Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 I'm here. Just kinda " stepping back " from everything. had her appt. at Seattle Children's Hospital Rheumatology last week. They say she doesn't have EDS. They say she has no rheumatological disorder. They say she has this amplified pain thing. They want her to go to their program for teens with this problem. Apparently, kids from all over the US come to Seattle for this program. Some, they hospitalize for a couple weeks, some do the outpatient program. Whatever. I'm done with doctors. She may do the program. We haven't decided yet. She will go in for an eval with them soon. Just waiting for the call. is still suffering with her ribs. They were getting better, then she re-injured them again. I'm worried my son may have mono now. He comes home from school and sleeps every day now. It may just be his age - he's 13. I know he's in a growth spurt. He's never slept in the day, since he was a baby. It's probably his age. I don't think he had a high fever. Anyway, I don't even know if I belong here. I have gotten conflicting dx's from so many doctors. The latest, is that we just amplify our pain, and nothing is wrong. How can you amplify the pain of a back muscle spasm? You can actually see the muscles in her back constricting when she has one. Like her left side is just shrinking. How can they say it's all in her head, when she cries almost every day because she can't play soccer, or even get through a day at school? Everything that my kids and I had had go wrong with our bodies over the last 2 years, cannot be caused by our thinking. Whatever. I give up. Screw it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 I'm here. Just kinda " stepping back " from everything. had her appt. at Seattle Children's Hospital Rheumatology last week. They say she doesn't have EDS. They say she has no rheumatological disorder. They say she has this amplified pain thing. They want her to go to their program for teens with this problem. Apparently, kids from all over the US come to Seattle for this program. Some, they hospitalize for a couple weeks, some do the outpatient program. Whatever. I'm done with doctors. She may do the program. We haven't decided yet. She will go in for an eval with them soon. Just waiting for the call. is still suffering with her ribs. They were getting better, then she re-injured them again. I'm worried my son may have mono now. He comes home from school and sleeps every day now. It may just be his age - he's 13. I know he's in a growth spurt. He's never slept in the day, since he was a baby. It's probably his age. I don't think he had a high fever. Anyway, I don't even know if I belong here. I have gotten conflicting dx's from so many doctors. The latest, is that we just amplify our pain, and nothing is wrong. How can you amplify the pain of a back muscle spasm? You can actually see the muscles in her back constricting when she has one. Like her left side is just shrinking. How can they say it's all in her head, when she cries almost every day because she can't play soccer, or even get through a day at school? Everything that my kids and I had had go wrong with our bodies over the last 2 years, cannot be caused by our thinking. Whatever. I give up. Screw it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 , I too have been told I don't have EDS by 2 geneticists but my old GP swore I do. It seems that a lot of these so called experts think if you don't have stretchy skin etc or all of the symptoms then you don't have EDS. I know that EDS is the only thing that makes sense and explains everything going on with my body and so have simply given up looking for a definative diagnosis and now say I have hypermobile EDS (it is easier that way). As you said there is NO way this canbe in your head as the physical signs are so damb obvious. I too have been told it is all in my head, psycosomatic and so on and so forth, but it is just not true. I am sorry for what these so called professionals put you and your family through. Hang in there OK Sharon > I'm here. Just kinda " stepping back " from everything. > had her appt. at Seattle Children's Hospital Rheumatology last week. They say she doesn't have EDS. > They say she has no rheumatological disorder. > They say she has this amplified pain thing. They want her to go to their program for teens with this problem. Apparently, kids from all over the US come to Seattle for this program. Some, they hospitalize for a couple weeks, some do the outpatient program. > Whatever. I'm done with doctors. She may do the program. We haven't decided yet. She will go in for an eval with them soon. Just waiting for the call. > > is still suffering with her ribs. They were getting better, then she re-injured them again. > > I'm worried my son may have mono now. He comes home from school and sleeps every day now. It may just be his age - he's 13. I know he's in a growth spurt. He's never slept in the day, since he was a baby. > It's probably his age. I don't think he had a high fever. > > Anyway, I don't even know if I belong here. I have gotten conflicting dx's from so many doctors. > The latest, is that we just amplify our pain, and nothing is wrong. > How can you amplify the pain of a back muscle spasm? > You can actually see the muscles in her back constricting when she has one. Like her left side is just shrinking. > How can they say it's all in her head, when she cries almost every day because she can't play soccer, or even get through a day at school? > Everything that my kids and I had had go wrong with our bodies over the last 2 years, cannot be caused by our thinking. > Whatever. I give up. > Screw it. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 , I too have been told I don't have EDS by 2 geneticists but my old GP swore I do. It seems that a lot of these so called experts think if you don't have stretchy skin etc or all of the symptoms then you don't have EDS. I know that EDS is the only thing that makes sense and explains everything going on with my body and so have simply given up looking for a definative diagnosis and now say I have hypermobile EDS (it is easier that way). As you said there is NO way this canbe in your head as the physical signs are so damb obvious. I too have been told it is all in my head, psycosomatic and so on and so forth, but it is just not true. I am sorry for what these so called professionals put you and your family through. Hang in there OK Sharon > I'm here. Just kinda " stepping back " from everything. > had her appt. at Seattle Children's Hospital Rheumatology last week. They say she doesn't have EDS. > They say she has no rheumatological disorder. > They say she has this amplified pain thing. They want her to go to their program for teens with this problem. Apparently, kids from all over the US come to Seattle for this program. Some, they hospitalize for a couple weeks, some do the outpatient program. > Whatever. I'm done with doctors. She may do the program. We haven't decided yet. She will go in for an eval with them soon. Just waiting for the call. > > is still suffering with her ribs. They were getting better, then she re-injured them again. > > I'm worried my son may have mono now. He comes home from school and sleeps every day now. It may just be his age - he's 13. I know he's in a growth spurt. He's never slept in the day, since he was a baby. > It's probably his age. I don't think he had a high fever. > > Anyway, I don't even know if I belong here. I have gotten conflicting dx's from so many doctors. > The latest, is that we just amplify our pain, and nothing is wrong. > How can you amplify the pain of a back muscle spasm? > You can actually see the muscles in her back constricting when she has one. Like her left side is just shrinking. > How can they say it's all in her head, when she cries almost every day because she can't play soccer, or even get through a day at school? > Everything that my kids and I had had go wrong with our bodies over the last 2 years, cannot be caused by our thinking. > Whatever. I give up. > Screw it. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 ...I'm so sorry! This is just awful. I went through a very similar thing at 'the best' children's hospital in Canada. Turns out their department is notorious for missing the boat with EDS. I wonder if this is a wide spread problem with a lot of kids hospitals... Hang in there . I hope things get better... If your daughter does do the pain program I hope it helps! Big (((HUGS))) -Rhea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 ...I'm so sorry! This is just awful. I went through a very similar thing at 'the best' children's hospital in Canada. Turns out their department is notorious for missing the boat with EDS. I wonder if this is a wide spread problem with a lot of kids hospitals... Hang in there . I hope things get better... If your daughter does do the pain program I hope it helps! Big (((HUGS))) -Rhea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 , I would wager most of us have been to 3-4 different doctors and gotten 3-4 different opinions! In fact, I think there was a poll on it once. I wouldn't let it bother me a great deal - just treat it as if you do and hopefully you'll treat the symptoms. But - I was just thinking, if you don't have the diagnosis, perhaps you can't get the meds you need?? Perhaps you should/could see Barb's doctor??? Just for confirmation (or not) of a diagnosis? Just a thought. Don't get too down - just yell at us! We can take it! Love Lana 0 :-) Re: Where's ? I'm here. Just kinda " stepping back " from everything. had her appt. at Seattle Children's Hospital Rheumatology last week. They say she doesn't have EDS. They say she has no rheumatological disorder. They say she has this amplified pain thing. They want her to go to their program for teens with this problem. Apparently, kids from all over the US come to Seattle for this program. Some, they hospitalize for a couple weeks, some do the outpatient program. Whatever. I'm done with doctors. She may do the program. We haven't decided yet. She will go in for an eval with them soon. Just waiting for the call. is still suffering with her ribs. They were getting better, then she re-injured them again. I'm worried my son may have mono now. He comes home from school and sleeps every day now. It may just be his age - he's 13. I know he's in a growth spurt. He's never slept in the day, since he was a baby. It's probably his age. I don't think he had a high fever. Anyway, I don't even know if I belong here. I have gotten conflicting dx's from so many doctors. The latest, is that we just amplify our pain, and nothing is wrong. How can you amplify the pain of a back muscle spasm? You can actually see the muscles in her back constricting when she has one. Like her left side is just shrinking. How can they say it's all in her head, when she cries almost every day because she can't play soccer, or even get through a day at school? Everything that my kids and I had had go wrong with our bodies over the last 2 years, cannot be caused by our thinking. Whatever. I give up. Screw it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 , I would wager most of us have been to 3-4 different doctors and gotten 3-4 different opinions! In fact, I think there was a poll on it once. I wouldn't let it bother me a great deal - just treat it as if you do and hopefully you'll treat the symptoms. But - I was just thinking, if you don't have the diagnosis, perhaps you can't get the meds you need?? Perhaps you should/could see Barb's doctor??? Just for confirmation (or not) of a diagnosis? Just a thought. Don't get too down - just yell at us! We can take it! Love Lana 0 :-) Re: Where's ? I'm here. Just kinda " stepping back " from everything. had her appt. at Seattle Children's Hospital Rheumatology last week. They say she doesn't have EDS. They say she has no rheumatological disorder. They say she has this amplified pain thing. They want her to go to their program for teens with this problem. Apparently, kids from all over the US come to Seattle for this program. Some, they hospitalize for a couple weeks, some do the outpatient program. Whatever. I'm done with doctors. She may do the program. We haven't decided yet. She will go in for an eval with them soon. Just waiting for the call. is still suffering with her ribs. They were getting better, then she re-injured them again. I'm worried my son may have mono now. He comes home from school and sleeps every day now. It may just be his age - he's 13. I know he's in a growth spurt. He's never slept in the day, since he was a baby. It's probably his age. I don't think he had a high fever. Anyway, I don't even know if I belong here. I have gotten conflicting dx's from so many doctors. The latest, is that we just amplify our pain, and nothing is wrong. How can you amplify the pain of a back muscle spasm? You can actually see the muscles in her back constricting when she has one. Like her left side is just shrinking. How can they say it's all in her head, when she cries almost every day because she can't play soccer, or even get through a day at school? Everything that my kids and I had had go wrong with our bodies over the last 2 years, cannot be caused by our thinking. Whatever. I give up. Screw it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 -- I am so sorry for what you and are going thru. I do hope that she can find some relief, if she does the program. I know, at times, it seems as if doctors are the most frustrating people to deal with (and some certainly are!!), but please hang in there. Let us know how things are going. Love, Patti Re: Where's ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 -- I am so sorry for what you and are going thru. I do hope that she can find some relief, if she does the program. I know, at times, it seems as if doctors are the most frustrating people to deal with (and some certainly are!!), but please hang in there. Let us know how things are going. Love, Patti Re: Where's ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 , Don't ever give up please? may have EDS, did she see Dr. Beyers? Your son does sound like he has Mono too! Since he is tired and sleepy. It is contagious. You do belong here! You don't always have a high fever with Mono. Sorry about and her ribs still hurting. We all get in this mode! So many Dr.'s, so many different explanations and wrong diagnosis's. Ya gotta hang in there with the rest of us. Please stay on Ceda. Hugs, S. Hugs, S. Re: Where's ? > I'm here. Just kinda " stepping back " from everything. > had her appt. at Seattle Children's Hospital Rheumatology last week. They say she doesn't have EDS. > They say she has no rheumatological disorder. > They say she has this amplified pain thing. They want her to go to their program for teens with this problem. Apparently, kids from all over the US come to Seattle for this program. Some, they hospitalize for a couple weeks, some do the outpatient program. > Whatever. I'm done with doctors. She may do the program. We haven't decided yet. She will go in for an eval with them soon. Just waiting for the call. > > is still suffering with her ribs. They were getting better, then she re-injured them again. > > I'm worried my son may have mono now. He comes home from school and sleeps every day now. It may just be his age - he's 13. I know he's in a growth spurt. He's never slept in the day, since he was a baby. > It's probably his age. I don't think he had a high fever. > > Anyway, I don't even know if I belong here. I have gotten conflicting dx's from so many doctors. > The latest, is that we just amplify our pain, and nothing is wrong. > How can you amplify the pain of a back muscle spasm? > You can actually see the muscles in her back constricting when she has one. Like her left side is just shrinking. > How can they say it's all in her head, when she cries almost every day because she can't play soccer, or even get through a day at school? > Everything that my kids and I had had go wrong with our bodies over the last 2 years, cannot be caused by our thinking. > Whatever. I give up. > Screw it. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Hi , I couldn't agree more with Lana here... Remember that no matter what, you and have _something_!!! And also, no matter what, you have a lot in common with most people here, so there'll always be a place for you here even if you may have something else which is similar. Don't let something like this drive you down in the dumps. As Lana also says, so many here have been to different doctors and got different answers at first, before it is finally determined that they indeed have EDS. Just don't give up, there are answers out there, it is just taking a bit more time... There'll be a doctor out there somewhere who have enough knowledge to figure this out. The problems you are experiencing are all very real and tough to deal with. Don't let anybody tell you otherwise or let you feel unsure or doubt yourself. There are so many people who are really badly affected by EDS who for years were only told that it was _all in their head_, for years and years. People who got into their forties until they finally got a clear diagnosis from well known genetecists with lots of experience with EDS. Genetecists that told them that they were more or less as taken out of the book about EDS, but even then they were misdiagnosed or brushed off for years. Going through all that is immensensely tough, but you'll get your answers at some point. It really doesn't matter if it is EDS or something else, as long as you just find answers as to what it is and how you best can deal with it. But you sure have a lot of issues that are like us others here, so I wouldn't be that surprised... Didn't one genetecist mean clearly that you had it too? Or do I remember wrong? I have a bad case of Alzheimer Light, that is for sure, so I could be confusing things. And no matter what should be your answers, remember that you'll always be a treasured member of the CEDA family!!! There's a lot of room here for wonderful people like you and I hope that you when you go through this, can turn to all the great guys here instead of withdrawing and going through all of this alone... Because, believe me, there's a lot of people here who knows just what you are going through!!! You won't believe how thankful I am that I have Psoriatic Arthritis... Sounds a bit nuts, but when I had all my tough times, and hadn't been diagnosed with EDS yet, I at least did not have to go through being doubted, told it was all in my head etc. I sort of had an alibi for being in pain and having a tough time, even if I did feel like they didn't really understand how things really were for me and I felt unsure because I felt different from my PA peers. It was so wonderful to finally get a diagnosis and gain a better understanding of why my body acted the way it did... Well, enough for now. It is way too late, almost 2 a.m. I have to get up early and pack my suitcase, give Peanut a bath and do some things here. I leave at around 1 p.m. to go to the airport, I am going up west to visit my dad who is not doing too well. My sisters already got there, so it will be all of us girls all at once, which doesn't actually happen very often since my oldest sister lives in Dubai... Take care! Aase Marit >, I would wager most of us have been to 3-4 different doctors and >gotten 3-4 different opinions! In fact, I think there was a poll on it >once. I wouldn't let it bother me a great deal - just treat it as if you >do and hopefully you'll treat the symptoms. But - I was just thinking, if >you don't have the diagnosis, perhaps you can't get the meds you need?? >Perhaps you should/could see Barb's doctor??? Just for confirmation (or >not) of a diagnosis? Just a thought. Don't get too down - just yell at us! >We can take it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 Hi : Trust your gut on this. A mother's gut has 100% more experience and knowledge than ANY DOCTOR. Trust me I have been down this road. At 18 months my dtr. started walking on her toes all the time. I got some of the weirdest answers over the years and I also got outright refusal by doctors to acknowledge the lax ligaments or coordination difficulties. I did not give near enough credence to my child's discomfort and I am sorry to this day. I thought the doctors would recognize if this was more than ADD with the attendant clumsiness and co-ordination difficulty. My dtr. had burning pain in her toes that I should have acknowledged and pursued much more vigorously. I know it is extremely difficult when doctors say they cannot see a cause. In time, other symptoms will show up, but stick by your kid on this one, you know her better than any one. My kid had this all her life and with the learning disability was unable to articulate accurately what she was experiencing. If you see she has pain, she has pain. Trust your mother's gut.........it will tell you best! Wiser for the experience, but now always trusting my gut. I would think twice before sending her for this brain washing, but look for triggers(activities) that initiate or exacerbate the pain, and try simple measures like rest, heat, cold to reduce it. When my kid had burning pain in her toes on standing I should have put her in a wheelchair with feet elevated.......even if it took 1 year or more to be reduced and it meant her missing lots of school. The doctors almost never saw the pain she experienced first thing in the morning when she put her feet down on the floor, and it was always first thing in the morning. Her toes are hypersensitive to this day. Regards, Bernie Re: Where's ? I'm here. Just kinda " stepping back " from everything. had her appt. at Seattle Children's Hospital Rheumatology last week. They say she doesn't have EDS. They say she has no rheumatological disorder. They say she has this amplified pain thing. They want her to go to their program for teens with this problem. Apparently, kids from all over the US come to Seattle for this program. Some, they hospitalize for a couple weeks, some do the outpatient program. Whatever. I'm done with doctors. She may do the program. We haven't decided yet. She will go in for an eval with them soon. Just waiting for the call. is still suffering with her ribs. They were getting better, then she re-injured them again. I'm worried my son may have mono now. He comes home from school and sleeps every day now. It may just be his age - he's 13. I know he's in a growth spurt. He's never slept in the day, since he was a baby. It's probably his age. I don't think he had a high fever. Anyway, I don't even know if I belong here. I have gotten conflicting dx's from so many doctors. The latest, is that we just amplify our pain, and nothing is wrong. How can you amplify the pain of a back muscle spasm? You can actually see the muscles in her back constricting when she has one. Like her left side is just shrinking. How can they say it's all in her head, when she cries almost every day because she can't play soccer, or even get through a day at school? Everything that my kids and I had had go wrong with our bodies over the last 2 years, cannot be caused by our thinking. Whatever. I give up. Screw it. Quote Link to comment Share on other sites More sharing options...
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