Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Posts posted by dimarzio

  1. The S stands for Sclerodactyly, which is a localized thickening and tightness of the skin of the fingers or toes. Sclerodactyly often leads to ulceration of the skin of the distal digits and is commonly accompanied by atrophy of the underlying soft tissues. It could be that this may be what you have, but you should speak to a Scleroderma specialist to get confirmation either way.

  2. Anyone else fed up with people saying "why can't you do this?" and "why can't you do that"?  It seems that nobody understands what this disease does to your connective tissue.


    They can't understand why I can do things some days but not others and why I can sometimes endure the pain, fatigue cramping, etc. carrying our basic functions and sometimes it gets too much.


    I'm simply fed up with people saying "why can't you?", thinking that Scleroderma is nothing more than a skin condition or just can't be bothered to even understand what this disease entails.


    I know someone with rheumatoid arthritis (RA) who gets so much sympathy and understanding, yet those same people think that all of my symptoms are just made up.


    Most common illnesses are well understood, but this one gets no sympathy or understanding from anyone, including the medical profession.


    I've pointed quite a few of my friends and family towards this site and a number of other resources, yet none of them can be bothered to read anything or even watch a couple of videos.


    It's like Scleroderma is invisible or irrelevant and attitudes can be very frustrating and even distressing at times.

  3. Needs to be checked out because swallowing difficulties could have a number of causes including oesophagal dismotility or narrowing of the oesophagus (which can be stretched under anesthetic to improve matters.)


    The more sinister problems are much less common but need to be excluded.  Do you have reflux problems or blood coming from either end?

  4. I've had the bloated stomach for many years and was diagnosed with IBS, but I feel sure it is Scleroderma related. I have found eating smaller meals more frequently helps.


    Can often be food or other substance problems such as alcohol, nicotine, gluten, lactose or dairy products.  Try eliminating all of these for 4 weeks, then reintroduce one at a time to see if one of these is the cause.


    Plenty of exercise is also good for the digestive system, so try to do as much you can (good for your circulation, heart and respiratory system too).


    Hope this helps.

  5. Been trying it for the last 2 weeks and so far no effect.  Guess I am not gluten intolerant then.


    However many people are intolerant to a degree, some more than others, so certainly worth a try.


    The only effect was on my bank balance as shop bought gluten free food is a tad expensive and so is flour if you make your own.


    Just give it a go and see if you feel better as we are all different.

  6. Also, sometimes symptoms can predate a positive ANA and in others it can be the other way round.  Its a very strange disease especially in respect of the widely variable symptoms and speed of development. The varying subsections also make the illness very difficult to understand by many.

  7. Can't comment on your peeling skin, but it is quite possible to have scleroderma without any skin symptoms at all, as I can personally testify.


    Often, skin symptoms come later, but sometimes never.


    As for your skin problems being due to age; well, that is complete tosh and you need to ask for a second opinion.

  8. Just read this in the forum guidelines.  Could anyone elaborate or provide the ingredient or why it is suspected to be beneficial or point me to any newsroom articles?  Thanks.


    Nicotine—Definitely not good for systemic scleroderma, not good for health in general. OK to discuss when used in context of not healthy or about people who want to quit or have quit. Brand names of cigarettes are not okay. An ingredient in cigarettes is suspected of being beneficial to scleroderma so news articles about potential clinical trials for it are also okay; but this topic is allowed to come forth only through our newsroom articles.

  9. I'm not aware that blood tests can differentiate between limited and diffuse.  Can anyone enlighten me?


    Itching can be horrible.  As far as I am aware, treatments could include antihistamines, creams and lotions or possibly nerve desensitifying medication.  All of these have benefits and side effects, but all are worthy of consideration.


    Patches of darkening skin does sound like morphea, but time and tests will tell.


    Kidney test results are worrying.  Could you tell us which values were low?  I do remember worrying about mine but found out later that it was not such a concern.


    My lung tests and echos have so far been normal so I'm encouraged by these.


    It's too early to tell whether it is diffuse, but even if it is, many forum members have lived for 20 years or more with the correct treatment.


    Good luck and I hope it turns out for the best.

  10. Hi KeroYosh,
    Firstly, stop worrying as that only makes things worse.
    Get as much activity as you can to help you sleep.
    Speak to a Scleroderma expert rather than any old rheumatologist.
    Progression is slow in some and quicker in others, very difficult to predict.
    Make sure you get heart, kidney and lung checks to reassure you that progression is not occurring and to ensure any progression is treated quickly.
    Stick around these forums, you will find many with far worse symptoms than ours and learn to cope with them and find their own ways to cope with disabilities.
    Finally, enjoy life as much as you can. This is a progressive disease with symptoms that can wax and wane. Make a bucket list whilst you still can. Progression may be a lot slower and not so bad as you think.
    Good luck

  11. An ANA blood test would be a pretty good clue that it may be scleroderma, but your symptoms may equally related to something else. Alopecia is quite common - I know two women who have it. Of course, when men go bald, it's just accepted as normal. How about your eyebrows?


    Worrying about it will just make matters worse, so get a blood test done asap.


    Raynaud's is usually the first sign of scleroderma, though not always, along with swallowing and reflux problems.


    Hope you soon start to feel better and find that you don't have sclero.

  12. It is very difficult to say as the disease seems to affect everyone differently and progress more slowly or quickly in each of us.


    It is a progressive and currently incurable disease meaning it is likely to worsen over time.


    Fortunately, there are a number of treatments that can help to allieviate many of the symptoms and this is one of the best sites to investigate the options.


    I hope that with the correct treatment you will soon be fit enough to return to your previous job, if not, perhaps consider changing jobs or working part time. If getting out of the house is a problem, perhaps consider whether there are any jobs where you can work from home.


    Good luck and best wishes.

  • Create New...