Frustration strikes again

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So.....been having a couple of good days. In fact my massage therapist and chiropractor have me wondering if Fibro is even what is going on in my life. I hate this feeling of trying to be convinced that what you feel is all in your head just because you don't hurt all the time. I think today I have like maybe one sore spot therefore I am making it up and I am being weak.

I don't understand it....maybe it is not Fibro, but I don't know why the doctors cannot find any logical, physiological reason to my pain. Blood tests are normal, no significant inflammation or swelling, so therefore nothing wrong. My massage therapist says since he can put pressure on my body with little pain then it is not symptomatic Fibro. I really want to scream sometimes or cry the next!

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Hi, James. It’s important to keep in mind Fibro symptoms wax and wane, if that is what is going on with you. Symptoms can be tolerable one day and difficult the next. Also blood tests alone do not determine a Fibro diagnosis, but instead diagnosis is based on clinical evaluation and symptom reporting as well as exclusion of other illnesses. I know you are in the process of being referred to rheumatologist… perhaps you can journal your symptoms daily to allow rheumy to get a full picture ahead of your appointment. This will help you feel more in control now and also help guide them in your evaluation.

Best wishes and keep us posted.

Laurie

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James, unfortunately there is a lot of misinformation out there about fibro. Just because it isn't painful for your massage therapist doesn't mean you don't have fibro. Yes there are suppose to be certain fibro points that when pushed in a certain way can be very painful. A normal massage doesn't always put the right type of pressure. Then also some people only react when they are in a flare.

My fibro went into hiding for 11 wonderful years. I was sure that they had misdiagnosed me. Then February of 2012 hit. Enjoy the time you are almost pain free. Treasure it as a rare gift.

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Hi again, James! Oh, if you could only read my earlier posts, when I first came here! I had almost the exact same logic and fear about whether it was all in my head because I sometimes had good days. Ahhhh, those golden good days...

I never got any relief from my chiro at all. Zip, zero. Sports massage did help temporarily. If you find that the pain temporarily goes away but then returns again, I think that's cause for concern. Something is causing the pain!

Researchers are now looking at the mitochondria in our cells, suspecting that we have some sort of a mitochondrial dysfunction. Mitochondria are the poer sources in our cells. If they are not functioning properly, it only makes sense that they can't produce enough energy or get rid of enough lactic acid to keep the pain away. I posted a link to research discussiong this and attached it to o n e of our recent conversations. So if you are interested, it's around here somewhere close by

If you want to find it else where on the net, google "fibro" and "mitalchondria" and you will find a lot of info on the research.

And that's also a bunch of bunk about tender points being the uktimate diagnostic tool because my neck and shoulders have incredibly stiff qnd tight muscles - they always have - so often doctors can't get the full 11 tenderpounts on me, yet I still do have fibro.

I think the pain is there, James, but tight muscles make it much harder for the doctor to reach the tender points under those stiff, tight muscles. I am willing to bet that you have so tenderpoint pain, like in your elbow and knee area. Oh, and the hips/lower back. That's where mine show up.

My point is to please, PLEASE trust your gut. You might find several doctors who give you a variety of diagnosis, but follow your gut. Of course, keep getting medical treatment but ask your questions, get your tests, read your info...

But yeah, you sound just like I did about 3 or 4 years ago.

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Petunia Girl said:

Hi again, James! Oh, if you could only read my earlier posts, when I first came here! I had almost the exact same logic and fear about whether it was all in my head because I sometimes had good days. Ahhhh, those golden good days...

I never got any relief from my chiro at all. Zip, zero. Sports massage did help temporarily. If you find that the pain temporarily goes away but then returns again, I think that's cause for concern. Something is causing the pain!

Researchers are now looking at the mitochondria in our cells, suspecting that we have some sort of a mitochondrial dysfunction. Mitochondria are the power sources in our cells. If they are not functioning properly, it only makes sense that they can't produce enough energy or get rid of enough lactic acid to keep the pain away. I posted a link to research discussiong this and attached it to one of our recent conversations. So if you are interested, it's around here somewhere close by. If you want to find it else where on the net, google "fibro" and "mitochondria" and you will find a lot of info on the research.

And that's also a bunch of bunk about tender points being the ultimate diagnostic tool because my neck and shoulders have incredibly stiff and tight muscles - they always have - so often doctors can't get the full 11 tenderpoints on me, yet I still do have fibro. I think the pain is there, James, but tight muscles make it much harder for the doctor to reach the tender points under those stiff, tight muscles. I am willing to bet that you have some tenderpoint pain, like in your elbow and knee area. Oh, and the hips/lower back. That's where mine show up.

My point is to please, PLEASE trust your gut. You might find several doctors who give you a variety of diagnosis, but follow your gut. Of course, keep getting medical treatment but ask your questions, get your tests, read your info...

But yeah, you sound just like I did about 3 or 4 years ago.

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Thanks....this is reassuring and so welcoming. I appreciate you taking the time to respond so in depth.

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And yes...my major tender points are my elbows and knees, followed by lower back and hips. Especially my elbows....being on a computer all day certainly doesn't help, but they kill me most every day!

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Hey, James, I had the exact same problem. The only time that PT helped me was when they used an ultrasound machine on the aching areas and it WORKED! It lets off a subtle heat and takes several times to really get to the aching area. What ticked me off is that I was told they were getting rid of it because it didn't work! Maybe it didn't work because they never thought to use it on people with fibro???

At any rate, I mentioned it to you in case you wanted to try and pursue that avenue. My elbows have NEVER ached like that again, although they still throb some.

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You are welcome! I know that I can be long winded at times but I like to try and help.

And you have now inspired me to hold an informal poll to see where peoples' worst tenderpoints are, because I find that SO many people ache in the hips and back. It's almost as if fibro gets a start in that area then grows from there.

So let's see if we can get some data to see where people have the most pain!

Petunia


James said:

And yes...my major tender points are my elbows and knees, followed by lower back and hips. Especially my elbows....being on a computer all day certainly doesn't help, but they kill me most every day!