the past week.


    Also, many threads dropped by the wayside because members were not receiving notification of posts (many people rely on receiving posts in their email, rather than visiting the board for messages.) So if you'd like some more response to any email thread, just post a message in it and it will start the ball rolling again.


    We apologize for the inconvenience we caused everyone from our email service being interrupted.

  14. Our sclero.org email system was down for the past 3 days or so, while we attempted to transition to a spam-free system. Technical issues were not able to be resolved, so we abandoned that project and are back to our old email system.


    This has affected all of the Sclero Forums emails, so members have not been receiving notification of posted messages or daily digests, or subscribed thread alerts.


    If you have begun or participated in a thread that seemed to fall by the wayside in the past few days, and you still would like input on the topic, please post another message to that thread in order to get the ball rolling again.


    Also, if you have sent any emails to anyone using their sclero.org email address, within the past 3 or 4 days, could you please resend it? Theoretically, we were supposed to not lose any mail permanently during this attempted transition -- but it looks like we might have lost everything. Either that, or there will be a huge server burp, delivering up over 4,000 waylaid spams for our viewing pleasure.


    Thank you for your patience and understanding -- and for your help in gettting things back on track. We really appreciate it!

  15. Hi Patty,


    I'm sorry you're experiencing more issues. If you are still in pain, please go to the hospital E.R. Most doctors offices aren't set up to handle acute illness. It seems they prefer to see us when we are perfectly healthy. :(


    It's my understanding the pancreas problems usually cause low blood pressure, but I may be wrong (I often am, and I have no medical training at all.)


    Anyway, steroids could be a cause of pancreas problems so you'd really want to get things sorted out as soon as possible.


    Perhaps you've had this before and know what you're up against, but if you are just guessing that its pancreas problems because of pain in that general area or similar symptoms to what is listed for it, please be sure to get examined right away.


    It's just way too easy for all of us to be wrong about pain and dysfunction in internal organs...and it is also too soon to just chalk it up to scleroderma, because everything else needs to be ruled out first.

  16. Mike, you were asking what the "best posts" were on this forum. I'd have to say this is my most favorite thread of all, where we've been able to get to know many of our new and old members.


    And it's the ideal thread for new (or old) members to try posting their first message. It can be about anything you want -- hobbies, pets, families, medical challenges, etc.


    Reading the forum guidelines can be helpful before posting. But they are a lot to remember, so it is okay to just post away and let our team of support specialists modify your message to fit all our peculiar guidelines.


    It can take anywhere from just a few minutes to a few hours (sometimes longer) for your message to be reviewed and posted, so don't despair if it doesn't show up right away, it doesn't mean you've done anything wrong. If you type something and then hit the "Send This Message" button, odds are very good it will get posted on the board sooner or later.


    So we invite all the newbies, or even oldies who haven't introduced themselves yet -- or who want to introduce themselves again or talk about another aspect of their lives -- to get yourself comfy and make yourself right at home in this thread.

  17. Hi Elehos,


    I may be wrong (I often am, and I have no medical or psych training at all, so take that into consideration in evaluating this idea.) I tend to think that it might be dangerous to write off the episode as being due to a medication, without further medical evaluation.


    The reason I say that is because psychosis is a very well-known possible symptom of lupus, which you have, and it can occur intermittently. Only some cases are caused by the medications used to treat lupus, while others are caused by lupus itself.


    The good news (if any) is that if it is psychosis due to lupus, then it is treatable. The way to approach it would be to ask your primary care doctor to refer you for a thorough neuro/psych evaluation. Make them give you every neuro-psych test they have, so they don't rush to judgement on the diagnosis (since that would throw the treatment off).


    Just to top things off smartly, there is a very high incidence of mental health problems with scleroderma, too. Some researchers now think it may be due to inflammation affecting the brain. Which really behooves us to take all signs of any mental health issues very seriously, and demand thorough testing and treatment at the first sign of trouble.


    I'm sure you agree that we all need to retain as much of our wits and equilibrium as we can, regardless of what the illness throws at us. Please don't just brush this off as only due to the meds, until you've had a thorough evaluation. It might be something more serious lurking around, which may really need medical treatment (like lupus psychosis).

  18. Hi Sakar,


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


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