Re: doc visit today - Tonni

[Guest guest]

doc yesterday said he didn't think fibromyalgia was a real thing either, but then he tried a few of the pressure areas and I have no pains there unless I have worked myself tired, but truly the main part of the pain is in the center of every bone, more thant he muscles, they just twich and then ache when used too much.....

thanks for the links, willr ead tonight when I get a minute

Tonni Brende Wife, Mother, Grandma too...

"Life is not about waiting for the storms to pass... it's about learning how to dance in the rain."

athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful.

http://johnathanourgift.synthasite.com/index.php

so, saw PCP today and he says I do not have fybromyalgia or even rheumotoid arthritis.....says he has no idea what I have, for he has never heard of long term bone pain from the chemo.....seriously, I know I am not the only one here....He says that my shaky, shrinky feeling muscles, complete body BONE aches, and constant pain, fatigue and daily questionable ability to do anything more than get dressed, 2 years after stopping treatment withoput clearing is not soemthing he was ever taught about in med school....However, he know sI am sincere and has a plan, which is betetr than yesterday. Tordol 50 mg and Lyrica 75mg is all I have tried thus far...today he gave me Ultracet (tordol with tylenol at a higher dose than before). He also perscribed Relpax for the headaches/migranes that have now started. I am hoping they are a sinus thing that will be resolved with the outpatient surgery on the 18th. Beyond that he changed the 6 month labs GI

ordered and had me do more. Plus liver was slightly enlarged at last unltrasound, so he ordered another...funny how no one mentioned that to me before.GI and Rheumo docs are next month. Taking same list to them both and gonna find a way to get beyond this pain. It ain't depressing, as much as it p's me off to not know what I may or may not be able to do from minute to minute. I know one thing a day, unless it is a day that the Lyrica seems to give me a bit of a high, which then I get house cleaned and go down for 2 days after in pain; but hey, house gets cleaned, so well worth it considering how rare that occurs.DOES ANYONE HAVE THIS INNER, DEEP BONE PAIN THAT FEELS LIKE AN OUTLINE OF THE INNER BONE AND THAT ENTIRE INNER AREA OF EVERY BONE FROM ELBOWS TO FINGER TIPS AND PELVIS TO TOES CONSTANTLY ACHE? If so, do you have a name for it or an idea of anythign beyond burning hot baths that can touch the pain...without knocking me out, I have a

special needs son dependent on me, so must have 2 feet on the floor at all times.Thanks fo rhearing me out.Tonni