Fibromyalgia

Hi Bella Dea,

My empathies to your friend. I also have Fibromyalgia and know of one other poster here who does as well. I have never sought out support from a support group, either in real life nor on any forum for some reason. I don't know why. Wait..that is not totally true. My therapist whom I was seeing for the accompanying depression and chronic pain (to learn more about biofeedback) turned out to also have Fibro and she was an invaluable one on one resource for me for many years. She is indeed an angel and helped me through some pretty rough times. I was incredibly blessed to have her support in so many avenues.

When I was first diagnosed, I web searched like crazy of course to find out all that I could. I did come across a great many sites offering support and chat, but I never took advantage of visiting any of them. As I became more educated about the syndrome, I also educated those closest to me, family and friends, as they had all taken a very active interest in knowing how to best support me.

I think the crappiest thing about Fibromyalgia as the outside world sees it, is that a Fibromyalgic looks absolutely fine, wonderful, perfectly healthy. They cannot see the constant, chronic pain that sometimes permeates your entire body. The pain is elusive and sometimes hard to explain. It can move throughout your body without any warning, affecting different parts that make no sense. Then the night after night of trying to find just one bit of Stage 4 sleep that constantly eludes a lot of Fibromyalgics. Even with sleep medications, after several sleep studies, it was concluded that I get no Stage 4 sleep whatsoever and very little Stage 3. Waking up every morning feeling like you have been hit by a Mac truck and barely being able to walk for the first 30 minutes of the day because of the pain and stiffness in your feet and ankles and knees and hips.

Oh hell...I could go on and on. At this point, I believe there are about 63 known and recognized symptoms of Fibromyalgia. This is one of the reasons it is so misdiagnosed and often times it takes years to arrive at the correct diagnosis. Meanwhile many people afflicted with Fibro feel like they are losing their minds, are often told it is all in their head, they feel unjustly labeled as hypochondriacs and a good many doctors unfamiliar with Fibromyalgia simply don't know what to do.

I am so happy that your friend obviously has a doctor that put it all together and I know your friend must feel tremendous relief that there really can be some help in sight.

Fibromyalgia cannot be cured, they don't know the exact cause, but the good news is, it is not fatal. There was one well publicized case many years back of a woman who suffered such intense pain for such a long time that she and her family consorted with Dr. Kevorkian to end her suffering and her misery. However, in most cases, the symptoms can be managed well enough that some semblance of normal life can be achieved. It is, for me, a day by day process. Some days are diamond and some days are coal.

I hope your friend does find a good support group. She might try checking out the Fibromyalgia Network at 1.800.853.2929 or the United States Arthritis Foundation National Headquarters at 1.800.283.7800. A couple of places to check on the Web: The Newsgroup, Usenet is a worldwide newsletter or bulletin board that she can access at alt.med.fibromyalgia and another is LISTSERV which can be accessed at [email protected] with the following command which you place alone in the space allowed for the body of the letter:
Subscribe fibrom-1 (your name)
One other site to explore is http://www.alpha.net/dci/fibro.html

Give my very best to your friend. Let her know that she is not alone and there truly are people who understand exactly what she is going through.

Wow, thanks Lady J! We were just talking about how hard it is to have a chronic condition that doesn't make you look sick and how hard it is for people like us to be understood. I am constantly battling my hubby over this because he says he gets it but really, I know he doesn't. How can he?

She is doing better just knowing what is wrong with her but as you well know, some days are better than others. Thanks so much for the info!!

Bella Dea,

You are so very welcome. I am glad that I can offer up some info and I only hope that it is useful in some way.

You and your friend are so right on about others not being able to fully understand or grasp what it must feel like, when they haven't walked a mile in your friends shoes.

I do have a good book that I can recommend. It is a great read, not only for your friend, but for anyone who wants to understand and help support her. My new hubby is on his second read of this book, both of my kids have read it and I do think it does help put some perspective on the syndrome for the layman.

It is titled: "The Fibromyalgia Help Book" and was written by Jenny Fransen, RN and I Jon Russell, M.D., PhD.. If she cannot find it in any of her local bookstores, she can order it directly from the Publishing House at 1.888.220.5402 or online at www.SmithHousePress.com That publishing house also offers other interest related books, some humorous and some very scientific. I really like the Help Book as it puts everything in laymans terms and is an easy read.

Please, please, give your friend my best. If she has any questions at all, you know I am here to help.