Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Jo, First, welcome to the group. Just know that, for me anyway, it was a long road to diagnosis of Still's simply b/c there's no way to test for it, just subtle clues & process of elimination. I went through the whole gamut of guesses (Lupus included, since it runs in my family) but it ended up being Still's for me after 8 years of guessing. Yes, your symptoms could point to Still's and even other autoimmune disorders. My experience? Rash (sometimes worse than others), fatigue, weight loss (dramatic), a vague feeling that something's " off " , lack of concentration, joint pain & swelling, muscle aches, I could go on, but I think you get the picture. Oh, and the " headache " , I have had that too. It doesn't feel like a headache to me, more like a pain running through my scalp? Sounds funny, but true. And stress will definitely bring on a flare. Still's or not. Your recent stress is probably a factor here. Unfortunately, there are some stressors in life that are unavoidable. Just know it could make things worse and try to avoid it at all costs. Mainly, keep pushing for that doctor appt. My doc tells me if I need anything, to just stop by and wait for him. And I have had to do that. Go see your regular doc and lay it down like it is, ASK him/her to get you in sooner. Hey, we hire THEM, they work for us, not the other way around! Take care of yourself and keep us posted. Gail (KY) jookeefe_1960 wrote: My name is Jo and I am 46. I was diagnosed with RA as a young teenager but had symptoms for as long as I can remember -- I just assumed it was normal to feel the way I did. I did not see a rheumatologist until about 6 years ago when I became quite ill. After about 2 years of tests and medication, I finally began to feel better and I have done well the past few years. Within the past 2 weeks, though, I have begun to be ill again. This week I was only able to work 1 1/2 days. I am totally exhausted all the time, no matter how much I sleep, I have dark circles under my eyes all the time, my eyes are puffy, I am having a lot of joint pain and tenderness, I have a headache (though I feel it is more of a pain in my head, if that makes sense), my breathing is slow and difficult, I have a light rash on my face, I'm having serious muddled thinking and memory problems, and my thermostat is off (I'm usually too cold, though occasionally too warm in comparison to others). For various reasons, I am beginning to think I have Lupus rather than just RA. But some of the Still's Disease symptoms fit as well. I am interested in whether any of you have had confusion about your diagnosis in the beginning. I am currently taking Plaquenil, Voltaren, Methotrexate, Ultracet, Nortriptyline (low dose for pain), Levothyroxine (also have Hashimoto's Thyroiditis), and Lisinopril (hypertension). I am really depressed to be feeling so badly again. I am recently divorced (in large part, I feel, due to my illness) so it is very frightening financially in addition to feeling terrible. I had thought perhaps this was my thyroid disease causing my symptoms, but my regular doctor called me today with my test results and my thyroid tests were all normal, but my C-Reactive Protein is 11.5, up from 1.6 at its lowest when I was in remission. I called my rheumatologist and was told I can't get in until August! (I already have an appointment scheduled in September.) My plan is to go see my regular doctor again and see what she thinks and whether she can get me into the rheumatologist sooner, though I am pretty upset that I can't just get in on my own since I have been seeing him for 6 years and he also sees my son (JRA). Both of my children also have many symptoms that point to either Lupus or maybe Still's Disease as well. Any support or advice would be greatly appreciated. Jo Indianapolis, IN Visit me, your Kay Independent Beauty Consultant (10% of your order will be donated to the International Still's Disease Foundation) http://www.marykay.com/glmurphy --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Jo, First, welcome to the group. Just know that, for me anyway, it was a long road to diagnosis of Still's simply b/c there's no way to test for it, just subtle clues & process of elimination. I went through the whole gamut of guesses (Lupus included, since it runs in my family) but it ended up being Still's for me after 8 years of guessing. Yes, your symptoms could point to Still's and even other autoimmune disorders. My experience? Rash (sometimes worse than others), fatigue, weight loss (dramatic), a vague feeling that something's " off " , lack of concentration, joint pain & swelling, muscle aches, I could go on, but I think you get the picture. Oh, and the " headache " , I have had that too. It doesn't feel like a headache to me, more like a pain running through my scalp? Sounds funny, but true. And stress will definitely bring on a flare. Still's or not. Your recent stress is probably a factor here. Unfortunately, there are some stressors in life that are unavoidable. Just know it could make things worse and try to avoid it at all costs. Mainly, keep pushing for that doctor appt. My doc tells me if I need anything, to just stop by and wait for him. And I have had to do that. Go see your regular doc and lay it down like it is, ASK him/her to get you in sooner. Hey, we hire THEM, they work for us, not the other way around! Take care of yourself and keep us posted. Gail (KY) jookeefe_1960 wrote: My name is Jo and I am 46. I was diagnosed with RA as a young teenager but had symptoms for as long as I can remember -- I just assumed it was normal to feel the way I did. I did not see a rheumatologist until about 6 years ago when I became quite ill. After about 2 years of tests and medication, I finally began to feel better and I have done well the past few years. Within the past 2 weeks, though, I have begun to be ill again. This week I was only able to work 1 1/2 days. I am totally exhausted all the time, no matter how much I sleep, I have dark circles under my eyes all the time, my eyes are puffy, I am having a lot of joint pain and tenderness, I have a headache (though I feel it is more of a pain in my head, if that makes sense), my breathing is slow and difficult, I have a light rash on my face, I'm having serious muddled thinking and memory problems, and my thermostat is off (I'm usually too cold, though occasionally too warm in comparison to others). For various reasons, I am beginning to think I have Lupus rather than just RA. But some of the Still's Disease symptoms fit as well. I am interested in whether any of you have had confusion about your diagnosis in the beginning. I am currently taking Plaquenil, Voltaren, Methotrexate, Ultracet, Nortriptyline (low dose for pain), Levothyroxine (also have Hashimoto's Thyroiditis), and Lisinopril (hypertension). I am really depressed to be feeling so badly again. I am recently divorced (in large part, I feel, due to my illness) so it is very frightening financially in addition to feeling terrible. I had thought perhaps this was my thyroid disease causing my symptoms, but my regular doctor called me today with my test results and my thyroid tests were all normal, but my C-Reactive Protein is 11.5, up from 1.6 at its lowest when I was in remission. I called my rheumatologist and was told I can't get in until August! (I already have an appointment scheduled in September.) My plan is to go see my regular doctor again and see what she thinks and whether she can get me into the rheumatologist sooner, though I am pretty upset that I can't just get in on my own since I have been seeing him for 6 years and he also sees my son (JRA). Both of my children also have many symptoms that point to either Lupus or maybe Still's Disease as well. Any support or advice would be greatly appreciated. Jo Indianapolis, IN Visit me, your Kay Independent Beauty Consultant (10% of your order will be donated to the International Still's Disease Foundation) http://www.marykay.com/glmurphy --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Jo, First, welcome to the group. Just know that, for me anyway, it was a long road to diagnosis of Still's simply b/c there's no way to test for it, just subtle clues & process of elimination. I went through the whole gamut of guesses (Lupus included, since it runs in my family) but it ended up being Still's for me after 8 years of guessing. Yes, your symptoms could point to Still's and even other autoimmune disorders. My experience? Rash (sometimes worse than others), fatigue, weight loss (dramatic), a vague feeling that something's " off " , lack of concentration, joint pain & swelling, muscle aches, I could go on, but I think you get the picture. Oh, and the " headache " , I have had that too. It doesn't feel like a headache to me, more like a pain running through my scalp? Sounds funny, but true. And stress will definitely bring on a flare. Still's or not. Your recent stress is probably a factor here. Unfortunately, there are some stressors in life that are unavoidable. Just know it could make things worse and try to avoid it at all costs. Mainly, keep pushing for that doctor appt. My doc tells me if I need anything, to just stop by and wait for him. And I have had to do that. Go see your regular doc and lay it down like it is, ASK him/her to get you in sooner. Hey, we hire THEM, they work for us, not the other way around! Take care of yourself and keep us posted. Gail (KY) jookeefe_1960 wrote: My name is Jo and I am 46. I was diagnosed with RA as a young teenager but had symptoms for as long as I can remember -- I just assumed it was normal to feel the way I did. I did not see a rheumatologist until about 6 years ago when I became quite ill. After about 2 years of tests and medication, I finally began to feel better and I have done well the past few years. Within the past 2 weeks, though, I have begun to be ill again. This week I was only able to work 1 1/2 days. I am totally exhausted all the time, no matter how much I sleep, I have dark circles under my eyes all the time, my eyes are puffy, I am having a lot of joint pain and tenderness, I have a headache (though I feel it is more of a pain in my head, if that makes sense), my breathing is slow and difficult, I have a light rash on my face, I'm having serious muddled thinking and memory problems, and my thermostat is off (I'm usually too cold, though occasionally too warm in comparison to others). For various reasons, I am beginning to think I have Lupus rather than just RA. But some of the Still's Disease symptoms fit as well. I am interested in whether any of you have had confusion about your diagnosis in the beginning. I am currently taking Plaquenil, Voltaren, Methotrexate, Ultracet, Nortriptyline (low dose for pain), Levothyroxine (also have Hashimoto's Thyroiditis), and Lisinopril (hypertension). I am really depressed to be feeling so badly again. I am recently divorced (in large part, I feel, due to my illness) so it is very frightening financially in addition to feeling terrible. I had thought perhaps this was my thyroid disease causing my symptoms, but my regular doctor called me today with my test results and my thyroid tests were all normal, but my C-Reactive Protein is 11.5, up from 1.6 at its lowest when I was in remission. I called my rheumatologist and was told I can't get in until August! (I already have an appointment scheduled in September.) My plan is to go see my regular doctor again and see what she thinks and whether she can get me into the rheumatologist sooner, though I am pretty upset that I can't just get in on my own since I have been seeing him for 6 years and he also sees my son (JRA). Both of my children also have many symptoms that point to either Lupus or maybe Still's Disease as well. Any support or advice would be greatly appreciated. Jo Indianapolis, IN Visit me, your Kay Independent Beauty Consultant (10% of your order will be donated to the International Still's Disease Foundation) http://www.marykay.com/glmurphy --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hey Jo I think many of these diseases overlap. As long as the doctor monitors you for what is happening and then treats it too. . For example, if your heart or kidneys had a problem the doctor would know and treat it. I used to panic and wonder if I had another one of the rheumy diseases, I in fact now am an overlap kind of patient. Age 51 and they call me undifferentiated connective tissue disorder. No change in how I am treated. I am glad you found us, many many nice people with questions and support. Some of us are well, some sick right now. I think it is a terrific group and hope it helps you. Liz NJ diagnosed 1972 ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hey Jo I think many of these diseases overlap. As long as the doctor monitors you for what is happening and then treats it too. . For example, if your heart or kidneys had a problem the doctor would know and treat it. I used to panic and wonder if I had another one of the rheumy diseases, I in fact now am an overlap kind of patient. Age 51 and they call me undifferentiated connective tissue disorder. No change in how I am treated. I am glad you found us, many many nice people with questions and support. Some of us are well, some sick right now. I think it is a terrific group and hope it helps you. Liz NJ diagnosed 1972 ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hey Jo I think many of these diseases overlap. As long as the doctor monitors you for what is happening and then treats it too. . For example, if your heart or kidneys had a problem the doctor would know and treat it. I used to panic and wonder if I had another one of the rheumy diseases, I in fact now am an overlap kind of patient. Age 51 and they call me undifferentiated connective tissue disorder. No change in how I am treated. I am glad you found us, many many nice people with questions and support. Some of us are well, some sick right now. I think it is a terrific group and hope it helps you. Liz NJ diagnosed 1972 ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Welcome Jo. There is sometimes confusion as to whether the diagnoses is Stills or Lupus. One of our members here, had that happen after years and years of a diagnoses of Stills hers was reversed to Lupus. The diseases can be very similar. She is not active with the group at this time but is still part of our family so don't go anywhere if that indeed ends up to be your case too. We are very close here no matter and welcome you just the same. My nickname is Melt and my diagnoses was classic, 30 years old now and I just turned 49 this week. Let us know if we can help with anything. We have free brochures available. Chats on Thursday evenings and gift drawings sometimes and a conference in Las Vegas at the end of October, lol. Well, I've probably said more than enough. Have a good day and hopefully you can rest and be good to yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Welcome Jo. There is sometimes confusion as to whether the diagnoses is Stills or Lupus. One of our members here, had that happen after years and years of a diagnoses of Stills hers was reversed to Lupus. The diseases can be very similar. She is not active with the group at this time but is still part of our family so don't go anywhere if that indeed ends up to be your case too. We are very close here no matter and welcome you just the same. My nickname is Melt and my diagnoses was classic, 30 years old now and I just turned 49 this week. Let us know if we can help with anything. We have free brochures available. Chats on Thursday evenings and gift drawings sometimes and a conference in Las Vegas at the end of October, lol. Well, I've probably said more than enough. Have a good day and hopefully you can rest and be good to yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Welcome Jo. There is sometimes confusion as to whether the diagnoses is Stills or Lupus. One of our members here, had that happen after years and years of a diagnoses of Stills hers was reversed to Lupus. The diseases can be very similar. She is not active with the group at this time but is still part of our family so don't go anywhere if that indeed ends up to be your case too. We are very close here no matter and welcome you just the same. My nickname is Melt and my diagnoses was classic, 30 years old now and I just turned 49 this week. Let us know if we can help with anything. We have free brochures available. Chats on Thursday evenings and gift drawings sometimes and a conference in Las Vegas at the end of October, lol. Well, I've probably said more than enough. Have a good day and hopefully you can rest and be good to yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hi Jo, I'm so sorry that you are having problems again. I was diagnosed with Stills in 1996. I am having my first flare up in over 7 years. Fortunately, a visit to the rheumatolgist last week has really helped. I know all about the depression of being sick. I finally had to go on Lexapro to help with it. Hope things get better for you. </HTML> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hi Jo, I'm so sorry that you are having problems again. I was diagnosed with Stills in 1996. I am having my first flare up in over 7 years. Fortunately, a visit to the rheumatolgist last week has really helped. I know all about the depression of being sick. I finally had to go on Lexapro to help with it. Hope things get better for you. </HTML> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2007 Report Share Posted June 25, 2007 _____ From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of jookeefe_1960 Sent: 23 June 2007 08:18 To: Stillsdisease Subject: New Member - Jo My name is Jo and I am 46. I was diagnosed with RA as a young teenager but had symptoms for as long as I can remember -- I just assumed it was normal to feel the way I did. I did not see a rheumatologist until about 6 years ago when I became quite ill. After about 2 years of tests and medication, I finally began to feel better and I have done well the past few years. Within the past 2 weeks, though, I have begun to be ill again. This week I was only able to work 1 1/2 days. I am totally exhausted all the time, no matter how much I sleep, I have dark circles under my eyes all the time, my eyes are puffy, I am having a lot of joint pain and tenderness, I have a headache (though I feel it is more of a pain in my head, if that makes sense), my breathing is slow and difficult, I have a light rash on my face, I'm having serious muddled thinking and memory problems, and my thermostat is off (I'm usually too cold, though occasionally too warm in comparison to others). For various reasons, I am beginning to think I have Lupus rather than just RA. But some of the Still's Disease symptoms fit as well. I am interested in whether any of you have had confusion about your diagnosis in the beginning. I am currently taking Plaquenil, Voltaren, Methotrexate, Ultracet, Nortriptyline (low dose for pain), Levothyroxine (also have Hashimoto's Thyroiditis), and Lisinopril (hypertension). I am really depressed to be feeling so badly again. I am recently divorced (in large part, I feel, due to my illness) so it is very frightening financially in addition to feeling terrible. I had thought perhaps this was my thyroid disease causing my symptoms, but my regular doctor called me today with my test results and my thyroid tests were all normal, but my C-Reactive Protein is 11.5, up from 1.6 at its lowest when I was in remission. I called my rheumatologist and was told I can't get in until August! (I already have an appointment scheduled in September.) My plan is to go see my regular doctor again and see what she thinks and whether she can get me into the rheumatologist sooner, though I am pretty upset that I can't just get in on my own since I have been seeing him for 6 years and he also sees my son (JRA). Both of my children also have many symptoms that point to either Lupus or maybe Still's Disease as well. Any support or advice would be greatly appreciated. Jo Indianapolis, IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2007 Report Share Posted June 25, 2007 _____ From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of jookeefe_1960 Sent: 23 June 2007 08:18 To: Stillsdisease Subject: New Member - Jo My name is Jo and I am 46. I was diagnosed with RA as a young teenager but had symptoms for as long as I can remember -- I just assumed it was normal to feel the way I did. I did not see a rheumatologist until about 6 years ago when I became quite ill. After about 2 years of tests and medication, I finally began to feel better and I have done well the past few years. Within the past 2 weeks, though, I have begun to be ill again. This week I was only able to work 1 1/2 days. I am totally exhausted all the time, no matter how much I sleep, I have dark circles under my eyes all the time, my eyes are puffy, I am having a lot of joint pain and tenderness, I have a headache (though I feel it is more of a pain in my head, if that makes sense), my breathing is slow and difficult, I have a light rash on my face, I'm having serious muddled thinking and memory problems, and my thermostat is off (I'm usually too cold, though occasionally too warm in comparison to others). For various reasons, I am beginning to think I have Lupus rather than just RA. But some of the Still's Disease symptoms fit as well. I am interested in whether any of you have had confusion about your diagnosis in the beginning. I am currently taking Plaquenil, Voltaren, Methotrexate, Ultracet, Nortriptyline (low dose for pain), Levothyroxine (also have Hashimoto's Thyroiditis), and Lisinopril (hypertension). I am really depressed to be feeling so badly again. I am recently divorced (in large part, I feel, due to my illness) so it is very frightening financially in addition to feeling terrible. I had thought perhaps this was my thyroid disease causing my symptoms, but my regular doctor called me today with my test results and my thyroid tests were all normal, but my C-Reactive Protein is 11.5, up from 1.6 at its lowest when I was in remission. I called my rheumatologist and was told I can't get in until August! (I already have an appointment scheduled in September.) My plan is to go see my regular doctor again and see what she thinks and whether she can get me into the rheumatologist sooner, though I am pretty upset that I can't just get in on my own since I have been seeing him for 6 years and he also sees my son (JRA). Both of my children also have many symptoms that point to either Lupus or maybe Still's Disease as well. Any support or advice would be greatly appreciated. Jo Indianapolis, IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2007 Report Share Posted June 25, 2007 Jo, Welcome sorry your here due to Still's but you've found a great place. Maybe you can call your rheumy's office & ask if they can refer you to another doc who is familiar with stills so you can get in ASAP or ask them to call you if they have ANY cancellations. It seems as if they would try to squeeze you in since your a patient. I hope you can see someone soon. Chris jookeefe_1960 wrote: My name is Jo and I am 46. I was diagnosed with RA as a young teenager but had symptoms for as long as I can remember -- I just assumed it was normal to feel the way I did. I did not see a rheumatologist until about 6 years ago when I became quite ill. After about 2 years of tests and medication, I finally began to feel better and I have done well the past few years. Within the past 2 weeks, though, I have begun to be ill again. This week I was only able to work 1 1/2 days. I am totally exhausted all the time, no matter how much I sleep, I have dark circles under my eyes all the time, my eyes are puffy, I am having a lot of joint pain and tenderness, I have a headache (though I feel it is more of a pain in my head, if that makes sense), my breathing is slow and difficult, I have a light rash on my face, I'm having serious muddled thinking and memory problems, and my thermostat is off (I'm usually too cold, though occasionally too warm in comparison to others). For various reasons, I am beginning to think I have Lupus rather than just RA. But some of the Still's Disease symptoms fit as well. I am interested in whether any of you have had confusion about your diagnosis in the beginning. I am currently taking Plaquenil, Voltaren, Methotrexate, Ultracet, Nortriptyline (low dose for pain), Levothyroxine (also have Hashimoto's Thyroiditis), and Lisinopril (hypertension). I am really depressed to be feeling so badly again. I am recently divorced (in large part, I feel, due to my illness) so it is very frightening financially in addition to feeling terrible. I had thought perhaps this was my thyroid disease causing my symptoms, but my regular doctor called me today with my test results and my thyroid tests were all normal, but my C-Reactive Protein is 11.5, up from 1.6 at its lowest when I was in remission. I called my rheumatologist and was told I can't get in until August! (I already have an appointment scheduled in September.) My plan is to go see my regular doctor again and see what she thinks and whether she can get me into the rheumatologist sooner, though I am pretty upset that I can't just get in on my own since I have been seeing him for 6 years and he also sees my son (JRA). Both of my children also have many symptoms that point to either Lupus or maybe Still's Disease as well. Any support or advice would be greatly appreciated. Jo Indianapolis, IN --------------------------------- Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Quote Link to comment Share on other sites More sharing options...
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