Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Holly, it's tough sometimes, but you don't have many choices right now. From your post, I have the idea that your doc isn't helping enough or not being aggressive enough. You should have seen some improvement already but the doc waited too long. If you were diagnosed in November, you should have already been on MTX or more since then. How much MTX are you taking now? What about Prednisone? There are many more options available, so you shouldn't be suffering like I did 16 years ago. I was bed-ridden for almost a year and home-bound for 2 years. My Rheumy has a 'cocktail' that he administers to the patients that are having a bad time, and they usually respond within 24 hours. Maybe you need a different doctor. That's my 2 cents worth. Dennis [ ] How do you deal? >I have made many posts here, and you all have been very supportive and > caring. My name is Holly and I am 26, married and a mother of a 2 > year old son, and a 6 year old son. I have recently been diagnosed > with Systemic Lupus, RA, Fibromyalgia, and Chronic fatigue disorder. > I had to quit court reporting school (after 3 years) because my > fingers were so swollen I couldn't bend them. I am in so much pain on > a daily basis. I can't hardly get out of bed, can't play with my > kids, can't find meds that work. I was on 5 medications (22 pills a > day) while my sed rate tripled. I am so upset. My doctor gave me > Lortabs for the pain which is a joke. I just started methotrexate > friday. How do you all stay so positive about all this. I was just > diagnosed last November so I know it will take time, but I am not > doing very well with this at all. I have shoe inserts, I use a cane > to help keep weight off my right foot (the pain is horrible), and I > have arthritis gloves that cover my wrists all the way to my > fingertips, and nothing helps. I am so depressed right now. I don't > know how to make adjustments or let others help me, I am very > independent. But if I don't I pay for it. Any suggestion on what > helped you and what you did would be greatly appreciated. I know I > shouldn't feel hopeless and that it takes a while to find medications > that work, but I do feel hopeless, exhausted, and in so much pain. > Please--any ideas? Thank you so much, Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Thanks Dennis! I am on 10 mg of metho and in 3 more weeks it will be upped to 20. I was previously on plaquenil, prednisone, sulfalazine, and volteran. Holly betnden@... wrote: Holly, it's tough sometimes, but you don't have many choices right now. From your post, I have the idea that your doc isn't helping enough or not being aggressive enough. You should have seen some improvement already but the doc waited too long. If you were diagnosed in November, you should have already been on MTX or more since then. How much MTX are you taking now? What about Prednisone? There are many more options available, so you shouldn't be suffering like I did 16 years ago. I was bed-ridden for almost a year and home-bound for 2 years. My Rheumy has a 'cocktail' that he administers to the patients that are having a bad time, and they usually respond within 24 hours. Maybe you need a different doctor. That's my 2 cents worth. Dennis [ ] How do you deal? >I have made many posts here, and you all have been very supportive and > caring. My name is Holly and I am 26, married and a mother of a 2 > year old son, and a 6 year old son. I have recently been diagnosed > with Systemic Lupus, RA, Fibromyalgia, and Chronic fatigue disorder. > I had to quit court reporting school (after 3 years) because my > fingers were so swollen I couldn't bend them. I am in so much pain on > a daily basis. I can't hardly get out of bed, can't play with my > kids, can't find meds that work. I was on 5 medications (22 pills a > day) while my sed rate tripled. I am so upset. My doctor gave me > Lortabs for the pain which is a joke. I just started methotrexate > friday. How do you all stay so positive about all this. I was just > diagnosed last November so I know it will take time, but I am not > doing very well with this at all. I have shoe inserts, I use a cane > to help keep weight off my right foot (the pain is horrible), and I > have arthritis gloves that cover my wrists all the way to my > fingertips, and nothing helps. I am so depressed right now. I don't > know how to make adjustments or let others help me, I am very > independent. But if I don't I pay for it. Any suggestion on what > helped you and what you did would be greatly appreciated. I know I > shouldn't feel hopeless and that it takes a while to find medications > that work, but I do feel hopeless, exhausted, and in so much pain. > Please--any ideas? Thank you so much, Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Holly, I know it's hard, but just try to keep a positive attitude. I remember when I felt the same way that you do now. Chronic pain can make you feel so depressed. But hopefully your rheumy will soon find the right combination of meds that will make you feel better. You just keep complaining until that happens. Enbrel seems to be my magic medication. I hope you find yours soon. In the meantime, you have a lot to put up with. Try not to let it get you down. Just hang in the best you can. Sue On Monday, March 6, 2006, at 09:51 PM, Holly wrote: > Any suggestion on what > helped you and what you did would be greatly appreciated. I know I > shouldn't feel hopeless and that it takes a while to find medications > that work, but I do feel hopeless, exhausted, and in so much pain. > Please--any ideas? Thank you so much, Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 In a message dated 3/6/2006 8:57:20 PM Central Standard Time, hollybgroovin2003@... writes: I am so depressed right now. I don't know how to make adjustments or let others help me, I am very independent. But if I don't I pay for it. Any suggestion on what helped you and what you did would be greatly appreciated. I know I shouldn't feel hopeless and that it takes a while to find medications that work, but I do feel hopeless, exhausted, and in so much pain. Please--any ideas? Thank you so much, Holly Holly~HUGS~ All of us know how you feel, and have been where you are... Depression is also a part of having RA or any other disease. Please dont give up! There is help out there it just takes time to find it. Being a mom of 2 young kids myself (ages 7 and 2), my heart goes out to you. Speak to your doc about how you are feeling. If you dont feel comfortable doing that, maybe a family member or friend will listen? Most important is making little adjustments to your life so that you can manage better. It will be tough at first, trust me, but you and your family will be better off in the long run. Ask people for help when you need it. Overdoing yourself isnt going to help, it will only make the next day harder. Believe me i know! Ok this is enough of a novel sorry. Feel free to email me anytime~ _N2Kids@..._ (mailto:N2Kids@...) for any reason. HUGS from PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Hi Holly, I'm too new to this myself to be able to offer any concrete advice, but I wanted to say, I certainly understand what you're going through! --- In , " Holly " <hollybgroovin2003@...> wrote: > > I have made many posts here, and you all have been very supportive and > caring. My name is Holly and I am 26, married and a mother of a 2 > year old son, and a 6 year old son. I have recently been diagnosed > with Systemic Lupus, RA, Fibromyalgia, and Chronic fatigue disorder. > I had to quit court reporting school (after 3 years) because my > fingers were so swollen I couldn't bend them. I am in so much pain on > a daily basis. I can't hardly get out of bed, can't play with my > kids, can't find meds that work. I was on 5 medications (22 pills a > day) while my sed rate tripled. I am so upset. My doctor gave me > Lortabs for the pain which is a joke. I just started methotrexate > friday. How do you all stay so positive about all this. I was just > diagnosed last November so I know it will take time, but I am not > doing very well with this at all. I have shoe inserts, I use a cane > to help keep weight off my right foot (the pain is horrible), and I > have arthritis gloves that cover my wrists all the way to my > fingertips, and nothing helps. I am so depressed right now. I don't > know how to make adjustments or let others help me, I am very > independent. But if I don't I pay for it. Any suggestion on what > helped you and what you did would be greatly appreciated. I know I > shouldn't feel hopeless and that it takes a while to find medications > that work, but I do feel hopeless, exhausted, and in so much pain. > Please--any ideas? Thank you so much, Holly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Hi Holly: That you feel hopeless is understandable. What you are going through right now is inhuman. Give MTX a little more time to take effect; it will help you a great deal. Also, try to find a rheumatologist; good ones really know what works. I bet soon, you will be able to go back to court reporting school and playing with your sons. I know what I am talking about, for almost one year, I was miserable, I wouldn't let people shake hands [Oh, such agony], couldn't drive, write, not even brush my teeth without being in pain. Today, I am back to normal, I can even play the piano again as well [never was great at it ] as I did before. Good luck. Randall <krandall@...> wrote: Hi Holly, I'm too new to this myself to be able to offer any concrete advice, but I wanted to say, I certainly understand what you're going through! --- In , " Holly " <hollybgroovin2003@...> wrote: > > I have made many posts here, and you all have been very supportive and > caring. My name is Holly and I am 26, married and a mother of a 2 > year old son, and a 6 year old son. I have recently been diagnosed > with Systemic Lupus, RA, Fibromyalgia, and Chronic fatigue disorder. > I had to quit court reporting school (after 3 years) because my > fingers were so swollen I couldn't bend them. I am in so much pain on > a daily basis. I can't hardly get out of bed, can't play with my > kids, can't find meds that work. I was on 5 medications (22 pills a > day) while my sed rate tripled. I am so upset. My doctor gave me > Lortabs for the pain which is a joke. I just started methotrexate > friday. How do you all stay so positive about all this. I was just > diagnosed last November so I know it will take time, but I am not > doing very well with this at all. I have shoe inserts, I use a cane > to help keep weight off my right foot (the pain is horrible), and I > have arthritis gloves that cover my wrists all the way to my > fingertips, and nothing helps. I am so depressed right now. I don't > know how to make adjustments or let others help me, I am very > independent. But if I don't I pay for it. Any suggestion on what > helped you and what you did would be greatly appreciated. I know I > shouldn't feel hopeless and that it takes a while to find medications > that work, but I do feel hopeless, exhausted, and in so much pain. > Please--any ideas? Thank you so much, Holly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Holly, Being newly diagnosed, dealing with all that has happened to you is not easy. I too was young when I was diagnosed (I'm now 51) and I remember how difficult it was to take care of my children and do all that I had to do in spite of all the pain and fatigue. I deal because I don't have much of a choice. Although it is difficult to put on a smile when feeling really bad, I never wanted to be miserable to be around so I suffered silently. I still do. I don't like to complain, so I'd try to find humor in my situation. Some days were more difficult than others, but I just hated to take it out on my kids. It's not their fault and it's not mine. I had good friend that helped me a lot with my kids. As a result I doubt my kids really knew just how sick I was, but that's ok. I don't want them to worry. I've done enough of that. Worrying I've found just causes me more pain and I've found that most things I spent endless time worrying about never happened. Just be good to yourself and get rest when you need it. Even if you lay in bed with your kids and read to them you'll be getting rest. You'd be amazed at how much help your kids can be. When mine were young the meds we have today weren't available and I honestly thought I'd die very young. My first rheumatologist told me I'd be in a wheelchair before I was 30. With that kind of optimism, I didn't think my prognosis for a long life was very good LOL! I didn't have the information available to me then so I had no idea what was ahead of me. All I wanted to do was to make sure my children could take care of themselves the best they could. The best way I deal is to stay positive. The meds we have today can make a big difference if you find the right cocktail. Enbrel has made a huge difference in my life. Knee replacements have kept me walking. Many new drug studies are being done for other meds that may put us all into remission. That hope is what keeps me going. I try not to dwell on what I've lost. It just makes me depressed. I've also found that no matter how bad I think I've got it. there is someone worse. Once you find something that helps, it will get easier. Right now you're in that horrible stage of trying to find anything that will give you relief. I hope the MTX kicks in quick and gives you relief. a On Mar 6, 2006, at 9:51 PM, Holly wrote: > I have made many posts here, and you all have been very supportive and > caring. My name is Holly and I am 26, married and a mother of a 2 > year old son, and a 6 year old son. I have recently been diagnosed > with Systemic Lupus, RA, Fibromyalgia, and Chronic fatigue disorder. > I had to quit court reporting school (after 3 years) because my > fingers were so swollen I couldn't bend them. I am in so much pain on > a daily basis. I can't hardly get out of bed, can't play with my > kids, can't find meds that work. I was on 5 medications (22 pills a > day) while my sed rate tripled. I am so upset. My doctor gave me > Lortabs for the pain which is a joke. I just started methotrexate > friday. How do you all stay so positive about all this. I was just > diagnosed last November so I know it will take time, but I am not > doing very well with this at all. I have shoe inserts, I use a cane > to help keep weight off my right foot (the pain is horrible), and I > have arthritis gloves that cover my wrists all the way to my > fingertips, and nothing helps. I am so depressed right now. I don't > know how to make adjustments or let others help me, I am very > independent. But if I don't I pay for it. Any suggestion on what > helped you and what you did would be greatly appreciated. I know I > shouldn't feel hopeless and that it takes a while to find medications > that work, but I do feel hopeless, exhausted, and in so much pain. > Please--any ideas? Thank you so much, Holly > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Wow a! Well said. You touched on a lot of it. I know I try to find humor in all of this and it is so true about someone having it or something so much worse. I try to remind myself that flares will pass. Of course it is so hard when you are in a MEGA flare to deal with all the pain and just plain yuk to misery that comes with it and no help in sight. I rather appreciated you mentioning about spending time reading or what have you with the kids in bed. Kids are so resilent and such a blessing and we can bond with them despite our limitations! --- a Papola <a54@...> wrote: > Holly, > > Being newly diagnosed, dealing with all that has > happened to you is > not easy. I too was young > when I was diagnosed (I'm now 51) and I remember how > difficult it was > to take care of my > children and do all that I had to do in spite of all > the pain and > fatigue. > > I deal because I don't have much of a choice. > Although it is > difficult to put on a smile when > feeling really bad, I never wanted to be miserable > to be around so I > suffered silently. I still do. > I don't like to complain, so I'd try to find humor > in my situation. > Some days were more difficult > than others, but I just hated to take it out on my > kids. It's not > their fault and it's not mine. > I had good friend that helped me a lot with my kids. > > As a result I doubt my kids really knew just how > sick I was, but > that's ok. I don't want them > to worry. I've done enough of that. Worrying I've > found just causes > me more pain and I've > found that most things I spent endless time worrying > about never > happened. > > Just be good to yourself and get rest when you need > it. Even if you > lay in bed with your kids and > read to them you'll be getting rest. You'd be amazed > at how much help > your kids can be. > > When mine were young the meds we have today weren't > available and I > honestly thought I'd > die very young. My first rheumatologist told me I'd > be in a > wheelchair before I was 30. > With that kind of optimism, I didn't think my > prognosis for a long > life was very good LOL! > I didn't have the information available to me then > so I had no idea > what was ahead of me. > All I wanted to do was to make sure my children > could take care of > themselves the best they > could. > > The best way I deal is to stay positive. The meds we > have today can > make a big difference > if you find the right cocktail. Enbrel has made a > huge difference in > my life. Knee replacements > have kept me walking. Many new drug studies are > being done for other > meds that may > put us all into remission. That hope is what keeps > me going. > I try not to dwell on what I've lost. It just makes > me depressed. > I've also found that no matter how > bad I think I've got it. there is someone worse. > > > Once you find something that helps, it will get > easier. Right now > you're in that horrible stage > of trying to find anything that will give you > relief. I hope the MTX > kicks in quick and gives you relief. > > a > > > > > > > On Mar 6, 2006, at 9:51 PM, Holly wrote: > > > I have made many posts here, and you all have been > very supportive and > > caring. My name is Holly and I am 26, married and > a mother of a 2 > > year old son, and a 6 year old son. I have > recently been diagnosed > > with Systemic Lupus, RA, Fibromyalgia, and Chronic > fatigue disorder. > > I had to quit court reporting school (after 3 > years) because my > > fingers were so swollen I couldn't bend them. I > am in so much pain on > > a daily basis. I can't hardly get out of bed, > can't play with my > > kids, can't find meds that work. I was on 5 > medications (22 pills a > > day) while my sed rate tripled. I am so upset. > My doctor gave me > > Lortabs for the pain which is a joke. I just > started methotrexate > > friday. How do you all stay so positive about all > this. I was just > > diagnosed last November so I know it will take > time, but I am not > > doing very well with this at all. I have shoe > inserts, I use a cane > > to help keep weight off my right foot (the pain is > horrible), and I > > have arthritis gloves that cover my wrists all the > way to my > > fingertips, and nothing helps. I am so depressed > right now. I don't > > know how to make adjustments or let others help > me, I am very > > independent. But if I don't I pay for it. Any > suggestion on what > > helped you and what you did would be greatly > appreciated. I know I > > shouldn't feel hopeless and that it takes a while > to find medications > > that work, but I do feel hopeless, exhausted, and > in so much pain. > > Please--any ideas? Thank you so > much, Holly > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Holly, if you can afford it, you could put a TV and DVD in your bedroom. My kids come and watch with me in there and it's a special treat for them, rather than feeling deprived because Mom's in bed so much. > > > I have made many posts here, and you all have been very supportive and > > caring. My name is Holly and I am 26, married and a mother of a 2 > > year old son, and a 6 year old son. I have recently been diagnosed > > with Systemic Lupus, RA, Fibromyalgia, and Chronic fatigue disorder. > > I had to quit court reporting school (after 3 years) because my > > fingers were so swollen I couldn't bend them. I am in so much pain on > > a daily basis. I can't hardly get out of bed, can't play with my > > kids, can't find meds that work. I was on 5 medications (22 pills a > > day) while my sed rate tripled. I am so upset. My doctor gave me > > Lortabs for the pain which is a joke. I just started methotrexate > > friday. How do you all stay so positive about all this. I was just > > diagnosed last November so I know it will take time, but I am not > > doing very well with this at all. I have shoe inserts, I use a cane > > to help keep weight off my right foot (the pain is horrible), and I > > have arthritis gloves that cover my wrists all the way to my > > fingertips, and nothing helps. I am so depressed right now. I don't > > know how to make adjustments or let others help me, I am very > > independent. But if I don't I pay for it. Any suggestion on what > > helped you and what you did would be greatly appreciated. I know I > > shouldn't feel hopeless and that it takes a while to find medications > > that work, but I do feel hopeless, exhausted, and in so much pain. > > Please--any ideas? Thank you so much, Holly > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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