HealingWell
Search Close Search
☰

Disturbing trend

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/29/2011 6:02 PM (GMT 0)
Every so often I will peruse web sites, which offer information about fibromyalgia. The information can range from not useful at all to very useful.

However, I notice too many of them will say Fibromyalgia is a chronic condition yet, will say the with treatment, a person can live a regular life, you know like the people who do not have fibro?

What treatment?

I find that we can exercise regularly, take our meds, herbs and whatever, drink plenty of fluids, watch our weight, eat the latest fibromyalgia diet, etc., and still feel like we have ben rolled over by a mac truck.

Even the Fibromyalgia support groups and network sites claim this.

This is unrealistic. I have a chronic disease. No matter what I do I doubt the fibromyalgia, chronic fatigue, etc. will go away. Spreading information concerning how to live with these syndromes is important yet, by stating that following a healing regiment might enable me to run a 5k race is ridiculous.

Some days, despite all of the work I put into improving my life, I still hurt like heck. Exercise helps relieve exhaustion but not as much as I want it to. I am a pretty happy person but, this does get me down. In fact, I too often find myself wanting my old life back. What old life I do not know.

We do the best we can under our circumstances. This is what the fibromyalgia sites do not state. I do not know a single person with a chronic illness who does not do at least one thing to feel better. And for this alone, they should be applauded.

Big deal we cannot bike ride for a full hour (okay five minutes), so what if we choose to enjoy eating meat and animal products, what if we cannot afford all of the supplements. We are still working to help ourselves and that is enough.

Donnaeil
Posted 1/29/2011 6:20 PM (GMT 0)
I understand your frustration! Having a chronic pain condition, we will never live the life we had before. The term normal for us has changed...that is not to say we will never be happy.

It is natural to feel some frustration, when reading some website or seeing a commercial stating do this, take that and life becomes normal again....We know the truth.

All we can do is take one day at a time, do what we can to help ourselves and strive to live a happy life...what is the alternative?

What is important is learning to accept that things are differant and move forward...it doesn't help to focus on the days before fibro.

We are fibromites and we are strong because we need to be!!!

Hugs, Robin
Posted 1/29/2011 6:43 PM (GMT 0)
And the midst of all of this we continue to age. I don't see that mentioned much. We will never go back to the way that we were as we are getting older. lol... I am 52 now and I know I am not going to be as good as I was at 40, but I still have a happy life. It doesn't take much to entertain me and I appreciate the smaller things in life, so I think that there is still a lot yet to enjoy.

I too get frustrated. But I get over it. I had one doctor suggest a complete protien diet. So we can like meat as much as we want to.

I hope that we all can get to that place we are looking for. But I think sometimes we have to settle for a little less. But it can be enjoyable.

Strive to stay happy.

Hugs, Karen
Posted 1/29/2011 6:51 PM (GMT 0)
Oh,

I agree that life can be enjoyable. My issue is with the information being disseminated that espouses how treatments work when we try them.

I guess I am saying there is no cure as of yet and I am okay with that idea. But, when the experts cite reports of that one in a million person who returned to marathon racing as an example of following treatments, it is cruel.

Folks new to this illness need support, education and understanding. Not feeling "normal" is fine. Getting to acceptance is hard but it does not mean we are giving in.

Donnaeil
Posted 1/29/2011 6:52 PM (GMT 0)
I hear you, Donnaeil. There are a husband/wife team of chiropractors in my area that are promoting a treatment for fibro so "you don't have to suffer any more." They claim that all of the symptoms are caused by a sleep disorder (definitely debatable), and they have the answers to help you sleep better, and voila! - no more fibro (for a fee, of course).

I'm not saying that sleeping better wouldn't help some of us to a certain extent, but until we actually understand what fibro is, I don't think a "cure" can ever be found. Sure, some treatments may help some people with some symptoms some of the time. But I have found nothing that allows me to live and feel the way I did before fibro became my companion - NOTHING. And, believe me, I've tried a lot of stuff....... rolleyes

I believe that many (I'm not saying everyone) people who think their fibro has been cured or treated are just in remission. I went through a period where I was feeling pretty good and thought I had it beaten or at least controlled. Wrong. I had a bad flare, and I've been battling some pretty tough fibro stuff ever since. I'm now the biggest skeptic in the fibro world.

Hugs - Austen
Posted 1/29/2011 7:15 PM (GMT 0)
I have to totally agree with Austen there is no miracle cure out there. Maybe someday but it sure isnt here yet. I definitely understand where your coming from donna, it is frustrating to read that you can lead a normal life. Ours will never be normal but like everyone else said we can enjoy life. It doesnt have to all revolve around our pain. Yes we are going to have some really bad days but there will be good ones too. Those are the ones I look forward too,
I cant wait for spring because I know I feel much better in spring and summer. In the mean time I have all of you to help me through the rough spots.
Gentle Hugs
Shirley
Posted 1/29/2011 7:38 PM (GMT 0)
I cannot wait until spring and summer also. Even though the weather in Seattle has not been bad, the past four months have been rough.

Donna
Posted 1/29/2011 8:02 PM (GMT 0)
Hi Donna,
I agree with you. Unfortunately, the popular media will improperly represent good research - either because they don't understand it or because their way makes it sound better. If the research is solid, and you can get to the source and read the real study write-up, it is highly probable that it does not say what the media reported.

This is bad because then people like Debbie's son (and others) think we are not trying the new "cure" because we want to be sick. Other people do not realize media represent research inaccurately and the actual research is so difficult to read and understand, they do not even know they are getting half truths. Then they look at us and wonder why we aren't trying all we can to feel better so we can run that 5k.

On top of that, there are folks who are selling snake oils to us because we are desperate for relief.

That Lyrica commercial is an irritating one - instead of showing that woman walking around so happy designing clothing and feeling wonderful, she should be overweight, be wearing a neck basket with a water bottle in it for her dry mouth, and hanging onto the table keep from falling down from dizziness.

She could say, "I can now lift my arms for a few seconds longer without pain, (lifts arms to pin fabric, wobbles and nearly topples over, but grabs the mannequin for support) The benefits far outweigh (a picture of her before Lyrica) these side effects (as she plops on the couch in exhaustion.) Take Lyrica for fibromyalgia and feel like I do!"
Ha

Sue
Posted 1/29/2011 10:42 PM (GMT 0)
Great post, Donna. I couldn't agree with you more.

It does nothing to help raise awareness or sympathy or empathy when "advocates" make such claims. Instead, it makes genuinely suffering patients look as if they are in the wrong, and opens them to criticism (from family, friends and colleagues) that they are not trying hard enough, not taking the right treatment, whatever, and that it is, therefore, their own fault that they are not able to lead a "normal" life.

I see this with a lot of chronic illnesses. Crohn's gets it too. And the sad thing is that this MATTERS. Only when the general public and politicians realise just how debilitating chronic illness can be will there be proper funding for support, therapy and treatment.

Grrrrrrrr.

Thanks for the post.

Ivy.
Posted 1/29/2011 11:00 PM (GMT 0)
I'm wondering if there is some way we could gently contradict these boasts over the internet. There is a way (there has to be) of achieving this without controversy. Some websites offer an option to comment. Maybe respectfully posting our personal experience with fibro could make a difference. We do not have to call ourselves ________ from Healingwell.com. We could just represent fibromites in general. Just an idea....

Free Spirit
Posted 1/30/2011 1:02 AM (GMT 0)
That's a good idea. I try to not soft-sell it when I tell people about it, but of course, they'll only absorb as much as they want to or can. I just love (not) the looks I get when I tell them I can't open the door/bring the can down off the shelf/push the grocery cart because it pulls to the side.

Never a dull moment, that's for sure!! Nothing taken for granted with fibro.

Debbie
Posted 1/30/2011 2:04 AM (GMT 0)
It would be nice if we could. However, one well populated fibromyalgia support site seems to only include the stories of those who win over this syndrome.

Even though the site purports to be diverse with treatment options and states that is a chronic condition, there are multiple stories of how exercise, medications and or alternative treatments helped overcome fibromyalgia.

I do not think this type of site would welcome true stories from people who work hard to feel better but are still limited physically and or mentally. For example, I take medication and I swim a lot for the most part but a flare can keep me out of the pool for months.

As for positive thinking, I do not buy that. The reason being if you are living in a war torn area, and you think positively, your home can still be bombed. No one can escape life.

Donnaeil
Posted 1/30/2011 2:46 AM (GMT 0)
I agree with you, Donna.... but sadly, such feelings tend to be put down as Bad Attitude, don't they?
Posted 1/30/2011 3:04 AM (GMT 0)
Yes Ivy.

I guess people refuse to face the fact that we are human.

Donnaeil
Posted 1/30/2011 4:02 AM (GMT 0)
Positive thinking does not cure fibro but does help one deal with it.

Positive thinking, does not prevent flares but motivates one to do what they can to keep active to help with pain levels.

When you learn that you have an illness you have choices, you can put yourself in a mindset that your life is all about suffering or you can choose to find ways to help feel better.

Yes we are human, we're unique and we feel pain, without positive thinking it is easier to lose hope for a happy life.

Everyone deals with the loss of good health in their own way. It took me a long time to accept that I will probably never be pain free, I really mourned the loss of good health and was angry.
I did find that thinking positive and focusing on my blessings helped me...it will not cure me... but does make my life easier.

Hugs, Robin
Posted 1/30/2011 5:23 AM (GMT 0)
I can think positively all day long and I still will have a hard time getting into bed. I think that thought, is just thought. Neither positive or negative.

Positive thinking seems to be a Western idea. We have the privilege of practicing it. Many people in the world, for example those who are starving and suffering from external factors like wars, can try to think as positively as they want but it will keep them from accepting the reality of the situation. This can be dangerous.

Knowing how to asses my situation and adapt to it is what I consider important. This helps me to live with fibromyalgia. I do not believe I think positively or negatively, I just think (on my good days lol).

Donnaeil

Donnaeil
Posted 1/30/2011 5:58 AM (GMT 0)

donnaeil said...
Every so often I will peruse web sites, which offer information about fibromyalgia. The information can range from not useful at all to very useful.

However, I notice too many of them will say Fibromyalgia is a chronic condition yet, will say the with treatment, a person can live a regular life, you know like the people who do not have fibro?

What treatment?

I find that we can exercise regularly, take our meds, herbs and whatever, drink plenty of fluids, watch our weight, eat the latest fibromyalgia diet, etc., and still feel like we have ben rolled over by a mac truck.

Even the Fibromyalgia support groups and network sites claim this.

This is unrealistic. I have a chronic disease. No matter what I do I doubt the fibromyalgia, chronic fatigue, etc. will go away.


You're so right. It raises people's hopes to a ludicrous extent, which will only cause those hopes to be dashed. The best we can hope to do is manage our symptoms the best we can, and adjust to our new life.

What annoys me the most is how many doctors have this same belief. I just went to a new doctor (my old one retired), and just because I mentioned having some fibro-related depression, she wanted to start messing with my drug regimen. Hello, there is no such thing as magic pills making you able to never be depressed or achy again! The very nature of fibromyalgia is having good days and bad days, and to expect anything else is unrealistic.
Posted 1/30/2011 6:04 AM (GMT 0)

Statgeek said...
That Lyrica commercial is an irritating one


I'm new here, and am happy to see I'm not the only one who gets annoyed by that stupid ad...especially after lurking on this forum, and seeing how many people have had weight gain and other ill effects from Lyrica.

Statgeek said...
...instead of showing that woman walking around so happy designing clothing and feeling wonderful, she should be overweight, be wearing a neck basket with a water bottle in it for her dry mouth, and hanging onto the table keep from falling down from dizziness.

She could say, "I can now lift my arms for a few seconds longer without pain, (lifts arms to pin fabric, wobbles and nearly topples over, but grabs the mannequin for support) The benefits far outweigh (a picture of her before Lyrica) these side effects (as she plops on the couch in exhaustion.) Take Lyrica for fibromyalgia and feel like I do!"


ROTFL! Now, THAT would be truth in advertising! turn
Posted 1/30/2011 6:28 AM (GMT 0)
Statgeek was definitely on the mark with that one.

Donnaeil
Posted 1/30/2011 11:49 AM (GMT 0)
I'm on lyrica. Perhaps what they should show, is that after she holds her arms up for a few seconds pinning material, flames shooting out of the muscles on her arms. Cuz that's what I would feel like.
Posted 1/30/2011 8:58 PM (GMT 0)
Oh funny Mrs. Mike. And do not forget that lyrica junkie feeling. It is one drug that I have a love hate relationship with. One of the darned if I take it and darned if I don't.

It helps but comes with problems of its own. Water retention that gets worse as the day goes by, added stupidity, and not enough pain relief. Grrrr

But then, it is the cure according to folks who see the commercial.

Donnaeil
Posted 1/30/2011 9:41 PM (GMT 0)
I definitely don't like the Lyrica ads...any of the medicine ads as a matter of fact.  I would hope that people would realize they are trying to sell a product.  I just love the sing-song way they tell you that you could keel over taking some of this stuff...like if you lose your hearing or eyesight be sure to call your doctor!  DUH!  Like I need them to tell me that?!!!  That wasn't on a Lyrica commercial but it's a good example anyway.  Yes, it is a disservice to those of us that truly know what we are dealing with.

 

But, I do agree 100% with Robin when it comes to a positive outlook.  Attitude really does play an extremely important part in life...and illness is part of life.  I do understand fibro, I do know how to deal with it, and I do have a positive attitude towards fibro and towards life.  I do believe they will get to the bottom of this illness and I do believe there will be a cure one day.  I do believe I can still live a good life in spite of fibro and I KNOW I'm far happier thinking this way.  It gives me hope for the future and something to look forward to.  Yes, I have pain but I'm not unhappy.  Fibro is a fact of my life and I had to learn how to deal with it.

 

Twenty years ago, because of Crohn's disease, I had to have my colon taken out.  I sure didn't want to do that and stalled as long as possible but, when I went into surgery I was happy.  I knew I would be better when I got out of surgery and I knew I had about the best doctor in the world performing that surgery.  I told my surgeon the day before the surgery that God blessed me with the best surgeon in the world.  He replied that God bless him with the best patient in the world.  The results were fabulous and I was Christmas shopping at the mall twelve days after surgery!  The positive attitude didn't "save" me from life but it did make my life more bearable and far more pleasant.

 

A positive attitude doesn't cure anyone of anything but it can help you deal more successfully with what you have to handle.  We all have things to be thankful for so that's what I choose to look at. 

 

For those that haven't had a chance to read them, there are steps to having a positive attitude in Fibro 101.  I noticed the link to that didn't work so I copied and pasted it in Fibro 101.  It really is good and it could help you have a happier life in spite of this illness.

 

Sherrine

Posted 1/30/2011 10:17 PM (GMT 0)
Of course you can have a great life with fibromyalgia. I just do not think that has anything to do with positive thinking. Perhaps I have a different concept of positive thinking than you and Robin.

This post was about support groups and other web sites that explain that fibromyalgia is a chronic condition yet espouse that medications and other alternatives can relieve the condition completely. Not true. I was concerned about the trend to act as if there was a panacea to fibromyalgia.

Donnaeil

Post Edited (donnaeil) : 1/30/2011 3:21:34 PM (GMT-7)

Posted 1/30/2011 10:38 PM (GMT 0)
Oh, I think we all agree with you 100% on that note, Donnaeil!  It isn't right to portray a medication and this illness like that.  Besides, we are all so different.  What works for one doesn't necessarily work for another.  I wish they would take all drug ads off the air...along with all the lawyers suing them! 

 

The only reason I talked about positive thinking on this thread is because you brought it up earlier.  Maybe you do have a different concept than Robin and me.  I can have a really tough, painful time, but yet still be positive.  I guess it's because I realize fibro is a fact of my life and I've accepted it as a part of my life instead of fighting it.  Fighting it just caused me more stress anyway.  I do keep my ear to the ground looking to see what's new about fibro, too. 

 

Yesterday was an especially bad day for me.  There were some family issues that were so sad that were happening.  Every inch of me was hurting and I was having company yesterday to boot!  I was just starting my pity party when I recalled, out of the blue, polio when I was a child.  So many children were crippled but the worst case scenerios were the people that ended up in an iron lung and had to viewed the world through a mirror.  How heart breaking is that!  As soon as I remembered that, boy, did my attitude change.  I actually was thankful I only had fibro and some other health issues to deal with.  I can get around, albeit difficult at times, but I can still get around.  This is what I'm talking about with a positive attitude.  I look for the benefits and try to ignore the best I can the negative things of this illness.

 

Anyway, I hope all of you are having a good day today!

 

Sherrine 

Posted 1/31/2011 2:18 AM (GMT 0)
The trend continues.

Donnaeil
✚ New Topic ✚ Reply
12