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Everything posted by dimarzio

  1. Hi PleaseHelpMe, Firstly, welcome to the forum, which I hope you find helpful, along with the website. I'm sorry you are feeling unwell again, though pleased to hear that at least your bloods have returned to normal (which seems a bit weird to me too). Something interesting I picked up from your post was that you saw an ENT specialist because your eardrums blew out. I ask because I've been getting a lot of pressure behind my eardrums for years and my general practitioner prescribed Beconase, which helps immensely, but she was a little concerned about the length of time I have been using it. I wonder if you could tell me something about what caused your ear problem and how it was treated. I didn't ever relate my ears to SSc, but put it down to allergies due to an almost permanent state of having a runny nose and/or or blocked sinuses, though I wonder whether these may also be part of the autoimmune reactions. Thanks, Dimarzio
  2. Microplastics contain carcinogens and other toxins. Not sure what planet WHO are on with this one.
  3. Hi Ronald. I had a premolar out 10 days ago. Very painful and swollen for a week and still sore if I accidentally bite on it. No infection though and I'm sure it will be OK in a few more days. I do get the feeling that we Sclero sufferers do tend to heal more slowly though, as I've found with a few cuts and insect bites too. Painkillers are notorious for causing bowel problems. I took a fair amount of pain medication and ibuprofen before and after the extraction and needed quite a few laxatives to get things going again. A well-known side effect of a number of antibiotics is is diarrhoea, so maybe one can cancel the other out.
  4. 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).
  5. 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.
  6. Healthy maybe, but whilst I enjoy both in moderation, neither are so good for my GERD.
  7. 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.
  8. 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.
  9. I guess sucking your thumb might have a similar affect on salivation Margaret, though controlled breathing does have a few other benefits. Dimarzio
  10. 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.
  11. 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
  12. 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
  13. 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.
  14. 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
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. Treatment is mainly symptom led, so we would need to know what these are before any of us are able to make any meaningful comment. I do hope that your symptoms are not too bad though.
  20. Had my jab 3 weeks ago Jo. I booked in using the over 65 process and they said that because I was under 65, they had to give me a different one. I have been having flu jabs since 2010 or 2011 and have never got the flu. However, it was around 2010/11 I first started noticing what turned out to be circulation problems and Scleroderma (diagnosed 2015). It makes you wonder doesn't it?
  21. I too had really bad constipation and bloating. I thought it was related to my scleroderma, bur it turned out to be the effects of certain drugs I had been prescribed. When I stopped taking them, my whole digestive system quickly returned to normal.
  22. 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.
  23. Having recently been diagnosed, I would hope that your doctor would arrange for an examination of your upper digestive tract along with a heart echocardiogram, kidney function tests and lung function tests as a minimum. Any other tests may be symptom led.
  24. 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.
  25. Never could understand why people would want to deface their own bodies with these things. Better to go for the temporary ones if you seriously feel the need. A friend of mine is making a fortune removing them with a laser.
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