I am interested in this as well. One of my mentors outside of dance is afflicted with this disease and I'd like to know more from an insider's perspective, too.

I would like to be able to give you more clinical information on this but I'm afraid that all I have is annecdotal information.

Several years ago I had two students with Fibro and one student in a wheel chair. For these students I had to play everything by ear and take things at a much gentler pace. I really don't know what else to say except that their doctors greatly approved of them studying belly dancing, I had two thumbs up from the Physical Therapist whom I worked for. The flooring of the facility that I taught at was really wonderful and I think that played an important part in how easy or difficult these ladies found it to move. At home they took care of themselves nutrition wise and always made sure to eat salmon on class days, the salmon and other fish oils helped them move greatly. Which looks to me like a great reason to go out for sushi, so if it were me you wouldn't have to twist my arm.

For a while I danced with a lady who has Fibro, she never would be able to dance at full capacity but that didn't stop her from putting everything into it.

I don't teach belly basics anymore so I will probably never be able to work with people who have movement impairment. That kind of makes me sad in a way because the triumph of accomplishment doesn't seem as great for people who don't have anything to overcome. I don't think of it as an excuse to be lazy at all, many of my students in the past have had physical ailments and they come to me to learn to move with them. Then again... I enjoy watching older dancers for the same reasons. I don't expect many people will understand.

~*Spoon*~

I have a troupemate who has fibromyalgia. She actually is not participating in the troupe (dance-wise) at the moment because her fibro has flared up.

The reason why it seems like a new disease is really that it didn't have much of a name until recently and it wasn't taken seriously until relatively recently. Some people think that it is "between the ears" but it isn't.

The truth is that they have good days and bad days. My tribe sisters has been dealing with it for the past 17 years so she is very good at knowing her limits. So you have to trust them that they will know their limits but kind of remind them that they should take it easy. The issue, oftentimes is that, when in class, they're fine but they may suffer the next day. So I strongly think that they have to "play it by ear" and figure out what works best for them.

My tribe sister, Khalidah, is on tribe and you can PM her with questions. Not sure how often she checks her tribe anymore but I can alert her via e-mail if you want to PM her. Oh yeah: just look in my friends list for her profile.

I've several friend (and my mother) that suffer w/ fybromyalgia - but none are dancers...
There is a Tribe (at tribes.tribe.net/bellydanc...sabilities ) that has several members afflicted by it though. You might wanna cross post this thread there - get a first hand account of how they deal w/ it in their dance.

Be interesed in hearing what you find.
~ Chnadra ~

Kahlea:

I was diagnosed with Fibro about 8 years ago (it feels longer than that). My current doctor told me recently that the recent research is starting to think that there are three base "causes" and that that is why people exhibit different degrees, symptoms and respond to different treatments. <shrug> I know how it works with me.

I ache from head to toe most days. Like you slept too long in one position or exercised too heavily. On bad days I feel like I have the flu and litterally experience a drop in body temperature by as much as a degree or two - so I have the chills and am freezing and shivering. I'm stiff and sore. I also have joint issues. I can no longer lift weights (which I used to do before) because lifting hurts my joints so badly I can't move the next day. I have trouble standing for long periods of time or walking for long distances. Floor work is just straight out! The last time I tried to teach floor work, it took me 3 weeks to recover.

I'm also tired all the time. I never wake up feeling rested and refreshed. By mid-afternoon I usually want a nap and there are days where my brain just can't think straight. Some people refer to this as "fibro-fog". It's like you have a fuzz on your brain and you just aren't as sharp as usual. I'm a memory elephant and the fibro-fog is really disturbing for me. I've spent 15 minutes trying to remember my son's name on one really bad day (it doesn't usually get that bad). Normally, I just have to take some extra time to focus and think about what I'm trying to do.

Many people think it's all in my head or that I'm just a baby or a whinner. That really hurts and it makes everything even harder to deal with.

Be patient with those with this disorder. I have friends with this that can't function or hold down jobs due to the severity of their symptoms. I'm very lucky in that IF I pay attention and pace myself, I can do most of what I want to do most days. But I never do it without pain and fatigue.

I'll be happy to chat with you privately if you'd like more info. Every couple of years I do some research into the current thinking on the disorder. Theories have changed drastically since I was first diagnosed.

Halleyah :)

Here is a treatment that you might want to consider: neprinolenzyme.com/fibromyalgia.htm

I don't have fibromylgia, but I use this supplement for fibroids. My husband uses it for arthritis and sinus issues. He swears by it and doesn't go a day without it. It took a long time to shrink my fibroids (3-4 months) and get it so that they didn't hurt so much, but this was the only thing that worked (actually Fibrovan works too, but this has a lot of the same stuff in it and seems to be more powerful). It's expensive, but a lot less expensive than a hysterectomy and a lot less risky and painful. Anyway, I don't know if it would give you any relief for fibromyalgia, but fibro sounds horrible, so I'd be willing to try anything!

Taaj
www.taaj.org

I have fibromyalgia. I was diagnosed when I was 13, about 10 years ago. I consider myself in remission now. I put myself in remission with mindful attention to my body, a fairly strict diet, a VERY strict sleep and exercise schedule, but most of all with an attitude of "f--- this, I'm going to live my life like a normal person". I don't know if this would work for anyone but me, however, and I would be the LAST person to judge other FMS patients who struggle with their symptoms. I am not trying to say "suck it up and push through it", but rather that a positive outlook and a proactive lifestyle might possibly help others as they have helped me. I still have problems with fatigue (which I will be the first to admit that I regulate with caffeine, which is probably not the best choice but whatever) but the horrible achiness and other various crappy symptoms are mostly a thing of the past.

In addition to what everyone else has said, there are a few things I think people who are interacting with FMS-diagnosed dancers should understand, and tips for helping them help themselves...
- Like Halleyah said, FMS sometimes manifests itself in what I call "brain fog", where essentially an otherwise intelligent and perceptive person will seem completely dense and have a hard time remembering simple things or grasping new concepts. For some people it might be so bad that they can't remember basic words (sometimes I can't remember the names of months or days of the week!!). Please remember that we are not stupid or mentally challenged, nor are we just simply "tired" like most people get. If your student or troupemate seems like they are in brain fog, suggest that they take a drink of water, maybe eat a light, healthy snack, and do some breathing excercises to see if they can make themselves feel a little bit more normal. Try not to get frustrated with them. They need your patience and support. If they are just not able to come back to their senses, they might need to work on something they feel more comfortable with, or just sit and watch.
- FMS students who are just getting started on an exercise regimen will typically be going through a tough time. It takes 6 weeks to 6 months (give or take) of exercise before the body normalizes and stops feeling achy and awful during and after physical activity. FMS sufferers should gradually build up the duration and intensity of their workouts, so an hour long class might be too much for a new FMS student. Encourage them to take breaks as needed and to practice in short spurts at home (exercising only once a week is not going to help them get over this initial period). Try to make them feel like it is 100% fine if they sit and watch during class, or sit and follow along with their arms, etc, whenever they need to.
- FMS students might have a harder time than most being punctual or having regular attendance to classes or meetings. You would too if you were getting 2 hours of sleep a night every night, which is what a lot of FMS patients feel like. Be tolerant and patient. If it is possible to offer students with FMS a payment option that is more permissive of missed classes, that would probably be a huge burden off their shoulders.
- Most of all, don't a.) treat an FMS patient like they are a hypochondriac or a wackjob; b.) treat an FMS patient like they have a terminal disease and need excessive pity; c.) get upset, frustrated or angry with an FMS patient for things (like brain fog) that are totally out of their control. We don't need your pity, we just need your patience, support, and encouragement.

I would be happy to answer any questions anyone has about the disease either on this thread or via PM.

Just wanted to share that our instructor, Yucy El Banan, also copes as best as possible with this condition and with her positive outlook on life, she uses all her resources, including the challenges of fibromyalgia, to make the most of every moment in life. If you are interested, you can read it in her own words.

It is approximately the 15th post on the following thread:

tribes.tribe.net/bdfl/thre...aff9bdcfef