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dimarzio

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Posts posted by dimarzio

  1. Sorry to hear that Sclero org is retiring Jo. Is there another forum that we can all gravitate too as I will certainly miss some of the activity here even though it seems to have dropped off a bit lately.

     

    Would you mind letting us know what the thinking is behind this decision? Is it simply the lack of support and activity?

  2. I've read about similar reports before and I have certainly had gluelike symptoms on my hands when my Raynauds is bad.  My best guess from what I've read and understand is that this might relate to a skin reaction resulting from the changes in the dermis layer below the skin.  However, I am not a qualified medical professional, so my view is simply based on information I have gleaned since I started to research the subject.

  3. Flu vaccine in October, Pneumonia vaccine iin October, Covid vaccine a week ago and a Tetanus jab yesterday.  Clinician says I need to have 2 follow up Tetanus jabs as well.  Now I know how a pin cushion feels :)

     

    Tetanus as a result of my severing an artery in my arm gardening yesterday - very messy business :)

  4. I can report that I had my first Oxford AZ jab 3 days ago and have had no reaction so far other than a slightly sore arm (as you might get from any injection).  I will of course need to wait for 3 weeks for full protection but feel much more confident now with the recent data published confirming an 80% reduction in serious cases amongst those who have had both Pfizer and AZ jabs.

  5. I feel that the risks and side effects of the vaccine pale into insignificant compared to the risks of getting COVID, so I shall be having it as soon as it is offered.

     

    I'm on a FB Sclero group where this has been discussed by a number of us and most appear to be of the same opinion (only one or two said they wouldn't have it).

     

    All the medical advice I have read says that we should have the jab, though there may be one or two exceptions, I guess.

  6. I started off very frightened and very negative as a result.  Pregabalin helped with my skin sensitivity so much that I was able to go out in the cold and wind again.  Being able to get out enabled me to exercise more and more which in turn helped with my tightness, stiffness and made a lot of aches and pains recede (not 100% but enough to make a difference).

     

    Lockdown has been helpful in that my wife has been so bored that I have been able to persuade her to come out for longer and longer walks and she has felt the benefits so much that she has got the walking/hiking bug too.

     

    Both of us are now so much leaner and fitter as a result. We've both lost a few kg and my blood suger levels have dropped too.

     

    We both had to push ourselves at first, but are feeling so much better now. Keeping positive and not dwelling so much on disease progression has made a big difference.  I know the outlook is not great but I am going to make the most of what time I am able to remain active and try to prolong that time as much as I can.

  7. Raynauds often seems to be associated with temperature changes rather than just cold temperatures.

     

    I've had it in the summer when a cloud passes in front of the sun for a few minutes and of course walking into an air conditioned shop or cafe when it's 25 or 30 degrees outdoors.

  8. My understanding was that the NIH finally concluded that the case mentioned was unrelated to the vaccine and the trials have resumed.

     

    Hopefully, it will not be too long before we get a vaccine, though studies seriously question how long a vaccine wil providel immunity for.

     

    In the mean time, everybody stay safe, avoid close contact as much as possible, follow the two metre rule and maintain appropriate personal hygiene.

  9. Hi Aimee.

    Whilst I do not know too much about Morphea, I would urge you to continue to exercise as much as possible.  If one side differs, there are many exercises that will only impact of one side giving you the balance you want 

     

    Please also consider that symptoms are often caused by the side effects of any medication rather than the underlying disease itself.

     

    You might also like to familiarise yourself with the sections of this website relating to morphea.

     

    Regards, Dimarzio.

  10. Thanks Kevin, I'm glad that the progression has slowed down for you.  I've also found that increasing physical activity has helped with the painful stiffness, but any longer than 24/48 hours without exercise is enough to bring it all back, so I have to do a long walk, cycle or some gardening every day.

     

    I hope that you will be able to find an effective treatment for the Telangiectasia and remain otherwise healthy.

     

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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.

  16. 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.

  17. 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

  18. 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.

  19. 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.

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