Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 almost 2 full weeks dang near pain free with Lyrica and tordol with acetaminophine, and tonight, boom, it is all back...anyone else this really stinks, i could do almost everything, and now back to the reality that I can do darn near nothing...docs say it is nothing they ever learned in med school, I fit in no category, yet numerous people here know exactly what I am talking about...butt pain, complete bone pain, hands and feet that want to wrinkle, even muscles thruought body feeling like wrinkling up and bones gonna just shrivel...muscles don't work, fatigue from just doing one simple little thing...this is mentally hard..I was facing the fact of what my life had become, but to get it back, get that taste, this is so not fair I am disabled, but can't prove it...I live in constant pain, but no ne knows why, yet numerous hep c treated people have my same pains I have a special needs son that depends on my arms and legs to be his arms and legs...I need my life back....what now Tonni Brende Wife, Mother, Grandma too... "Life is not about waiting for the storms to pass... it's about learning how to dance in the rain." athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful. http://johnathanourgift.synthasite.com/index.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 Sure sounds like Fibromyalgia to me! Lyrica should help... I haven't tried it that stuff is way too expensive. But sometimes pain breaks thru even that. The other thing is for that time you were feeling so good, did you wear yourself out? That's a common problem with Fibromyalgia as well. We get a good day here and there and try to fit way too much into it and we pay for it later. Have you seen a Rheumatologist yet? They are usually the ones that can diagnose Fibro.. that and any young buck fresh out of med school Hugs,TeriOn Sat, Jan 29, 2011 at 9:02 PM, Tonni Brende <tbrende7@...> wrote: almost 2 full weeks dang near pain free with Lyrica and tordol with acetaminophine, and tonight, boom, it is all back...anyone else this really stinks, i could do almost everything, and now back to the reality that I can do darn near nothing...docs say it is nothing they ever learned in med school, I fit in no category, yet numerous people here know exactly what I am talking about...butt pain, complete bone pain, hands and feet that want to wrinkle, even muscles thruought body feeling like wrinkling up and bones gonna just shrivel...muscles don't work, fatigue from just doing one simple little thing...this is mentally hard..I was facing the fact of what my life had become, but to get it back, get that taste, this is so not fair I am disabled, but can't prove it...I live in constant pain, but no ne knows why, yet numerous hep c treated people have my same pains I have a special needs son that depends on my arms and legs to be his arms and legs...I need my life back....what now Tonni Brende Wife, Mother, Grandma too... " Life is not about waiting for the storms to pass... it's about learning how to dance in the rain. " athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful. http://johnathanourgift.synthasite.com/index.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 TonnieI feel sooo bad for you!! Yes, we do know! Get your Dr. to send you to an Arthirites specialist. No more fooling around about it. It's true that you have pain and it's definitely not all in your head.When I first ended treatment back in 2005, it didn't take very long at all to realize what it left in its wake. At that time, we were living upstairs of a store, in the 2000sq ft "apartment". Unfortunately, that was two flights of stairs!! I'd get to the landing and she stand there and cry it was so bad. Another one was trying to unload the dishwasher!! I just couldn't do it because I'd have to bend over and one of the worst spots of Fibro that I have, is right at the bottom of my spine.By the way, I'm Canadian; but, I don't think our disability rules are much different. Only that we get ours a whole lot faster and it doesn't take a lawyer. Anyway, when I applied for mine, I could say without a doubt, that I still had HepC and Fibro. Got my disability first time out.Gloria almost 2 full weeks dang near pain free with Lyrica and tordol with acetaminophine, and tonight, boom, it is all back...anyone else this really stinks, i could do almost everything, and now back to the reality that I can do darn near nothing...docs say it is nothing they ever learned in med school, I fit in no category, yet numerous people here know exactly what I am talking about...butt pain, complete bone pain, hands and feet that want to wrinkle, even muscles thruought body feeling like wrinkling up and bones gonna just shrivel...muscles don't work, fatigue from just doing one simple little thing...this is mentally hard..I was facing the fact of what my life had become, but to get it back, get that taste, this is so not fair I am disabled, but can't prove it...I live in constant pain, but no ne knows why, yet numerous hep c treated people have my same pains I have a special needs son that depends on my arms and legs to be his arms and legs...I need my life back....what now Tonni Brende Wife, Mother, Grandma too... "Life is not about waiting for the storms to pass... it's about learning how to dance in the rain." athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful. http://johnathanourgift.synthasite.com/index.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 Tonni,Just to piggy back on what Gloria has said here.. I finished tx in 2006. I was not diagnosed with Fibromyalgia until this past year in April. A friend of mine, who also went thru treatment has Fibromyalgia and when we got to talking about the aftermath of treatment she told me that she was almost sure what I was describing to her was Fibro. I did some research on the web and sure enough, I had all the markers. I went to my doctor and asked about Fibromyalgia. His response was this... " I don't believe in that diagnosis. It is a catch all for doctors who don't know what the real problem is, but, if I didn't know better, I'd say you had classic symptoms... " My reaction was pretty much WTF does that mean? He then told me if anyone had Fibro it was probably me but he wouldn't diagnose me with it. So I fired him. He knew what was wrong but refused to accept it and fix it. I started looking for another doctor immediately. I didn't tell the new doctor what I thought I had... I wanted him to tell me. And he did. Right away. I had all the markers. I've since had several other doctors confirm that diagnosis. 3 more to be exact. One being my liver specialist and another an ER doc. Plus my doctors partner. Everybody agrees. The trick is finding a doctor that believes in this as a real disease. Hope that helps..Hugs,TeriOn Sat, Jan 29, 2011 at 10:59 PM, Gloria <gadamscan@...> wrote: TonnieI feel sooo bad for you!! Yes, we do know! Get your Dr. to send you to an Arthirites specialist. No more fooling around about it. It's true that you have pain and it's definitely not all in your head. When I first ended treatment back in 2005, it didn't take very long at all to realize what it left in its wake. At that time, we were living upstairs of a store, in the 2000sq ft " apartment " . Unfortunately, that was two flights of stairs!! I'd get to the landing and she stand there and cry it was so bad. Another one was trying to unload the dishwasher!! I just couldn't do it because I'd have to bend over and one of the worst spots of Fibro that I have, is right at the bottom of my spine.By the way, I'm Canadian; but, I don't think our disability rules are much different. Only that we get ours a whole lot faster and it doesn't take a lawyer. Anyway, when I applied for mine, I could say without a doubt, that I still had HepC and Fibro. Got my disability first time out. Gloria almost 2 full weeks dang near pain free with Lyrica and tordol with acetaminophine, and tonight, boom, it is all back...anyone else this really stinks, i could do almost everything, and now back to the reality that I can do darn near nothing...docs say it is nothing they ever learned in med school, I fit in no category, yet numerous people here know exactly what I am talking about...butt pain, complete bone pain, hands and feet that want to wrinkle, even muscles thruought body feeling like wrinkling up and bones gonna just shrivel...muscles don't work, fatigue from just doing one simple little thing...this is mentally hard..I was facing the fact of what my life had become, but to get it back, get that taste, this is so not fair I am disabled, but can't prove it...I live in constant pain, but no ne knows why, yet numerous hep c treated people have my same pains I have a special needs son that depends on my arms and legs to be his arms and legs...I need my life back....what now Tonni Brende Wife, Mother, Grandma too... " Life is not about waiting for the storms to pass... it's about learning how to dance in the rain. " athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful. http://johnathanourgift.synthasite.com/index.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 Bingo!! That is the first hurdle to cross, A Dr. who knows this is a truly painful condition. I was very blessed to have a Dr. that did know. Then, I was sent to an Arthiritis Specialist and didn't tell him what we suspected. Wham - he diagnosed and the rest is history now. Tonni,Just to piggy back on what Gloria has said here.. I finished tx in 2006. I was not diagnosed with Fibromyalgia until this past year in April. A friend of mine, who also went thru treatment has Fibromyalgia and when we got to talking about the aftermath of treatment she told me that she was almost sure what I was describing to her was Fibro. I did some research on the web and sure enough, I had all the markers. I went to my doctor and asked about Fibromyalgia. His response was this... "I don't believe in that diagnosis. It is a catch all for doctors who don't know what the real problem is, but, if I didn't know better, I'd say you had classic symptoms..." My reaction was pretty much WTF does that mean? He then told me if anyone had Fibro it was probably me but he wouldn't diagnose me with it. So I fired him. He knew what was wrong but refused to accept it and fix it. I started looking for another doctor immediately. I didn't tell the new doctor what I thought I had... I wanted him to tell me. And he did. Right away. I had all the markers. I've since had several other doctors confirm that diagnosis. 3 more to be exact. One being my liver specialist and another an ER doc. Plus my doctors partner. Everybody agrees. The trick is finding a doctor that believes in this as a real disease. Hope that helps..Hugs,TeriOn Sat, Jan 29, 2011 at 10:59 PM, Gloria <gadamscan@...> wrote: TonnieI feel sooo bad for you!! Yes, we do know! Get your Dr. to send you to an Arthirites specialist. No more fooling around about it. It's true that you have pain and it's definitely not all in your head. When I first ended treatment back in 2005, it didn't take very long at all to realize what it left in its wake. At that time, we were living upstairs of a store, in the 2000sq ft "apartment". Unfortunately, that was two flights of stairs!! I'd get to the landing and she stand there and cry it was so bad. Another one was trying to unload the dishwasher!! I just couldn't do it because I'd have to bend over and one of the worst spots of Fibro that I have, is right at the bottom of my spine.By the way, I'm Canadian; but, I don't think our disability rules are much different. Only that we get ours a whole lot faster and it doesn't take a lawyer. Anyway, when I applied for mine, I could say without a doubt, that I still had HepC and Fibro. Got my disability first time out. Gloria almost 2 full weeks dang near pain free with Lyrica and tordol with acetaminophine, and tonight, boom, it is all back...anyone else this really stinks, i could do almost everything, and now back to the reality that I can do darn near nothing...docs say it is nothing they ever learned in med school, I fit in no category, yet numerous people here know exactly what I am talking about...butt pain, complete bone pain, hands and feet that want to wrinkle, even muscles thruought body feeling like wrinkling up and bones gonna just shrivel...muscles don't work, fatigue from just doing one simple little thing...this is mentally hard..I was facing the fact of what my life had become, but to get it back, get that taste, this is so not fair I am disabled, but can't prove it...I live in constant pain, but no ne knows why, yet numerous hep c treated people have my same pains I have a special needs son that depends on my arms and legs to be his arms and legs...I need my life back....what now Tonni Brende Wife, Mother, Grandma too... "Life is not about waiting for the storms to pass... it's about learning how to dance in the rain." athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful. http://johnathanourgift.synthasite.com/index.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 Lyrica made my feet, legs swell, I could not take it. I hear u, I feel you..pain for me is evryday, but there are ways to deal as don mentioned. Yep! I get a good day and do to much and suffer a week after, Learning to pace ourselves is a must,don't give up, it is finding the right combo, tru meds, meditating, relaxing, nutrition. etc.. Good luck in finding what works for you! Qualitiy of life is VIP!!! Don, has created a wonderful library at our fingers tips, research all you can! so informative, Bless his heart for putting it all in one place. You are dealing with alot. We are here for you Tonni!! this site is a Blessing!! > > almost 2 full weeks dang near pain free with Lyrica and tordol with acetaminophine, and tonight, boom, it is all back...anyone else > this really stinks, i could do almost everything, and now back to the reality that I can do darn near nothing...docs say it is nothing they ever learned in med school, I fit in no category, yet numerous people here know exactly what I am talking about...butt pain, complete bone pain, hands and feet that want to wrinkle, even muscles thruought body feeling like wrinkling up and bones gonna just shrivel...muscles don't work, fatigue from just doing one simple little thing...this is mentally hard..I was facing the fact of what my life had become, but to get it back, get that taste, this is so not fair > > I am disabled, but can't prove it...I live in constant pain, but no ne knows why, yet numerous hep c treated people have my same pains > I have a special needs son that depends on my arms and legs to be his arms and legs...I need my life back....what now > > > Tonni Brende Wife, Mother, Grandma too... > > > > > > > > > " Life is not about waiting for the storms to pass... it's about learning how to dance in the rain. " > athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful. > http://johnathanourgift.synthasite.com/index.php > > Quote Link to comment Share on other sites More sharing options...
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