Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Me personally have moderate to severe pain on a daily basis. Only when i medicate myself with prednisone and darvocet do i have no pain for a few hrs...then it comes roaring back twice as bad since i over do it when i do feel good. Viscious cycle that i'seem to be stuck in. Anyone else have this happen? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 > > You know, every one of us is going through tough times. And, short of a miraculous healing from the Almighty or a revolutionary breakthrough in science, it's not like the road ahead is looking better for any of us. We all live with pain on a daily basis I have to disagree with your comments above. Many of us with RA are doing very well, thanks to interventions of all sorts. I don't live with pain on a daily basis. Not any more. Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 I've always wondered about the ones that report no pain when dealing with RA. Of the ones I know personally, all have moderate to severe pain constantly. So, a question for the group. How many, or better yet, what percentage of us have no pain, moderate pain, or severe pain? I would think that those of us with aggressive RA would have more pain than the others. I know mine brings tears to my eyes. Dennis in Eastexas " It's not Rocket Surgery " [ ] I have to disagree > >> >> You know, every one of us is going through tough times. And, short > of a miraculous healing from the Almighty or a revolutionary > breakthrough in science, it's not like the road ahead is looking better > for any of us. We all live with pain on a daily basis > > > I have to disagree with your comments above. Many of us with RA are > doing very well, thanks to interventions of all sorts. I don't live > with pain on a daily basis. Not any more. > > Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 I'm one of the lucky ones, too, Sierra. Enbrel is doing the trick for me. I wish that everyone here could find relief from their pain. Sue On Thursday, January 11, 2007, at 08:33 PM, snowdrift52003 wrote: > > I have to disagree with your comments above. Many of us with RA are > doing very well, thanks to interventions of all sorts. I don't live > with pain on a daily basis. Not any more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 I have very little pain from my RA, although it was really aggressive in the beginning and brought tears to my eyes. My RF factor and SED rate were very high. I think that aggressive treatment from the beginning is responsible. I had a great rheumy who kept working until he got the ideal treatment for me. Each of us is different and respond to medications so differently, so the rheumy has to experiment and keep trying different treatments until hopefully one works. Once you have a lot of joint damage, that probably causes a lot of pain. I think that the window of opportunity at the beginning of the disease should be pounced upon to hopefully prevent joint damage. Sue On Thursday, January 11, 2007, at 10:32 PM, betnden@... wrote: > I've always wondered about the ones that report no pain when dealing > with > RA. Of the ones I know personally, all have moderate to severe pain > constantly. So, a question for the group. How many, or better yet, what > percentage of us have no pain, moderate pain, or severe pain? I would > think > that those of us with aggressive RA would have more pain than the > others. I > know mine brings tears to my eyes. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 In regards to pain and RA mine ranges from moderate on a good day to extreme on my bad days. As of yet I have found little that relieves the pain on bad days. I also find it hard to believe that someone with RA would have little to no pain, unless their pain threshold is superhuman, lol. Patti in Chicago " Taking it one day at a time! " --------------------------------- Have a burning question? Go to Answers and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 I live with moderate to severe pain every day. When I was on the Enbrel, Plaquinal, MTX, and increasingly higher doses of Prednisone, I had some control. The pain didn't go completely away, but it made the severe pain a little more tolerable. Now that I'm off all the RA meds, my docs have had to increase the amount of pain meds I take on a daily basis. I don't like that one bit. The mother of my sister-in-law has RA. She sees me with one or more joimts braced, or walking with a crutch, or not participating in family get togethers, she asks me what my problem is. She says that she has RA and only takes low doses of MTX and OTC NSAIDs. She has a few nodules on her hands that come and go. I just look at her square in the face and tell her to count her blessings. I'm thrilled that she is not having the difficulties that I have. Things could be much worse and there is a very good chance that things will get worse. Another friend that I worked with also has RA. He had to slow down his work schedule because his pain, stiffness, and fatigue had been getting out of control. It's too bad that we can't let other people actually " feel " what we go through. To not sympathize, but to " empathize " . Sometimes it seems that those with low pain RA can be just as rude or ignorant as those who don't have it. I don't mean to upset or place blame on anyone. Please don't take this post that way. It is not my intention to do so. I guess it's just a sore spot with me that all of us have had to deal with in our everyday life. It's that " you don't look sick " senario. Gentle hugs and prayers to all,,,,,,Marina > > I've always wondered about the ones that report no pain when dealing with > RA. Of the ones I know personally, all have moderate to severe pain > constantly. So, a question for the group. How many, or better yet, what > percentage of us have no pain, moderate pain, or severe pain? I would think > that those of us with aggressive RA would have more pain than the others. I > know mine brings tears to my eyes. > > Dennis in Eastexas > " It's not Rocket Surgery " > >> > > --- In , Pou <jenncrew@> wrote: > >> > >> You know, every one of us is going through tough times. And, short > > of a miraculous healing from the Almighty or a revolutionary > > breakthrough in science, it's not like the road ahead is looking better > > for any of us. We all live with pain on a daily basis > > > > > > I have to disagree with your comments above. Many of us with RA are > > doing very well, thanks to interventions of all sorts. I don't live > > with pain on a daily basis. Not any more. > > > > Sierra > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 I have very little pain on a daily basis. I was diagnosed very quickly and only had severe pain for about 4 weeks. I had x-rays of all of my joints with my first round of tests and they showed no joint damage at all yet. I wonder if that is the difference, the fact that I received treatment so fast. At my doctors appointment last week my doctor thought I might be in remission and aside from my monthly blood work, I do not need to go back for three months. I have to say, I have had 3 children without any pain meds and I would do it 10 more times before I would want to feel that horrible joint pain again. I am so sorry that some of you have to deal with it every day. You are my heroes! Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 I have moderate to severe RA. I have very little pain to moderate pain. However I am one of these people with an extremely high pain threshold. So I rarely take any pain meds. If I do I am in bed!! Today is one of those days!! For the past two months my right hip has been bothering me. Went to see the new rheummy and she blew me off and told me I did not have RA but I did have bad bursitis. Did labs and scheduled me to return in a month to see the Nurse Practitioner for an injection into my hip. I left with a script for Lodine XL and that's it!! When I went for my next appnt, it was a mess..spent 2 hrs in financial office cause this medical center sucks and can't seem to bill right. Then they said I do not have ins....which I do...my plan changed the first of the year. So after all this I missed my appnt!!! So I rescheduled and it will be another month! In the meantime my right knee started swelling and huring three days ago. The knee calmed down today...but now the right ankle, left elbow and left wrist are starting to act up!! I would call the rheummy.....but hate to waste gas driving there to get nothing but BS from these people. Toni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 I have what I consider severe pain from RA. For me that means that without medication I can barely walk, HOWEVER, with the help of Prednisone you would never know that I even have RA. That makes me one of the lucky ones most of the time. If I go below 5 mg of Pred then the pain comes back with a vengence. People at work, and even my friends, have no idea what I go through when they try lowering the dose, they just think I'm having 'a bad day'. Today I'll call my rheumy and 'tell' him that I'm going back up on my dosage AGAIN. It really ticks me off too, I was down to 1 mg. for about the 5th time. There is another issue with the Pred, if I go to 15 mg even for a short period of time then my right hand breaks out with terrible eczema. which takes weeks to go away. That is surprising since originally I was on the pred for the eczema; but a dermatologist told me that often happens with prolonged use. Until I see my rheumy at the end of Feb I'll stay on 5 mg. ; maybe he will increase my Imuran or Plaqenil. I don't know which one does what, but I believe he wanted me on the Imuran to get off the pred for good, so maybe that dosage needs to be increased. I sure would like to get off Prednisone permanently, but not enough to suffer with such awful pain. Patsy El Mirage, AZ DX 2005 Stage 1 PBC AIH/SLE/RA/COPD Just a woman of letters.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 I was diagnosed with RA about 6 months ago, but had it undiagnosed for about 2 years (if not more). I have joint damage to my fifth toes thus far. I am off prednisone, take a NSAID for pain/inflammation and 15 mg. mtx weekly. I went from not being able to open jars, get out of a car or my bed, have sex with my husband to being able to do ALL of these things with only MINIMUM difficulty. I am even back to doing yoga and aerobic exercise. I do have significant fatigue and headache for a day or so after taking the mtx, however. I am just getting back into my fitness routine and I fatigue easily and need to take breaks, but my fitness is IMPROVING every day... For me, I treat the RA AGGRESIVELY but then I put the blinders on and keep doing my absolute best with the cards I am dealt. I stay positive and make gratitude lists daily. I also listen to meditiations on mp3 that focus on positive thinking. I keep my mind out of the past and the future and focus on the present. Just my take at the moment.... Annie _________________________________________________________________ Fixing up the home? Live Search can help http://imagine-windowslive.com/search/kits/default.aspx?kit=improve & locale=en-US\ & source=hmemailtaglinenov06 & FORM=WLMTAG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Sierra: That's wonderful to hear! I hope I get to that place soon. So far, mine has just gotten worse. I was diagnosed about 18 months ago. Guess it just takes longer than I had hoped to find the right combo of meds that work. Thanks for your encouragement and hope. in Texas snowdrift52003 <snowdrift52003@...> wrote: > > You know, every one of us is going through tough times. And, short of a miraculous healing from the Almighty or a revolutionary breakthrough in science, it's not like the road ahead is looking better for any of us. We all live with pain on a daily basis I have to disagree with your comments above. Many of us with RA are doing very well, thanks to interventions of all sorts. I don't live with pain on a daily basis. Not any more. Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Dennis, You are RIGHT ON there. Like I told Sierra, I was only diagnosed about 18 months ago. I've been on Plaquenil for almost a year and MTX for more than 6 months. (I tried NSAID's first with minimal success). I STILL suffer inflammation constantly and flare ups that bring me to tears at least once every week or two. My RA is progressively getting worse. The Plaquenil seemed to make things better for a little while then I kind of started regressing with my symptoms, then was put on MTX, symptoms seemed to ease up for awhile, then started regressing again. I still have not asked for any pain meds from my rheumy because I want to stay off of heavy stuff as long as I possibly can. I work full-time in a law office, have four kids who all have extra-curricular activities AND my entire family is very active in our church, so I just use ice packs, take OTC pain meds and pray through my tears for the pain to go away. in Texas betnden@... wrote: I've always wondered about the ones that report no pain when dealing with RA. Of the ones I know personally, all have moderate to severe pain constantly. So, a question for the group. How many, or better yet, what percentage of us have no pain, moderate pain, or severe pain? I would think that those of us with aggressive RA would have more pain than the others. I know mine brings tears to my eyes. Dennis in Eastexas " It's not Rocket Surgery " [ ] I have to disagree > >> >> You know, every one of us is going through tough times. And, short > of a miraculous healing from the Almighty or a revolutionary > breakthrough in science, it's not like the road ahead is looking better > for any of us. We all live with pain on a daily basis > > > I have to disagree with your comments above. Many of us with RA are > doing very well, thanks to interventions of all sorts. I don't live > with pain on a daily basis. Not any more. > > Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 I was diagnosed in Oct., started with 3 MTX pills a week and am up to 8. My hands are better, and most of the time I am in no pain or barely any pain. I don't worry about long term as I too am living day to day as much in the now as I can. I read as much as possible about treatment to be sure I'm doing all I can for my part and I follow the drs. instructions.He said I have severe aggressive form, so I am making the most out of what I have with as much travel and fun as I can afford to do. I only know certainly that now I'm pretty much OK. I have a nodule on my elbow and some on my knuckles but not obvious. Annie Rose <annierose77@...> wrote: I was diagnosed with RA about 6 months ago, but had it undiagnosed for about 2 years (if not more). I have joint damage to my fifth toes thus far. I am off prednisone, take a NSAID for pain/inflammation and 15 mg. mtx weekly. I went from not being able to open jars, get out of a car or my bed, have sex with my husband to being able to do ALL of these things with only MINIMUM difficulty. I am even back to doing yoga and aerobic exercise. I do have significant fatigue and headache for a day or so after taking the mtx, however. I am just getting back into my fitness routine and I fatigue easily and need to take breaks, but my fitness is IMPROVING every day... For me, I treat the RA AGGRESIVELY but then I put the blinders on and keep doing my absolute best with the cards I am dealt. I stay positive and make gratitude lists daily. I also listen to meditiations on mp3 that focus on positive thinking. I keep my mind out of the past and the future and focus on the present. Just my take at the moment.... Annie __________________________________________________________ Fixing up the home? Live Search can help http://imagine-windowslive.com/search/kits/default.aspx?kit=improve & locale=en-US\ & source=hmemailtaglinenov06 & FORM=WLMTAG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Marina, I'm sorry that you're suffering such pain, and it does make one feel worse when a friend or relative doesn't really get it and thinks you should feel less pain than you actually feel. You may have already mentioned this in a previous post, but why did you have to go off the prednisone, embrel, MTX, etc.? Were you having bad side effects? Take care -- I hope today is a good day. -- In , " marina_troi " <marina_troi@...> wrote: > I live with moderate to severe pain every day. When I was on the > Enbrel, Plaquinal, MTX, and increasingly higher doses of Prednisone, I had some control. > The mother of my > sister-in-law has RA. She sees me with one or more joimts braced, > or walking with a crutch, or not participating in family get > togethers, she asks me what my problem is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Hi all! I'm in moderate to severe pain everyday. I never start a day with less than moderate pain and am usually in worse pain by the end of the day. I can't tolerate steroids higher 10mg, which only take the edge off, so until I find a drug that works, I'm afraid constant pain will be by companion. Lori http://users.adelphia.net/~tmihalko/Stitching/index.html [ ] I have to disagree > >> >> You know, every one of us is going through tough times. And, short > of a miraculous healing from the Almighty or a revolutionary > breakthrough in science, it's not like the road ahead is looking better > for any of us. We all live with pain on a daily basis > > > I have to disagree with your comments above. Many of us with RA are > doing very well, thanks to interventions of all sorts. I don't live > with pain on a daily basis. Not any more. > > Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Hi everyone, I just wanted to add my 2 cents to this discussion. : I disagree as well, but I do understand your pain. My road ahead is filled with unknowns and questions. I feel blessed every day that my pain is controlled. I have more discomfort and fatigue than pain these days, thanks to my meds and a wonderful hubby who does alot for me. Dennis: Having no pain or moderate pain does not mean we do not have severe RA. My rheumy describes mine as severe RA in medication-induced remission, but at risk for medication tolerance or side effects. Recently my hubby has forced me to go to the dentist since I had not gone in 6 years. (due to money & fear of pain). Today I got 2 fillings and, due to my increased medication tolerance, needed 4 shots of Novacaine. Also, apparently 3 of my 4 wisdom teeth came in without me knowing it -- the 4th one was hell recently. My dentist is amazed that I didn't drag myself in before -- I just attributed the pain to TMJ/ rheumatoid nodules. Boy was I wrong! Take care, Steph in VA (going to take a nap now) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ " Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has. " (Margaret Mead) AmeriCorps Alums -- We're Still Getting Things Done --------------------------------- It's here! Your new message! Get new email alerts with the free Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Dianne: I had been complaining about severe fatigue for 2 years. Doc said I was depressed, but the depression meds didn't help much. I finally just got off of them. During this time, I also had alot of what I thought were just muscle aches and pains. A general feeling of not being well. Then, we built a house and moved in 2004. That very weekend, the joint pain localized and revealed itself with a nasty bite. Guess that was my " onset " . I thought I just overdid it with the moving and all the stress. I also had a horrible work environment during that same time, which was another terrible stresser. Anyway, the joint pain and fatigue kept recurring and getting worse. I started trying to find answers. I wasn't diagnosed with RA until around mid-2005. I went straight to a rheumy then, started with NSAID's, moved to Plaquenil after 3-6 mos. then added MTX about 6-7 mos. ago. Joint damage was already visible in my hand x-rays 6 months ago. There are times when my shoulder joints are so bad, I can't even lift my arms. Most days, the pain is a nuisance but bearable, meaning I can still function. Other times, I'm in bed all day and the pain becomes so excruciating that I break down and cry like a baby. I hurt so bad all over, that even my skin becomes supersensitive and I can't stand to be touched. I read in a book on RA that there are different levels. Level One is those who show initial symptoms, are diagnosed and treated...then go into remission and NEVER suffer symptoms again. Level TWO are those who go in and out of remission at different times. They may be in remission for 2-5 years, then go through another spurt of symptoms. Then there are Level THREE people. These folks never see a remission. They live with a very aggessive form of RA where they stay inflamed almost constantly and suffer a great deal of pain. Level THREE's have the greatest chance of deformity and other complications from RA. Guess that would explain why some people disagree with the outlook ahead I expressed in an earlier e-mail. They are not facing the same outcome I am. But, Sierra's e-mail did give me hope that other meds I might try could put me in remission. I certainly hope I find one that does it soon. in Texas Dianneis30@... wrote: I have very little pain on a daily basis. I was diagnosed very quickly and only had severe pain for about 4 weeks. I had x-rays of all of my joints with my first round of tests and they showed no joint damage at all yet. I wonder if that is the difference, the fact that I received treatment so fast. At my doctors appointment last week my doctor thought I might be in remission and aside from my monthly blood work, I do not need to go back for three months. I have to say, I have had 3 children without any pain meds and I would do it 10 more times before I would want to feel that horrible joint pain again. I am so sorry that some of you have to deal with it every day. You are my heroes! Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Steph: Glad to hear that you are doing so well. Like I said before, hearing from those who are doing well with their meds gives me hope for the future. in Texas DeNicola- <stephdenicola@...> wrote: Hi everyone, I just wanted to add my 2 cents to this discussion. : I disagree as well, but I do understand your pain. My road ahead is filled with unknowns and questions. I feel blessed every day that my pain is controlled. I have more discomfort and fatigue than pain these days, thanks to my meds and a wonderful hubby who does alot for me. Dennis: Having no pain or moderate pain does not mean we do not have severe RA. My rheumy describes mine as severe RA in medication-induced remission, but at risk for medication tolerance or side effects. Recently my hubby has forced me to go to the dentist since I had not gone in 6 years. (due to money & fear of pain). Today I got 2 fillings and, due to my increased medication tolerance, needed 4 shots of Novacaine. Also, apparently 3 of my 4 wisdom teeth came in without me knowing it -- the 4th one was hell recently. My dentist is amazed that I didn't drag myself in before -- I just attributed the pain to TMJ/ rheumatoid nodules. Boy was I wrong! Take care, Steph in VA (going to take a nap now) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ " Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has. " (Margaret Mead) AmeriCorps Alums -- We're Still Getting Things Done --------------------------------- It's here! Your new message! Get new email alerts with the free Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Marina I have had extreme pain and mild to moderate pain in RA. But I told my Mom once that I just felt like crying like a baby when it was extreme. One day I couldn't even sit still in church and had to leave and wait for my family in the car. And you are right while we may not look sick we may feel like death warmed over. I am happy that there are people out there who can control their RA with meds and get on with their lives but sometimes the drugs aren't the miracle cure they claim to be on the commercials and that can be misleading to the public. One time I was at a reception hall and my sister said, so and so has RA and they do fine and have a great outlook. She introduced me and the lady went on and on about exercise and how it is all a state of mind and that you can't let it get you down. Now my sister hears this and she probably compares me to this other lady and it just broke my heart and made me feel like the pain it was all in my head. Maybe I am just too emotional but it hurt my feelings instead of making me feel better. Joy marina_troi <marina_troi@...> wrote: I live with moderate to severe pain every day. When I was on the Enbrel, Plaquinal, MTX, and increasingly higher doses of Prednisone, I had some control. The pain didn't go completely away, but it made the severe pain a little more tolerable. Now that I'm off all the RA meds, my docs have had to increase the amount of pain meds I take on a daily basis. I don't like that one bit. The mother of my sister-in-law has RA. She sees me with one or more joimts braced, or walking with a crutch, or not participating in family get togethers, she asks me what my problem is. She says that she has RA and only takes low doses of MTX and OTC NSAIDs. She has a few nodules on her hands that come and go. I just look at her square in the face and tell her to count her blessings. I'm thrilled that she is not having the difficulties that I have. Things could be much worse and there is a very good chance that things will get worse. Another friend that I worked with also has RA. He had to slow down his work schedule because his pain, stiffness, and fatigue had been getting out of control. It's too bad that we can't let other people actually " feel " what we go through. To not sympathize, but to " empathize " . Sometimes it seems that those with low pain RA can be just as rude or ignorant as those who don't have it. I don't mean to upset or place blame on anyone. Please don't take this post that way. It is not my intention to do so. I guess it's just a sore spot with me that all of us have had to deal with in our everyday life. It's that " you don't look sick " senario. Gentle hugs and prayers to all,,,,,,Marina > > I've always wondered about the ones that report no pain when dealing with > RA. Of the ones I know personally, all have moderate to severe pain > constantly. So, a question for the group. How many, or better yet, what > percentage of us have no pain, moderate pain, or severe pain? I would think > that those of us with aggressive RA would have more pain than the others. I > know mine brings tears to my eyes. > > Dennis in Eastexas > " It's not Rocket Surgery " > >> > > --- In , Pou <jenncrew@> wrote: > >> > >> You know, every one of us is going through tough times. And, short > > of a miraculous healing from the Almighty or a revolutionary > > breakthrough in science, it's not like the road ahead is looking better > > for any of us. We all live with pain on a daily basis > > > > > > I have to disagree with your comments above. Many of us with RA are > > doing very well, thanks to interventions of all sorts. I don't live > > with pain on a daily basis. Not any more. > > > > Sierra > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 > My pain is very, very variable. Some days, I really have almost none (although I do have a lot of stiffness in the morning and after I sit or lie down for any period of time). Some days, the pain is so bad that it's hard to convince myself to move a muscle. I know some of the things that trigger it, but sometimes it's just a mystery. I also have fibro, and I think that really affects how I experience the pain. > > > >> > > >> You know, every one of us is going through tough times. And, > short > > > of a miraculous healing from the Almighty or a revolutionary > > > breakthrough in science, it's not like the road ahead is looking > better > > > for any of us. We all live with pain on a daily basis > > > > > > > > > I have to disagree with your comments above. Many of us with RA > are > > > doing very well, thanks to interventions of all sorts. I don't > live > > > with pain on a daily basis. Not any more. > > > > > > Sierra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Marina, I've experienced the same kind of prejudices also so I know how you feel. People just don't understand...even my grown daughters get upset with me if I call them and tell them I can't participate in some activity because I'm having a BAD day. They don't get it that just because I take all the RA drugs that I should be pain free and I should feel GREAT all the time and I don't. IN fact, lately there's been a lot more BAD days than there is good ones. That's when I've had enough and tell my Rheumy that we have to do something different. Hang in there and here's wishing you a Less pain than normal day! Lyn > > >> > > >> You know, every one of us is going through tough times. And, > short > > > of a miraculous healing from the Almighty or a revolutionary > > > breakthrough in science, it's not like the road ahead is looking > better > > > for any of us. We all live with pain on a daily basis > > > > > > > > > I have to disagree with your comments above. Many of us with RA > are > > > doing very well, thanks to interventions of all sorts. I don't > live > > > with pain on a daily basis. Not any more. > > > > > > Sierra > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2007 Report Share Posted January 13, 2007 Joy, you are not being too emotional. It gets to me, as well. My own family didn't get it until they saw just how sick I was getting. My dad keeps telling me that it's because of my diet. He thinks that just because I'm a vegetarian that I get sick all the time!! Truth is, I've been a vegetarian for nearly 25 years. This is the sickest I've ever been. He gave me that same song and dance when I had to have a hysterectomy. The fact that I had endometriosis, just as my grandmother did at my age, had absolutely nothing to do with it. His answer to everything is a good steak and a glass of wine will cure all. Of course, I'm the only one in the family with an excellent cholesterol level!! LOL Don't ever let someone think that you are being too emotional or that it's all in your head. Just reading the posts on this site should show you that it's not the case at all. When I feel like the world is crashing down on me and I have no support, I come here and see that I DO have support. THIS family understands. Take care, Marina > > Marina > I have had extreme pain and mild to moderate pain in RA. But I told my > Mom once that I just felt like crying like a baby when it was extreme. One > day I couldn't even sit still in church and had to leave and wait for my family in > the car. > And you are right while we may not look sick we may feel like death warmed > over. I am happy that there are people out there who can control their RA with > meds and get on with their lives but sometimes the drugs aren't the miracle > cure they claim to be on the commercials and that can be misleading > to the public. > One time I was at a reception hall and my sister said, so and so has RA and > they do fine and have a great outlook. She introduced me and the lady went on > and on about exercise and how it is all a state of mind and that you can't let it get you > down. Now my sister hears this > and she probably compares me to this other lady and it just broke my heart > and made me feel like the pain it was all in my head. Maybe I am just too emotional > but it hurt my feelings instead of making me feel better. > Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2007 Report Share Posted January 13, 2007 Lyn, To me, the worse of the prejudice comes from family. The one place you think you would get support, and they let you down. Back at ya in regards to the hanging in there. This family is a wonderful cornicopia of support!!........Marina > > Marina, > I've experienced the same kind of prejudices also so I know how you > feel. People just don't understand...even my grown daughters get > upset with me if I call them and tell them I can't participate in some > activity because I'm having a BAD day. They don't get it that just > because I take all the RA drugs that I should be pain free and I > should feel GREAT all the time and I don't. IN fact, lately there's > been a lot more BAD days than there is good ones. That's when I've > had enough and tell my Rheumy that we have to do something different. > > Hang in there and here's wishing you a Less pain than normal day! > Lyn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2007 Report Share Posted January 13, 2007 I suspect that you'll get a somewhat skewed response from this group... I suspect that people whose RA is really COMPLETELY under control (which my rheumatologist STILL tells me is possible) don't need to bother with support groups like this. I do know 3 people personally who have RA, take Plaquenil daily, and feel just fine and dandy. I wish it was so simple for the rest of us!<g> > >> > >> You know, every one of us is going through tough times. And, short > > of a miraculous healing from the Almighty or a revolutionary > > breakthrough in science, it's not like the road ahead is looking better > > for any of us. We all live with pain on a daily basis > > > > > > I have to disagree with your comments above. Many of us with RA are > > doing very well, thanks to interventions of all sorts. I don't live > > with pain on a daily basis. Not any more. > > > > Sierra > Quote Link to comment Share on other sites More sharing options...
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