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Posted 26 May 2013 - 02:32 AM



I'm new to this site, but have been diagnosed since 2006. I still work, (bus driver) but I'm finding things increasingly difficult to handle at the moment.


I have CREST diagnosed as limited cutaneous systemic sclerosis. Recently, the whole body pain got worse, along with my swallowing and ability to eat a meal. Along with my other medications the doctor has now got me on prednisolone. Primarily for my right foot that seems to be swollen and partially numb/burning. I really don't know what to do. It seems to be one thing after another and I'm tired of fighting. I also know that there are people far worse than me.


Is there anything that will help my right foot, since should it become fully numb I can't drive. I really hope someone has some suggestions.


Thank you for taking the time to read this.



#2 Joelf


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Posted 26 May 2013 - 09:19 AM

Hi Dionne,


Welcome to these forums!


I'm sorry to hear that you've been suffering with Limited Scleroderma since 2006 and I've included a link to our medical pages to give you some more information. Your foot does sound very painful, although hopefully the prednisolone will ease the symptoms a little. We do have a warning about the use of Glucocorticoids, Steroids (Prednisone) for Scleroderma as continued use of them can precipitate a renal crisis in Scleroderma. Having said that, I take a low dose of them myself.


I've also included a link for you to another of our threads regarding Swelling in Legs and Feet With CREST which I hope you'll find helpful and informative. Please note that I'm not medically trained (although that little fact never stops me from telling my doctors how to do their job! ;)) but I think that swelling and numbness of the feet and legs can be caused by many other medical conditions as well as Scleroderma, which can sometimes be a red herring. I suggest that perhaps if it persists you go back to your doctor to enable him/her to carry out further tests. I assume that having been diagnosed since 2006, you're being treated by a Scleroderma specialist. We do recommend that, if possible, our members consult one, as sadly many rheumatologists do not have the knowledge and expertise to deal with this complex disease.


Now that you've found our forums, I do hope that you'll continue posting and I'm looking forward to hearing more from you.


Kind regards,



Jo Frowde
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#3 Shelley Ensz

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Posted 28 May 2013 - 11:36 AM

Hi Dionne,


Welcome to Sclero Forums!  I'm sorry you have scleroderma and that it is worsening right now. 


Jo has given you some great links and info. I would just like to underscore the importance of seeing a scleroderma expert for your best treatment options. Please keep in mind that I have no medical training at all; I haven't even received my Internet Medical Degree yet, although I sent in my five dollars for it a few months ago.


Please make sure that all of your symptoms are evaluated carefully, and not just simply ascribed to being due to scleroderma. It is my understanding that typically, scleroderma skin involvement would more likely or more often cause swelling in both feet (or both hands), rather than just one side. So you would want to make sure that your doctor has very carefully ruled out other possible causes, such as blood clots or a sprained ankle. If you have any doubts at all about the diagnosis/care for any symptom, you should get a second opinion right away.


It would seem sensible to me that your care could not be made any worse by getting another opinion about your foot. If your doctor didn't discuss the issue that there are special steroid warnings for scleroderma patients, that would be doubly concerning as it may mean they are not up to speed on scleroderma medical issues.


If your swallowing problems are worse or the symptom has not been evaluated yet, you should ask for a referral to a gastroenterologist.  In the meantime you might want to try to analyze what is causing the difficulty swallowing.  Such as, do you have difficulty swallowing a cracker, but not drinking a fluid?  Is it more a problem with harder foods, like steak, but not so much with ice cream? Or does it seem to be spasms that make it troublesome to eat anything? Do you notice any relationship with heartburn?  Is it ALL the time, or only at certain times?  Are there any foods or types of food that are easier for you to eat?  Is it caused only by cold foods? The answers to questions like that will help your doctor figure out the best tests to start with, to hopefully help narrow down the problem.


There are many treatments that can improve swallowing difficulties, depending on what is causing them. Some of us with milder or more intermittent problems are able to get by simply by modifying what or how we eat, such as sipping fluid before and/or after eating a dry food, or paying more attention to chewing our food.  Sometimes it takes medication (or more medication) for heartburn, or for motility issues, etc.  In any event, its nothing to ignore or "accept"; unless it is very mild (which is probably isn't, or you wouldn't be mentioning it), it is an action item that requires attention.


Regardless of what you do, or don't do, about these issues, we are here for you.


You don't necessarily have to "keep fighting" scleroderma. Some of us find it is easier to not fight it, but rather give in and accept it as a quirky part of our life.  It can be sort of like adopting a high-spirited, special needs monkey -- it takes more time and effort than we ever imagined, but we never know quite what to expect, and some of it could be downright entertaining...if we relax our guard long enough to see the lighter side of things.


Recently, one of my relatives broke his foot, his driving foot of course. His partner took it in stride for about a week or so, before she burst out exclaiming, "This is just like Driving Miss Daisy!".


So when I heard your concerns about your foot, I certainly do empathize with it, having had enough sprained and broken ankles to last a few lifetimes, and it definitely is a serious health issue to figure out and get under control, too.  But then the Scleroderma Monkey side of me -- the appreciator of the absurd  (which requires a temporary suspension of regard for propriety) -- thought, my goodness, if she doesn't get this fixed soon, she might just have to change her forums screen name to Miss Daisy!


Here's hoping that they figure it out and get it resolved soon.



Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
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