Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

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Survey....just curious.

Bon67
Bon67
I have not been diagnosed yet, but I know Fibromyalgia is what I have, everything fits for me except the pressure points. I was wondering if you can tell me if you had all the pressure points when you were diagnosed, and if anyone out there was diagnosed without them? My skin is ultra sensitive, feels like a sunburn and I cant stand to have anything touch my legs, mostly at night, but when the doctor touches the 18 tender spots I didn't feel any pain with most of them, only a couple. Thanks for all your help with this, just so curious. My feet and legs are the most sensitive. Also if I scratch the back of my neck it feels like I scratched a sunburn.

1. How were you diagnosed?
2. How many pressure points did you have?
3. Did you always have the pressure points, or did they come on later?
4. How long did it take you to get diagnosed and if it took a while, why did it take so long?

I don't want to have any problems, but obviously something is wrong, but for me not knowing for sure is the hardest. I hate being in limbo land. Thanks for all your help. (((hugs)))
Bon67
Bon67
Thank you letibe, I did go through all the tests, MRI's, blood work, they all come back negative for anything, except the brain scan which showed 4 lesions, but the MS specialist said she doesn't think it is MS, because of the lesions being non-active and their location. She thinks they are from smoking. lol...I've had every test that they can give, now I think it is down to finding the right Doctor for a diagnosis. (((hugs)))
deleted_user
deleted_user
Bon67,

My experience is that rheumatologists are the most likely to assign the diagnosis, but not necessarily the best at treating it. they prefer things they can more easily manage and are pretty exclusively drug oriented.

I have had best luck with treatment and good collaboration with internal med docs. But that is just me.
deleted_user
deleted_user
I had been to a walk in clinic so many times with other issued that come with Fibro. IBS, stomach problems, headaches, body aches, so tired all the time, sleep problems.Had so many tests and blood work done, with no reasons for my pain. After a year of testing was diagnosed with fibro.
The doctor really didn't do all the pressure points. Just my shoulders, neck, chest, back, and arms. At first it was just my upper body. Then now its my hips and knees too.
Went to a CP and he did the pressure points and I had 13 of the 18. Some worse than others.
I think it depends on your activity that will flare up the points. If I'm on my feet alot its my hips, knees, back and ancles. If I'm cleaning house and using my upper body, its my neck, shoulder, back and arms. If I get over tired and lack of sleep I will ache all over.
Everyone is different , you have to learn what works for you and know your limits. Sleep is very, very important to my body. If I don't get sleep I will have so much more pain..........

My skin is real sensitive too. When I sleep I can't let skin touch skin, have to but pillows between my knees. I sleep with 4 pillows. Sometimes I can't stand my clothes touching my skin. I have to wear a t-shirt or camsol under my bra.
Skin is very sensitive to hot and cold too.

Good Luck
Fantod
Fantod
I knew what the problem was when I arrived at the rheumotologists office. My best friend has Sjogrens and Fibromyalgia. Long story short - high levels of stress, severe TMJ, degenerative disc disease with a disc that failed suddenly, severe OA. The perfect storm scenario for FMS. I passed every criteria for FMS with flying colours. I wasn't surprised at all. Mostly relieved that I might get some help. Take care.
PeaceN2You
PeaceN2You
I have 18 of 18 plus some that my doctor tested that aren't on the chart.

There are many things than can mimic fibromyalgia symptoms - it's not something that can or should be self-diagnosed.
Emily710
Emily710
I agree with Sprawling. Rather,the rehabilitative doctor I saw agrees with that. She says. Hallmark is non restorative sleep.
Bon67
Bon67
That all makes sense, ty everyone, I learn a lot from you guys! (((hugs)))
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