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Topic : Living with Chronic Pain

Number of Replies: 7290
New Messages This Week: 0
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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.

As of January, 2009, this message board will become "Read Only" and will be closed to further posting. Please join the NEW Dr. Phil Community to continue your discussions, personalize your message board experience, start a blog and meet new friends.

January 26, 2009, 8:03 am CST

Anybody with MS?

  I've posted on the board before, but only once that I remember and I can't find that now.  My signifigant other has had Multiple Sclerosis for over ten years, and maybe more.  That was just when the diagnosis was, so we're not sure exactly how long.  Now, I'm her primary caregiver and it's pretty much a full-time job anymore.  She can still bathe (barely) alone, which is good, she can feed the cats and even cook sometimes, but she has chronic back pain from the MS.  It's caused by arthritis in the back, and aside from that she has terrible pains in the legs and other spots from time to time.  For the last 8 - 9 years, she has been on pain medication, at first mild drugs like Vicodin, then they switched her to Methadone and finally morphine for the last few years.  Even the morphine doesn't completely kill the pain, and she takes six per day!  Her tolerance has gotten to the point where it's mainly a maintenance thing now.  She manages to "maintain" on the dosage given (even though it's not enough), but we feel lucky to be getting at least that, otherwise she would be miserable constantly.  She never seems "high" or anything, it's like the drugs just make her able to live a little better quality of life mostly.  Insurance pays for that, thank the Lord, else I'd have to go back to work, which would leave her with nobody to help her or watch out for her.  The last job I had to quit because she would fall down sometimes and really get hurt, unable to get the muscles to move to even get to the phone!  It scared me, so I had to quit and take on the full-time responsibility of caregiver.  I do all of the driving, I fix EVERYTHING in the house that needs it, I do the majority of cooking, I clean, after the cats a lot, and just about everything else that needs to be done.  At this point I am grateful for the things that she CAN still do, at least for now.

  Well, I just wanted to give y'all a good description of what our lives are now, and see if there are any other MS sufferers out there or anyone like me who gives most of their day to an MS patient.  It would be good to talk with others in the same or similar situation, as I don't know many people at all anymore.  We struggle to get by on her disability, and I should have disability as well but can't afford a doctor to declare me disabled.  I screwed my back up about 25 years ago, and it hasn't been right since, even with massive amounts of chiropractic work (very expensive without insurance).  I tried going to a clinic but they just kept giving me the runaround for several months and I finally gave up as it was getting clear that this so-called "doctor" wasn't going to do anything for me except "make an appointment next month".  Here I am about to die from the back pain, and they don't give me any meds or any treatment and just want me to come back the next month?  Of course, at the time I did have insurance, and they were just running up a big whopping bill but never doing anything for me.  It sucked!!

  Allright, I need to go now, but I'm looking forward to hearing from any others with MS or caregivers of such, and I'll be back to check responses.

 

Later.

 
January 26, 2009, 4:57 pm CST

*MAGICALLY APPEARS*

PROF! BECKY! DIANAH!

 

I don't know what happened to me! I fell off the face of the earth! Went through a pretty rough depression/panic attack period but now I'm better!

 

Anyone want to summarize what's been going on?

 
January 28, 2009, 8:19 pm CST

Hi there

Quote From: nextdrphil

PROF! BECKY! DIANAH!

 

I don't know what happened to me! I fell off the face of the earth! Went through a pretty rough depression/panic attack period but now I'm better!

 

Anyone want to summarize what's been going on?

Honey...

 

You have to go on the NEW SITE... that is were we all are.. I was just bored and thought I would hop on here and THERE YOU ARE....

 

We have been so worried about you... Here's my address... write me.. dharden@collinscom.net

 

I'll tell everyone you are back....

 

If you go back a few pages you will see how Prof showed me how to get on the new site for chronic pain.. If I can do it... HA... you can do it.....

 

Love Dianah

 
February 2, 2009, 4:45 pm CST

Living with Chronic Pain

 i've never posted a msg before so i hope i'm in the correct place.  i have a rare disease called Ehlers-Danlos Syndrome Hypermobility Type.  i have been in chronic pain starting at the age of 11 (i am now 39).  I wasn't diagnosed with EDS until i was 20 & in the years before diagnosis i was often treated like my pain was "all in my head".  I now have a great family doctor & for the last 3 years the pain has been  managed with an opiate based drug.  although i feel better than i have in many years, i still deal with pain every day.  Getting out of bed in the morning is usually difficult as my spine will seize up with the lack of movement overnight.  Constant motion is the best thing for my spine but most of my major joints will easily dislocate if i'm not careful. i am very isolated & have no true friends.  i don't want anybody's pitty & so very few people know the extent of the pain i am in.  Trying to keep that secret isolates me because you can only hide the pain & smile for so long each day & then i must shut myself away where no one can see me melt down.  Nobody wants to be around a whinner right?
 
February 4, 2009, 7:45 am CST

operation failure

hi DR PHIL cant someone pleas help me i had an operation and wasn't i successful now i have the colonoscopy bag and no stomach  mussels and thy say it will just grow until  my stomach cant hold my intestines and will burst cant one of you pleas help me....... no one in south Africa can help me 
 
February 8, 2009, 3:14 pm CST

Living with Chronic Pain

Well, apparently most people just POST to this "forum", and it doesn't appear that many actually read this VERY LONG thread here. I don't know who designed this system, but it could use a serious LOT of work! What's the point of having a discussion if you must read through hundreds of posts first to gain an understanding of what is there? Months ago, I asked if anyone has spouses or loved ones with Multiple Sclerosis, but never heard a word about it or saw any other replies to it. I still have problems finding the message boards, and for the life of me can't find anything on the normal menus to access it. Only when I scroll to the very bottom of the page can I find it, and that's not good programming style (for whoever did it, and yes, I've done a bit of programming in my day so I can say that). I'd consider a little rework for this, as I'm sure a lot of visitors would like to interact with the other viewers of the show. I would say LOL, but I can't stand LOL.
 
February 11, 2009, 9:29 am CST

NEW DR. PHIL COMMUNITY

Quote From: gwmorris

Well, apparently most people just POST to this "forum", and it doesn't appear that many actually read this VERY LONG thread here. I don't know who designed this system, but it could use a serious LOT of work! What's the point of having a discussion if you must read through hundreds of posts first to gain an understanding of what is there? Months ago, I asked if anyone has spouses or loved ones with Multiple Sclerosis, but never heard a word about it or saw any other replies to it. I still have problems finding the message boards, and for the life of me can't find anything on the normal menus to access it. Only when I scroll to the very bottom of the page can I find it, and that's not good programming style (for whoever did it, and yes, I've done a bit of programming in my day so I can say that). I'd consider a little rework for this, as I'm sure a lot of visitors would like to interact with the other viewers of the show. I would say LOL, but I can't stand LOL.

THIS MESSAGE BOARD HAS BEEN CHANGED TO THE NEW DR. PHIL COMMUNITY.  TO GO THERE, PRESS THE "NEW DR. PHIL COMMUNITY" PROMPT ABOVE...THERE ARE A LOT OF PEOPLE OVER THERE...ALL OF THE PEOPLE POSTING THERE. 

 

WHEN YOU SET UP YOUR MESSAGES, SET IT TO SHOW THE NEWEST POSTINGS FIRST...WE HOPE TO SEE YOU OVER THERE...

 

BY THE WAY, MY BROTHER HAS MS....WE MIGHT BE ABLE TO SHARE ON THIS.

 

BECKY

 
June 2, 2009, 3:30 pm CDT

CHRONIC PAIN AND EXERCISE

Dr Phil,

   My name is Diane . I have wrote other times and not received a response. I know you are very busy but you say you check the message board. I have had chronic pain for many years. My back is fused from T-4 to L-4. At the lower levels T-5, S-1,2  is a mess. I have degeneration, pinched nerves, arthritis, and more. I think you get the picture. i weight 275 and really need to lose  weight. Dr's. tell me to exercise but there is little I can do. I could have surgery but only a 50/50 change I will walk after it.  I hope you get this note this time. I am frustrated with my life the way it is. I am a born again Christian and know 'God is in control, but even though frustration sets in. I do have days better that other, but there are days I just don't want to get out of bed  I'm so depressed. PLEASE READ THIS AND LET ME KNOW WHAT I CAN DO TO LOSS THIS WEIGHT. Chiropractic has help to ease the pain some in the low back but I have to go so often. I have even thought of going to Mayo Clinic to for a complete work up to see what they might be able to do.
THANKS FOR READING THIS.  Diane  Email is adforberg4954@juno.com  . Cell phone: 360-520-5151.  I'm not if this is posted for the public to read or just you so I left out my last name and home phone.   Thanks again.  Diane
 
July 23, 2009, 2:32 pm CDT

No more Fibromyalgia

I've lived 10 miserable years with Fibro. about 2 month ago it got so bad I was debilitated. I knew about Lyrica I saw the commercials on TV many times, however I didn't want to take a new drug, but when I was desperate I didn't care any more. From the next day that I started to take lyrica OMG, my life changed. All I can say is that every day I got better and better, I couldn't walk around the block, 5 minutes walk, now I'm walking 2 hours in the summer heat, and I'M FINE, I'm happy to say. I feel like I got my life back. You guys, don't think another second, why suffer, take Lyrica, and be done with this awful thing. Your life is waiting for you. take control, Lyrica is it.
 
August 8, 2009, 1:45 pm CDT

You are not alone

Quote From: ladidi100

Hello;  I am new here and this topic is of interest to me since I live with chronic pain on a daily basis. You see, I suffer from Rheumatoid Arthritis (NOT AN OLD PERSONS DISEASE).  Although I am 58 years young, (diagnosed 3 years ago) some days I feel like 100.  I have never heard of any discussions on chronic pain, specifically RA on any talk shows (perhaps I missed it) but it is one of the most misunderstood diseases.  When you are diagnosed with severe RA, you are unable to work at a full-time job (I worked for nearly 40 years before being diagnosed) and most times, part-time is out of the question too.  You then become a person who is 'invisible' to most friends and some family members.  They either don't believe you are in pain all of the time, or they don't know what to say.  It's like you have gone off the radar screen or something;  it changes your life forever and it is a real shock when you find out just how others perceive you and your disability.  Not many of your friends or family visit anymore; no phone calls to see how you are doing or coping or if you might need some help or maybe perhaps a meal brought in when it's too tough to stand for very long and cook the family a meal.  My husband is great at doing housework each day after working a full day at his place of employment.  An 18 year old son does understand to some extent but still looks for that 'ride' to his friends or the show when all you want to do is scream in pain because your feet are too sore to stand on.  I just smile (grin) and bear it and put on a good front most of the time.  Maybe that's my problem, I need to grimace and be more vociferous when my pain is almost unbearable. There isn't even an Emote to describe 'pain' let alone 'severe pain'.  Oh well, I have a good outlook now after three years to appreciate the smaller things in life as they turn out to be the most important things.  Just a smile from a stranger, sitting and talking to my little puppy, or waiting for my husband to come home, or just sitting on my porch enjoying the sunshine and my beautiful flowers (my husband planted them for me).  God is good and I do not take anything for granted (most of the time :)).   Anyway, thanks for letting me vent and hope to hear from others who are living with chronic severe pain as I'm sure I'm not alone (although it feels like it sometimes)

Blessings to all.

Living with chronic pain is a lonely, difficult, daily, day long, second by second battle that NO ONE except someone with chronic pain will understand.  People think they understand, they want to understand but there is no way they can.  The most painfull thing is when someone professes to know exactly how you suffer because they had their wisdome teeth pull, tonsils removed, knee surgery or because they had a family member that suffers from chronic pain.  The only way to know how you feel is by living our daily hells!  The care giver has about the closest clue as you can have with out suffering from chronic pain themselves.  But even they do not know the sever difficulties we suffer daily all day long.  I suffer from chronic pain and this is the first time I am discussing this.  I have Lupus, Fibromyalgia, Hashimoto thyroiditis, inflamatory arthritis, degenerative disc disease, tendinitis, contra malasia, etc...  I look fine on the outside when the pain is at is lightest but that is rare.  People have said things like, "you look fine, there is nothing wrong with you or you would look sick"  What does sick look like?  People are extreemly superficial, all they care about is them and our illnesses are a drag on them and slowly you loose everyone you thought was a true friend.  I get the same treatment from my family, they stay away also.  I never tell people I have illnesses and I don't talk to my family about it either.  I live pretending none of it is true.  I struggle to do everything I used to do for my family but I can't any longer and they refuse to help out.  I am on my own and alone to suffer in silence.  I also feel guilty, I feel like I am dammaged goods and my husband deserves better and did not sign up for a defective wife.  We are getting divorced now so he is free to find a healthy wife now.  I no longer have to feel guilty about having ruined his life also.  You have a wonderful husband, I am happy that he helps you, he gets it.  I did everything at home, work, etc... and never asked for any help to do it until my issues became crippleing.  When I did ask for help I got attitude, rudeness, cruelty, etc...  I was on my own and suffered in constant silence.  I was absolutely alone and that just added to my daily all day long pain.  Chronic pain causes depression, lethargy, etc... and no one gets it because you don't have huge warts growing out of your forehead!  Do you park in handicap parking?  I don't unless I am using two canes to walk because I am afraid people will think I am falsely using the parking spot as someone did when I was using only one cane.  It is not fun is it?  Your friends that don't come by or call, truly aren't (friends) and the sooner they reveal themselves the better off we are.  I am now, as I said, getting divorced and because of it have lost my whole family but I am doing good on my own and have actually gotten better medically.  My dream is to become 100% cured of all my medical illnesses, maybe a dream but at least I can dream now.  Hang in there you are NOT alone as you said.

God is by my side and yours.

 
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