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Karen Lee Richards
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Posted
As I write articles and do SharePosts on fibromyalgia for this site, I want to know what your interests are. What concerns you most? Which subjects to you want to hear more about?

I don't pretend to have all the answers and I can't give personal medical advice, but I'll do my best to research your questions and share what I know and what I find with you. I'll also be happy to share my personal experiences with you. (I've had FM and CFS for 18 years and have worked in this field for 10 years.)

But one of the great things about this forum is that you're not stuck with just hearing from me. There are lots of folks who can share their insight and experiences with you. And perhaps best of all, we can encourage one another. We all have good days and bad days. Here you can find friends who will listen and empathize with you.

Please join us and let us know what's on your mind.


Karen Lee Richards
ChronicPainConnection Expert
 
Posts: 158 | Registered: 03-16-2007Reply With QuoteEdit or Delete MessageReport This Post
Marie
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Hello Karen.
I was looking for an active forum about fibro as the one on About.com this one is quiet. No fibroites around?
I would like a more active fibro community here on this board.
I just had a look at the main board and it is not very lively there too. So I ask sisters and brothers in pain to join and lets us talk about this.
Marie
P.s. I love the newsletter. Very instructive and well done. Wink
 
Posts: 16 | Registered: 04-16-2007Reply With QuoteEdit or Delete MessageReport This Post
nev
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I have tmjd and fibromyalgia, I do have some meds that help. I would like to see more activity on the fibro topic on here specifically. I frequent a high volume fm/cfs msg board. But it's easy to get lost in the shuffle. Although the infinite amount of info on the site IS where I head to search for what I'm dealing with.

What I have trouble with is keeping my 5 kids going when I'm having a bad recovery day/week. My husband expects aLOT from me. Yes and he is working 8 hrs away, 10 days on, 4 days off. And some of his days off are spent out of town doing guard duty. I just feel stuck. My family is near, and helps a bit if I have a drs appt or something, but are only mildly helpful in ways that actually get me through the day/week. They do mean well, but just don't get it.

What i need is some encouragement. I always feel better when I know others are dealing or have, and are making it.

I'll have more to add soon, but it's late and my muscles NEED rest.

Thanks for being here,
nev

I can't find a support grp in my area, too. Would like to start one, but my plates a overflowin'
 
Posts: 3 | Location: Gateway to the West | Registered: 02-20-2007Reply With QuoteEdit or Delete MessageReport This Post
Karen Lee Richards
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I'm sorry it's taken me a few days to get back to you. I've had some family things that have needed my attention. I'll share more on that another time.

Marie:
I completely agree with you. I'd love to get more FM folks here on this board. As you can tell, this is a fairly new board, so we just have to spread the word. Please invite any FM or CFS people you know to join us. And feel free to start a new thread anytime. I really do want to know what you're interested in.

Nev:
Bless your heart! Keeping up with 5 kids is rough even when you're healthy. What ages are your children? Are any of them old enough to be helpful?

I know what you mean about your family. As much as our families may love us and want to help, it's extremely difficult to truly understand what we go through and deal with daily unless they've experienced it themselves. And I suspect you're hesitant to ask them for help unless you absolutely have to. I know I tend to be that way. But I would encourage you to consider asking for at least a little more help. Or if someone asks if they can do anything, be prepared to take them up on their offer. Maybe one or more family members could take turns taking the children for one day a week –– or whatever would be most helpful to you. Just a thought.

We all need encouragement –– especially on those rough days. We'll be here for you and try to help, or just listen if that's what you need. You sound like an amazing woman!


Karen Lee Richards
ChronicPainConnection Expert
 
Posts: 158 | Registered: 03-16-2007Reply With QuoteEdit or Delete MessageReport This Post
BettyBoopToo
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Hello Karen
I'm glad your here on this forum. I was actually so happy to find all that come be done with this entire site. There must not be that many Fibro patients that know about this site and that your here to help us. Rest assured, I'll be spreading the word. Big Grin
quote:
Originally posted by Karen Lee Richards:
As I write articles and do SharePosts on fibromyalgia for this site, I want to know what your interests are. What concerns you most? Which subjects to you want to hear more about?
quote:


I really like sharing home treatments or therapies that others have found helpful in either reducing their pain at home or by just making living with this type of pain more tolerable by some home remedy.
I use my medications and feel that I'm well medicated for the pain, but I just dont think that I am able to rely solely on meds to control my pain during times of flares and those frequent bad days.
I had such a good summer and really felt like I was getting a handle on this pain, but I'm afraid that the reality was that my pain was just lower, including my basline pain.
I've always had bouts of fatigue, but since we figured out that I have Fibro, it seems like the fatigue that hits me is taking control every time it hits. I'd like to know what you and others do about the extreme cases of fatigue?
Every time I step outside of my very small circle of activities I'm able to do with the least amount of after effects, I'll find myself down on the couch, recliner or sometimes unable to get out of bed without my husbands help? This can sometimes get very distressing.


I don't pretend to have all the answers and I can't give personal medical advice, but I'll do my best to research your questions and share what I know and what I find with you. I'll also be happy to share my personal experiences with you. (I've had FM and CFS for 18 years and have worked in this field for 10 years.)

I cannot imagine having this disorder for 18 years, when I think about it could be the direction that I'll have to face, It just overwhelms me. I am thankful for those of you who have made my own journey and experience with my doctors much easier than I'm sure you had it.
Have you always been able to continue working??
I've really worked hard to continue working, but It seems all I've done is make the pain worse, everytime I force myself. I've often also wondered that after a few years of this, can I possibly expect it to level out and not be up & down so much?

quote:


This is a treasure indeed! I really want to comunicate with any and all pain sufferers that want to discuss and share their pain with someone who understands the severe up & downs and also the extreme challenges that we all must face to learn to live with such a disabling Painfull illness. I worry about some others that don't have the support they need from the doctors, families and friends. despair is lurking around every corner with a support system and I cannot imagine how or what some of the other folks with Fibro/chronic fatigue and multiply chronic pain illnesses.

Please join us and let us know what's on your mind.


I thank you for the invite Wink

Hello Marie, it's a pleasure to meet you, since their are not enough Fibro patients at this forum, we'll just have to spread the word. I have a couple of pain pages, that I've been inviting others to come and join me. We can send messages back and forth and if you'd like I am willing to communicate through e-mails too.
http://www.carecentral.com/bettys-pages-on-pain
http://www.facebook.com/profile.php?id=623312071
I'm also in the process of working the kinks out for my support group and waiting to hear if it's approved that I can use a facility in town.
I welcome everyone who wants support or to belong to an online community to come to my site and I'll help with whatever I can
Nev; The same goes for you to hon. You have been truely blessed with five children, but my heart goes out to you, as I cannot even imagine still having children at home, getting them to all their events, making meals and keeping up with their needs and you must certainly be an amazing woman. I know that it sometimes hurt our pride to ask for help from family and friends, but you really do deserve to have help.

hope to talk with you all often
Betty
quote:


Do not be dismayed by toil or suffering, nor by the meager fruit of your labors. Remember that God rewards not according to results, but effort.

Blessed Zefirino Agostini
 
Posts: 1201 | Location: Home in Washington State | Registered: 11-07-2007Reply With QuoteEdit or Delete MessageReport This Post
Marie
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HI.
First, thank you Karen for your reply,I read it and did not have time to reply. Soory for that. I was off line for a while and don't seem to be able to find time lately. Hubby had open heart surgery, this took a lot out of me. Since there are only the 2 of us here it means that I have to do his work and mine...he was doing so many things for me like vacuming etc. Now I have to that and the outside work, I think that when we need strength we can find it.
He is doing very well but for me now he is "broken" it will take very much to stop consider him otherwise, I know I am wrong here but I was so afraid to loose him that I felt that if I kept him in the freezer he would last longer lol. Eeker .
We started to walk every day we are at the 30 mins twice a day, I can say that even if I have so much pain at night I am satisfied that I have accomplished something.
If I can only get through pain in a knee it would be better.

And, Hi betty nice to meet you, if I don't reply right away it is not because I am ignoring you or this place but soon I will find time for more on-line and the snow is here this mean more time inside.
Will see you around
Marie
 
Posts: 16 | Registered: 04-16-2007Reply With QuoteEdit or Delete MessageReport This Post
BettyBoopToo
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marie

It's nice to meet you. I certainly hope your husband is doing better and on the road to recovery.

I paused to think about your situation and thought about my something going wrong with my husbands health and had to take amoment to breath. I'm terrified of something happening to him and gosh it makes me feel like the most selfish individual in the world.
He takes care of me, but I think your right, I'd have to just buck up and take care of him, afterall, he's always taken care of me and it is my turn to care for him.

Your a curages woman and I hope your doing ok.
Glad your doing the walks.
I started a walking schedule last year and even though it causes a great deal of pain, I have my very sweet puppy to walk with me and working on training him for service work has really helped to keep my walking despite the pain.
I also have a small poodle that I'm working with for therapy work, so she and I can go to the nursing homes and she can come with me to support group and be our little doggie. She's really great with pain, I think they all know when I'm in pain, they come and are so effectionit and love on me and lay with me. I'd be so lonely without them.

Hope to visit with you soon, the weather is turning so your right, we'll all be in the house more often.
Our weather has went to damp, cold, rain and buckets of it by the sound I hear on my roof.
Keep the fire burning
Betty


Do not be dismayed by toil or suffering, nor by the meager fruit of your labors. Remember that God rewards not according to results, but effort.

Blessed Zefirino Agostini
 
Posts: 1201 | Location: Home in Washington State | Registered: 11-07-2007Reply With QuoteEdit or Delete MessageReport This Post
Marie
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This health scare for hubby was unexpected. He is or was the picture of perfect health. Then he had his 2 yearly check up which included a ECG that showed abnormality followed by an ultrasound that showed possible myocardial infarction and a stress-test that was cut short after few minutes...the dr kept asking him if he had pain or discomfort he did not felt a thing . All that followed by an angiogragraphy and suddenly the ceiling fell on us. He had serious blockages, the dr. told him to not drive until after surgery because he was a walking bomb. He was a public danger with a heart on the verge of dying.
The same week he had the surgery, my world took a spin, after the surgery the dr. told us that he was we were very lucky that I insist that he had these tests to start and that my persistence to pestered him pay in return.He was procrastinating and was not seeing the need he was fine ! The dr. told him to listen to me a bit more.
He never felt a thing, no pain whatsoever no shortness of breath. He just escape the widow maker by a fine tread. It was caused by bad genes. he never inherit money but bad genes.
A lesson for many of our friends.
Marie
 
Posts: 16 | Registered: 04-16-2007Reply With QuoteEdit or Delete MessageReport This Post
BettyBoopToo
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Oh, Marie
this must of been so frightening!
Is your husband doing better now?
I hope the two of you have someone to help out, I cannot imagine what I would do if my husband became ill.
Your story will also help me to keep vigil on my own husbands health and convince him to go in for his check up too.
My husband is a runner and I can see him thinkiing that because he can run 10 or 11 miles in one shot, that he does not need to be seen by a doctor for the rest of his check ups.
He avoids the doctor with all cost as is, but you have given me some amunition to use as an example.
Thank you, hope everything is getting back to normal in your home and your both recovering from such a serious surgery.

God Bless
Betty


Do not be dismayed by toil or suffering, nor by the meager fruit of your labors. Remember that God rewards not according to results, but effort.

Blessed Zefirino Agostini
 
Posts: 1201 | Location: Home in Washington State | Registered: 11-07-2007Reply With QuoteEdit or Delete MessageReport This Post
Marie
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G...I'm gone pay for all that sitting time...the wosr exercice for me SmilerI posted that about hubby so people who read can take from that experience. He is doing superbly well walking his 30 mins a day. The worst part is to have him accept the diet, he's not fat but still LDL has to come way down for him and HDL up. Not a picnic for a guy who love his steak Mad Talk to you later By
Marie
 
Posts: 16 | Registered: 04-16-2007Reply With QuoteEdit or Delete MessageReport This Post
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