Topic : Living with Chronic Pain

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! 

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 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 

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