Topic : Living with Chronic Pain

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 

Michele,   I have FM and RA.  I have found that on line support groups have been a life saver for me.  I receive unconditional love, support and encouragement, plus news about research and new medical treatments or drugs.  More importantly I get to give support to others.  Thinking about and wanting to help a friend can really help chase the depression monster away.   Love and support from family is very important to FM sufferers but so is doing for for ourselves. Please encourage your mom to search for a group that she feels comfortable and at home.   Because chronic pain can be depressing, part of my treatment plan includes an anti-depressant.   I also see my doctor on a regular schedule to monitor my pain levels and my over all health.  Finding a doctor that understands FM can be difficult and costly but worth the search.   Your mom will find it helpful to read about FM.   There are many good books some with different outlooks on FM.  The more you know about it the better you can converse with your doctor.    Your mother is very lucky to have such a caring and loving daughter.    Panowl 

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 

Beleive me, I understand where you are coming from. But wonder where you are heading. 

Why are you asking God to forgive you ? Did you personally cause your chronic pain? 

Do you live in sin everyday of your life ? 

I would probally be right that, you personally are a good person , filled with love and not understanding alot of things in your life because of your pain.  

I have suffered with Chronic Pain for the past 20 some odd years. Doctors, I have had some of the best. Medication, Not to much out there that I haven't tried. Electric Stimulators to Block pain, I have one of the best made. 

You wrote a letter that touched me in away that I know exactly how you feel. I myself have had those same thoughts and ideas and wonders. As I sit here typing this letter to you I hurt so bad that I just wonder why ! 

So please don't be so hard on yourself. You live it you own it then by God you have the right to talk about it. Try not to think about what others are thinking about you. They tell you they understand about your pain and how it feels. You have to love them for at lease saying it , because you know in your heart that there is no way they could possibly handle the every days of your LIFE !!!! 

I get by with saying this to myself alot,  

I Don't Care How Bad I have It Someone Else has it worst and if you don't beleive that, go to one of the Milatary Hospitals and see for yourself and with the Grace of the Dear Lord we will both continue to get by each day. 

Take care of yourself and I am looking forward to you talking with me. You may not want to after reading my response to your letter. ..........TC - GB 

Will 

P.S   Look in the mirror every day and say , hey you, you earn the right and that I am a good person  

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.