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About dimarzio

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  1. Happy belated birthday Quiltfairy. Your post did make me wonder though how many sufferers are surviving until their 70's and 80's or even possibly 90's. Do we have any data relating to forum membership on this? I can't remember whether I gave my DOB when I joined or not. On that subject, it would be interesting if we could compile some demographics of our membership, e.g. sex, age range, location, etc. What information do we actually have? (Subject to GDPR compliance of course).
  2. I would say that the psych meds they put me on made me want to give up too. I binned the lot of them and my health improved quite quickly. A lot of my digestive problems were down to those meds. I still take a low dose of PPIs which have resolved most of my reflux and swallowing problems and a calcium channel inhibitor which is supposed to help the Raynauds (though I can't see that it's making a jot of difference). Once the psych meds were gone, I began to feel more positive and decided to fight my mobility problems, gradually increasing my exercise regime from a level where I could barely walk or climb stairs to a level where I am now able to walk several miles and am even beginning to run short distances. Do not despair. It is possible to fight this disease and many treatments are available, though sadly still a fair way off finding a cure. Keep your spirits up and give it a go.
  3. Healthy maybe, but whilst I enjoy both in moderation, neither are so good for my GERD.
  4. TBH, I would be more worried about a diagnosis of non-Hodgkin's lymphoma then I would a diagnosis of scleroderma (neither of which are very nice). When diagnosed, I initially gave up because the anti depression medication I was given for my 'imaginary illness' caused side effects which gave the impression that my limited scleroderma had defused quite quickly. Once I had ditched the anti depressives (which I clearly didn't need), I began to feel more positive and began to take more exercise and built myself back up again. From being barely able to walk 3 years ago, I now walk 3 or 4 km per day, have been tent camping twice, have enjoyed 3 foreign holidays, have been learning to fly paramotors and doing a fair amount of DIY all of which I thought I would never again be able to do at the time. It's been hard work and every day is painful, but I will make the most of life for as long as I can, no matter how much it hurts. I will fight this as long as I can and will not give up until I have to, whether that is in a year, 5 years or 20 years. Positivity and tenacity can go a long way. Don't dwell on the negatives and focus upon what youcan do rather than what you can't. Above all, look after youself well and have as much fun as you can. Best wishes, Dimarzio.
  5. Hopefully, you have the limited version, Olimpia which whist unpleasant normally does not have a great effect on life expectancy. Don't fret too much and wait to see what the Rheumatologist has to say. I tend to try not to worry too much about things I can't control and concentrate on those I can. Good luck and best wishes. Dimarzio.
  6. I guess sucking your thumb might have a similar affect on salivation Margaret, though controlled breathing does have a few other benefits. Dimarzio
  7. Hi Sunshine81. My Raynaud appeared in 2015 followed by a Ssc diagnosis and GERD issues in the same year. Neither seems to have got significantly worse so far, though both are quite unpleasant. I do have problems with stiffness along with joint pains that are gradually increasing in severity. The reason for the echo and PFTs yearly are to measure any decline in heart and lung function and the results will be measured and compared with previous years results. One of the things I know they measure is the width of the pulmonary artery, which tells them whether you may have pulmonary hypertension. Provided that the test results are OK, then I would try to stop worrying about it and carry on trying to enjoy life as much as you can. Nobody knows what the future holds, whether you have Ssc or not. In some it develops quickly and in others more slowly. I too was fixated on it, waiting for it to get worse, though did find that many of my problems arose from an initial misdiagnosis resulting in prescribing inappropriate medication and improved when I stopped taking it. Try to live as healthy a lifestyle as you can with plenty of exercise, think positively and make the most of the 10,20,30,40 or 50 years you may have left. I also meant to say that annual kidney function tests are a good idea, though assume that you are having these too. Best wishes and good luck for the future, Dimarzio.
  8. Hi Chris, From my knowledge and experience, I would indeed think that these issues are linked. I am however pleased that you have had a formal diagnosis and appropriate treatment. Many of us have waited a long time for that. I hope that you are receiving an appropriate treatment for Barrett's Oesophagus, e.g. a Proton Pump Inhibitor. That does need to be kept under strict control. I wish you all the best and hope that the Methotrexate helps. Please do keep in touch to let us know how things progress (or hopefully symptoms don't progress). Dimarzio
  9. Hi MomZ. Sexual disfunction can be a side effect of a number of medications and/or combinations. This might be a possibility in your Son's case, though could equally be arising from the illness itself of course. Good luck in getting the right diagnosis and treatment
  10. Symptoms could result from a multitude of things or just one issue. It could be Scleroderma, though my gut feeling is probably not, though there could be a number of possible other autoimmune issues. ANA autoimmune antibody blood test might yield clues, if this has not already been done.
  11. Hi again Phyllis, Limited Scleroderma is certainly an unpleasant thing to live with, but there are a lot of things that are much worse. My rheumatologist has told me that in his experience, limited scleroderma rarely results in the diffuse version and whether I believe him or whether that is true I don't know. What I would say is that I will deal with what I have and not worry about future symptoms until they occur. Keep strong and keep fighting. Don't let it get you down. We all have our crosses to bear and need to deal with them as effectively as we can. Enjoy today as much as you can and perhaps worry less about what tomorrow may bring. I wish you good luck and a long and happy life. Best wishes, Dimarzio
  12. For me, losing some weight (11kg) has helped and regular exercise have both improved my flexibility. I need a lot more warm clothing now than I used to including thermal gloves, socks and hat when I go out. The aches and pains are still there, but the more I fight them, the better I get. Having a positive mental attitude has taken me from deaths door to someone who has taken up an active sport. It's a struggle, but the alternative is more awful. Fighting is the only way. If you give up, like I did at first, it is a horrible existence. I don't have many skin issues yet and my cardiac and pulmonary functions are still OK. I do have a lot of pain and stiffness and awful Raynauds in my arms, legs and face though and circulation to my eyes is a problem with deteriorating vision. Keep positive though and enjoy life as much as you can as many people on this forum have lived with this for many, many years.
  13. It seems from what I read, that this is commonly a result of high blood pressure. What are your readings like? If this is the case, blood pressure medication and a healthy diet and lifestyle is helpful. Plenty of exercise and avoiding alcohol and tobacco products. Healthy living will help to prevent heart attacks and strokes, though this is the case for everybody really.
  14. I recommend lots of exercise and heavy breathing then Cathy. Seriously though, I get a lot of cramping in my chest, especially so in colder weather. I too am finding that plenty of aerobic exercise and stretching helps.
  15. I take beconase ( beclometasone dipropionate) for my sinus issues. They occurred long before my SSc was diagnosed, but I get the feeling that they may be related. My general practitioner originally diagnosed Rhinitis, hence the beconase prescription. It does help though, but most of my pain is in my ears. Apparently, the build up in the tubes from my nose to my inner ears is putting pressure on my eardrums. Several other brands of cortisoid nasal sprays may of course be equally effective.
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