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Posts posted by dimarzio

  1. Hi, I've had that feeling of wanting to yawn since I was 9 years old (I'm now 60 and it hasn't killed me yet). A feeling like I'm breathing, yet it's not having any effect.  I've been told over the years that it's anxiety or my imagination, even though I have not been anxious at all.  In fact the only time I have ever been anxious or depressed is during an 18 month period when I was unnecessarily put on anti anxiety medication.


    My recent lung function tests and echoes have been fine, so it seems like my Scleroderma is limited.  I do however have aches in my back, hips, shoulders and legs.  I surmise that most of this results from stiffening of the ligaments since my muscles appear fine.  I do get a lot of cramping though that is very painful and extremely distressing.


    When first diagnosed, a lot of my problems did stem from a fear of progression together with the side effects of medication, which seemed to make all of the aches and pains even worse.


    Since losing a few kilos and increasing my levels of exercise and physical fitness, things have improved quite a lot. Actually exercising the areas where pain is felt is quite helpful and even some physio may be of benefit.


    My reflux cough has benefited from taking a proton pump inhibitor, together with avoiding spicy food.  I find that smoking and drinking alcohol don't help me much here though.


    Rather than getting anxious, as I did, I found it better to fight this disease.  I know it will get me in the end, but I have strived to become as physically active as I can and enjoy life as much as possible for as long as I can.


    A strong will and a positive mental attitude can and will help considerably. Instead of worrying, try and channel that energy into fighting and making the most of what you have.


    I wish you the very best in however you chose to deal with it.





  2. We really need to know a little about the symptoms and tests used in the diagnosis to be able to help you here.  If you could provide a little more information, then one of us may be able to offer a few words of wisdom.  What is making your poor little girl feel so unwell at the moment?


    Whilst scleroderma has no cure, a lot can be done to alleviate many of its symptoms.

  3. Whilst I have no heart or lung symptoms, I have a periodic echocardiogram and lung function tests.  This is normal practice where there is a diagnosis of Scleroderma.


    I too have been perplexed by different approaches taken by the rheumatologist, at times seeming negative and at others, more positive.


    General aches and pains are not uncommon, typically in the hips and lowerback, but also around other joints and in the neck. Exercise and physio can help a great deal.

  4. Live everyday as if it were your last. That's what I'm doing.  I will fight this disease for as long as I can.  The thyroid issue is pretty easy to fix. The kidney problems need more detail to be able to fix and I'm not sure what to say about the small vessel issue other than that a blood thinning drug might be able to help.


    Hope it all turns out well for you, but keep on fighting.



  5. Hi Brenda, I am sorry that you have been diagnosed with Limited Scleroderma.


    Yes, your digestive problems could be caused by the disease, but there could be other causes too, e.g side affects of many commonly prescribed drugs or simply that our digestive systems can find it more difficult to tolerate certain foods as we get older.


    As far as collogen is concerned, I would be inclined to leave it well alone if possible since the disease causes an over production of the stuff in itself.


    Hope this was helpful.



  6. Clearly, any immunosuppressant is going to suppress the activity of the immune system, which to me would explain why the antibody count is lower.  


    I would therefore expect the numbers to go up again if you stopped taking the immunosuppressant. Plaquenil is not a cure, but it will presumably slow things down.

  7. Hi Deanne, just a thought about the problems you have raised.


    Firstly, could the problem be caused by the drugs you are taking for any other issues or symptoms; secondly, perhaps anti spasm medication could help with both the flatulence and fetal incontinence? Otherwise, seek medical advice.


    Hope this helps.

  8. Hi Deanne, I can't speak for cider vinegar, but I have been taking half a teaspoon full of bicarbonate of soda each day for a few weeks having found out that using this to reduce the PH level of the body can help with inflamation which may be associated with autoimmune diseases.  I have also found that for me, this can help with acid reflux as well.


    It is cheap enough, so no harm in giving it a try.  I would warn against taking too much though.  I just dissolve half a teaspoon full in a glass of water with my evening meal.


    Taking too much might, I guess, give rise to potential malabsorption issues.

  9. I know three people that take it, one for a psoriasis, one for rheumatoid arthritis and one for lupus. None of them have mentioned any significant side effects or concerns.  I understand that it is also useful for certain types of cancer.

    Methotrexate is a very common first line drug for autoimmune disorders.

  10. I asked my rheumatologist the same question. He said that in his 30 years of experience he had found very few who progressed from limited scleroderma to diffuse scleroderma, so that gives us a little more hope.


    I hope that the disease doesn't cause you too many problems and that you can continue to live a full and active life.

  11. The fact that we are all too podgy probably has something to do with it ,but I think there is more to it than that.  Processed foods and chemicals maybe.


    I've managed to shed half a stone so far in a quest to get my glucose levels & BMI down.  Will have to wait for the next Hba1c (hemoglobin) test to know.


    Not sure how much salad I can eat though before I start twitching like a rabbit.:wink:

  12. When it gets cold, I get frostbite in my hands and feet and when it gets hot, I overheat.  I haven't tried a sauna for about 40 years, but this thread has reminded me that I ought to give it a go.


    Raynaud's seems more about temperature changes than just cold alone.  I can get Raynaud's attacks just from a cloud crossing in front of the sun or a thermal draught on a hot day.

  13. The only thing I can say to all of you is try to stay positive and make the most out of what time you have left, however long you think that may be.


    Of course, we all have hopes and fears and for most of us, it is the fear of the speed of progression.  That's one of my biggest worries, but however fast or slow it may be, I am trying to keep as fit as I can, constantly pushing myself against the odds and taking the time to rest up when I need to.


    One of my biggest problems is that nobody I know seems to think that there is anything seriously wrong with me and has no idea of the constant pain I am hiding.

  14. 17 hours ago, Joelf said:

    Hi Quiltfairy,


    My worst fear is that I'll die before I've got my money's worth from my pensions (having paid in for them all my life!) :wink: :lol:


    Kind regards,

    Haha, I can sympathise with that. I have put a lot of money into pensions over the years, but if I do go early, then my wife will hopefully benefit from the widows pension for many more years.

  15. This could be many things Jen and of course you should obtain medical advice as quickly as possible along with any relevant tests.  However, what you are describing brings something called 'coup de sabre' to mind.  You may wish to look this up for further information.


    Whatever it turns out to be, I wish you good luck with your diagnosis and treatment.

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