Guest guest Posted July 22, 2005 Report Share Posted July 22, 2005 Hi Emma Welcome to the group - like you I live in the UK and am also a mental health worker in my case for the mental health charity Rethink as a Team Leader in a Registered Care Home in Rugby where I llive. Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Hi, Emma! Great to meet you. I wanted to let you know that I also presented with Pericardial Effusion back in 1992. Problem was, it took them another three years to diagnose me. They drained 380cc's of fluid from my heart. At that time, I was only 23 years old and scared to death that something was wrong with my heart. Sounds like you are headed in the right direction, though. Hope you get better soon and know that we love to hear from you! Hugs, Gail emma_mizen wrote: Hi all, I'm Emma, new to this board and the whole Stills thing!. --------------------------------- Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Welcome Emma! I am sorry to hear that you have recently been diagnosed with AOSD. But I am glad that you found our group. This group has been one of the greatest things that has happened to me since I was diagnosed in March of 2004. I do know we have a few members in the UK. I live in the United States in New Jersey. Please feel free to ask any questions or concerns you have. We are here to help. Take Care, Carey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Dear Emma, Welcome to the group. I was only diagnosed 2-3 months ago. I understand the feelings of frustration. I am 34 a nurse and have had a tough time with joint pain and swelling. The Still's group is very helpful. The people in the group have been where we are and understand what we are going through. If you have any questions just ask the group. that is why they are here. I hope you are feeling better soon. Keep your chin up. Sincerely, Danni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Welcome Emma; I do hope your Stills reacts positively to the medications for relief soon. I think I introduced myself when you joined but if not, my nickname is Melt and I was diagnosed just about 30 years ago. Rest is a very important part of treatment with this disease and being kind to yourself helps so much. We are happy to have you with our family. Good day with smiles, Melt ----- Original Message ----- From: emma_mizen Hi all, I'm Emma, new to this board and the whole Stills thing!. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Hi Emma, welcome to our family! I'm sorry for the pain you are feeling now. I hope a short dose of steroids will be helpful. Please be sure to keep in touch with your Rheumatologist and make good use of our site, it contains a great deal of information. Don't hestitate to ask questions. You'll find many warm, caring friends here. Please, allow me to express condolences to you and others in the UK for the terrible acts of terrorism. Warm hugs, Barbara Gardner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Welcome Emma! I am also fairly new to this disease having been diagnosed in April. I'm 29 years old and a family law attorney. I know what you mean about needing to use your hands and having too much pain. I have found that the pain moves to different joints, but it has settled in my hands and wrists nearly every day for the past few weeks. I have been in physical therapy twice a week and have found some benefits from paraffin treatments and therapeutic ultrasound to the affected areas. My physical therapist is also ordering compression gloves for me. Supposedly, they help keep the inflammation down in the hands and wrists. I haven't tried them yet and I haven't heard anyone else in this group mention them, but my father saw a letter about wearing tight gloves in a magazine feature on arthritis, so I figure that it is the same principle. I'll write again after the order comes in to let everyone know whether they were effective at all. I know that for me it has been difficult adjusting to what feels like a new life that is very different from the one I had before Stills, but I encourage you to seek comfort and advice from this group. It has been a big help to me as I learn to adjust to my new life with Stills. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Hi Emma, I'm another of the UK contingent of dragon fighters! I've had stills " on and off " since I was three and I'm now 37 (yes I've had *another* birthday for the observant of you out there) but it hasn't stopped me living life and to the unknowing world I look completely " normal " . Stills does not rule my life but more recently it has caused me to modify it somewhat in terms of what I do and when, you just have to work around it and allow yourself time to rest. I hope your episode is brief and not too severe, but whichever path it takes there are plenty of people here with lots of helpful experiences to share with you. best wishes, Graham (37) West Sussex, UK At 08:42 23/07/2005, you wrote: >Hi all, I'm Emma, new to this board and the whole Stills thing!. A >little bit about me is that I'm in the UK, 32 with partner and 2 >kids. I'm a Mental Health Worker and seconded Student Mental Health >Nurse (which has been put on hold a bit) > >I came up in spots about 4/5 weeks ago with a sore throat and was >diagnosed and treated for Scarlet Fever, after a week of rashes, >fevers, joint pain, etc I ended up in Casualty with chest pains and >admitted to the Cardiac Unit where they found I have a pericardial >effusion (fluid around the heart) By a process of elimination and a >week of tests, scans and having so much blood taken Dracula must >have been jumping for joy they came down to Stills Disease, for >which I am now on a short course of steroids. > >Currently I have an occasional rash, night sweats, occasional chest >pain, fatigue but the biggest bother is the joint pain which decides >to switch to different parts of my body on a daily basis! > >Other than that I'm just fed right up, actually its much stronger >than that but I didnt want to create the wrong impression by >swearing! To say I'm not amused is an understatement. I write lots, >notes for work, I write reviews for websites, use the pc a lot, play >the flute, etc and consistently losing the use of my fingers, hands >and wrists is really getting to me, and to be told it could last for >weeks is rather stressful! >Thankfully work has a counsellinng service I'll be able to access. > >Anyway, enough rambling from me, it was supposed to be a slight >introduction! But it is nice to meet you all, and I enjoy reading >your messages! > >Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2005 Report Share Posted July 27, 2005 Welcome Emma. My name is Marie, I live in NY and joined for my niece in Ireland who is 12yrs old and diagnosed with Stills. Shona has just been given a laptop from the family as therapy/sanity to keep her hands busy. i hope all goes well for you. You have joined a wonderful supportive group of people I am proud to call family even though I have never met anyone. Good Luck to you Marie- LI NY Quote Link to comment Share on other sites More sharing options...
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