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Everything posted by dimarzio

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. Very interesting research Choclit. I might well give this to my Rheumatologist.
  7. 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.
  8. 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.
  9. 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.
  10. Ulcer that has erupted on hand.
  11. 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.
  12. Thanks Jo, I will have a look.
  13. My gut feeling is that it is linked to Raynauds as I can't think of anything else that could cause it. No doubt others, far more experienced in this field will chime in with some opinions and logic.
  14. I was wanting to post a photoraph of a strange skin manifestation for discussion but I can't seem to find a facility on the forum. I can put it into dropbox and post a link I suppose, but most forums allow you to upload a photo. Comments?
  15. My wife simply refuses to read anything on the subject because the rheumatologist told her that I had the mild version, so she believes that mild version means virtually symptomless. My son and daughter have done some research, but even they can't convince her that it is nothing more than a minor inconvenience. Some days I am able to do more than others, but I get fed up with everyone saying "why can't you do this?" or "why can't you do that?" It's as if they go deaf when I answer that I have Scleroderma. Because nobody has ever heard of it, it can't be relevant. Now a friend has cancer and another recently had a heart attack. Both are now recovering and should go on to lead fairly normal lives. However, people don't understand that Scleroderma is horrible, you can't have an operation to fix it, you can't take a pill to make it go away and it is progressive. Someone told me the other day that it was only a skin problem when actually I don't have any skin symptoms at all at the moment. It gets so frustrating and depressing at times, but I am fighting it as much as I can.
  16. How much Pregabalin do you take Amanda? I take 150 mg 3 times a day (total 450 mg). I too was wondering how I might fare on a lower dose.
  17. Oh yes, and Ive always had very sensitive skin too. Anything containing wool is itchy to me.
  18. I read that the heredity factor was 1%, but I'm sure Jo's figures are more accurate. The only symptoms I had earlier in life were heat intolerance, occasional strange cramps in odd places and later on, aching ligaments and tendons resulting in stiffness and discomfort. Not even sure whether these were related.
  19. Thanks for your kind thoughts everyone. I'm afraid that my wife is simply burying her head in the sand, a bit of a family trait that has reared its head in respect of 3 other family members who have been seriously ill and died over the years. It's very much a case of "don't know and don't want to know" mentality. Choclit, your comments on longlevity are encouraging, though I am concerned with the increasind disability aspect. People can't understand that although I can still do a number of things, the pain associated with doing them can often be agonising, though I do not make to much of a fuss and really have to go through considerable pain to even walk, mow the lawn, wash the car, assemble flat pack furniture, etc. Amanda - I will have a look at your blog later as it sounds like it will be an interesting read. Charlie, these forums have been invaluable to me as a place to share our problems amid the common issues that many of us share and understand. Judy, I am so sorry about your husband but glad that your legs feel better. Do you have any ideas as to what made this occur as it is clear to me that my leg problems are vascular, and I can't see how that could improve, though I do live in hope. My dear wife, although she means well, still denies that I have Scleroderma, even though all the tests I have had are positive and she even demanded a repeat blood test which showed the same results! She believes that I have diabetes, thyroid problems, adrenal insufficiency, gluten intolerance, imagination of symptoms, etc. even though all of the tests have proved negative. If I take certain prescribed drugs, it's the drugs that are making me ill and if I don't take them, it is not taking them that is making me ill. She honestly does care, but believes that my symptoms are all imaginary. Doctors seem to be awful with this illness, telling me that I'm wasting their time and my symptoms are all mental. Not one of them has even apologised for getting it so wrong and plying me with a terrible range of mental health drugs which made the problems even worse until I refused to take any more of them. I remember one general practitioner telling me to get out of her surgery and saying that I had had all the blood tests and there was nothing wrong with me - that was about 6 weeks before someone actually suggested the ANA test which proved the Scleroderma and I am so grateful that she did this test, but unfortunately she has now left the surgery, so I won't be able to thank her personally unless I see her around. The Rheumotologist has confirmed the Scleroderma along with Raynauds and esophageal dysmotility.
  20. I think problems like Eczema and Psoriasis are quite common in Scleroderma patients. However whether they are linked to the disease or not, I don't know. I suppose, whether they are or are not, is of little consequence as either way both need appropriate treatment. I don't know whether something like Methotrexate would be of any help, but I do know someone who found it improved Psoriasis a lot.
  21. Margaret, I've read a lot of your posts with great interest as you are able to look at it from outside. You say that Gareth was diagnosed at 18, but looking back, from what age were you aware of symptoms? I ask because I was diagnosed at 56, but thinking back, I've been aware of symproms for my entire life which had been put down to other things or just ignored.
  22. Also, throughout life, even from the age of 5 or 6 which is about as far back as I can remember, I've been unable to tolerate heat at all. Yet no problems with cold until the Raynauds came about 2 years ago (though, it had been present mildly for 3 or 4 years before that) I just put it down to getting older until it got really bad and that's how and when I finally had the diagnosis. Raynaud's affects me really badly now, affecting my entire legs, eyes, face, ears and nose. Hands are a bit better than they were a year ago though, but I'm not altogether sure why. The disease is bad enough, but everyone believing that Scleroderma is incidental and of little consequence makes it so much harder to bear.
  23. I had a bad dose of the flu at 8 years old followed by what was diagnosed as a secondary chest infection, but I knew even at that age something else was wrong. My breathing felt strange, like I was breathing, yet I couldn't feel the breaths going in. This feeling has occured mamy times since and is difficult to describe, but doctors have said that it was all in my mind. I've had a few episodes where my legs felt strange, all floppy and like they were about to explode. About 20 years ago, I spoke to general practitioner about mobility problems with my back and he thought it was ankylosing spondylitis. For many years, In fact since childhood, I've had my eyes go funny, but I was told I was imagining it and I now know is caused by a lack of bloodflow. So I've thought for most of my life that I was imagining these problems, only now to think that the disease has been with me mildly since an early age or even birth. No skin symptoms, so everyone says I look fine. Thinking about it, my mother had similar symptoms for many years before she died, but never had an ANA test, so was diagnosed with other things.
  24. P.s where in the world are you? Do you have access to good medical care and facilities?
  25. Hi Diana, so sorry that you have been diagnosed so young. I was not diagnosed until I was 56 years old, but thinking back, symptoms had been present since I was 5 or 6 years old. I was just told that they were imagined as no tests were ever done to prove or disprove. For some, it is a terrible disease, but others can lead fairly normal lives for many years. The best advice I can give is to lead a healthy lifestyle, take as much exercise as you can to keep your body supple and avoid nicotine, alcohol and caffeine. I hope that you go on to lead a decent life. Don't try to fight the fatigue like I did. Accept that it is a part and parcel of this illness and take rest whenever you need to. Make sure that your family and friends understand what this illness is and hopefully, they will be more supportive. Avoid psychiatrists and drugs for mental health as they cause more problems than they solve (one day, you may remember that I said this).
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