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Topic : Living with Chronic Pain

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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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July 23, 2005, 5:27 pm CDT

Living with RA and chronic pain

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.

 
July 23, 2005, 6:06 pm CDT

Chronic Pain here also!

Hello,

 I too suffer from chronic pain, due to Degenerative Disc Disease. I have had 4 surgeries directly related to this, and 6 surgeries for various other problems, though none were elective. I know I need another operation on my neck, which would be the 3rd there, because the fingers in my left hand are going numb.

 I was diagnosed with Juvenile Rheumatoid Arthritis when I was 15 yrs old, and went through 2 1/2yrs of pain, which included getting weekly shots of Gold Salt Injections, and weekly blood & urine tests. That in itself was pain enough, but I also had to sell my horse which I'd only had for about 3 months (a childhood dream, unable to come true til then due to moving every 3 or so years as we were a military family), was in the hospital 6 times one summer, and had to travel by helicopter to Keesler Air Force Base by myself for a week of testing.

  Now as an adult I've had a total of 10 operations in the last 15yrs, and believe me there's nothing I'd like better than to be free from all this pain. I'm on a prescription plan which includes Methadone, Lortabs, and various other pills, just to maintain the pain, but it doesn't really go away, does it?!  I've applied for disability, as I'm a single parent, and haven't been able to work since last October, therefore I have no insurance for myself. I was denied the first time by the people who decide whether or not you're able to work, so I've retained an attorney to file an appeal, which takes anywhere from 12 to 14 months!!  I now have maybe 8 months to go before the appeal. I now have been diagnosed with major depression and generalized anxiety disorder, thanks to all the red tape. I am blessed enough to have a mother and an ex-husband who are helping to pay our rent and untility bills, (my mother is using her retirement savings which makes me feel guilty as hell), and we at least qualified for food stamps.  What on earth do people do if they have no one to help them?  I firmly believe that's where a lot of our homeless people come from, waiting on our government to help them.

  I've lost 2 jobs, and a 2yr scholarship, so believe me when I say I DO understand your pain.  All we can do is what we are doing, which is just getting through one day at a time. And pray alot. One of my doctors said recently that God must be preparing me for something special.  I can believe and accept that, but I'd sure like to know WHEN?!!!  Seriously, I'd like to go back to school and major in psychology, because I believe I could help other women in going through times and circumstances like ours.

 I'll remember you in my prayers,

 Karen

 

 
July 23, 2005, 6:33 pm CDT

You are special

Hello,

I too suffer from chronic pain, due to Degenerative Disc Disease. I have had 4 surgeries directly related to this, and 6 surgeries for various other problems, though none were elective. I know I need another operation on my neck, which would be the 3rd there, because the fingers in my left hand are going numb.

I was diagnosed with Juvenile Rheumatoid Arthritis when I was 15 yrs old, and went through 2 1/2yrs of pain, which included getting weekly shots of Gold Salt Injections, and weekly blood & urine tests. That in itself was pain enough, but I also had to sell my horse which I'd only had for about 3 months (a childhood dream, unable to come true til then due to moving every 3 or so years as we were a military family), was in the hospital 6 times one summer, and had to travel by helicopter to Keesler Air Force Base by myself for a week of testing.

Now as an adult I've had a total of 10 operations in the last 15yrs, and believe me there's nothing I'd like better than to be free from all this pain. I'm on a prescription plan which includes Methadone, Lortabs, and various other pills, just to maintain the pain, but it doesn't really go away, does it?! I've applied for disability, as I'm a single parent, and haven't been able to work since last October, therefore I have no insurance for myself. I was denied the first time by the people who decide whether or not you're able to work, so I've retained an attorney to file an appeal, which takes anywhere from 12 to 14 months!! I now have maybe 8 months to go before the appeal.I now have been diagnosed with major depression and generalized anxiety disorder, thanks to all the red tape.I am blessed enough to have a mother and an ex-husband who are helping to pay our rent and untility bills, (my mother is using her retirement savings which makes me feel guilty as hell), and we at least qualified for food stamps. What on earth do people do if they have no one to help them? I firmly believe that's where a lot of our homeless people come from, waiting on our government to help them.

I've lost 2 jobs, and a 2yr scholarship, so believe me when I say I DO understand your pain. All we can do is what we are doing, which is just getting through one day at a time. And pray alot. One of my doctors said recently that God must be preparing me for something special. I can believe and accept that, but I'd sure like to know WHEN?!!! Seriously, I'd like to go back to school and major in psychology, because I believe I could help other women in going through times and circumstances like ours.

I'll remember you in my prayers,

Karen

Hi Karen;  After reading your note, I feel sorry that you are enduring such pain; in more ways than one.  I live in Canada and we have a great medical system here.  I had no problems getting CPP (Canada Pensoin Plan) Disability and also a disability from my employment pension.  Do you have an Arthritis website in the US?  If so, perhaps you can get information on that website regarding pensions and advocates for arthritis sufferers;  We do have it here and although the Arthritis Advocates do all that they can, there is still lots to be done.  Perhaps speaking out in this way will let others know the dilemma we face; not only with the painful debilitating diseases, but how our governments are SLOW.....in reacting.  I wonder if their families have any of these chronic diseases and know the frustration and helplessness we go through...???   If nothing else, we become stronger through this disease just coping with day to day life and all that it brings (or doesn't bring).  Like you said, Iwonder what people who do not have family support do?  It truly is sad.  Like you, I also believe that God has a purpose for our lives and one day it will be revealed to us.  So take care, chin up and may God bless you abundantly each and every day.  I too will pray for you and your children and that your government will hear the message and fill your needs.   LadiDi
 
July 24, 2005, 3:49 am CDT

Living in pain

I have also been living in chronic pain, for the last 12 yrs I have been in pain. I was injured in a MVA while driving a group of co-workers to a satellite office. We were rear-ended and my neck hit the headrest and I ended up with 5 ruptured disc and a broken neck. I have a plate in my neck which has been replaced once and wires holding the rest of it together. I have been fussed from C-4 down to T-4. About 4 yrs ago I had a pain pump put in which has helped alot. I get it refilled every 28 days with dilauded. I used to get morphine but developed an allergy to it. One of the things that makes living in pain so bad is that other people can't see your pain so it is hard to understand what we go through. Add that to being fairly young and you have to live with others thinking you don't want to work instead of you can't work. Thank God my family is so great...my husband of 23 yrs is a God send. After all my surgeries and every thing we have been through I know he is not going anywhere and that is the greatest feeling in the world.

We know that I will have to have more surgery pretty soon...just found out I have 2 more bad disc. But I am going to wait as long as I can...after 7 surgeries I don't want to go back for more.

I hope the weather is good where you are and that today is a little better than yesterday for each of you.

 
July 24, 2005, 7:25 am CDT

Living with Diabeties

I have a 5 y/o son who is Type 1 Diabetic and insulin dependant. I feel pain in my heart for him. Each day is a struggle for him. He has to have 3 shots of insulin a day. He is angry. He yells: " I dont want diabeties! I dont want no shot, it hurts! "  I know he has to have these shots in order to live, but he doesnt understand that yet. I have done alot of research on diabeties. His life span is 10 years shorter than someone without it. He is at a higher risk for heart failure, kidney disease. He is subject to start having heart attacks and strokes in his late twenties, early thirties. His vision will eventually get poor. If his blood sugar gets too high or too low he is subject to go into a coma or even death. We/he have to take special care of his feet or he will lose them later on in life. He has some days where he will scream and hit the walls and cry if his sugar is too high or too low. All of this is tearing my heart up. I keep asking God, why? Why him? Why did he get this? I sometimes sit in my room and cry. My 5 y/o son came in one day and saw me crying and said: " I have diabeties, what's wrong with you "? I know he can live a healthy, productive life if we take good care of his diabeties. He was diagnosed in November, 2004 when he was 4 y/o. His blood sugar was over 600 when he went into the hospital. God saved him. When ever I feel depressed and have  a problem, I think about my sons life and my problem is no longer a problem.  We monitor him closely. We check his sugar 4-6 times a day. He is on a special diet. He starts kindergarten this year and I am worried about him going to school. I know he will be fine, but I cant help but worry. There is an old poem that really helps us in times of desparation. It is called: "footrints in the sand". I feel for everyone who has to live their life with some type of pain, but with the Grace of God, he will carry us all through it. Just wanted to share our story. God Bless you all. jb7ctx
 
July 24, 2005, 7:44 am CDT

Footprints in the sand

I have a 5 y/o son who is Type 1 Diabetic and insulin dependant. I feel pain in my heart for him. Each day is a struggle for him. He has to have 3 shots of insulin a day. He is angry. He yells: " I dont want diabeties! I dont want no shot, it hurts! " I know he has to have these shots in order to live, but he doesnt understand that yet. I have done alot of research on diabeties. His life span is 10 years shorter than someone without it. He is at a higher risk for heart failure, kidney disease. He is subject to start having heart attacks and strokes in his late twenties, early thirties. His vision will eventually get poor. If his blood sugar gets too high or too low he is subject to go into a coma or even death. We/he have to take special care of his feet or he will lose them later on in life. He has some days where he will scream and hit the walls and cry if his sugar is too high or too low. All of this is tearing my heart up. I keep asking God, why? Why him? Why did he get this? I sometimes sit in my room and cry. My 5 y/o son came in one day and saw me crying and said: " I have diabeties, what's wrong with you "? I know he can live a healthy, productive life if we take good care of his diabeties. He was diagnosed in November, 2004 when he was 4 y/o. His blood sugar was over 600 when he went into the hospital. God saved him. When ever I feel depressed and have a problem, I think about my sons life and my problem is no longer a problem. We monitor him closely. We check his sugar 4-6 times a day. He is on a special diet. He starts kindergarten this year and I am worried about him going to school. I know he will be fine, but I cant help but worry. There is an old poem that really helps us in times of desparation. It is called: "footrints in the sand". I feel for everyone who has to live their life with some type of pain, but with the Grace of God, he will carry us all through it. Just wanted to share our story. God Bless you all. jb7ctx
One night a man had a dream. He dreamed he was walking along the beach with the Lord. Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand-one belonging to him and the other to the Lord. When the last scene had flashed before him, he looked back at the footprints and noticed that many times along the path there was only one set of footprints in the sand. He also noted that this happened during the lowest and saddest times in his life. This really bothered him and he questioned the Lord. "Lord, you said that once I decided to follow you, you would walk all the way, but I noticed that during the most troublesome times of my life, there was only one set of footprints. I dont understand why, when I need you most, you deserted me". The Lord replied: "my precious, precious child, I love you and would never leave you. During your times of trial and suffering when you saw only one set of footprints, it was then that I carried you......"
 
July 24, 2005, 10:35 am CDT

Disability Info

Hello,

I too suffer from chronic pain, due to Degenerative Disc Disease. I have had 4 surgeries directly related to this, and 6 surgeries for various other problems, though none were elective. I know I need another operation on my neck, which would be the 3rd there, because the fingers in my left hand are going numb.

I was diagnosed with Juvenile Rheumatoid Arthritis when I was 15 yrs old, and went through 2 1/2yrs of pain, which included getting weekly shots of Gold Salt Injections, and weekly blood & urine tests. That in itself was pain enough, but I also had to sell my horse which I'd only had for about 3 months (a childhood dream, unable to come true til then due to moving every 3 or so years as we were a military family), was in the hospital 6 times one summer, and had to travel by helicopter to Keesler Air Force Base by myself for a week of testing.

Now as an adult I've had a total of 10 operations in the last 15yrs, and believe me there's nothing I'd like better than to be free from all this pain. I'm on a prescription plan which includes Methadone, Lortabs, and various other pills, just to maintain the pain, but it doesn't really go away, does it?! I've applied for disability, as I'm a single parent, and haven't been able to work since last October, therefore I have no insurance for myself. I was denied the first time by the people who decide whether or not you're able to work, so I've retained an attorney to file an appeal, which takes anywhere from 12 to 14 months!! I now have maybe 8 months to go before the appeal.I now have been diagnosed with major depression and generalized anxiety disorder, thanks to all the red tape.I am blessed enough to have a mother and an ex-husband who are helping to pay our rent and untility bills, (my mother is using her retirement savings which makes me feel guilty as hell), and we at least qualified for food stamps. What on earth do people do if they have no one to help them? I firmly believe that's where a lot of our homeless people come from, waiting on our government to help them.

I've lost 2 jobs, and a 2yr scholarship, so believe me when I say I DO understand your pain. All we can do is what we are doing, which is just getting through one day at a time. And pray alot. One of my doctors said recently that God must be preparing me for something special. I can believe and accept that, but I'd sure like to know WHEN?!!! Seriously, I'd like to go back to school and major in psychology, because I believe I could help other women in going through times and circumstances like ours.

I'll remember you in my prayers,

Karen

TO ALL:

 

 

http://brain.hastypastry.net/forums/forumdisplay.php?f=61

 

Try this link for information on applying for disability. Hope there is something there that helps.

 

This is at a site with online patient support groups for people with neurological problems and other things.

 
July 24, 2005, 10:11 pm CDT

Chronic Back Pain - Searching for Help

I am a 40 year old with a wonderful husband, 8 year old daughter and 4 year old  son. I have had bulging discs at the L4-5 & L5-S1 since I was 21 and was usually able to control my pain with OTC's, exercise, chiropractics, and massage until January '04, when I fell roller skating. I have been through going to Primary physician, PT, 3 orthopedists, 3 MRI's (showed I haved bulges at L2 thru S1 and C4 thru C7, degenerative disc disease, and spinal stenosis), epidurals, 1 myelogram, and lots of meds. In November '04 found out from myelogram that I had a ruptured disc at L4-5 and had a laminectomy on 12/06/04 removing a 3cm piece. I did really well until about 4 weeks post surgery when I started the walking and pt.  My back pain is close to the pain level that I had before my surgery and still have pain in my low back, buttocks (left side and sometimes the right), and into my left leg (sometimes the right), heel and foot.

My orthopedist that did the laminectomy would never listen when I brought up the neck problems and the pain and numbness in my left arm and hand.  Finally, had an EMG done which came up positive for moderate carpal tunnel (didn't rule out radiculopathy) and he gave me a cortisone shot. That got rid of the numbness in my fingers for a couple of weeks but never the pain. I have severe pain and numbness that gets worse every day, in my neck, both shoulder blades, arms and hands. I have a very hard time eating, writing, crocheting, typing, and anything that requires any grip & have muscle atrophy and scared I may have permanent nerve damage.    I was let go from my job of 10 years on March due to my health and have filed with SSD (was denied the first time and have an attorney on it and they are continuing the denial at this time).  At this point I have severe cervical and lumbar pain and am very scared I will be paralyzed and/or lose the use of my hands.

My last visit with the orthopedist on 6/02, he told me he couldn't do anything else for me (you know, no more insurance!!) and that "no one would help me for free."  He sent me back to my primary for pain meds and she sent me to a pain clinic.  That doc currently has me on Methadone 10mg 4x, Robaxin 750mg 4x, Neurotin 300mg 3x, Nortriptylin 25mg bedtime, Prozac 20mg morning, and Percocet apap 5/325 for breakthrough pain (what is breakthrough pain?--the constant pain I have regardless of all the other meds?).  Have also been on Vicadin, Valium, Darvacet, Percodan, Flexural and others.    At this time, I have no insurance and don't qualify for medical assistance and I need medical treatment very badly and am suffering from depression and suicidal thoughts.  I really don't know what to do.  I applied for disability in Feb., was denied and have an attorney on it.  Got a letter a week ago and SSD is continuing the denial for lack of info.  My orthopedist, due to not listening to me, put in my medical records that I was getting better (the actual disc that he did treatment on, not all the other problems that he wouldn't address!) and SSD says that I should be able to work full-time come 11-05.  There is no way I will be able to do this and need to at least get a consultation with a "good" doc, one that will actually listen to me.   I have called the ER close to me because I am having so much pain in my left arm I am that desperate, but we don't have a doc close to here that would be able to help me and they would only be able to give me pain meds.  Lot of good that will do.     All that I can pray for is that soon I will get in touch with someone that knows someone that knows of a program or somthing that I will qualify for and can get some help.  I am so tired of calling people to see if they will take payments for treatment, but, everyone wants full payment up front.  If I can get fixed and make payments, I will be able to go back to work to pay it off.  If I wait too long, I will be permanently disabled and no longer to even think of going back to a normal life and working.  I guess only God knows.  Thanks for listening!!    LisaB From Missouri (Misery?)
 
July 25, 2005, 8:08 am CDT

Me too

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 (Iworked fornearly 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.

I am 55 and just (2 months ago) diagnosed with Scoriatic Arthritis.  I get some of the same responses.  My husband just can't believe that I am in pain almost constantly or that the medications make me sick/dizzy.  The RA doctor seems to think I've had this for years and that it was just misdiagnosed.  In the meantime, I'm dealing with severe depression.  I'll send you my prayers and thanks for writing about constant pain.

 

Sandy

 
July 25, 2005, 11:40 am CDT

living with chronic pain

I have been living the summer from hell.  I have fibromyalgia and I have lived from one flare to the next since early spring.  My dr. is sympathetic and my husband also understands.  I take every supplement that I read about that is suppose to help. 

I had been working out at the gym five days a week with a mix of using the treadmill, the machines and free weights coupled with aquabics.  I remember one week feeling really up and begining to "feel" my body as a good thing.  the next Monday my knee gave out while on the treadmill.  I found it difficult to use the machines and I kept dropping the free weights.  My dr. told me to lay off the gym until I felt better but my aquabics were ok.  The next week during an aquabics class I found myself fighting to breath and the chest pain was something else.  Back to the dr.  No more aquabics and more medications.

I started on the regeime I use when my fibro kicks in and eight weeks later I am still in pain, still running out of air and my whole leg hurts instead of my knee.  As I said my Fr. is sympathetic but I  feel really wierd going to the office almost every week, especially when I know that there is realatively little can be done for fibro.

I use meditation, playing my keyboard, painting, gardening, and prayer.  I know there are people my age doing wonderful things but not me.  I am depressed.  I am fat.  I am out of shape.  I am out of hope.

Is there anyone else out there like me.  What do you do?  Please don't tell me to look on the bright side or any other  moronically cherrie euphamisms.

By the way this is one of my good days.

 
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