Spreading the Word About Fibromyalgia & Chronic Fatigue Syndrome

It doesn’t help awareness when remarks like the following show up in a recent Associated Press release: [in response to the development and usage of drugs currently being promoted for fibromyalgia treatment]
“…Patients diagnosed with fibromyalgia are more likely to have a history of mental illness, be overweight and economically disadvantaged.”
There is a lot of misinformation out there (couched in “facts” such as the above), which is equally as hazardous to the recognition of fibromyalgia as a distinct “disease” as no information at all. As well, each case is different, and how each person deals with their own illness depends a lot on the severity and exhibition of symptoms. One person may be able to achieve a PhD (and be recognized by Oprah–a quite dubious distinction); another may find themselves halted by symptoms. While it can be beneficial to compare stories and symptoms, it is not so beneficial to compare one’s own situation to another’s. While we can learn from one another, and be encouraged by one another, we cannot just take anyone’s information–including those who suffer from the illness– completely to heart. Self-esteem is a very big issue here. Again, each case is individual. It is unfortunate that a lot of money is out there to be made by charletons and “experts” in topics as sensitive as this one, and there are those who will do so. As one of my mentors at university reiterated constantly: Always research the researcher! Take what is useful, and throw the rest away.

Well said, J.

I just don’t tell anyone anymore. The last time I told someone they said to me, and I quote, “Can I be honest with you?” I said “sure”. “I think you would feel better if you lost weight.” I would rather be punched in the gut than hear something as inconsiderate as that. As if I don’t know I am a little over-weight! Good grief! They have no idea what I’ve been thru with that struggle & to assume that I am doing nothing is ridiculous!

I just keep my fibro problems to myself unless I hear someone else has it then I let them know I do too in case they need a shoulder to cry on or just need some moral support.

I’m not sure if the rest of the world will ever come to their senses. It sure seems to me that most people are so self-absorbed they couldn’t care less about us anyway. We’ll just have to stick together & share what works for each of us. Sometimes what we find to work might work for others. Sometimes it is just nice to know you are not alone.

I just want to say “thanks” to our guide for the great job she does for us!

Thank you so much Adrienne. I just send the CFS PSA to our class communicator to enlighten a few more people. I don’t care what people think anymore. If they give me a snide remark like that, I just come back with one of my own… like…I weighed 40lbs. less before I got sick. And then I glare at them.

We have to keep on keeping on with advocacy.

I know that the folks who had M.S. over a century ago and even more recently had to go thru the same thing we are. And now its finally recognized. They were accused of being lazy, etc. It was called “Faker’s Disease” and “Hysterical Paralysis.”

I will continue advocating until my last breath.

Keep up the great work Adrenne.

Nancy H.

Spreading awareness has helped some, but I still run in to people who think that just doing some kind of exercise every day will help keep fibro under control or make it better. I have met several people who have tried exercise to see if it helps their fibro and that it made their fibro worse.

It also bothers me that with some of the awareness so many assume that the cause of fibro is one size fits all when it comes to cause. As stated by the person in the first comment each case of fibromyalgia is different for each person which means that this can be very individualized.

Right now my fibromyalgia is quiet. It has been quiet for almost 8 months. It is quiet (although I don’t know for how long but am enjoying this as much as possible) because of the problems in my right foot especially being surgically taken care of.

I would have never imagined that the problems with my foot would be connected to my fibromyalgia, and when I saw an ad for one of the other Podiatry practices in my hometown that said that fibromyalgia could be common with foot imbalances it made no sense to me. Some time after my surgery in June I then understoo the connection thanks to a section from the book The Complete Idiot’s Guide to Fibromyalgia when it said one of the things that fibromyalgia could bother was tendons. And one of the problems I had with my right foot was my Achilles tendon being tight due to problems I have had since childhood.

Now when I talk to people who say that they hurt the first thing I ask them is when the last time was that they had their feet checked. The reason is because when there is a problem with the feet it can affect other parts of the body.

I completely agree with J.’s comment–this disorder affects everyone very differently. I cringe at Lyrica commercials that make it sound like taking one pill makes “everyday living” normal again. It doesn’t. And I would love to “relax and take a vacation” like Martha Beck suggests, but I haven’t been well enough to travel in the 10 years since I was struck with this illness. And being on the Oprah Show or a life coach for somebody else is a ridiculous thought–I have too much fatigue and am in much too much pain DAILY to pull off something like that. So awareness of fibromyalgia and CFS is good, but only if it doesn’t put this bright face on it that all of us can in no way live up to.

I don’t see much help in it at all due to the fact that Dr’s are still skeptical, unless you find a very good one or one who is stricken, themselves, with this condition. I also don’t see much empathy from folks, again, unless you are talking to someone with it. Also, no matter how much someone shows empathy, it doesn’t take away the pain and discomfort that you live with everyday of your life. Although every advance is good, we still have a long way to go.

Nancy and Adrenne,

I would like to forward the CFS PSA to people (including our local newspaper and high schools) but can’t figure out how to do it. Can anyone give me a link that would prompt the PSA to play?

What is most sad for me is my 14 year old daughter telling me “it’s all in my head”, “take another pill, you’ll feel better” and “you’re just making it up to justify being lazy”.

Thanks to anyone who can provide that link.
Lenore
Thanks,
Lenore

Lenore – I am so sorry for your daughter, she is really going to be miserable someday when she realises the truth and what pain she caused you.

I tell everyone, and actually have a great support group at work because when I am able to, I put forth an honest effort, and that is not always true of most of the healthy employees. I have been at the same job for 10 years and people have seen me go through a lot of tough times, working 2 hours a day for months because it was all I could do, but have to keep going because I do not have the option of quiting. Then later a turn around and I am back at it and happy again that I can do something. I hope it is making a difference and spreading the word in a good way.

If I get a snide comment (like from Mom) I just go into as much medical facts as I can dropping words like neurotransmiters and immune system etc. Now that my sister has been diagnosed also she is a little more believing.

So keep on educating if you have the energy, it helps the next guy!

I believe we have a long way to go. I imagine it is hard for others to understand when the person such as myself has a hard time with this illness. I had fibromyalgia for years and it wasn’t easy but topped with chronic fatigue later left me crumpled. I hold my head high now after 5 years with both illness’s I’m still learning to cope but will not give up. In Canada it is hard to find a doctor let alone one with the knowledge to deal with these CFC/FM symptoms. I never gave up and am finding doctors but the portfolio to manage is so complicated. My calling in life may turn out to be helping those suffering with this illness, when I get better. I always hold hope it will get better, even though over the years it has gotten worse. Knowledge is the key, this enables me to help myself and find those around who can support that. What other folks think and say is relative, look inside ourselves because “you” are your strength. I wish the best for us all! By the way,weight is not affiliated with fibro. I know plenty of lean cfs/fm patients.

Lenore,

The link above should take you to the download page, and from there you can select the version that you have the software for. If you don’t know what software you have, your daughter probably does! Kids seem to have an instinctive understanding of technology.

Also, here’s an article that may help your daughter understand:

A Simple Explanation of Chronic Fatigue Syndrome

Thanks for the kind words Happy, Annette and Adrienne. I appreciate them, and having this for five years has only pushed my daughter further and further away. In December she called DCFS and reported me for child neglect and RX abuse. The case worker of course found the claim “unfounded”. I will pull the PSA add to send to our local networks and papers to ask them to run it. Fight on ladies, there WILL be good days!
Lenore

I am proud to find myself in the company of such bright, articulate and often highly accomplished women (mostly), as evidenced by the many insightful comments here, as well as among those taking the online courses offered by Bruce Campbell, PhD, and the members of my local ME/CFS/Fibro support group. I believe that each of us can find a way to increase awareness of the facts. I recently joined the NFA who made me a splendid offer. For $35 I was able to purchase a box of 50 of their magazines, probably not the most recent edition, but repleat with much valuable information, nonetheless. I figured that since my social life of late has revolved around Drs’ appointments, I could take a handful to each site and ask if I could leave them in their waiting rooms. People have been very accepting of information that might benefit other patients. In one situation, I was pleased to see 3 people take a copy with them when they left the Dr’s office! And writing a letter or sending a fact sheet to editors of one’s local and state newspapers are also often welcomed and read by others.