doc visit today

[Guest guest]

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

[Guest guest]

The part that I've always hated, is waking in the morning and trying to open your fingers that have stiffened like there was a ball in each fist. When that happens, I know that I'm probably in for a miserable day. However, the Cyclobenzaprine works really well for me right now. I'm very very careful to watch where I walk or anything else. If I fall, not only is it horrible to get up; but, it's a guarantee that I'll suffer for days.Gloria

Tonni,This sounds all too familiar to me. Why does the doctor say you do not have Fibromyalgia? Did he test you for pressure points? My original GP that I had for 8 years prior to my Hep C treatment told me that he didn't believe in the Fibromyalgia diagnosis but if there ever was a classic case I had it.. but he still didn't believe in it. He said it wasn't it. Then I had 4 other doctors tell me it definitely was Fibromyalgia. I switched doctors and I am being treated for it. I described my pain as waking up in the morning feeling like somebody had beat me with a crow bar during the night. That was the only way I could explain it. I still have pain but it is being managed a lot better now.

Hope that helps some...Hugs,TeriOn Tue, Jan 18, 2011 at 8:47 PM, Tonni <tbrende7@...> wrote:

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

[Guest guest]

sounds like you are even worse than I am...and these docs say tehre are no long term affects from the treatments....

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