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dimarzio

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Posts posted by dimarzio

  1. Posted

    This is a 'Must Read' for any Ssc sufferer, though maybe a bit out of date with regard to Cloriquine bearing in mind what we now know about cardiovascular risks.  Dexamethasone maybe a more beneficial treatment for any Ssc patients suffering from respiratory distress after contracting covid-19 though undoubtably as the pandemic progresses, alternative treatments may become apparent.

  4. Posted

    Hi Ronald, 

     

    Sorry that you are still having so much pain and problems.

     

    I guess that you may get to the point that you feel that the finger is worth less than the pain.  I hope you don't, but people live quite happily with a lot less than 10 fingers.

     

    Medical grade Manuka Honey might be worth a try if nothing else is working.  

     

    Good luck, whichever way things go.

  5. Posted

    In the UK, the health service are about to issue 1.5m letters to those they consider at risk. I wonder how many of us will receive one?  Not expecting one as my general practitioner and rheumatologist seem to think SSc is just a minor inconvenience.

  6. Posted

    These feelings of cobwebs and something crawling on your skin can be a symptom of Fibromyalgia, I believe.  I get these feelings sometimes, especially as I am about to fall asleep.  To me it does actually feel like a fly has landed on my face, though sometimes it might really be a small insect.

  7. Posted

    Good Morning Jo,

     

    It could be that being on immuno-suppression may help. Some of the most serious symptoms of COVID-19 result from an immune system that is on the rampage rather than a lethargic one. Chinese scientists found an extreme immune system response called Cytokine Storm, a flood of immune cells and biochemicals they produce tears through lung tissue.

     

    Let's all hope that this outbreak can be controlled and that our Governments are strong enough to take the necessary containment actions swiftly.

  8. Posted

    How much higher is our risk from this pandemic?  In the UK there have been 4 deaths reported and all seem to be in their 60s, 70s and 80s.

     

    It seems that  those with underlying health conditions or compromised immune systems are at significantly greater risk than the 3.4% average so far.

     

    The virus attacks the lungs, so anyone with a lung condition needs to be extra careful as should anyone taking immunosuppressants.  Is there a case for stopping or reducing these, perhaps?

     

    Keep  safe everyone and look after yourselves.

  9. 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

  10. 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.

  11. 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.

  14. 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.

  15. 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?

  19. 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.

  20. 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.

  21. 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.

  22. 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 

  23. 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

  24. 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.

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