Jump to content
Sclero Forums

dimarzio

Members
 View Profile  See their activity

  • Content Count

    271

  • Joined

  • Last visited

Posts posted by dimarzio

  1. Posted

    Hi Carol.  I've struggled with Raynauds for a few years and found knitted gloves of little help.  You can get rechargeable battery oorated heated gloves which are very good, though I use thermal lined leather gloves which I got from a supermarket.

     

    For me, the key is to not let my hands get cold before putting the gloves on in winter.  As soon as I go outdoors, the gloves go on or my hands go into my pockets.

     

    Another thing I've found is that it is important to keep your whole body warm.  I found that if I can keep my head and neck warm by wearing a thermal hat and snood, it seems to help to keep my hands warm too.

     

    I also find that I need to keep my hands dry.  The leather gloves help too if it is raining.

     

    Hope this is of some help.

     

    Dimarzio

  2. Posted

    20 hours ago, quiltfairy said:

    I use a lotion from body works; it was the best but expensive. After I get this tube done I am going to ask if my pharmacy salve works; some have told me I could use coconut oil.The stuff my doctor wanted me to use is too much money and I have used everything.

     

    The other thing my doctor said, always use rubber gloves or such when cleaning with chemicals.

     

    Good luck.

     

    Thanks Quiltfairy.  That all makes sense.  I will endeavour to use more handcream.

  3. Posted

    En coup de sabre is springing to mind when you all talk about dents in your foreheads.  It may be worth at least giving some consideration to this.

     

    I would say that it seems unlikely that such dents are stress related and prescribing diazipam for them is flabbergasting.

  6. Posted

    Nothing formal like yoga, George.  Daily stretching of calves, thighs, hips, back, shoulders, neck, arms and legs.  Fairly standard exercises I learned from amateur soccer training many years ago.

     

    Most of these can be found on physio websites on the web.

     

    They were hard at first as I could barely move or walk, but over time have become easier.  I stretch til the muscle or ligament hurt, then hold for 10 seconds.  The more a body part aches, the harder I work on it.

  7. Posted

    My hands are very sensitive.  Just a slight tap can make me yell and even screwing up a piece of paper is painful on the skin of my palms.  That said, no abnormality seems visible.  Anyone else find this?

  11. Posted

    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.

  12. Posted

    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.

  13. Posted

    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.

  14. Posted

    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 

  15. Posted

     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

  16. Posted

    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.

  19. Posted

    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.

  20. Posted

    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.

  21. Posted

    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.

  23. Posted

    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

  24. Posted

    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.

  25. Posted

    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.

     

×
×
  • Create New...