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Everything posted by dimarzio

  1. Ultimately, oxygen but that's a bit of a last resort.
  2. Hi KeroYosh, Firstly, stop worrying as that only makes things worse. Get as much activity as you can to help you sleep. Speak to a Scleroderma expert rather than any old rheumatologist. Progression is slow in some and quicker in others, very difficult to predict. Make sure you get heart, kidney and lung checks to reassure you that progression is not occurring and to ensure any progression is treated quickly. Stick around these forums, you will find many with far worse symptoms than ours and learn to cope with them and find their own ways to cope with disabilities. Finally, enjoy life as much as you can. This is a progressive disease with symptoms that can wax and wane. Make a bucket list whilst you still can. Progression may be a lot slower and not so bad as you think. Good luck
  3. Not sure what the definition of moderate is though. But any exercise is better than none and the more you can get the better.
  4. An ANA blood test would be a pretty good clue that it may be scleroderma, but your symptoms may equally related to something else. Alopecia is quite common - I know two women who have it. Of course, when men go bald, it's just accepted as normal. How about your eyebrows? Worrying about it will just make matters worse, so get a blood test done asap. Raynaud's is usually the first sign of scleroderma, though not always, along with swallowing and reflux problems. Hope you soon start to feel better and find that you don't have sclero.
  5. It is very difficult to say as the disease seems to affect everyone differently and progress more slowly or quickly in each of us. It is a progressive and currently incurable disease meaning it is likely to worsen over time. Fortunately, there are a number of treatments that can help to allieviate many of the symptoms and this is one of the best sites to investigate the options. I hope that with the correct treatment you will soon be fit enough to return to your previous job, if not, perhaps consider changing jobs or working part time. If getting out of the house is a problem, perhaps consider whether there are any jobs where you can work from home. Good luck and best wishes.
  6. Undoubtedly true Jo, but I don't have any grandkids yet and can't go out walking dogs in the cold. Don't mind dog walking in the spring and summer though and my daughter has two boisterous dogs who can't get enough of it.
  7. I've not heard of TENS, Shelley. Would you mind posting some detail? Thanks. I have a friend who uses carbamazepine for peripheral pain and has so successfully for many years. If my Pregabalin stops working, I shall ask for this next.
  8. I kept pestering my general practitioner and all I was offered was increasing amounts of anti depressants to shut me up. I was even thrown out of the surgery for wasting their time and told "you've had all the tests and there is nothing wrong with you". That was about a month before I got a positive Scleroderma diagnosis.
  9. Hi Erick, I think one of your problems is that you are worrying a lot about your physical symptoms because you have not got an explanation for them or a diagnosis. People in general and doctors are to quick to conclude that if they can't come up with a diagnosis, then it must be all in your mind. Keep going back to the doctor until they give you a proper diagnosis or explanation even if this requires more tests. I do agree that your symptoms don't sound like Scleroderma and you also have a negative ANA test. However, something is clearly wrong and they need to get to the bottom of it. For now, try to stop worrying if you can. It may not be as bad as you think. Perhaps try to fill your time better and do something to help you to take your mind off it, but do keep pushing the doctors for an answer.
  10. I dont know anyone who admits to having IBS, but any gastro involvement could be linked to Scleroderma, though in most cases not so.
  11. Hi Ashley, do be aware that CREST and limited Systemic Sclerosis do not result in mortality too much different to the norm unlike diffuse scleroderma where survival beyond 10 years is something like 50%. Living a healthy lifestyle can improve your odds immensely. I was diagnosed at 56 years of age, but I believe that I may have had Scleroderma mildly since childhood and almost certainly since I was in my 30's, when mobility issues first reared their head.
  12. Spongyness sounds more like Rheumatoid Arthritis than Scleroderma. Is it possible that constipation is a side effect of medication you are taking? What are you taking? For me it was down to taking too high a dose of Proton Pump Inhibitor for reflux problem, but I'm OK with a lower dose. Whilst I also have swallowing difficulties, my meds give me a dry mouth and I don't salivate enough, which makes the swallowing problems worse. Because of the side effects, I've ditched a lot of my meds as the side effects were as bad as the issue they were trying to treat. Not saying you should do the same, but worth consideration. Electric currents can be a result of nerve damage, in this respect, I would want to rule out MS. Electric currents in the wrist and hands can arise from Carpel Tunnel Syndrome. Hope this is helpful and good luck with your diagnosis and treatment. I do hope that your rheumatologist is right and that you don't have Scleroderma.
  13. Worth getting an ANA (antinuclear antibody) test too. I also have had IBS for 30 years prior to Sclero diagnosis. Cadmium could be linked as it is a heavy metal along with the lead and mercury in dental amalgum
  14. Here are some statements made by my rheumatologist: What is systemic Sclerosis? It eats away at your connective tissue. How did I get it? Nobody knows, but if you fire enough bullets at it, one will hit the target. Does that mean I will die an agonising death? Well everyone has to die of something. How long do you think I have left? No idea as it affects everyone differently. Is it a terminal disease?. No, it is only Limited Systemic Sclerosis; it's not going to kill you. Should I see a Scleroderma specialist? No. I've been a Rheumatologist for 25 years, so I know what I'm talking about. In response to various questions I have raised based upon the research I have conducted. You shouldn't read the Scleroderma forums because they are completely irrelevant to you as you only have Limited Systemic Sclerosis, which is only a mild form of the disease and is unlikely to kill you. In my experience, very few people with the limited form of the disease go on to get the diffuse form. Would anyone like to comment on this?
  15. I think my ulcer was my immune system over reacting to the antibiotic, which is scleroderma related. It is healing now, 3 weeks after it began. It seems that with this disease, the body can over react to many things.
  16. I take pregabalin and it is very effective. Isn't Gabapentin a generic of Pregabalin? I have read that the generic is not so good, but I may be wrong, just saying what I understand. If I am correct then Pregabalin may be worth a try. FYI I take 150 mg 3 times per day and I think the max dose is something like 600 mg per day.
  17. P.S., all my problems seemed to start following a period of insomnia. I have found that increasing activity as much as I can to be helpful along with a program of sleep restriction. I take a low dose of amitriptyline nightly which also seems to help.
  18. I too have been denied any benefits, but I have no income and live on investment income alone. The reason I have been denied is apparently that I can put my own shoes and socks on just about, albeit just doing that causes great pain and muscle spasms. Liver involvement must be awful and I can only imagine how much you are suffering. I hope you get a new liver and are soon on the road to recovery.
  19. Hi everyone. Margaret, where is the power port located? I've come accross ulceration on the fingers, toes, hands and feet and leg ulceration seems quite common with circulation problems but nowhere else on the body to my knowledge. Difficult day for me today as I have been told "stop making a fuss, you are not an invalid" when I cramped trying to pick something up from the floor and again "just because you had a positive blood test doesn't mean that you've got it". It really is driving me to despair.
  20. Very interesting research Choclit. I might well give this to my Rheumatologist.
  21. Thanks Jo, some interesting info there. I was thinking about Manuka Honey, but most of the stuff on sale isn't pure enough. I will certainly bear in mind the one month rule of thumb.
  22. I wouldn't say he was unsympathetic Jo, he just didn't know what he was talking about. I prefer it if they admit to knowing nothing about scleroderma to the ones who say they do when they quite clearly don't. Not sure how to treat this one though, I've left it uncovered for a couple of weeks, but it keeps cracking. If I cover it, will that delay healing further? Should I use antiseptic creams? Just don't know how to tackle it.
  23. Nothing is anything to do with scleroderma apparently. This ulcer (photo here) appeared on my hand overnight and general practitioner put it down to a reaction to antibiotics. I asked him if it was related to scleroderma and he said no. I asked him if he knew what scleroderma was and he said no to that too. He then fiddled with his computer again for a few seconds and said it was nothing to do with scleroderma and that it should go away with an antihistamine. Whenever I see a general practitioner I always ask them if they know what scleroderma is and some honestly say no, whereas the older ones are clearly trying to bluff their way out of it when they say they do. Not sure what to do at times with this quality of healthcare.
  24. Ulcer that has erupted on hand.
  25. Aha, exposure to lead and mercury. The substance most of us have inserted in our teeth; better known as dental amalgam. I think we should have banned this years ago.