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Everything posted by dimarzio

  1. Can I suggest this guy? Depending on where you live in Wales, Bristol may not be too far: https://www.nbt.nhs.uk/our-services/a-z-consultants/dr-harsha-gunawardena
  2. From what I know about PIP, it is quite difficult to qualify. However it's easier if you have the right handshake.
  3. GP recommended two squirts up each nostril morning and evening. That was enough to clear the problem in a week or two. I find just an evening dose is sufficient to keep the problem at bay, though if I miss two or three days it does return. I have no side effects whatsoever and know many people who take similar medications with no problems either.
  4. Hi Ronald, I would be very worried about bleach coming into contact with my skin. If the ulcers are open and not healing, I would give Manuka honey a try. It has great healing properties and can help clear infections. I recommended this to a relative with ulcers that would not heal for a couple of years and she said I was talking rubbish and suggesting quack remedies until a specialist on ulcers at the health centre gave her exactly the same advice. Not all Manuka honey is pure, some is mixed with other honeys and sugars. Be sure to get the pure stuff if you do try it.
  5. I had constant pressure from my sinuses through to my eardrums. I've been prescribed Beconase nasal spray, which I've used once a day for about 4 years now. It solves the problem, though it returns if I forget to squirt for 2 or 3 days. My general practitioner was considering whether to investigate further, but when I said I thought it was probably an imuno response, she decided not to bother, having checked that Beconase was okay for long term use (didn't question my comments, agree or disagree though). There are a few different types of this treatment if the one I am using ever becomes ineffective.
  6. Hi George. I was formally diagnosed in Sept/Oct 2015 but had slight GERD for a few years beforehand. The Raynaud's has been there to some extent since around 2010/11, though I didn't recognise it as such and sought no treatment. My skin has been sensitive all of my life and I've never felt comfortable wearing anything other than cotton next to my skin (wool is extremely uncomfortable). The feeling that there is no padding between my skin and bones goes back to around 2010/11 as well, though I think it may well be a lot longer to a lesser degree. I have not been provided with a specific pattern other than the results of my ANA test stating that they "show a strong association with Limited Systemic Sclerosis". The only other symptoms (which all the doctors choose to ignore, having raised it a dozen or more times) are what feels like Raynaud's in my eyes and that I tend to feel faint, unsteady on my feet and easily lose my balance in colder weather. Additionally, I get a lot of cramp in my legs, back, shoulders, abdomen and chest. Doctors continue to ignore these as well. Finally, I have been doing a full series of stretching exercises for about 2 years to improve tightness of the ligaments in my legs, pelvis, groin, back, chest, neck and shoulders. These have considerably improved my flexibility and reduced the (apparently imaginary) pain I was getting from physical activities). I hope this is of help, but my main concern is that none of my doctors take the problems seriously, so I simply make the best of what I have and do as much as I can do for as long as I remain able to. Regards, Dimarzio
  7. George, I have GERD and Raynauds, which you also appear to have, but the comment you made about feeling like you have no underskin tissues and that everything you touch feels like you are touching it with bone is exactly the same as I feel and I have formally being diagnosed with limited systemic scleroderma. From what you say, Scleroderma may well be a possibility, but equally may be dozens of other things too or even a collection of unrelated issues. Sometimes it is best to just deal with the symptoms, whatever the cause is (unless it is clearly identified). As there is no cure fore Scleroderma, that's how it is treated too. I do hope your symptoms improve or that you learn to live with them better. That being said, please try to be positive and try to concentrate on leading life to the full as much as you can. Please don't give up. Even if the worst is confirmed, you can still live a ling and fulfilling life. Dimarzio
  8. That's an interesting study. For me, Scleroderma makes the cold winter months quite a miserable time, but the feeling of wellbeing when the weather warms up is immense. I guess many of us probably feel the same, but of course we are a bit different to the norm. I know that if it gets too warm, that can be uncomfortable, but not as bad as seeing your hands and feet go blue in the cold.
  9. Sounds like a very interesting approach. Will be fantastic news if the trial is successful.
  10. When I was first diagnosed, I had a lot of problems with reflux, difficulty swallowing and food getting stuck in my throat. The swallowing problems actually turned out to be related to the drugs I had been prescribed for my imaginary problems and went away when they realised that the problems weren't imaginary after all and stopped the drugs that they gave me for them. Omeprazole is really helpful with the reflux, though reflux can be exhaberated by caffine, alcohol, nicotine and spicey foods. From digestive perspective, I've also noticed that physical exercise can be beneficial to the overall function of the entire digestive tract.
  11. Hi Doreen, just try to keep your hands warm. I wear thermal lined leather gloves when I go out in the cold, but keeping your hands in your pockets can work well too. Just a minute or two in the cold and it can take ages for my fingers to warm back up. I also find that if I keep the rest of my body warm it seems to help my hands too. In winter I wear a a pair of thermal socks and a sports snood as well as a warm hat. Sometimes I will make an excuse to go to the loo just so as I can dip my hands in a bowl of hot water and those warm air hand driers can be a blessing on a cold day (I even use them to warm my gloves up before putting them back on.) You can also buy battery heated gloves although I haven't tried those yet.
  12. Hi Ronald, When I was first diagnosed, the aches, pains and stiffness were so bad, I was taking little exercise and having sleep problems. When I started to fight back, increase my fitness and force myself to exercise more, my sleep improved considerably. It was a painful process, but one I am glad I put myself through. I normally sleep well, so long as I have been for a walk or done some DIY around the house or for one of my kids. If not, a large glass of red before going to bed usually does the trick ☺️ Increased physical activity may also improve your lung function, though you may, like me need to build up gradually. A sleep specialist told me that more human interaction also tires the mind and helps you to sleep. If you are not getting much of this it might be worthwhile trying to spend a bit more time talking to people.
  13. Preclinical work in mice given EHP-101 revealed anti-inflammatory and anti-fibrotic (scarring) responses, as well as reduced skin thickness and recovery of damaged blood vessels.
  14. Hi Omer Yes it is possible to test positive and have no symptoms or have symptoms appear many years later. If you have no symptoms though, I would have to ask why you were given the blood tests. My first ANA test was done when I went to my general practitioner with Raynauds, although I had been having related problems for nearly a year before they finally realised that my symptoms were not imaginary and that I was not insane. I hope you continue to remain sympom free though. Best wishes, Dimarzio
  15. Hi Ashwin, Some of your Mum's symptoms don't sound like Crest at all. The swallowing and coldness, yes. Either there is something else at play (not yet diagnosed) or maybe reactions to medication being taken. Unfortunately, because the professionals do not investigate thoroughly or simply can't make a correct diagnosis, they put it down to anxiety or imagination. In my case, the mental health tablets they put me on caused 70% of my symptoms until I refused to take them any more. Whatever it is, I do hope she is able to find some relief from it one way or another. Dimarzio.
  16. Hi Daughter Ang, I'm sorry, your Mum has been having problems and would echo Jo's post on the subject. However, I would like to add (from personal experience), that plain water gives limited help to swallowing problems. I found salt water a little more helpful, but you can buy artificial saliva which is even better. A narrowed oesophagus can be stretched, though my lack of salivation resulted from mis prescribed antidepressants and stopped after I refused to take them any more. So I am wondering whether she is taking medication where a dry mouth is a side effect. Hope this is of help Dimarzio.
  17. 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
  18. Microplastics contain carcinogens and other toxins. Not sure what planet WHO are on with this one.
  19. 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.
  20. 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).
  21. 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.
  22. Healthy maybe, but whilst I enjoy both in moderation, neither are so good for my GERD.
  23. 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.
  24. 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.
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