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Everything posted by dimarzio

  1. 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?
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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. Dimarzio.
  9. 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. Dimarzio
  10. Immunosuppressants can take some weeks before you have any effect, Regina. For how long have you been on them?
  11. Whatever else you do, I'm sure that regular exercise and clean living will help. I've certainly found that fighting Scleroderma is much better than giving in to it, though.
  12. I had a jelly belly/spare tire amounting to around 14 pounds. In the last few months, I have lost 15 pounds. Spare tyre is still there, belt size is the same and I now have thin arms, legs and shoulders.
  13. 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.
  14. I have limited scleroderma with no visible signs. The worst bits are the agonising aches and pains around the joints and terrible cramps.
  15. 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.
  16. 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.
  17. I also tried a gluten free diet with no noticable benefits. I do find wholemeal bread better than white though. I am currently on a low carb diet which means limiting bread consumption and am feeling somewhat better for this. As with anything, your own mileage may vary.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. I recognised this a while ago and eat a banana each day for potassium and take a magnesium supplement to counteract the proton pump inhibitors. Most of us need vitamin D, so I take that during the winter months too. I was wondering about cod liver oil, but there is a limit to how much of this stuff you can take without going OTT.
  23. Very interesting article Jo. 2 1/2 years after being dignosed with SSc, I have now been diagnosed full blown diabetic. As if the myriad of SSc symptoms is not enough, another set of problems to contend with!
  24. 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.
  25. 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.
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