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Posts posted by dimarzio

  1. 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.

  2. 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.

  3. 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.

  4. 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

  5. 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.



  6. 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.


  7. 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

  8. 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.

  9. 15 hours ago, quiltfairy said:

    Thank you on the good day.

    I made it 64 years today.


    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).

  10. 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.

  11. 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.

  12. 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.

  13. 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,


  14. On 12/18/2018 at 7:11 PM, Chris1 said:

    Thanks for the response. Yesterday I did actually book an appointment with one of the specialists listed on your link, so am very happy to have found that info here. Unfortunately his first available appointment isn't until March, so that wait will be unbearable. 


    It's so difficult to find information on this specific form of the disease, so I've been hoping to find a way to connect with people that have it to know what their initial signs and symptoms were, since pictures I've seen online typically are late stage.


    Also I've been hard pressed to find anything else it might be. 


    Additionally, I've had a positive ANA on past blood tests and have horrible chronic GERD, which has gotten so bad that I've been diagnosed with Barrett's Esophagus. I've also long had Raynaud's. Not sure if there's a potential link between them all or not. 

    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).



  15. 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

  16. 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.

  17. 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.

  18. 18 hours ago, Cmfc0523 said:

    Hello all! I’m hoping for input on some confounding pain.


    I’m about three months into this journey, and so far my chief complaint has been some joint pain. Most is in the typical places like hands feet and upper back, but I also have this crazy, random pain in my upper chest. I should note that I had both an Echo and PFT 3 weeks ago and both were great. My doctors don’t seem to think it’s significant, but it is irritating and a bit painful at times, not to mention a little unsettling since it is my chest. It seems to come and go like my back, with no real trigger, except it does seem to get a little worse with activity, as the day wears on or even after a lot of talking. Exercise or heavy breathing does not make it worse.  


    Has anyone experienced something like this? Could it be something akin to muscle and joint pain?  Is there something more serious that I should be asking my doctor about? I’m just not sure where to go with this one. I did start Plaquenil recently, which I understand could be helpful but will take awhile to feel benefits. Any thoughts or personal experience is greatly appreciated, because I’m stumped!




    I recommend lots of exercise and heavy breathing then Cathy. :wink: 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.

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