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My doctor's not sure....

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Fibromyalgia
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Posted 4/9/2013 4:55 AM (GMT 0)
My doctor first brought up Fibromyagia to me, but then when I didn't get enough "tender points" he said he wasn't sure if that's what I had.

I have had so many tests, bloodwork, x-rays, ect and all came back normal. I feel like I'm going crazy some times when talking to doctors. After my doctor brought it up I started looking into it and it and I just want to know if this sounds like what anyone else has gone through.

I've experienced chronic leg pain for years, on and off, however last year, in February I started experiencing pain almost daily, buts still mostly in my legs, with only occasional pain in my shoulders and hands. The pain isn't intense most of the time, maybe a couple times a week does the pain get up to a 7 or so, other wise it's just a constant annoyance, but not terrible. I have GERD and also IBS, and my memory is just awful, I get lost mid sentence quite often.

Now, I'm saying all this because I want to know if anyone who had fibromyalgia feels pain more in certain areas or is it an all over pain? Also do any of you have fibro without at least 11 tender points? Also, around the same time the pain started more often my motion sickness racheted up dramatically, it used to only bother me on carnival rides, now I can't even play video games without feeling sick, I don't know if it has anything to do with it, my doctor kind of just brushed it off and offered my anti-nausea medicine.

Sorry for so many questions, I just feel so lost and want to know if I need to push my doctor more for answers or what to do next.

*Also if it helps to know, I'm a 25 yr old female. I also meant to mention that around the same time frame I started feeling tired more often than usual, even though my daughter was finally sleeping through the night I can't make it through a whole day without a nap anymore, and I used to never nap. Often it feels like I'm fighting to keep my eyes open throughout the day.

Post Edited (K-Bri) : 4/8/2013 11:21:06 PM (GMT-6)

Posted 4/9/2013 5:36 AM (GMT 0)
Hi, K-Bri. Welcome to the forum!

Actually, what you describe sounds like it very well could be Fibro to me. The tender point test isn't the gold standard that it used to be...(not everyone has all those exact tender points.) We have a thread, first one on the list, called, "Fibro 101." There's so much good info in there - links about what doctors think is causing this illness, an explanation of it, how to deal with it, pain charts, and so on.

I have way more pain in certain areas, too. Other factors play in (degenerative disc disease and IBS, in my case.) And motion sickness - yes, indeed! I can't swing on a swing, or ride a bike, or look out the window of a moving vehicle...as far as failing memory - OH yeah! That's really a common one.

You might be able to work with this doctor, or you might have to keep looking for one who will really listen to you and actually try to figure out what's going on with you. I can't tell you how many doofuses I had to go through before I found a great doc! That was 20 years ago, and I'm still with him.

My Fibro started with my first pregnancy, and got progressively worse with each one :( Unfortunately, having/raising kids can be so draining on the body - not that I'd have traded it for the world :)

I hope you'll keep posting. We are a supportive bunch here and really like to help eachother. Good luck with figuring it all out!

Debbie
Posted 4/9/2013 6:05 AM (GMT 0)
Thank you for your response! It obviously wouldn't be a "good" thing to be diagnosed with, but at the same time it would be nice to finally have answers, you know? Hopefully I can talk to my doctor a bit more about this at my next appointment.
Posted 4/9/2013 1:53 PM (GMT 0)
I agree with Acheybody, the tender points are not the only thing your doctor should be relying on, and not many doctors use them any more and if you think it's that then you should find a better doctor that specializes in fibro.
Many well wishes and hope you find a better doctor that can help you.
Posted 4/9/2013 2:31 PM (GMT 0)
K-Bri,
Welcome..and Achey is right, read the fibro 101 and you will get amazing answers to most of your questions.
Sorry you are feeling so poorly, hope you get some answers and start feeling better soon :)
This is a GREAT place to start getting support and understanding.
Hope to hear from you again soon :)
Posted 4/9/2013 4:43 PM (GMT 0)
Hi, Bri, and welcome!  The American College of Rheumatology set the standard for the tender point test but have since changed it because our pain waxes and wanes so this test isn't that precise.  The best thing is to rule out other illnesses and then a diagnosis of fibro is given.  Here is a link from the Mayo Clinic explaining it better than I just did.

 

http://www.mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=tests-and-diagnosis

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links would be the ones called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You just might see yourself there!

 

Don't hesitate to ask questions because we are here to help you.  I'm looking forward to getting to know you better and I hope to hear more from you soon.

 

Sherrine

Posted 4/9/2013 5:50 PM (GMT 0)
Hi Bri
My pain is usually only in the arms, hands and neck. During a flare tho everything will hurt. I got used to my hands and arms and i only went to see the doc when my legs started aching, so my answer is yes the pain could be localised.
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