Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Hi Sherry and Welcome, My name is Lynn and I just turned 41, have been around here now for apx 3 years. If you are having trouble with sleep it is most likely the prednisone, I have to take sleeping pills on high doses of prednisone or I do not sleep at all. Are you being treated with anything besides steriods?? Where do you live?? We have people all over the US as well as several other countries as well. I am in Wisconsin and am on Methotrexate and Kinneret as well as pain killers and many other things. Hope you find the answers and suppport you need here. Lynn -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.375 / Virus Database: 267.14.19/231 - Release Date: 1/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Hey Sherry... I am happy you have us and very, very sad that you have found us. Happy because these are a great bunch of people. Ask any question you can think of and chances are pretty good one of us has expereinced the same thing. Very sad that you have found us because that means that you have Stills and that just sucks. Write anytime day or night and you'll get a response pretty quickly. Take care, Joe > > Hi, my name is Sherry and I wanted to introduce myself. I am 38 and my b-day is 11-6-1967. I was diagnosed with Stills back in Dec. 2005. I was having fevers up to 106 and was in the hospital for a better part of the month. My fevers have died down but now I am having lots of joint pain. I take pred and still most nights cannot sleep. Most of my pain comes through my upper arms, knees and feet. I am still very weak from the arthritis and I get weaker when having fevers. I don't know what to expect, but reading your mails has made me feel somewhat better knowing that I am not alone. Thank you for giving me a place I can come to when feeling down and out. I am looking forward to chatting with others (once I learn how to) and making new friends. Sherry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Hi Lynn and thank you for writing. Yours was my very first message. I only take pred and aspirin for pain. I live in Toledo Ohio and my reumy is a Dr. Gordon. I actually have some ??? about pred. Ever since I have started taking pred I have had some weird side effects which I don't know whether to blame on the meds or the Stills. My body gets this numb and heavy feeling which sometimes makes it hard for me to walk. I also am hungry all the time and can't stop eating. I find myself waking up in the middle of the night (on the rare nights when I do sleep) and going to the kitchen to eat. Bad habit but I cannot help myself. the hungry feeling just will not go away. Any advice on how to curve that will be appreciated. That is all I can think of right now. Anything else comes to mind I will let you know. Thanks Sherry -------------- Original message from " Lynn " : -------------- Hi Sherry and Welcome, My name is Lynn and I just turned 41, have been around here now for apx 3 years. If you are having trouble with sleep it is most likely the prednisone, I have to take sleeping pills on high doses of prednisone or I do not sleep at all. Are you being treated with anything besides steriods?? Where do you live?? We have people all over the US as well as several other countries as well. I am in Wisconsin and am on Methotrexate and Kinneret as well as pain killers and many other things. Hope you find the answers and suppport you need here. Lynn -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.375 / Virus Database: 267.14.19/231 - Release Date: 1/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Sherry, Not sure aobut the numb heavy feeling, that may just be the fatigue of the disease?? But the eating is the prednisone. I strongly suggest you look up prednisone for side effects etc.There are tons, it can also cause a lot of psychological symptoms as well,that I was not aware of. I had severe anxiety attachs when I was on 60 mg. Weight gain, wanting to eat all the time,especially at night and not sleeping, all common, but there are long term consequences as well, which is why you will find most of us trying to get off of it and many docs won't give it unless you are really bad off or can't take anything else. Feel free to email me privately too if you have any other questions. lrdudette@..., you will get more welcomes when the others pop in. Some of us work and some of us are home all day, and some might even write you from work too! lynn -- Re: Newly Diagnosed Hi Lynn and thank you for writing. Yours was my very first message. I only take pred and aspirin for pain. I live in Toledo Ohio and my reumy is a Dr. Gordon. I actually have some ??? about pred. Ever since I have started taking pred I have had some weird side effects which I don't know whether to blame on the meds or the Stills. My body gets this numb and heavy feeling which sometimes makes it hard for me to walk. I also am hungry all the time and can't stop eating. I find myself waking up in the middle of the night (on the rare nights when I do sleep) and going to the kitchen to eat. Bad habit but I cannot help myself. the hungry feeling just will not go away. Any advice on how to curve that will be appreciated. That is all I can think of right now. Anything else comes to mind I will let you know. Thanks Sherry -------------- Original message from " Lynn " : -------------- Hi Sherry and Welcome, My name is Lynn and I just turned 41, have been around here now for apx 3 years. If you are having trouble with sleep it is most likely the prednisone, I have to take sleeping pills on high doses of prednisone or I do not sleep at all. Are you being treated with anything besides steriods?? Where do you live?? We have people all over the US as well as several other countries as well. I am in Wisconsin and am on Methotrexate and Kinneret as well as pain killers and many other things. Hope you find the answers and suppport you need here. Lynn -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.375 / Virus Database: 267.14.19/231 - Release Date: 1/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Hi Sherry welcome to our group. I am so so sad to hear how sick you have been. It is very scary to be sick for so long. Many remissions happen never soon enough but I wish the longest one ever for you . You will get the answers to many of your questions and fears at this site and make lots of new friends ... Don't be shy..let us know how you are doing...Hugs Liz in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Hello Sherry and welcome to the group..Im glad the fevers have at least gotten better that always seemed to intensify the pain for me x10.Prednisone common sideffect is insomnia,I could only sleep with sleeping pill Ambien I think.Im currently doing well though,hope you continue to see improvement. d.Canada Newly Diagnosed > Hi, my name is Sherry and I wanted to introduce myself. I am 38 and my > b-day is 11-6-1967. I was diagnosed with Stills back in Dec. 2005. I was > having fevers up to 106 and was in the hospital for a better part of the > month. My fevers have died down but now I am having lots of joint pain. I > take pred and still most nights cannot sleep. Most of my pain comes > through my upper arms, knees and feet. I am still very weak from the > arthritis and I get weaker when having fevers. I don't know what to > expect, but reading your mails has made me feel somewhat better knowing > that I am not alone. Thank you for giving me a place I can come to when > feeling down and out. I am looking forward to chatting with others (once I > learn how to) and making new friends. Sherry > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > The materials and information contained in this message are not intended > to replace the services of a trained health professional or to be a > substitute for medical advice of physicians and/or other health care > professionals. The International Still's Disease Foundation is not engaged > in rendering medical or professional medical services. You should consult > your physician on specific medical questions, particularly in matters > requiring diagnosis or medical attention. The International Still's > Disease Foundation makes no representations or warranties with respect to > any treatment, action, application, medication or preparation by any > person following the information offered or provided within this support > form. > > ion by any person following the information offered or provided within > this support form. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 - Hi Sherry I'm Rob (36)and I was just diagnosed back in Aug of 2005. Had all your similar symptoms. When I started the pred. I could not sleep either and was driving me crazy because I'm sleep person and was on 60 mg when started but called my Doc and she precscibed a sleeping pill and that helped me get back to a normal sleep pattern. I had the pain for awhile but the prednisone helped and then they put me on Methrotrexate and now on Kineret a daily shot and down to 15 mg of pred. and I feel great Almost like I am in remission and it's only been 5 months, It takes some time to rebuild your streanght and all that. I know each person is different but hopefully you will have the same results. This is a great group and great site it has helped me mentallay. Just knowing your not alone out there with this damn disease. If you have any quesions feel free to e-mail me. Good Luck and Welcome to the Group. I don't always have messages but I sure read them all everyday and helps. Take Care It will get better. Rob in Montana -- In Stillsdisease , ipcjogger@a... wrote: > > Hi, my name is Sherry and I wanted to introduce myself. I am 38 and my b-day is 11-6-1967. I was diagnosed with Stills back in Dec. 2005. I was having fevers up to 106 and was in the hospital for a better part of the month. My fevers have died down but now I am having lots of joint pain. I take pred and still most nights cannot sleep. Most of my pain comes through my upper arms, knees and feet. I am still very weak from the arthritis and I get weaker when having fevers. I don't know what to expect, but reading your mails has made me feel somewhat better knowing that I am not alone. Thank you for giving me a place I can come to when feeling down and out. I am looking forward to chatting with others (once I learn how to) and making new friends. Sherry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 Welcome Tom, I have had one episode of chest pain. Luckily got to it pretty quick. Started about 2 days before Rhem appt. She could not hear any noise listeting to my chest but bumped up pred. Pain started decreasing in 1 day and gone in 3. That was my only involvement with that symptom, thank God. Others I have are joints, anemia and temp spikes. I get the rash rarely, have it on my arms at the moment. Just had to bump up the pred. (sigh!) With the related anemia aerobic walking or stairs wear me out. I do try to push it as much as I can. I take the back stairs at work because fewer people use them so I do not get in the way when I take my breather. Keep in touch and hope your symptoms stay out of sight. Tom from PA > > Hello everyone, > > This is my first posting to the AOSD discussion group. > > First, a little about me: my name is Tom Koch and I'm from a small > town in central Illinois called Tremont - just south of Peoria on the > map. I'm a 29 year old single guy and I work as an engineer for > Caterpillar. In my spare time, I enjoy hunting, fishing, > backpacking, and anything outdoors (at least I used to). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 Sorry, but was also going to respondto Quest#3 -glyconutrients My wife got info from a friend about this. (everyone does want to help us) They are derived from a variety of seaweed found in the Pacific ocean near Tonga. I have real missgivings about anything that purports to be able to " cure " everything from autoimmune diseases to dandruff and acne, migraines and everything in between. There is one supplier who was required to destroy several million dollars of their product because they made unsupportable claims which moved it out of the category of " food supplements " . Tom from PA > > Hello everyone, > > This is my first posting to the AOSD discussion group. > > 3) Finally, I have a friend (non-doctor) who gave me some information > on a class of dietary supplements called glyconutrients. Supposedly > they can help cure the underlying cause of many autoimmune diseases. > Has anyone heard of or tried anything like this? Are there any > dietary supplements that are helpful for this disease or is this all > just quackery? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 Tom, welcome to the group. I am sorry that you have been diagnosed with this disease but everyone in the group are very supportive. I am 34 years old (single) and live in florida since 2001 from NY. I was only diagnosed one year ago. Like you I had a ton of questions and through the support group I have made good friends and I know everyone in the group understand what we go through. I was diagnosed with costrochrondriitis ( inflammation of the rib cage ) and had great difficulty with my breathing. I hope you feel better soon. If you do not understand something about your health just ask the group. They are so knowledgeable and make you feel better with their encouragement. Danni -----ion by any person following the information offered or provided within this support form. Quote Link to comment Share on other sites More sharing options...
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