Topic : Living with Chronic Pain

Number of Replies: 8876
New Messages This Week: 16
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.

Join the new Dr. Phil Community! Currently in BETA, the new Dr. Phil Community will allow you to personalize your message board experience. Start by creating your user profile here.

For help and FAQs on the new BETA Community, please click here.

User Mood
Happy

Message Emote
blank
October 27, 2005, 12:22 pm PDT

I hear your pain and anger!

Quote From: rhow176

I agree, it is better that your daughter was only 1 when you got sick. I have 2 younger kids that only know me this way so they don't know it to be anything but "normal" for them. But, I can't say that for my 2 older kids (16 and 15 from my first marriage live with me). In fact my 16 year old son just moved out about a month ago partially because he couldn't take the stress and seeing me this way anymore. He had other reasons for wanting to move back in with his mother, but that was a big part of it.  

  

I guess I need to grieve the loss of the person I once was, like you did. I just don't know that I can do that with so much anger, resentment, fear, sadness, etc. going on all at the same time, not to mention the fact that this was all preventable by those I trusted the most (Marines, government, Soc. Sec., the Veterand Administration). The guilt is as bad as anything else even though I know I did nothing to feel guilty about, I can't help but to feel guilty for everything my wife and children are missing out on because of what is going on with me. I've been to aa therapistmpsychologist and psychiatrist and they were all good at what they do, but it's just so hard to truely be honest with them for fear that they will put me away as a danger to myself and family. That I couldn't handle or rather won't handle.  

God Bless Mom's, my mother helps me out a lot to, helping me with my younger child that isn't in school yet, taking me to all my Dr. appointments........ 

It just seems to be proven everyday that it doesn't pay to be an honest or good person. I'm not perfect by any means, but I know I have always been a good person and have been screwed for it my entire life, but nearly all of the people that aren't good people, break major laws, neglect their families and no compassion for anyone but themselves, it seems they get the rewards and special consideration from government agencies.  

I'm sorry, I'm rambling again. 

I hear your pain and anger.  I hope you can put all that energy to good use!  Here is a list of things I've conjured up.  Tell me what is good and what is not.  I want your honesty! 

  

Here is a list of things we can do together to fight injustice of discrimination of "invisible" diseases:  

   

1)  Join a support group.  In support groups there are often advocacy opportunities.  Two well known support groups are the Arthritis Foundation and Immune Support.com (onilne).  This also helps us deal with the stress caused by our illnesses.  

   

2)  Write to your clinics and let administration know how upset you are about how you were treated by specific doctors.  Give them details and tell them how you went through what you did and should have had to go through it.  If they do nothing, they open themselves up for a lawsuit.  

   

3)  Write to local newspapers about how the illness has affected you and others.  If they don't want to work with you on the story, go to them in person and have a one-on-one chat with them, telling them how important it is for you and others to get the news out about your "invisible disease."  If they turn you down, go to the next one, and keep your chin up!  

   

4)  Keep on writing to talk shows, telling them how important it is for them to do a show on your "invisible" disease.  Then pray that someone cares enough to do a show on this and have it done properly as well.  

   

5)  Don't let others tell you to hide the illness like it is some secret.  At work I will be silent, but not anywhere else.  People need to learn about this illness, and being silent and ashamed is not going to help us being continually labelled.  They need to hear that this illness is real.  

   

6)  Start walks or events to support research for fibromyalgia and other illnesses.  

   

7)  Talk one-on-one with researchers, and don't dare bite your tongue.  They need to hear exactly how it affects us, and exactly what we think that caused it.  Finding a cure is not only their job, it's our job too!  They cannot find a cure without US!  

   

This is all I can think of right now.  I'm sure I'll think of more later.  This should keep people busy, I hope!  

  

Without a plan, anger can backfire.  Please come up with a plan to attack the problem at it's roots! 

  

Yours truly, 

Kristie : ) 

fight4acure   

Have fibromyalgia, CFS, arthritis in neck, among many other things. 

Age 30, 

Sufferer for 7 years. 

 
User Mood
Angry

Message Emote
blank
October 27, 2005, 9:24 pm PDT

pain and ager...

I read through your list and is does sound like a logical and effective plan of attack, so to speak. But, as I said in the first post, I think, there is a lot more to just what I wrote down here.  A lot of what I was referring to was doing things similar to the list you wrote.  I'm sure well thought out plans like that can do some good, but sometimes not. I compare it to sitting and making a list of my medical bills, prescriptions and regular bills. On paper, a decent plan can be formulated that actually might make things stretch, but again, things on paper sometimes doesn't match reality. I've gone the route of going through proper channels, making the right people aware of mistreatment and such. Frankly, here's what I got out of it: "It's not my problem nor fight", "Sorry to hear about all that", "I can't imagine the military or VA doing that", "I understand what you're going throughm but there's nothing I can do to help", etc... and that's the good stuff. When I was told by a Naval Dr (when I was in the Marines) in 1983 that I needed a surgery because the problem would only get worse without it, then told me I couldn't have the surgery. Following the chain of command all the way up to my Colonel and on the Colonels advice, I wrote my congressman. I got the surgery in 1985, I also got my promotion to Corporal held for a year to the date, and my next promotion to Sgt. held for 2 1/2 years, finding out later my record had been tagged "PI" (political influence). I wrote my Congressman about my Social Security hearing in August 2004, He initiated a "Congressional Inquiry" which teh judge read to me at the hearing, the "Inquiry" was merely, Please let me know the outcome of the hearing. Of course the judge gave me several dirty looks everytime he reminded me during the hearing about my asking for my congressmans help, stating he would be sure to let the congressman know the outcome. After I received the denial letter from the judge, that was filled with inaccuracies and mis-quotes used to deny me, I received a letter from the Congressmans office saying, I was glad to help and let me know if there is anything else I can do for you. But when I called, I was told all he could do is what he did...this "Inquiry" 

Basically, I see the military and VA as seemingly untouchable, not to mention they are in a "CYA" mode (covering their behinds). I have been fighting for my health since 1983 when I was just 20 years old and frankly, I can't handle anymore of the solutions and consequences that comes with it. I can't walk myself to the bathroom most of the time let alone walk in their offices. The picture I painted in my first post is very mild compaired to the rest of the story, I just didn't want to nor do I think I can even come close to explaining everything that has heppened with me physically, emotionally, medically, professionally........I know it's never too late to fight but again, that is on paper, not reality sometimes. Besides, I will probable be better off learning to accept what they have done to me and accept who and what I am today and accept whatever else comes along with it.  

I don't mean to devalue what you wrote, just that it hasn't worked for me and I physically and emotionally can't afford the results of fighting. 

I was just thinking, I'm sure glad my wife doesn't know I wrote all of this here. She would really get on to me for the way I feel on some of these things, but she isn't in my head or body feeling what I do and it wouldn't be fair to her to know how I feel on some things. She loves me but has had about as much stress in this as she can handle too... and doesn't need anymore to worry about, it would just tear her up and I couldn't bare to see that happen to her or my kids. 

  

The more I try to explain here the more I see it coming out the wrong way, almost sounds like I'm whining, but trust me, I'm not. This will probably come out the wrong way but I have fought for a lot of years and my body/health has paid the price for it, so has my family. My body and mind has nothing left to pay the piper with. I won't be saying anything more about this on the message board. I appreciate your comments and time.  

 

Message Emote
blank
October 28, 2005, 8:57 am PDT

Living with chronic pain.....

I've had intractable pain now for 5 years....The first 2 tears were bad, No one would really help me..Except my PCP, Thank God, I was a nurse and Had worked by his side a time or two and he had been my Doc for 11 years..So he knew me pretty well.   

   I got Dx. with a inoperable aneurysm (fusiform) LMCA in the M-2 section, basically in the middle of my brain...A very bad place and deep..Behind my left eyeball. At first the pain was tthere but it would Strike out suddenly and stop me in my tracks ~~A couple times a days..This lasted for hours..Now 5 years later, It is all the time...At first, Nuero's and Nuerosurgeons didn't know why I was in so much pain all the time...Blamed it on migrains (which I never had ) tension headaches and so furth... 

   But..I finnally found a amazing Pain Doc ,who knows what he is doing...Thank goodness,...But last August...My aneurysm started to grow~~out of the blue..See I looked everywhere for help and NO One would touch me....To dangerous they said...So I go to This Neurosurgeon in Cincinnatti in Ohio and He stated, " WE have to do something "  So we attempted brain surgery..He was able to put in a stent and it's metal so he tried to bend it in a way so it would go away from the nerve (5th cranial ) But I had a stroke....So he had to stop...And the stent didn't reach through to the other side of the anuerysm. Less2-3mm.....And he wasn't able to put in no coils....Other words, It was a failure...But I do know why I have So much pain... 

  

   It was explained to me..That my pulsating aneurysm beating against the 5th cranial nerve for So long it has done damage to it.. There is nothing in this world I can do~~surgery wise. So I manage it with seisure meds and pain meds...But I still live pain.... 

  

  And I still have this ticking time bomb in my head....Emotionally...I try not to let it get to me..But some days it is hard...Not knowing if this bad headache is the one or if this is gonna be the day....I have alot of resrictions...Of what I can not do...Not allowed to lift over 10 pounds or carry anything heavier than a gallon of milk..Keep my Bp low ( have hypertension) runs on both sides of my family. So I fight that daily. Keep my weight down.which isn't bad. Could loose 15 pounds.No stress allowed  ~~which is a hard one.. But the list goes on....Sometimes I think, I would do good if I got myself into some couseling..something I've never done..Thought about..Have good insurance from my husband. But could be hard driving at times. Only allowed to drive 10 miles into town and thats if I'm feeling good and have to have a cell phone by my side...i don't know...Sometimes it is just hard living with something that you know that could kill you in an instant , at any moment....But I do have a good family support and some really amazing docters on my side...So I'm really a pretty lucky lady...I just vented all my little thoughts and it did help ...Thanks and hugs, Studey 

 
User Mood
Happy

Message Emote
blank
October 28, 2005, 3:35 pm PDT

You know what is best for you!

Quote From: rhow176

I read through your list and is does sound like a logical and effective plan of attack, so to speak. But, as I said in the first post, I think, there is a lot more to just what I wrote down here.  A lot of what I was referring to was doing things similar to the list you wrote.  I'm sure well thought out plans like that can do some good, but sometimes not. I compare it to sitting and making a list of my medical bills, prescriptions and regular bills. On paper, a decent plan can be formulated that actually might make things stretch, but again, things on paper sometimes doesn't match reality. I've gone the route of going through proper channels, making the right people aware of mistreatment and such. Frankly, here's what I got out of it: "It's not my problem nor fight", "Sorry to hear about all that", "I can't imagine the military or VA doing that", "I understand what you're going throughm but there's nothing I can do to help", etc... and that's the good stuff. When I was told by a Naval Dr (when I was in the Marines) in 1983 that I needed a surgery because the problem would only get worse without it, then told me I couldn't have the surgery. Following the chain of command all the way up to my Colonel and on the Colonels advice, I wrote my congressman. I got the surgery in 1985, I also got my promotion to Corporal held for a year to the date, and my next promotion to Sgt. held for 2 1/2 years, finding out later my record had been tagged "PI" (political influence). I wrote my Congressman about my Social Security hearing in August 2004, He initiated a "Congressional Inquiry" which teh judge read to me at the hearing, the "Inquiry" was merely, Please let me know the outcome of the hearing. Of course the judge gave me several dirty looks everytime he reminded me during the hearing about my asking for my congressmans help, stating he would be sure to let the congressman know the outcome. After I received the denial letter from the judge, that was filled with inaccuracies and mis-quotes used to deny me, I received a letter from the Congressmans office saying, I was glad to help and let me know if there is anything else I can do for you. But when I called, I was told all he could do is what he did...this "Inquiry" 

Basically, I see the military and VA as seemingly untouchable, not to mention they are in a "CYA" mode (covering their behinds). I have been fighting for my health since 1983 when I was just 20 years old and frankly, I can't handle anymore of the solutions and consequences that comes with it. I can't walk myself to the bathroom most of the time let alone walk in their offices. The picture I painted in my first post is very mild compaired to the rest of the story, I just didn't want to nor do I think I can even come close to explaining everything that has heppened with me physically, emotionally, medically, professionally........I know it's never too late to fight but again, that is on paper, not reality sometimes. Besides, I will probable be better off learning to accept what they have done to me and accept who and what I am today and accept whatever else comes along with it.  

I don't mean to devalue what you wrote, just that it hasn't worked for me and I physically and emotionally can't afford the results of fighting. 

I was just thinking, I'm sure glad my wife doesn't know I wrote all of this here. She would really get on to me for the way I feel on some of these things, but she isn't in my head or body feeling what I do and it wouldn't be fair to her to know how I feel on some things. She loves me but has had about as much stress in this as she can handle too... and doesn't need anymore to worry about, it would just tear her up and I couldn't bare to see that happen to her or my kids. 

  

The more I try to explain here the more I see it coming out the wrong way, almost sounds like I'm whining, but trust me, I'm not. This will probably come out the wrong way but I have fought for a lot of years and my body/health has paid the price for it, so has my family. My body and mind has nothing left to pay the piper with. I won't be saying anything more about this on the message board. I appreciate your comments and time.  

You know what is best for you!  Acceptance is hard, but I know you're strong!  I wish you and your family well. 

  

Thank you for your honesty! 

  

Yours truly, 

Kristie : ) 

fight4acure 

  

 
User Mood
Nervous

Message Emote
blank
October 30, 2005, 1:39 pm PST

mom has fibromyalgia

 Hi everyone!  My mom has fibromyalgia and is in pain all the time. She was diagnosed about 5 years ago but has lived with it longer than that.  She also has severe Depression.  So I was just wondering if any of you had Fibro and would like an email buddy.  I think it would be good for her to chat with someone about this.  I try to talk with her but I think it would be more helpful if she talked to someone who knew exactly what she was going through.  Get in touch with me if you like.  Thanks!  Michele
 
User Mood
Peaceful

Message Emote
hopeful
October 30, 2005, 2:01 pm PST

Searching for a Light in Darkness

Quote From: fyte4acure

Thank you! 

  

Here is a list of things we can do together to fight injustice of discrimination of "invisible" diseases: 

  

1)  Join a support group.  In support groups there are often advocacy opportunities.  Two well known support groups are the Arthritis Foundation and Immune Support.com (onilne).  This also helps us deal with the stress caused by our illnesses. 

  

2)  Write to your clinics and let administration know how upset you are about how you were treated by specific doctors.  Give them details and tell them how you went through what you did and should have had to go through it.  If they do nothing, they open themselves up for a lawsuit. 

  

3)  Write to local newspapers about how the illness has affected you and others.  If they don't want to work with you on the story, go to them in person and have a one-on-one chat with them, telling them how important it is for you and others to get the news out about your "invisible disease."  If they turn you down, go to the next one, and keep your chin up! 

  

4)  Keep on writing to talk shows, telling them how important it is for them to do a show on your "invisible" disease.  Then pray that someone cares enough to do a show on this and have it done properly as well. 

  

5)  Don't let others tell you to hide the illness like it is some secret.  At work I will be silent, but not anywhere else.  People need to learn about this illness, and being silent and ashamed is not going to help us being continually labelled.  They need to hear that this illness is real. 

  

6)  Start walks or events to support research for fibromyalgia and other illnesses. 

  

7)  Talk one-on-one with researchers, and don't dare bite your tongue.  They need to hear exactly how it affects us, and exactly what we think that caused it.  Finding a cure is not only their job, it's our job too!  They cannot find a cure without US! 

  

This is all I can think of right now.  I'm sure I'll think of more later.  This should keep people busy, I hope! 

  

Yours truly, 

Kristie : ) 

fight4acure 

30 years old now 

Lyme disease/fibromyalgia/cfs/pn at age 23 

Wisconsin - I'm a cheese head! 

Kristie:) 

  

Thank you for the action plan.  I look forward to following each step.  I acturally was inspired last weekend and emailed the Dr Phil show with a pretty compelling note.  And I will follow up.  I never thought of the researchers.  I will spend the next month identifying them and others who I can address.  Thanks again.   

  

Has anyone ever called you an inspiration.  Because You are!!! 

  

Sincerely, 

Karen 

MeBecause 

Arkansas - Born Again RAZORBACK (former Texas Aggie) 

 
User Mood
Stressed

Message Emote
sad
November 2, 2005, 9:49 pm PST

I would love to help your mom

Quote From: love2help

 Hi everyone!  My mom has fibromyalgia and is in pain all the time. She was diagnosed about 5 years ago but has lived with it longer than that.  She also has severe Depression.  So I was just wondering if any of you had Fibro and would like an email buddy.  I think it would be good for her to chat with someone about this.  I try to talk with her but I think it would be more helpful if she talked to someone who knew exactly what she was going through.  Get in touch with me if you like.  Thanks!  Michele

I have fibromyalgia and was diagnosed about five years ago myself.  I also have severe depression and lymphedema.  Have your mom send me an email if she would like.   I  intend to start some of the suggestions about getting this "invisible disease" the attention we deserve.  I am not comparing this illness to breast cancer, as I have never had breast cancer and would not begin to suggest that I know how bc victims and survivors feel, but if I had to choose, I almost think I would choose bc because they can cut it off, chemo it away and burn it up with radiation.  No one even really understands what is wrong with me, much less offering me a list of options for treating it.  I don't have any health insurance, therefore, almost no one in the health care community cares one way or the other.  My daughter's GYN offered to start seeing me as a result of the severe depression I was battling upon the death of my husband in June of this year.   He has helped me so much and he has a true respect for how badly I really do feel.  However, his hands are tied to some extent as he has limitations in what components he of my illnesses he can really treat.  But I THANK GOD  for him every day of my life.  He has made my life bearable and given me back enough of my life that I can work, sometimes every day, and I am so grateful for that.  thanks for listening to me ramble 

  

 
User Mood
Stressed

Message Emote
frustrated
November 2, 2005, 10:56 pm PST

I understand what your mother is suffering

Quote From: amaner

I have fibromyalgia and was diagnosed about five years ago myself.  I also have severe depression and lymphedema.  Have your mom send me an email if she would like.   I  intend to start some of the suggestions about getting this "invisible disease" the attention we deserve.  I am not comparing this illness to breast cancer, as I have never had breast cancer and would not begin to suggest that I know how bc victims and survivors feel, but if I had to choose, I almost think I would choose bc because they can cut it off, chemo it away and burn it up with radiation.  No one even really understands what is wrong with me, much less offering me a list of options for treating it.  I don't have any health insurance, therefore, almost no one in the health care community cares one way or the other.  My daughter's GYN offered to start seeing me as a result of the severe depression I was battling upon the death of my husband in June of this year.   He has helped me so much and he has a true respect for how badly I really do feel.  However, his hands are tied to some extent as he has limitations in what components he of my illnesses he can really treat.  But I THANK GOD  for him every day of my life.  He has made my life bearable and given me back enough of my life that I can work, sometimes every day, and I am so grateful for that.  thanks for listening to me ramble 

  

I too have fibromyalgia complicated by rheumatoid arthritis. No one can understand the pain, sometimes never ending pain that a person with fibro. must suffer. It is a constant struggle to deal with this ailment  we have, especially when we show no signs of illness except for the sign of pain on our face. I think you are a very loving daughter to look for others with your mother's illness so that she has someone to relate to. You are so right that no one can empathize with a person with our illness unless they have it.  

I would love to be an e-mail pal to your mom. Maybe she can help me make it through the day a little more comforting knowing I have someone to talk to and that can relate to my everyday life. I sure have the time to e-mail, I am at this time working on getting my disability. So I am home usually everyday, dealing with what life offers me today, whether a very bad day of pain, aches, down in the dumps mood or a half way decent day where I can hope to do alittle housework. 

Please have your mom e-mail me or send me her address and will e-mail her.  

  My address is morous61@yahoo.com. 

  Yours truly, 

  Maureen 

 
User Mood
Happy

Message Emote
ecstatic
November 3, 2005, 2:22 pm PST

For those of you diagnosed with fibromyalgia...

I, too, suffered for many years with chronic pain and other symptoms and was eventually diagnosed with fibromyalgia.  One day, I read a book that my son had purchased called "Live Right for your Blood Type".  In the book, it was suggested that people with my blood type eliminate all wheat from the diet.  I decided to try it and-- guess what!  I started to feel much better! 

  

I then went to my doctor, after doing research on wheat allergies and gluten intolerance, and asked him to run the tests to determine whether I was gluten intolerant.  The tests came back positive.  I have celiac disease. 

  

Since faithfully following a gluten free diet for more than a year, my aches and pains have all but disappeared.  No more "brain fog"!  No more fatigue!  No more gastrointestinal problems!  I feel better than I've felt in years! 

  

Just something you may want to check out-- there are many food allergies or intolerances that could be causing your symptoms-- could be gluten, it could be lactose, etc., etc. 

  

Good luck! 

 
User Mood
Nervous

Message Emote
blank
November 3, 2005, 9:38 pm PST

Hi Amanar

Quote From: amaner

I have fibromyalgia and was diagnosed about five years ago myself.  I also have severe depression and lymphedema.  Have your mom send me an email if she would like.   I  intend to start some of the suggestions about getting this "invisible disease" the attention we deserve.  I am not comparing this illness to breast cancer, as I have never had breast cancer and would not begin to suggest that I know how bc victims and survivors feel, but if I had to choose, I almost think I would choose bc because they can cut it off, chemo it away and burn it up with radiation.  No one even really understands what is wrong with me, much less offering me a list of options for treating it.  I don't have any health insurance, therefore, almost no one in the health care community cares one way or the other.  My daughter's GYN offered to start seeing me as a result of the severe depression I was battling upon the death of my husband in June of this year.   He has helped me so much and he has a true respect for how badly I really do feel.  However, his hands are tied to some extent as he has limitations in what components he of my illnesses he can really treat.  But I THANK GOD  for him every day of my life.  He has made my life bearable and given me back enough of my life that I can work, sometimes every day, and I am so grateful for that.  thanks for listening to me ramble 

  

 I don't see your email addy....if you want you can email me at michelegriebel@lycos.com and give it to me and then I will give it to my mom.
Thanks for responding!
Michele
 

First | Prev | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | Next | Last