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Posts posted by dimarzio

  1. 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.

  2. 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.

  3. 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.

  4. I was getting flu like symptoms for several years before I was diagnosed and put them down to allergies.  I still have flu like aches and pains most of the time and exercise seems to be the best way to relieve them.  I also get a runny nose and itchy and running eyes, particularly first thing in the morning.  I put most of this down to my immune system working overtime and simply my body responding to this as it would if it were fighting the real flu.

  5. Hi Ana.  I'm sorry that you have been suffering from so many problems, but Jo is right that your symptoms could relate to a number of  causes.


    I just wanted to comment on your strange cough and say that I have come across a number of people who describe a strange cough as side effect of taking calcium channel inhibitors (e.g. Ramipril). Just wondering if you take these and if so, did the onset of the cough coincide with when you started taking them?

  6. The problem is that so many issues and symptoms keep cropping up that nobody believes that you can be affected in so many different ways.


    I was told by my general practitioner that there was nothing wrong with me because I had had all the tests and to go away and stop wasting everyone's time. That was a month or two before the SSc diagnosis.


    Every time I said I was having problems, they just added higher and higher doses of anti depressants until I could barely stand up, let alone walk. I've been a lot better since I weaned myself off them.


  7. I had never heard of Scleroderma before I was diagnosed with it either.  The problem is that no one else has heard of it either and because they've never heard of it they don't think it's that serious. The doctors are just as bad; only one has been honest enough to admit that he knows nothing about it, the rest try to blag it until I start asking questions they can't answer.  


    I do believe that none of the GPs in my local surgery think that it's serious because if it's something they have never come across before, it can't be bad.

  8. Glad you got that sorted.


    I do get the feeling that my headaches may be down to blood vessel constriction.


    Might also be related to ocular bloodflow causing eye strain.


    Just a feeling based on experience.

  9. Hi Yoshi.  Sorry to hear that you are having problems that may be SSc related.


    It's a bit of a 'how long is a piece of string' question as the disease affects so many people so differently over largely differing timescales.


    Apparently there is only a very small level of heredity, but I have read enough on this forum to question this.


    I have Limited Ssc and my rheumatologist  told me that in his experience, very few with the limited variant ever go on to get full blown Scleroderma.


    Life expectancy with Limited SSc is close to normal, but for diffuse patients, the outcome is not so great.


    There is a section on this site somewhere that covers life expectancy.


    I'm finding that a positive outlook is very beneficial.  Accepting that I have this illness but pushing myself as hard as I can and trying to achieve as much as I can on my bucket list.  I may have 2 more years or I may have 22.  I don't know, but that is the case for everyone really.  


    Things can change.  2 years ago, I couldn't drive, could barely walk, couldn't go outdoors in the winter, was planning my funeral and looking at assisted suicide, now I am learning to fly paramotors, largely because I was given medication which has kept most of my physical symptoms under control along with a lot of effort and willpower.


    I hope things turn out well for you and that you continue to share your experiences on the forum.

  10. I've learned to live with the tiredness. I don't try to fight it so much any more.  If I need a lie down, I have a lie down.


    Sometimes I just need another coffee to keep me going for an hour or two.  Best not to fight it too much though. Take a break, take a nap if you can and you will feel much better for it.

  11. I get hot and cold due to circulation problems.  It takes me a very long time to adjust to moving from a warm room to a cooler room, from being indoors to outdoors or from shade to sunshine.


    I also feel feverish at times.  Cold one minute to burning the next.  It feels like the flu, but I put it down to an over active immune system.


    Certain drugs can also have this effect.


    There is a lot to consider when you have Scleroderma.


  12. Hi Tracy, I've read through your post a couple of times and have to say that your symptoms are practically the same as mine.  I too have no noteworthy skin symptoms and my fingers only go stiff when they are cold.


    My rheumatologist seems only concerned about skin and doesn't seem to be concerned about any of the other symptoms. He seems to suggest that scleroderma is not that bad if the skin is OK.


    I would say that my skin is now very sensitive and gets itchy along with burning sensations at times, but because he can't see it, it apparently is in my imagination.



  13. Anyone with these symptoms should consider having an ANA antibody blood test as a matter of course.  Not 100% proof positive, but is a test you need to see if it may be Scleroderma.


    Do be aware that the majority of Scleroderma diagnosis are of the limited version, so it's not necessarily doom and gloom.


    In your case, it may just be primary Raynaud's, but further tests and examination are required to get a clearer picture and a diagnosis.


    Do you have any other symptoms?

  14. I find that the more exercise I have, the better my poor circulation becomes and all of the achy limbs improve a little for a while.  The benefits don't always last too long though.

    It is possible, in fact quite likely, that if you are taking anything to counter depression, it can slow down your gastro tract and cause constipation, I thought Sclero was causing mine before I stopped taking them and bowels came back to normal.  Exercise and plenty of green vegetables also helps. Cereals do not help me, but many find that they do.

    I take Vitamin D in the hope that it is helping, but most of us are low in this unless we live in sunny climates.

    One thing I would say is that symptoms do wax and wane from time to time.

    I do hope you begin to feel better and that your medics can find something to help. 

  15. Pleased to see that you found this article worth posting Jo.  Research has shown that most people living in northern climates, e.g. Canada, UK and Scandinavia are low on vitamin D.  I've been supplementing with it for some time now.


    A lot of doctors believe everyone should supplement here in the UK.


    As regards other vitamins, most are a bit of a waste of money if you eat a balanced diet.

  16. I had to have a tube in my oesophagus for 48 hours connected to a monitor.  I went back to the hospital who subsequently lost the readout, so I had to suffer it all over again a few weeks later after which the original trace mysteriously appeared.

  17. In the southern UK, temperatures are in the 20s celcius in the summer and can range from minus ten to plus ten in the winter.


    I find that I can gradually get used to the cooler temperatures, but sudden drops really affect my Raynaud's.  Even in the summer, it may be 20 degrees, but if the temperature drops because of a passing cloud, it usually sets mine off.


    Wind can be another factor in my experience, but the worst is walking around supermarkets.


    I know that smoking is not helping, but very difficult to give up a 40 year ingrained habit.


    I also get what feels like Raynaud's in my eyes and facial skin, but my general practitioner thinks I'm imagining it.


    I also have as many problems with the heat as the cold. I believe it is due to the fact that our blood vessels cannot properly dilate and contract in either situation.

  18. The only thing I would add is that as there seems to be no cure for autoimmune diseases yet, they can only treat the symptoms, so in some ways, it doesn’t seem to matter which variant you have, the treatment is likely to be the same.


    We can only hope for speedy progress in research.  It looks like some kind of stem cell treatment may be promising in the future.

  19. Interesting Jo as I believe Limited SSc can affect all parts of the unirary tract.  Particularly the urethra and the bladder along with the spincters.

    Interestingly, I have had fibrosis in the urethra dealt with surgically recently, but they say this is not connected to SSc, whereas, I believe that it probably is. I just don't know whether to trust these 'experts'.

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