Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 SHU, When Tally is flaring up, he hates his knees rubbed as well because they hurt. He hates to be touched actually. kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 Thanks I will try it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 Shu when melissas joints act up she dont want me touching them she dont even want the doctor touching them Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 SHU i am not sure if its the nerves or its just they dont want to feel the pain but sometimes even water stings melissas joints when shes batheing Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 shu, the majority of samis pain is in her knees, shes always asking us to rub them, and alot of times it hurts her to even have them touched. We found out from a phys therapist that when we rub her knees, we are supposed to rub them very lightly, in an upward direction. The point is to move the fluid in her knees toward her heart. This work well for sam...alot less painfull and it seems to help. I hope that this will help a little bonny >From: WELSMOYEDS@... >Reply- > >Subject: ?? on cause of pain >Date: Tue, 20 Feb 2001 16:28:01 EST > > >Hello everyone. > >The other night I was rubbing my daughters knees, thinking that it would >help them feel better. To my surprise she said that it hurt to have her >knees >rubbed, (they are swollen). I asked if it hurt to rub her ankles and she >said >no, (they are not swollen.) >Has anybody else experienced this type of reaction in there child? SHU > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 hi shu, ihave been experiencing that myself and was just telling my docs about it. as i have posted, i have been having a great deal of flare in my right arm from the elbow down. it hurts so bad, i thought just like you, that rubbing it would help relax it. i was wrong, it made it more tender, sore, and hot than it was. it turned the musle on top of my arm into a knot. goodluck with the knees, brandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2001 Report Share Posted February 20, 2001 Actually, when I'm in lots of pain, it hurts to be touched anywhere. But now that you mention it, more so if I am having swelling. --- WELSMOYEDS@... wrote: > > Hello everyone. > > The other night I was rubbing my daughters knees, > thinking that it would > help them feel better. To my surprise she said that > it hurt to have her knees > rubbed, (they are swollen). I asked if it hurt to > rub her ankles and she said > no, (they are not swollen.) > Has anybody else experienced this type of reaction > in there child? SHU > > ===== I'm not under the alkafluence of inkahol that some thinkle peep I am. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 In a message dated 02/20/2001 9:06:11 PM Pacific Standard Time, Robbin40@... writes: when melissas joints act up she dont want me touching them she dont even want the doctor touching them Robbin I wonder if a product like icy-hot would help. feels the same way, like her here nerves are screaming. even her clothes hurt Marcie, s Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 In a message dated 02/22/2001 8:47:14 PM Pacific Standard Time, brandy_erin@... writes: i give up, i cant take this arm killing me anymore, going to the doc and getting something for pain along the lines of tylenol 3. i will give those hot rub on creams some credit, they damn sure got me moving! lolol!! take care, brandy Yuo take care....I am sorry you hurt so bad. is on a new medication Imuran It really seems to help her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 hay marcie, i personally tried bengay, and girl did i ever regret it!! i still hurt plus i felt like i was on fire and i couldnt get that stuff off to save my life. it was miserable. then i tried something capsasin or something like that, has some kinda cayenne extract or some other hot stuff in it, it was way worse, plus when you sweat it feels like lava on your skin. that one worked but it still burned like HE**!! i tried something called absorbine jr and it doesnt burn, it helped some when i could find it. i give up, i cant take this arm killing me anymore, going to the doc and getting something for pain along the lines of tylenol 3. i will give those hot rub on creams some credit, they damn sure got me moving! lolol!! take care, brandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 I have a question to those who have had JRA since before they were two and are now older say in their teens. My daughter Meghann was dx with pauciarticular at 22 months, I believe she may have had it as early as in her first year. She had other birth related problems dealing with eating/breathing/ including 4 surgeries, which may have made us miss some early symptoms. Hindsight being what it is, I do remember her yelping in pain, but at a loss for why on several occasions. Anyway , Except in the very beginning when she was in so much pain she soldier crawled out of her bedroom and/or would sit and cry because it hurt to move about, Meghann has never been very vocal about pain. (except during some rigourous PT attempting to regain full range of motion). There are days when she will automatically go and fix herself a hot tub and lay in it, sometimes in AM sometimes in PM, there are days when you can tell she is exhausted, she's limping more etc etc. However if I ask her if she is in pain, she will tell me no not really. It seems that her solution to a possible painful joint is not to use it or to use it sparingingly ( a common solution) but she never says ...man my elbow hurts, or my fingers hurt, or anything...and if we were to ask she would say no it doesn't hurt. Is it possible that she has always been in " x " amount of pain all of her life and is unable to recognize what others might deam to be painful? Sometimes i get the feeling that she just looks at JRA as just one of those annoying parts of her life, something she would rather live without but if she has to live with it oh well... (I'm not trying to sound calvalier about it.) Just wondering Sharon and Meghann JRA and PRS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 Marcie i use to use the icy hot but melissa says it didnt help just made the skin feel funny i even thought about bengay lolol but that smell will get you lololol Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 llololol ever tried those creams and think about getting into a bath THINKIN that would help? lolololol it makes the feeling worse your right it makes you move just to stop the side effects to creams that should make you feel better BUT never use in guys underwear exspecially bengay lolololol i use to use asorbine jr use to much of that and rub and rub it makes you burn more i went to a herb shop and found something called seven golden something this was good the gel you rub on and heated warm soothing comfort but melissa didnt like this lolol Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 Sharon i can only give you my opinion with experience with melissa when you have pain and it dont go away you try to find something that at least makes the pain get better or ease the pain with melissa she cried whinned for so long last year not knowing why the medications the dr said would help didnt or did very little she was on this then was switched to something else so when the dr said this would be better on voltaren she got use to the pain range that voltaren got her to makeing the pain easier to manage but she had pain years ago also due to not knowing and the dr said it was growing pains lololol we adjust to our aches and pains to a limit melissa loves to lay in hot water i have noticed she does this also without saying she hurts but will tell me sometimes she needs to get in the bath to see if it helps this tells me shes more in pain than normal and i will ask her after the bath if she feels better her pain scale we use is 1 to 10 1 being no pain 10 being worser in the last 4 weeks shes been at 6 to 8 yesterday was a 5 she dont complain as much now but these kids have to deal with this everyday so if they were hurting it could be little but they manage it the doctors also have to realize to that when they tell the kids this medication will make you feel better and stop the pain in the childs mind they think the pain will ALL go away they should explain to the kids on THEIR level a childs level of understanding cause the back side of this is the child will say ok that dr said the pain would go away BUT its not so whats the difference of taking the meds it dont help and the kids find something that helps them and when asked if they hurt they will say i am ok and take a bath the best way for them to ease the pain to a managable level think the child sees a parent fustrated with trying to help and going back and forth to the dr sees your feelings better than you see yourself and sometimes feel a burden on you thats why its always best to be honest with the child no matter what so you and the child can get through this together your a parent but also you can be the childs BEST friend also you can ask the child what makes them feel better tiredness is part of this disease this lets the body know that its time to rest and so the body can adjust to the fatigue you just have to go with the flow and take one day at a time Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 Hi Sharon, Holly has had jra since she was 9 months old, and now is 7, i know you wanted those answering to possibly be older, but Holly tends to be more mature then many of her friends. (my grandmother likes to say she has an old soul) I think it is exactly what you said, arthritis is there its always been there its not really going anywhere, so just deal with it. She will also say nothing is bothering, but yet can hardly at times carry herself across the floor or is so tired she cant even think. Hope that helps some, talk to you soon, AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 I wasn't undr two when I was dx'ed but my answer may be of some help to you. For me, if I admit to pain, it's got to be horrible. So horrible that I can no longer stand it. My husband can see it before I'll admit to it but after 6 years that's no surprise. But to others, I am perfectly healthy and fine. At least that's how I try to look. I don't like letting pain be a constant subject in my relationships with others. Yes, it is possbile that she may not know what others think is painful. When asked about pain, my answer is yes I hurt but it's not out of the ordinary for me. And she very well may look at it as just a part of life that must be dealt with. I do. I may not always have an easy time of dealing with it but it's here, it's part of my life and has been for ovr half my life. That being said, when the [ain goes away for the most part and then comes back, it is hard to deal with. I've had to tell myself you have been through much worse than this, get over it. This will not kill you and things like that when I began to hurt after feeling fine. Waynette --- Gerfen <rsgerfen@...> wrote: > I have a question to those who have had JRA since > before they were two and > are now older say in their teens. > > My daughter Meghann was dx with pauciarticular at 22 > months, I believe she > may have had it as early as in her first year. She > had other birth related > problems dealing with eating/breathing/ including 4 > surgeries, which may > have made us miss some early symptoms. Hindsight > being what it is, I do > remember her yelping in pain, but at a loss for why > on several occasions. > > Anyway , > Except in the very beginning when she was in so > much pain she soldier > crawled out of her bedroom and/or would sit and cry > because it hurt to move > about, Meghann has never been very vocal about > pain. (except during some > rigourous PT attempting to regain full range of > motion). > There are days when she will automatically go > and fix herself a hot tub > and lay in it, sometimes in AM sometimes in PM, > there are days when you can > tell she is exhausted, she's limping more etc etc. > However if I ask her if > she is in pain, she will tell me no not really. It > seems that her solution > to a possible painful joint is not to use it or to > use it sparingingly ( a > common solution) but she never says ...man my elbow > hurts, or my fingers > hurt, or anything...and if we were to ask she would > say no it doesn't hurt. > > Is it possible that she has always been in " x " > amount of pain all of her > life and is unable to recognize what others might > deam to be painful? > > Sometimes i get the feeling that she just looks at > JRA as just one of those > annoying parts of her life, something she would > rather live without but if > she has to live with it oh well... (I'm not trying > to sound calvalier about > it.) > > Just wondering > > Sharon and Meghann > JRA and PRS > > > > > > ===== I'm not under the alkafluence of inkahol that some thinkle peep I am. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 hi jennys mom again, i think i have some of that imuran in the cabinet. ill have to check, i never actually tried it becuase someone said it would put me to sleep, you know, like i wouldnt be able to take it and function normally at the same time. thanks for the support, brandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 hi sharon, i was dx'd at 5 but have no idea how long symptoms were present before then. i know you asked for jra-ers who were dx'd at 2 or younger, but i feel kind of like meghann does. i dont know life or remember life without jra, so i dont understand what life without jra pain is supposed to feel like. to us, this is just normal. its kind of like when i was thinking of having some surgery on my hands because my fingers are bent and turned some. the doc said he could straighten them out and make them look cosmetically pretty, but i might never be able to learn how to use hands like that. see what im saying? he said even though my hands were disfigured, i have adapted to them and can do everything with them that you can do with your hands, and changing that may really not be the best thing for me. weird huh? but after i thought about it, it was true. i dont even realize my hands are different or that i walk stiff or may even limp unless i see myself in a mirror. i hate the house of mirrors the fairs bring to town because even though i feel normal, they make look like a freak. i hope this helps you understand how we think, brandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 hi robbin, no kidding about the baths. everytime i took a shower for like a week, that capsasin stuff caught me on fire, lol. brandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 amen waynette, brandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2001 Report Share Posted February 24, 2001 > I have a question to those who have had JRA since before they were two and > are now older say in their teens. > > My daughter Meghann was dx with pauciarticular at 22 months, I believe she > may have had it as early as in her first year. I will chime as a parent of a child finally dx'd at 15 months old. I do > remember her yelping in pain, but at a loss for why on several occasions. We remember thinking the same thing about the type of crying sometimes would cry. It always sounded so pitiful, as if something was wrong. Very different from the usual baby type cries. > > Anyway , > Except in the very beginning when she was in so much pain she soldier > crawled out of her bedroom and/or would sit and cry because it hurt to move > about, Meghann has never been very vocal about pain. (except during some > rigourous PT attempting to regain full range of motion). That is exactly how has been. I don't know if it simply because these feelings are all that she knows or that may have a touch of stoicism in her personality. In the very early days she would just sit in my lap, after she woke, in the morning for about a hour. The earliest days of PT were the wordt I had seen, at even that was not would I consider a traumatic reaction from . She had a frozen ankle, a stiff ankle and atophied calf muscles in both legs (WHICH *could* have been avoided IMHO). That was just the begining. We did have a fantastic PT who had a long history of working with children. This could bring up a whole other discussion of PT's/OT's who have lousy personalities and should not be working with anyone, let alone children. > However if I ask her if > she is in pain, she will tell me no not really. It seems that her solution > to a possible painful joint is not to use it or to use it sparingingly ( a > common solution) but she never says ...man my elbow hurts, or my fingers > hurt, or anything...and if we were to ask she would say no it doesn't hurt. only occassionally tells us that she has any direct aches or pains. Maybe it is her age of nearly 4. Who knows. She is quite verbal and has no problem speaking, using lots of words and in general letting us know her thoughts. But she only will say that this hurts or that hurts sometimes. For the first time, this past week, I actually saw her limping, she did say that her knee hurt. Then she matter of fact asked if she could rollerblade like her big sister. She would have done it too, I have seen her play with swollen knees and such. Sometimes asking her if she may want to play a sit down game but she won't. Maybe you can tell she got moxy(regular folks call it being stubborn). She can't keep up most of the time, but she tries. She is always the last runner. She is always the slowest at the playground when it comes to climbing up and down the equipment along with the other kids. Forget playing a game like duck-duck-goose. She would do it, but it would be a strain for me to watch her get picked and then see her get up and run around the circle. I have seen her big sister help her hop down from some of the climbing stuff and that is also a 'matter-of-fact' for my older daughter. > Is it possible that she has always been in " x " amount of pain all of her > life and is unable to recognize what others might deam to be painful? We have surmised this since the very early days. We know that she now recogonizes the average boo-boo; cut, scrape, or bang that us ordinary folks get here and there. And those are the times when she let out a normal kid wail. But when we recently had a very tough and long flare. She became somewhat sullen, grumpy, complained of feeling tired, and oftentimes not hungry either. But not mentions of pain or aches or even boo-boo. > > Sometimes i get the feeling that she just looks at JRA as just one of those > annoying parts of her life, something she would rather live without but if > she has to live with it oh well... (I'm not trying to sound calvalier about > it.) I think that simply never doesn't have any frame of reference so that she would understand about the way she feels. Also, still doesn't understand much about JRA, or is able to understand that she " has it " . She is still young enough to not have the mental capacity to relate this unseen thing to her aches/pains. It is just her reality. She could never know what it feels like to be me or any one else. But because she acquired JRA at such a young age she also doesn't know that most people don't have these types of physical feelings every day. It is far easier to understand emotional feelings. > > Just wondering > > Sharon and Meghann > JRA and PRS Just wondering along with you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2001 Report Share Posted February 24, 2001 Sharon, I know you wanted to hear from someone who was diagnosed, but as a mom of a 4-1/2 year old who has dealt with " something " (possibly Systemic JRA) since she was 3 months old, that doesn't sound cavalier at all. I have often said that about my Kelli. She is now 4-1/2 and has a pain tolerance like only a JRA Mom would understand. She has had symptoms including over 105 fevers since she was 3 months old and can be in obvious pain, but when I ask her what hurts, she tells me nothing. She can be doubled over, limping, or grunting with every move, but tell me nothing hurts. I think you are right about the fact that these kids have lived with it so long and it is such a part of their life that they don't anything differently. She had bilateral ureteral reimplant at 18 months of age, had stitches from hip bone to hip bone and also had stitches the full length of her bladder and 24 hours after surgery, wanted to get out of bed and play. My husband and I just hurt watching her, but she grabbed both sides of the hospital crib and pulled herself to a sitting position without any pain meds at the time. The only way the nurses knew she was in pain was to watch the monitors. When her blood pressure and heart rate would go up, they would give her pain meds, because they knew she was in pain. Also, she would periodically start holding her breath, so they would just make sure she was comfortable. They were amazed at her strength at only 18 months old. She has always been that way. The only scary thing about that is that she could probably be hurt pretty bad and one would never know because she doesn't complain. I also agree that it may be partly personality because my oldest daughter couldn't handle a lot of the things Kelli does. She is " dying " when she has a hangnail. Oh well. I hope this helps. Angie Re: ?? on cause of pain >I have a question to those who have had JRA since before they were two and >are now older say in their teens. > >My daughter Meghann was dx with pauciarticular at 22 months, I believe she >may have had it as early as in her first year. She had other birth related >problems dealing with eating/breathing/ including 4 surgeries, which may >have made us miss some early symptoms. Hindsight being what it is, I do >remember her yelping in pain, but at a loss for why on several occasions. > >Anyway , > Except in the very beginning when she was in so much pain she soldier >crawled out of her bedroom and/or would sit and cry because it hurt to move >about, Meghann has never been very vocal about pain. (except during some >rigourous PT attempting to regain full range of motion). > There are days when she will automatically go and fix herself a hot tub >and lay in it, sometimes in AM sometimes in PM, there are days when you can >tell she is exhausted, she's limping more etc etc. However if I ask her if >she is in pain, she will tell me no not really. It seems that her solution >to a possible painful joint is not to use it or to use it sparingingly ( a >common solution) but she never says ...man my elbow hurts, or my fingers >hurt, or anything...and if we were to ask she would say no it doesn't hurt. > >Is it possible that she has always been in " x " amount of pain all of her >life and is unable to recognize what others might deam to be painful? > >Sometimes i get the feeling that she just looks at JRA as just one of those >annoying parts of her life, something she would rather live without but if >she has to live with it oh well... (I'm not trying to sound calvalier about >it.) > >Just wondering > >Sharon and Meghann >JRA and PRS > > > > > > > >For links to websites about JRA, visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > >To manage your subscription settings, visit: > / > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2001 Report Share Posted February 24, 2001 > Sharon, >They were amazed at her strength at only 18 months old. This one sentence reminded me of the time When still could not walk unassisted. She was 18 months old and had been getting acclimated to her new braces. She was just getting strong enough to stand. Theses brace were hinged AFO's. They started in the shoe, hinged at the ankle and went up her calf to just below her knee. My older daughter was just 3.5 but wanted to roller skate. We took them outside, my older could not get the hang of skating, but was determined to try. So we put the skates on and we held her hands and off she went. The braces with skates weighed a ton, but was going to do this no matter what we said. > > She has always been that way. I am certain that was born that way. She will be 4 in April. my > oldest daughter couldn't handle a lot of the things Kelli does. She is > " dying " when she has a hangnail. will sit and even wince when she has blood drawn. She was such a good patient the times she was hospitalized and we seemed to be like a circus side show. My older daughter, nearly 6 now, will crumble into a heap of hysteria if I tell her that she will need a finger stick next year at her check-up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 My daughter is the same exact way. She is now 6 yrs old, and was dx at 18mths with jra. She will take baths sometimes up to 3-4 times a day, but yet if you ask her if she is hurting she will say no, although she will have fever in her knee and ankles and you can see that she is swollen. She however, does not use her left leg (she has it really bad in her left knee) and this has caused muscle loss in her leg, that she is currently in therepy twice a week to overcome. She also wears a shoe lift to make up for the difference is leg lenghts that she has, but she never really complains. It makes me very quilty if I complain of a headache.... Kaylan and Brittany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 In a message dated 02/23/2001 8:15:57 PM Pacific Standard Time, brandy_erin@... writes: hi jennys mom again, i think i have some of that imuran in the cabinet. ill have to check, i never actually tried it becuase someone said it would put me to sleep, you know, like i wouldnt be able to take it and function normally at the same time. thanks for the support, brandy _________________________________________________________________ It doesn't seem to make tired ...Good luck Marcie, s Mom Quote Link to comment Share on other sites More sharing options...
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