Anyone here suffer from fibromyalgia

[Democracy White]

I was just diagnosed with a few months ago. I just want to know if anyone who has it gets fatiqued by doing a simple thing such as cleaning the bathroom or going grocery shopping.
My dad tends to think that I am lazy because I don't do anything around the house or get out and exercise. I want to be able to walk at the park but I can't go for a long time.

So please let me know

Dee.

[deek]

1. absolutely

Check out the guide for relatvies and companions here:
http://www.sover.net/~devstar/sheets.htm

And the Letter to Normals here:
http://www.fibromyalgiatreatment.com/letter_to_normals.htm

You are not alone. What you are experiencing is very common for those of us with fibro. Invisible conditions are like that. No one would ever call someone who had a visible disability "lazy" because they couldn't do something without pain or because of exhaustion due to decreased energy problems.

Take care.

[Warpy]

2. Extreme fatigue is one of the hallmarks

and it's NOT all in your head, and you are NOT lazy. Tell your dad you're sick and to go jump in the lake.

However, mild excercise like slow stretches and walking are absolutely essential to living with this disease. If you don't do them, you can get deconditioned pretty quickly.

[MsConduct]

3. Yep, for over 10 years. The part I hate the most is the insomnia.

About five months back, a new friend of mine introduced me to 'colloidal silver'. He made me a machine so that I can make my own, and within 10 days I was feeling like a new woman. To learn more about the benefits, check out this link:
http://www.all-natural.com/silver-1.html
It's not an advertisement, it's informational.

Don't let ANYONE give you a bad time, and enjoy your "good days" fully. Good luck!

[mopinko]

4. yup

after YEARS of going to doctors. i started taking trazadone a few weeks ago, and i am practically a new woman. sleep is all.

[REP]

5. No, But Boy Do I Know Extreme Fatique!

If I overexert myself even mildly, I run a high fever and am practically bedridden for 2 or three days. (I have everything but FM, it seems - kidney disease, inflammatory arthritis, et dreary etc!)

[AutumnMist]

6. I Suffered From The Extreme Symptoms

of fibromyalgia for about two years. I still have flair ups now and then (I was diagnosed about 8 years ago at the age of 26). I got the same reaction that you did from my family. My father pounded on my apartment door and demanded that I quit "felling sorry for myself" and go to work. But I just couldn't do it at the time. I was exhausted...mentally and physically. It would take me an hour to get out of bed due to the pain in my joints and the weakness in my legs. I do understand what you are going through. I am sorry that the response is so much later than your original post! I just came across it. If you ever need a shoulder to lean on..or just a friend to talk to..I will be there. :)Fibromyalgia can be very isolating sometimes.

[mopinko]

7. self loathing is the worst symptom

when i look back at life with an invisible illness, the thing that hurts the most is how weird i knew i was, and how that made me feel. i am the rare person to get sick starting with the original injury. so i have been sick since age 6. it got unbearable after having west nile virus, and developing lupus. but it was always like wearing one invisible, concrete overshoe. and i judged myself and was judged by others as just a little crazy. of course i was. but it was more than that. ie it made me a klutz. so i couldn't jump rope or catch a ball. and i fell down a lot. and i had a screwed up pain response. so it was nice to look at my broken arms and think, i think this is supposed to hurt, but it doesn't really. but you know you are in the twilight zone.
it gives the world an odd color. and makes it all harder.

[Democracy White]

8. I am going through I flare up right now

My CPAP machine (I also suffer from sleep hypopnea) isn't working, plus my backside and my inner thighs are all cramped up. I didn't get enough sleep today because of the shooting pains down my legs. I prop my legs up with a few pillows cause laying straight makes my back hurt more. Well the pillows don't help much and I think I need to get a body pillow from Target.

Dee

[oxbow]

9. I was diagnosed with Fibro

I had chronic fatigue too. Couldn't walk for more than five minutes. I found out that I had a bug from travelling overseas that wasn't diagnosed though. I am doing much better now.

I don't believe in fibromyalgia actually. Its a category Dr's put you in to get you off their backs. Their is no real medical test for it either. Especially if you're young, I wouldn't accept this diagnosis. Consider alternative healthcare, for instance. The things that have worked best for me are Reiki and craniosacral therapy.

[Warpy]

10. I'm afraid you're speaking from ignorance

because yes, quite a few things are showing up in tests on people who have FMS. For one thing, there is a huge amount of substance P, the neurotransmitter that is responsible for conveying pain sensation, in the cerebrospinal fluid. They found that when they did spinal taps on sufferers.

PET scans revealed that pain is perceived in completely different parts of the brain than it is in non sufferers.

Those are just two of the quantifiable lab tests. There are others, because the syndrome is frequently associated with other autoimmune disease, some of them quite serious, some of them crippling, and some of them fatal.

So before you cavalierly dismiss people who are suffering horribly as being chronic complainers who would do better to visit alternative therapists, educate yourself on just what you're talking about. I'm afraid your suggestions don't do a damned thing for fibro.

[oxbow]

11. Oh hell no

I never blamed the victim or said they are whiners. More like Doctors get tired of people asking them "what's the matter with me?" and them not being able to give them a diagnosis. So they tell them that they have fibro and just tell them that they have to deal with it. Did they check the amount of substance P in you before making a diagnosis? They diagnosed me using that sore spots test. If I have 9/12 sore spots then I have fibro. What if I had 8 though? Am I not sick then? It's all very amorphous as far as a diagnosis goes.

At my reiki share, there is a woman who has fibro. I don't know whether it's a real diagnosis or not, but she gets a trememndous amount of relief from our doing Reiki on her. Shes an older lady tho.

They told me I have fibro. Like me, the op sounds like a very young person. I believe strongly that there might be other unerlying things behind her condition, as fibro at a young age is rather odd.

My suggestions may not help but what's a doctor going to do for her? Put her on antidepressants and pain relievers and tell her to deal? Traditional medicine is in the middle ages as far as chronic pain conditions are concerned. All I'm saying is that she should get a second opinion. Sure there are alot of quacks out there, but also some very skilled healers that work outside the traditional medical model.

[Kathy in Cambridge]

12. If automimmune conditions are present, fibro is not that uncommon

even in younger women. My cousin is in her 30s and was diagnosed with it. At first they though she had lupus, but like Warpy said, she had a huge amount of substance P in her spinal fluid.

I was just diagnosed with rheumatoid arthritis, and I'm wondering if I suffer from fibro too, since I already have it in my family (cousin and aunt).

[mopinko]

13. my doctor of 7 years didn't "believe" either

it is not about believe, it is about understand. and yes, when docs can't figure out what is wrong with you, they put you on pain killers and anti-d's. and guess what, in my case, that f's you up all the more.
to add to what warpy (who pretty much saved my life by telling me that that is what i had, thank you again) there is some evidence that it is a sleep disorder. that random bursts of alpha waves disrupt falling asleep and achieving deep sleep. sleep may not be the cause, exactly, but i am on a different planet right now with good sleep. the only other drug that has helped me was an anti seizure drug. it stopped working, and i personally think that pain meds messed it up.
my pain chemistry is definitely screwy. not only do i suffer from pain that has no apparent cause, most pain meds cause severe rebound pain, and things that should hurt, don't. i have had several serious injuries that did not hurt, including a 1" deep gash in my foot that i experienced as something brushing my skin, and didn't know i had done until the blood make my shoe slide off, and giving birth to 5 babies without ever thinking, gee this is painful. uncomfortable, overwhelming, yeah, but i had not a drop of pain meds, nor did i have a minute where i thought i needed them.
this is all being figured out every day, and it may take forever to trickle down to the doc level. but one way you can tell that a doc knows what they are talking about is when they give you meds, and they help. after a life time of pills that made me sicker, a little knowledge gave me pills, and sleep hygiene measures that have given me a new lease on life.
one of the cruelest things about how this all has happened for me it the number of times docs said or implied that i wasn't sick, just crazy. to say that things don't exist because you don't know how they work should is the hallmark of a bad doctor, imho.

[hyphenate]

14. I was diagnosed 13 years ago

And many of the symptoms come and go according to how much stress there is in your life.

You will find that fatigue is a major sign a lot of the time, and that winter is often worse than summer, because many people with fibrl also suffer from SAD (Seasonal Affective Disorder) and during the winter will end up being even more depressed and withdrawn.

I also have heart disease and only mildly controlled diabetes, so often the fatigue is horrendous. I used to be able to walk a mile or even two, but nowadays, I feel lucky making it through a store without being completely exhausted.

Some symptoms might not even bother some people, while for others there is unending pain or discomfort.

However, despite all this, it is best to keep moving. It just requires some preparation and some patience. Walk to the end of the street for a few days, then double that, and keep increasing the length of the walk on a weekly basis. If it gets too difficult, cut down to the previous length and work your way back up again. Don't try to do it all at once.

Good luck--read as much as you can at reliable websites and join some of the online mailing lists and support groups which can offer quite a bit of help to someone newly diagnosed.

[I_Make_Mistakes]

15. I was diagnosed and believe it was wrong

My rheumetologist (sp?) drained fluid from my left knee, it wasn't gout or arthritis. He didn't test for Lyme disease, which he should've, and concluded that I had Fibro. I later tested positive for Lyme disease.

Fibro is commonly associated with Lyme disease. If you get tested for LD make sure they do a Western=blot and PCR bacteria test at a reputable (Lyme) laboratory.

[Deja Q]

16. Dunno, but I get heavily fatigued when running 300 FEET.

And pain in my joints. Dizziness too.

Could go both ways.

Time will tell.