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Topic : Living with Chronic Pain

Number of Replies: 7290
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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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August 30, 2005, 11:23 pm CDT

Knee Replacements and Thalidomide

Quote From: billysgirl

 

  Hello Again Everyone,,  I just wanted to ask you all a question. Does anyone on the board know if their mothers took thalidamide when they were pregnant with them, back in the late fifties or early sixtites?  My mother took it and I think that is a big part of my problem with my joints. You see thalidamide was given to pregnant women back then for morning sickness,, but it caused bone NOT to form where it was suppose to form,, instead of bone forming cartalege formed, and we all know if we have arthiritis what it does to cartalege.  I'd just like to know if anyone else is having the problems that I am because of this drug.  A good friend of mine told me that her mom took the drug when she carried her older sister and her sister had to have her knee cap replaced when she was very young, and they recomended a knee replacement for her at the age of 11. So, anyone out there a thalidamide baby?  It was devastating to some of the babies that were born.  God Bless Everyone here. And lets all pray for the people in Mississippi, Alabama, and Louisiana. They need all the help they can get.  Martha 

Martha:  I'm new to this group, but I had a friend whose mother was given thalidomide during her pregnancy.  My friend had numerous skeletal problems which were mostly limited to her pelvic and lower back area.  She was told it was because of her mother taking the drug while pregnant with her.  She also was told she'd never be able to have children. I lost touch with this lady about 10 yrs. ago so don't know if she continues to suffer problems.   

    

I was more interested in your knee replacements.  I am 64 yrs. old and limped around on a bad knee for almost 2 yrs.  A year and a half ago I had a total knee replacement.  A month later they went in and did a manipulation on the knee as it was not responding to physical therapy and they said it was scar tissue.  I have a 40 yr. history with Rheumatoid Arthritis which has caused me more fun than anyone should be allowed to have.  About 7 mos. after the manipulation was done, I developed septicemia poisoning.  It was based in the knee, went into the bone marrow, hit my brain, my heart, my pancreas and left me with strep pneumonia in both lungs.  They did a SECOND surgery on the knee to clean out the infection.  I now have Type 2 diabetes, congestive heart failure, a horrible time getting words out (its like I've developed a black hole in my mind and my thoughts fall into them and I have to dig them out), plus I'm still limping around on the darned knee.  So, not only did I NOT MAKE progress with the knee, I've now got a bunch of other problems and a lot more pain than ever.  I guess such is life.  But I refuse to live my life in a drug induced fog.     

    

While dealing with the RA over the years, I've learned that it hurt if I sat and cried about it or if I got up and tried doing things, so I chose to get busy.  Lots of times I would forget about the pain as I would get so involved.  Gardening was especially helpful at blocking pain.  Even if I didn't do anything but look at the weeds growing in the flower bed.  I loved to watch the worms and bugs running around.  Mother Nature was my salvation many times.  'Course, you're never nearer God's heart anywhere than in a garden.  And my grandsons are a true gift from God to help me deal with the pain.  Laughter is the best medicine and they DO MAKE ME LAUGH.  Chin up and enjoy the blue sky.....Sheryl   

 
September 1, 2005, 8:46 am CDT

Living With Chronic Pain

I to suffer from Chronic Pain. In 1994 I was hit by a driver who rear-ended me which started my Neck & Back Pain. My suffering from this problem didn't end until 2001, after seeing numerous doctors that consisted of Internal Med, Chiropractor, Pain Mgt. etc. It was very frustrating because nothing seemed to work. I tried various anti-inflamatory medication, steriod injections. Finally several of my online buddies gave me referrals too Specialists that they had success with. In 2001 I finally had my first surgery. The many surgeries I went through consists of eye, foot, back & neck, total hyst (TAH/BSO) and knee surgery. Just three weeks ago I was having Chronic Pelvic & Abdominal Pain, which my GP couldn't help me, she gave me a referral to see a Urologist. He ran tests, and 2 days later I had a CT-scan & the results indicate I have Endometriosis of the Bladder. Depression certainly had taken it's  toll on me, and so many other health symptoms surfaced. Each day living with pain hurts Mentally, Physcially, & Emotionally. 

I'm so grateful for the Support Groups because I realize that I'm not in this alone, & I've also met some terrific people & developed wonderful Friendshsips.  

There's much more that I can share with you, but for now I must close, my pain-level is 

elevated. Thanks so much for reading my post. May Everyone Have A Nice-Pain Free Day. 

 

DolphinLuver 

 
September 1, 2005, 6:21 pm CDT

Now you make me wonder ???

Quote From: bamagrammy

Martha:  I'm new to this group, but I had a friend whose mother was given thalidomide during her pregnancy.  My friend had numerous skeletal problems which were mostly limited to her pelvic and lower back area.  She was told it was because of her mother taking the drug while pregnant with her.  She also was told she'd never be able to have children. I lost touch with this lady about 10 yrs. ago so don't know if she continues to suffer problems.   

    

I was more interested in your knee replacements.  I am 64 yrs. old and limped around on a bad knee for almost 2 yrs.  A year and a half ago I had a total knee replacement.  A month later they went in and did a manipulation on the knee as it was not responding to physical therapy and they said it was scar tissue.  I have a 40 yr. history with Rheumatoid Arthritis which has caused me more fun than anyone should be allowed to have.  About 7 mos. after the manipulation was done, I developed septicemia poisoning.  It was based in the knee, went into the bone marrow, hit my brain, my heart, my pancreas and left me with strep pneumonia in both lungs.  They did a SECOND surgery on the knee to clean out the infection.  I now have Type 2 diabetes, congestive heart failure, a horrible time getting words out (its like I've developed a black hole in my mind and my thoughts fall into them and I have to dig them out), plus I'm still limping around on the darned knee.  So, not only did I NOT MAKE progress with the knee, I've now got a bunch of other problems and a lot more pain than ever.  I guess such is life.  But I refuse to live my life in a drug induced fog.     

    

While dealing with the RA over the years, I've learned that it hurt if I sat and cried about it or if I got up and tried doing things, so I chose to get busy.  Lots of times I would forget about the pain as I would get so involved.  Gardening was especially helpful at blocking pain.  Even if I didn't do anything but look at the weeds growing in the flower bed.  I loved to watch the worms and bugs running around.  Mother Nature was my salvation many times.  'Course, you're never nearer God's heart anywhere than in a garden.  And my grandsons are a true gift from God to help me deal with the pain.  Laughter is the best medicine and they DO MAKE ME LAUGH.  Chin up and enjoy the blue sky.....Sheryl   

Actually, my mother took it. She had terrible side effects and stopped. Thank God.  

  

Do you have any research about this? 

  

Coffee   

 
September 1, 2005, 6:31 pm CDT

Just when I was wondering

The pain can never be relieved 100%. The best of the best, have tried their very best to help. Deep down, I know it is sometimes as difficult for them as it is for us. 

  

Just when the last glimmer of hope is extinguished, an angel is sent to rekindle the hope! 

  

It was my birthday yesterday! it started as one of those, you really don't want to get out of bed!! 

I got my license, with extra run around, was stabbed, radiated and drugged. 

  

Oh and by the way, I met my daughters new boyfriend in the middle of all this??!! 

  

Even my brother, who I never hear from and really have no clue who he is, stopped by and actually spent an hour talking to me!!!???? 

  

I am chuckling today, because of course what other day would ever be so much fun and emotion as "my day"! 

  

Regardless of the pain, "My wish for all", is to have as many "birthdays" as you can and cherish every moment your able. 

  

Thank You God! My prayers and my questions have been answered for today! 

  

Love to all 

Coffee 

 
September 2, 2005, 5:13 am CDT

Living with Chronic Pain

Quote From: coffee831

Actually, my mother took it. She had terrible side effects and stopped. Thank God.  

  

Do you have any research about this? 

  

Coffee   

   

   Hello Coffee,, I'm sorry I dont have any research on it. I've been wondering if there ever was any research on it.  I dont think there ever was.  I need bone fusion surgery on my left foot and my present orthpaedic surgeon just tells me, I only have a little arthiritis in my foot,  well,  when I spend just a little time on it it swells and when I take the pressure off of  it it hurts more than if I keep my foot on the floor.  I'll look around on the net and see what I can find out,, and get back to you ok?  Nice talking to you and hope you have a great day.    God Bless You,  Martha 

 
September 5, 2005, 11:08 am CDT

Hi I'm from The Netherlands

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 

 
September 5, 2005, 5:56 pm CDT

RSD/CRPS

Hello all,   

I am new to this site, and have been reading your posts. I too can relate to many of you. I was hit by a truck in 2003, which rolled my Passport. I now have Bursitis in my left shoulder, Post Traumatic Stress Disorder with Panic Attacks, and have recently been diagnosed with Reflex Sympathetic Dystrophy (usually referred to as RSD or CRPS). I was amazed at how few people know anything about this disorder. Essentially my nerves are telling my brain that I am still injured even after I have healed. I have lived with pain every day since my accident, which I was lucky to walk away from. I am not bitter, but I do feel horrible depression sometimes. I am also being treated now for possibly having bipolar disorder. UGH! I'm not even 30 yet, but I feel like my world is coming apart. The only thing that keeps me going is my beautiful 8 yr old son, the joy of my life. He has a hard time dealing with mom hurting, and I try to hide the depression as much as possible from him so he won't worry any more. I'm wondering if anyone else out there has this condition. My support group is good, but it's only once a month. Please contact me anyone, if you just need to talk.   

Gentle hugs,  

Mel   

 
September 5, 2005, 6:00 pm CDT

I feel you!

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 

Hi Paulien! 

I just posted, you may want to see my post, I have FM symptoms that overlap my RSD. I can TOTALLY feel you! One day at a time is the ONLY way to get through this! I'm 29, so I understand that also! I feel too old to be this young!  

America does recognize FM as a condition that Social Security will pay for. RSD is also a covered condition, but in both situations, you still have to fight for your disability, which is what I am doing right now. Thought I could answer that for you. 

Gentle hugs-Mel 

 
September 5, 2005, 7:45 pm CDT

Pain free-sort of

I too suffer from CP due to MS + mvp. No reason for anyone to continue to suffer like you all do. Get thee to a pain specialist #1. Secondly, haver y'all tried methadone for pain management. Not the kind of methadone addicts use but the kind they give people living in pain. Methadone, unlike morphine or any other opiate allows you to have a life, unhindered by walking around like a zombie. You think clearly. You are pain free. And you get your life back! Many people, after getting settled in with a proper dosage, actually find they can attempt to get back into the work world again - part time or whatever. But the main thing is that all or most of the things you enjoy doing - that make your life worth living again - you can do again. Your old body may not let you run themarathons you used to do but at least you will be able to walk to the neighbours, or tend your roses. Please get to a pain specialist who has the ability to prescribe methadone and is well trained. I, too, went through the epidurals every month for pain management and it a'int fun. And by the way, no one get's addicted to opiates including methadone, if you are using it for which it was intended.
 
September 5, 2005, 8:32 pm CDT

Living with Chronic Pain

Quote From: profderien

i am glad someone spoke up for methadone as an effective pain management tool.  all too often, people assume that it is only used for heroin addicts in their effort to go clean.  

   

the methadone used for medically supervised pain management is the exact same formula -- but usually is prescribed in pill form.  it is very effective and very inexpensive.  more and more pain management doctors are prescribing it fot both of those reasons.  extended release forms of drugs, like oxycontin, are being widely abused.  methadone, because of its long half-life, stays in your system just as long but lacks the abuse potential.  

   

i have been on the same dose for about two years -- for help with avascular necrosis [hips, shoulders, knees, ankles and RSD/CRPS.  to be honest, it doesn't help much with the bone pain but it is fairly effective against the RSD/CRPS pain... and that's saying something positive!  

   

everyone is so different when it comes to pain and how to relieve it -- as hard as it is to believe, pain is a subjective reaction.  [and tonight, for instance, i find that exceptionally difficult to believe! if you have chronic pain, a pain specialist is really necessary.  

   

although i must say i am ticked off by my new one -- still wet behind the ears.  i have recently suffered new fractures in my left foot and knee.  he doesn't get the concept of acute pain on chronic pain.  my internist just rolled his eyes... and i didn't find that especially helpful either!  

   

so a word of advice to all those with chronic pain -- ASK  now how acute pain is handled, should that occur! 

  

music is a wonderful help for me [just to talk about something besides drugs... as well as critters.  any work that i can undertake is helpful...  but god save me from daytime t.v. -- dr. phil's show excepted. 

  

be well, everyone, g'night! 

glad to hear what y'all have to say about pain mgmt. My doctor, unfortunately (sometimes) does not believe in narcotic therapy. He is a leading specialist in the southeast, and I do trust him, though I curse him some days!!! I've done pretty well, my pain tolerance is MUCH higher than it used to be, but the rash of hurricanes has been killing me. I chose to see this dr so I could try to learn to live with the pain, but I cannot work. I havent worked in months, and when I tried part time, I was unable to function at home because it took so much out of me. Now the doc is treating me for Bipolar disorder, because of my depression and mood swings. Guess we will see where that ends up! ha ha. Thanks so much, I love you guys for letting me know you are out there! 

  

 
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