Fibrymyalgia - can somebody tell me more about it?

[Deja Q]

Do you have it? And how do you cope?

Thx much!

[belladonna]

1. I don't have it, but I very much suspect that my daugher does

The only solid thing I know about it is that it is extremely hard to get a diagnosis out of a doctor for it, so good luck if you suspect you have it as well. :hug:

[entanglement]

2. don't have Fibromyalgia

but here's a link you might find useful

http://www.aafp.org/afp/20001001/1575.html

[Deja Q]

15. Much thanks - and, yeah, things are starting to make sense.

Given the joint pain, tenderness, numbness and tingling, my pre-existing Chronic Fatigue Syndrome... What I have is not anxiety.

[In_The_Wind]

3. It is manageable.

I have Fibrymyalgia. Lack of sleep is my biggest problem. x(

[belladonna]

6. If you don't mind me asking...

What is your specific problem with sleep? They FINALLY diagnosed my daughter with a fairly rare sleep disorder and I really think, along with her other problems, that it points to fibromyalgia. If I'm being too nosy, just slap me or something :blush:

[In_The_Wind]

7. The onset of my problem was caused by an injury.

It was difficult to sleep because I was in pain. My husband said I would whimper while I was sleeping as I moved about trying to find a comfortable position. Now I have so many active trigger points that sleep is often impossible for more than 3 or 4 hours at a time. :shrug: I need to get up to rest from laying down.

[belladonna]

9. Does anything help you sleep?

They've tried her on everything and it's like she's taking a damn sugar pill or something. No effect on the child whatsoever no matter how sleep deprived she gets.

[In_The_Wind]

10. This may sound odd but I find that if I eat something it helps.

Chocolate is my friend. I seem to be immune to caffeine. I can drink coffee and fall asleep.

Naps help.

Watch her energy cycles. When she slows down try holding her on your lap and sing to her. How old is she?

[belladonna]

11. She is sixteen, seventeen in June

The problem lately is that the sleep deprivation seems to be taking it's toll on her, so I wouldn't know where to begin with the energy cycles at all anymore. When it comes right down to it, that's all she really takes is naps. The sleep study they did awhile back showed that she goes into REM sleep WAY too fast and pops right back out of sleep within an hour, two at the most.

[In_The_Wind]

12. Another thing that works for me is music playing all night.

I seem to have a great deal of what I call brain-chatter. I believe that hearing familiar music gives the brain an acceptable pathway to follow rather than thinking. Gentle sounds can be a focus point as if you/she were heading into a guided meditation.

[Aristus]

4. Yeah.

It hurts.

[u4ic]

5. Yes

I have CFIDS too. I've been in the bottom of the barrel with it...bedridden for 3 of the past 14 years...and I just thank the Universe I'm not there anymore.

I take sleep meds, acupuncture (helped a lot), some supplements...meditate...and most importantly, listen to my body. :hi:

[Kailassa]

8. Until recently I was a masseuse,

and have treated a lot of people with fibromyalgia. They kept coming back because they said it was the only thing that helped them.

One thing I used to get them to do was drink a pint of vegetable juice nearly every day and have a small level teaspoon of nigari each week. That's japanese stuff used to curdle soymilk for tofu, it's what's left of sea salt after table salt has been refined from it, and is very high in magnesium.

My treatment was based on the theory that fibromyalgia was the result of a potassium/magnesium imbalance screwing up the nerves so that after contracting, the muscles never got the message to relax again. So as well as manually relaxing the muscles I wanted that supposed mineral imbalance fixed. Non smokers were much easier to help long term than smokers, and there was not much I could do for heavy drinkers either. IMO anyone who smokes or drinks heavily will get better value from first giving those up than from any treatment.

[northofdenali]

13. Been coping for about 9 years now.

Yoga (very low impact), gentle stretching exercises, occasional physical therapist work, good nutrition, a very supportive SO, and lots of information. Everyone's FMS is different - especially if you're trying to deal with Chronic Fatigue at the same time (or ANY additional ailment, for that matter). Caution on the exercise/physical therapy - be SURE they know what they're up to with FMS, check 'em out thoroughly because it can hurt as much as help. I don't mean to be a downer, but I did have a bad time, and just want you to be aware that many, many health professionals don't know their ass from a hole in the ground about FMS.

A great doctor who will prescribe the occasional REAL painkiller is also a must. Sometimes you shouldn't have to cope, you should just get some relief.

The University of Oregon, as well as the Mayo Clinic and Johns Hopkins all have great info on their respective sites. There are usually support groups even in the small towns, and you'd be surprised at how much info just a little group of folks with the same problem can come up with.

About the best online site I've found is:

http://www.fmnetnews.com/

PM me if you'd like to talk, or just want to gripe! FMS is a royal pain in the everywhere, but it can be lived with.

[radfringe]

14. going on 12 years for me

have good days and bad. Weather conditions seem to be the big trigger - start spasming about 3 days before a big storm moves into the area

the only meds that "help" are the ones that knock me out - and the only reason they help is because I'm knocked-out

been though the gamut of "therapy" - nada for any significant relief

knocking on wood - the worst of the pain/trigger points have abated in the past couple of months. Although I do have frequent bouts of restless legs at night, a couple of IBU's and a leg massage helps cool it out so at least I can sleep

[hyphenate]

16. I was lucky to be diagnosed early

in 1993. Since then, I've taken some drugs on and off, and lived with insomnia endlessly messing me up. I go for a sleep study (the first one, ever!) in June, where they seem to take for granted that I have sleep apnea, which I don't think I do. Falling asleep is no problem, it's staying asleep all night that is, and I usually am up at 3 or 4 a.m. and remain up for several hours before I'm sleepy enough to go back to bed, which thankfully I have the ability to do.

Some days are worse than others, and sometimes there are small stretches of remission, but they don't seem to last. And if there is any stressor in my life, forget it--I'm laid out for a long time!

I do have arthritis as well as the fibro, and because of that, sometimes it's difficult to distinguish one from the other. I've gotten to the point that if the pain is bilateral, it's usually fibro, but if it's only on one side, it's often the arthritis.

Walking long distances is exquisitely painful. My back and legs just can't cope, and I will need a place to sit down for awhile to keep going. And I'll end up limping around because it's that bad.

Fibro is considered an auto-immune disorder. If there is a "bug" going around, you will usually get it. And it's also considered an "invisible" disease, because while you might "look" healthy and vibrant, you know you're not. People just don't seem to give a lot of sympathy to people who look like they're faking it, even if you know you're not.

You might want to try http://www.niams.nih.gov/hi/topics/fibromyalgia/fibrofs.htm for more information. It's a government page from National Institutes of Health.

[lizziegrace]

17. I was diagnosed 8 years ago

My mother has it and my younger sister does as well. I've found that it affects us all in different ways. My mother has foot, ankle and lower back problems. I have shoulder, neck and head problems. Go ahead, it's okay to joke about my head problems! ;)

There's a lot of information on the web. I'd start with WebMD and go from there.

It IS manageable. But I've had to accept that I'm a chronic pain patient and always will be. That part is very hard.

[Babette]

18. Husband has mostly sleep problems from it...

We keep a white noise machine on all night and it really seems to help. We got a 4-inch high density memory foam mattress and memory foam pillows a while back. They seem to help some. For sleeping pills, he's been taking ambien for years. We've been adding a small bite of a 1-mg melatonin pill nightly too.

It's really important to avoid artificial sugars completely, sugars in the evening (dessert, soda etc), caffeine after about 1pm.

He's taking extra potassium, and when he misses it has trouble sleeping.

The hardest part is getting him to get off the computer at a decent hour. When he stays on it for a long time late at night either online or playing games it gets his mind totally wired and he gets NO sleep.

[Orsino]

19. One of my loved ones has it.

It seems to be tied to a bunch of autoimmune disorders (rheumatic fever, rheumatoid arthritis, Sjogren's Syndrome, hypothyroidism). Even sleep disorders have been implicated; sleep is when the body repairs damage done during the waking hours, and if this is interrupted long-term, you will definitely be hurting.

If there's a history of autoimmune disorders (especially rheumatic fever and rheumatoid athritis) in your family tree, please consider seeing an endocrinologist. A visit to a sleep specialist might be in order, as well.

[Deja Q]

21. Thanks!

I will convince my psych to follow through on her plan to get me seen by a sleep specialist. I do have sleep problems... (trouble typing too, the typo in the subject line was not due to poor spelling ability... just an absent attempt to look at what I'm typing despite knowing I have typing troubles...)

[Orsino]

23. I've noticed some responses suggesting that fibro can cause sleep loss...

...but the little I know suggests that it might be the other way around, at least in part.

[riona]

20. coping with fibro

one of my best friends has had it for years. this is a short version of what she said to me: problem with sleeping -tried elevil for sleeping but it failed after time. motrin sometimes takes the edge off. water exercise in cold water more harm than good. hot tub does some good. nerve blocks ineffective. changing season causes trouble - hot weather somewhat better. stretching and some type of aerobic exercise helpful. technique for deep relaxation taught by psychologist the most help of all. depression can be a problem and ibs too. find a support group. keep moving!
p.s. she gets crabby sometimes because of the constant pain - we rant back and forth on occasion - i have constant tmj. we understand each other.

[Squeech]

22. Problem

Fibromyalgia is the diagnosis when there are several apparently related symptoms or issues around muscle pain, weakness, nerve dysfunction, etc. They don't necessarily constitute the same condition every time they arise, so there isn't a "cure" or even a standard treatment: you (or your doctor) try something or other out, whatever works you keep doing, whatever doesn't work you drop. Our little running joke is that "fibromyalgia" comes from the Greek words for "my doctor is clueless."

Mrs. Squeech was diagnosed with it sometime before we got together. Her main symptoms are pain and stiffness. There's an immune system problem that's possibly related-- some other prednazone-like med they gave her for something else years ago did something to her immune system. She's tried a number of things; acupuncture worked, but it's become too inconvenient to find a practitioner. Nowadays she takes Celebrex and does okay. She says it helps that her job (retail sales) makes her move around; she figures she's in better shape now than she's been in for years.

We suspect also diet has something to do with it. She was really eating crap when we met-- lots of ramen and fast food. Nowadays we both cook better food for each other to eat than we would think of to eat on our own-- one of the back-door health benefits of marriage.