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Topic : Living with Chronic Pain

Number of Replies: 7290
New Messages This Week: 0
Last Reply On:
Created on : Thursday, July 07, 2005, 09:06:20 am
Author : dataimport
Do you or someone you love suffer from chronic pain? Share support with others here.

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September 20, 2005, 4:56 am CDT

Hooray!!!

Quote From: meljor

Hey zip-I would watch out for that last message, there is no info on the member and it sounds like a sales pitch to me, instead of true support. How tacky. Anyway-hope u are doing well 

gentle hugs-mel 

I am so glad and thankful to the Dr Phil staff for removing the message I was referring to. I was incredibly angry at seeing someone trying to make money off of us, especially on our support board!!! I do not trust anything that has a "distributor" number on it-my boyfriend works in IT/Net, and I hear of so many scams and "make money at home" things that are right up that alley!!! Thanks Dr Phil Staff for looking out for us!!!!
 
September 21, 2005, 2:21 am CDT

Hi meljor

Quote From: meljor

I am so glad and thankful to the Dr Phil staff for removing the message I was referring to. I was incredibly angry at seeing someone trying to make money off of us, especially on our support board!!! I do not trust anything that has a "distributor" number on it-my boyfriend works in IT/Net, and I hear of so many scams and "make money at home" things that are right up that alley!!! Thanks Dr Phil Staff for looking out for us!!!!
 i missed what ever the message was,
I've hardly been moving with the pain I've been in, but I'm still fighting to stay mobile...
I'm so glad i found this website, I'm new  to computers i had to get my daughter to show me how to use it (lol)...
anyway, i live in Scotland & I've had (CRPS) 4 years now i haven't met anyone else who has it so i can't find any support groups for it over here...
all i know about the condition is what my specialist told me & thats not a lot ... is there any hope of beating this thing or will it be a life long struggle...
hope you are well take care zippie x
 
September 21, 2005, 5:03 am CDT

voor Paulien

Quote From: grimli

Hi, 

  

Sometimes is being tyred even worst then pain.  

I'm so tired, and I know what cost this, but is so unfair. I'm young and then I can not do the same as mine parents, pffff.  

  

There for I have not been here for few days. Because English is not my languish. 

  

I do wish you all the best. 

I do try to read it all, but today and yesterday I'm nog managing to get through my. 

  

WIth love, Paulien 

hey Paulien,  

I'am from Holland too, for 14 years the doctors told me that I have fibromyalgie, It was a difficult time but I learned a lot during rehab, if you want you can write to me in Dutch,perhaps I can help you a bit. 

  

Greetings Karin 

  

  

 
September 22, 2005, 4:10 am CDT

hey zip!

Quote From: zippie

 i missed what ever the message was,
I've hardly been moving with the pain I've been in, but I'm still fighting to stay mobile...
I'm so glad i found this website, I'm new  to computers i had to get my daughter to show me how to use it (lol)...
anyway, i live in Scotland & I've had (CRPS) 4 years now i haven't met anyone else who has it so i can't find any support groups for it over here...
all i know about the condition is what my specialist told me & thats not a lot ... is there any hope of beating this thing or will it be a life long struggle...
hope you are well take care zippie x

We can always hope that they will find something to help us! My dr is the leading specialist in the Carolinas over here in US, and he says the earlier CRPS is diagnosed, the better it is to try to control the symptoms and keep it at Phase I. But there is no cure. You can check out his website at Piedmontpmr.homestead.com if you want to see what he says about it. Also, check some of the messages for the last couple of weeks, there is another website for a dr in Florida who treats CRPS also that is very good. :)  

The message I referred to was a "commercial" type message for some kind of supplement. Apparently the chronic pain just dissapeared and the person was pain free now, please call blah blah. I was very offended. Glad you didnt see it, but it was addressed to you.  

I hope you have a low pain day, gentle hugs-Mel 

 
September 22, 2005, 2:28 pm CDT

Surviving Invisible Illnesses -FIBROMYALGIA

To those suffering: 

  

I really want to applaud you first of all for being brave enough to come online here to share your stories with all the die-hard Dr. Phil fans.  It is a first step to take in coping with chronic and difficult to deal with illnesses.  And thank you so much, Dr. Phil and staff, to allow this site as a communication and reflection for those with chronic illnesses and pain. 

  

I also want to tell you that I have an illness that I share with many others, unfortunately.  It is very painful.  I don't know why they use the technique called pressure points to diagnose this illness when there are more than 18 points on my body that hurt.  Anyway, I didn't come on this site to message a bunch of complaints about my pain because right now I need to focus on the positive at the stage of coping I'm at.  I'm not saying you all do not have a right to vent.  I have done my venting, and plenty of it.  I have one main purpose to post a message on this site and I want to stay focused on this. 

  

Reason #1:     WE NEED A CURE!  Since we aren't getting one at this time, we need to fight for it, stand up for ourselves, not allow the general public or doctors to tell us that this pain is in our heads!  We need to contact government officials and let them know they need to fund more research money for the cure of fibromyalgia.  A very nice organization in Wisconsin, the Wisconsin Chapter of the Arthritis Foundation is pushing for some legislation to fund for arthritis and other related illnesses such as fibromyalgia.  We need to contact our state representatives and contact the arthritis foundation in our state and FIGHT 4 A CURE!!!!  This will not only let them know that we won't put up with this illness without some funding going for research to cure us, but it will also get us out of our "feel sorry for me" attitudes that arise when we are delt a bad luck of cards in life of chronic constant pain and dealing with an illness doctors know very little about.  We have every right to ask for funding and a cure for this illness.  Don't allow them to get you down, thinking there is no hope.  You are far more valuable than to become a rug to be walked on day-in and day-out.  Hopelessness will not help in the fight for a cure.  Please join me and stand up for what you deserve!  Connect with others fighting this illness and become strong in numbers.  You will be amazed in what changes can be made.  It is estimated that over 5.8 million people have fibromyalgia.  That is a lot of people.  We are not alone and need our voices to come together in helping to push for legislation in funding for a cure.   

  

So many times I hear people crying out for help to the wrong people.  It is okay to vent, and I've done my share, but please do not forget the next step:  Writing to our state representatives, asking for more money for research on fibromyalgia. 

  

Thank you so much for your time in reading this.  Let's be strong, come together, and do what we can do best as a team, FIGHT 4 A CURE! 

  

Yours truly, 

Kristie B. 

fyte4acure : ) 

 
September 22, 2005, 2:51 pm CDT

Fight & struggle is correct! Fight 4 a Cure!

Quote From: grimli

Hi, 

  

Like the title said. 

  

I have found my way here. 

  

I know since dec 2003 that I've fibromyalgia (fibromyalgie). My world fell apart. Because I was only 28 at that time. I found it unfair. Why me, that young. I want so much, but my future has change, not knowing what kinda work I could do.  

Just sitting at home feeling sorry for myself.  

  

Very slowly, with help from my parents and friends I crawl back.  

  

But my turning point was, when I was at de youthmeeting for youngs with FM. I realise, if I want to work again, I have to change the way of living.  

I need structure in my life. Each day I wake up at same time, if the pain hasn't woke my up to early. And very slowly I walked 10 minutes, three times a day. And now, 6 months later I walk 2 times half hour.  

I even dare to think about working again. I've started wit a hobby study pshychologie (don't know engelish word anymore). Now I know I want to help others with the same illnes, especially young ones. Because the have differents problems. Study, school, work, relationship, kids or not.  

So I decided when I have enough money I wil go to do study psychologie on high level.  

  

Right now I ork on a book, youth with firbomyalgia. because there is no books that is focus on them, but talking about others problems. And some one has be the first, so I decided that.  

  

2004 was not my year. 2005, up till now, is has been my year. I became stronger and now I know, there is for a reason that I have FM. To help others. To carring out my positive.  

I write on my own site every day journal. 

and I hear from them that my story help them to lift up to. Not to feel alone with there feelings.  and because I try look everything on the bright side. 

  

Yes of course I have my bad days, I wil always have bad days. But my good days are more. Step by step I get what I want. 

  

But I was wondering, do the Americans goverment reckonise FM, for the Dutch do not. We have to fight and struggle to get something done. But how is that in America? 

  

Sincerly, paulien 

America is starting to recognize it, but for the most part Americans are ignorant.  Read my recent posting regarding a fight for a cure.  We need to come together in numbers, whether it is the USA or the world.  We must connect in finding a cure for this FM. 

  

Yours truly, 

Kristie B. 

fyte4acure : ) 

 
September 22, 2005, 2:57 pm CDT

Find a better Doctor

Quote From: cprouty

Hi everyone, 

  

First time user and have been reading your notes.  How about Fibermyalgia?  Have no arthritis but this is getting really bad.  On top of that pain the meds are killing my stomach.  My grandchildren don't understand why Nana can't play like she use too!  Does anyone have any suggestions?  My doctor says it's only going to get worse and has advised me to go on disability.  Please Help!! 

Please do find another doctor.  While your doctor may be telling you the truth, the doctor should also provide some hope for you, not make you seem like damaged goods.  I will not go on disability as I am stubborn and want to make something out of my life as I am still very young (30).  You are the one who decides on disability.  It is okay to do so if you wish.  However, You are not damaged goods!  Please read my comment recently posted on funding for a cure. 

  

Yours truly, 

Kristie B. 

fyte4acure : ) 

 
September 22, 2005, 3:01 pm CDT

Book on Fibro for youngsters

Quote From: grimli

Hi, 

  

Like the title said. 

  

I have found my way here. 

  

I know since dec 2003 that I've fibromyalgia (fibromyalgie). My world fell apart. Because I was only 28 at that time. I found it unfair. Why me, that young. I want so much, but my future has change, not knowing what kinda work I could do.  

Just sitting at home feeling sorry for myself.  

  

Very slowly, with help from my parents and friends I crawl back.  

  

But my turning point was, when I was at de youthmeeting for youngs with FM. I realise, if I want to work again, I have to change the way of living.  

I need structure in my life. Each day I wake up at same time, if the pain hasn't woke my up to early. And very slowly I walked 10 minutes, three times a day. And now, 6 months later I walk 2 times half hour.  

I even dare to think about working again. I've started wit a hobby study pshychologie (don't know engelish word anymore). Now I know I want to help others with the same illnes, especially young ones. Because the have differents problems. Study, school, work, relationship, kids or not.  

So I decided when I have enough money I wil go to do study psychologie on high level.  

  

Right now I ork on a book, youth with firbomyalgia. because there is no books that is focus on them, but talking about others problems. And some one has be the first, so I decided that.  

  

2004 was not my year. 2005, up till now, is has been my year. I became stronger and now I know, there is for a reason that I have FM. To help others. To carring out my positive.  

I write on my own site every day journal. 

and I hear from them that my story help them to lift up to. Not to feel alone with there feelings.  and because I try look everything on the bright side. 

  

Yes of course I have my bad days, I wil always have bad days. But my good days are more. Step by step I get what I want. 

  

But I was wondering, do the Americans goverment reckonise FM, for the Dutch do not. We have to fight and struggle to get something done. But how is that in America? 

  

Sincerly, paulien 

Good luck on your book!  I hope to read it someday soon! 

  

Yours truly, 

Kristie B. 

fyte4acure : ) 

 
September 23, 2005, 12:47 am CDT

dear Kristie

Quote From: fyte4acure

Please do find another doctor.  While your doctor may be telling you the truth, the doctor should also provide some hope for you, not make you seem like damaged goods.  I will not go on disability as I am stubborn and want to make something out of my life as I am still very young (30).  You are the one who decides on disability.  It is okay to do so if you wish.  However, You are not damaged goods!  Please read my comment recently posted on funding for a cure. 

  

Yours truly, 

Kristie B. 

fyte4acure : ) 

I'am 38 years young and since 14 years I know that I have Fibromyalgia (FM), I had many many bad years, I was in a wheelchair I could not walk for 15 minutes. 

Since 1,5 years I feel so much better that I start working again, I ever use my wheelchair. 

I start with a new hobby.......running so you can feel better with FM, I 'am not everyday painfree but I can handle it. 

  

For 1,5 years I found a doctor who gave me good advice, I use now some supplements and a diet against the pain from FM, and I feel much much better. 

I can by the supplements in a drugstore no problem at all, I use a Magnesium, MSM, mutlivitamines, omega 3&6, and chlorella. 

  

I hope you can read my englisch because it is not that good,I am from Holland. 

  

Perhaps you can find a dochtor who can help you with this??? 

Take care,Karin 

 
September 23, 2005, 4:00 am CDT

HI Mel

Quote From: meljor

We can always hope that they will find something to help us! My dr is the leading specialist in the Carolinas over here in US, and he says the earlier CRPS is diagnosed, the better it is to try to control the symptoms and keep it at Phase I. But there is no cure. You can check out his website at Piedmontpmr.homestead.com if you want to see what he says about it. Also, check some of the messages for the last couple of weeks, there is another website for a dr in Florida who treats CRPS also that is very good. :)  

The message I referred to was a "commercial" type message for some kind of supplement. Apparently the chronic pain just dissapeared and the person was pain free now, please call blah blah. I was very offended. Glad you didnt see it, but it was addressed to you.  

I hope you have a low pain day, gentle hugs-Mel 

 thanks for that, i couldn't  get you're specialists site but i managed to get the other site...
there was so much to take in but thanks to you i can give my doc the web address & he can learn more about it (lol)...
I hope you have a good weekend with low pain better still no pain take it easy. zip x
 
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