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Found 3 results

  1. Disability, fatigue, pain and their associates in early diffuse cutaneous systemic sclerosis (dcSSc): the European Scleroderma Observational Study. The European Scleroderma Observational Study highlights the burden of disability in early dcSSc, with high levels of disability and fatigue, associating with the degree of skin thickening (mRSS). PubMed, Rheumatology (Oxford), 11/30/2017. (Also see Diffuse Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. My beautiful wife has been newly diagnosed with Scleroderma, in process of additional testing - including pulmonary function - but Rheumatologist is quite confident of the diagnoses. We are in process of 'recovering' from this surreal experience and educating ourselves as much as possible. I'm hoping my wife (Jennifer) will join these forums for additional support, but I'm also careful not to push her and let her go at her own pace - she has always been very proud of her health and fitness, this is a substantive blow to her ego and self identity. We have been wondering how to deal with this in regards to her employment and hoping for suggestions and shared experiences from you guys. Jennifer is a Pharmacy Manager and, here in Canada at least, the newest trend is the expectation that pharmacists will provide flu shots and travel vaccines regularly. Problem is, Jennifer no longer trusts her hand coordination for this and is at that point, with the new diagnoses, that she needs to disclose her current circumstances with her employer. Fortunately, it appears she has an excellent disability package - but not experienced with the process, and not even sure if she qualifies for being on 'disability' as of yet ... but her work environment is not particularly flexible in regards to accommodating her, not because the employer would be unwilling but because of the nature of her work - i.e. standing on concrete floor all day, hand manipulation of small items, repetitive hand movements (which is really starting to bother her), and the air conditioned environment which she finds it triggers the Raynaud's. Any thoughts, suggestions and shared experience on this matter would be greatly appreciated. Warm regards, CrankyGoat (aka Steve)
  3. I am having an awful time with my hands and feet so far and It's not even "winter" yet!! I started a very part time job a couple months ago, I work one day a week LOVE IT!! They keep the office at 62 degrees :( !! Yesterday I was sooo cold I could NOT get warm. I can't wear gloves or mitten at work because my job is laying out a newspaper and I need my fingers free to be able to work.)!! I came right out and said several times, "Oh, its freezing in here I can't warm my fingers up", but to no avail. I ended up going to the bathroom and running my fingers under warm water. The problem is this, well there are actually two: Once my fingers spasm I can not get them warm, the color is either red or black! I just saw the rheumatologist 2 weeks ago and he noticed the capillary delay and mentioned it to the PA working with him. My fingers are constantly in pain or numb.. Also, I have been so stiff, I hurt all over every joint! I just want to cry. :( I am not sure if the swelling in the fingers and hands is due to the Raynauds or if it is sclerodactyly!! ((SCREAMING IN FRUSTRATION)) The other problem I have is how can I get them to turn the heat up in the office without going into such labored detail about my illness :( which they won't understand anyways? I fear this is going to be an awful long winter up here in the north. <Sigh>. I hope everyone else is keeping warm and symptom free. I have fallen into the pity pot and I can't seem to climb out. I am sick of being ill.
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