Is it CLL or Fibromyalgia getting worse??

[Guest guest]

Hi all,

Please bear with me while I ask this long drawn out

question:

When I was first diagnosed with CLL in Sept 2008 I also had

AHIA anemia. In fact, it was the shortness of breath

associated with the anemia that led me to the doctor in the

first place.

After being treated with large doses of steroids for the

AHIA, my platelet count returned to normal and has remained

high ever since.

However, after coming off the steroids my muscles and joints

hurt so badly I could hardly walk! Went to oncologist and

primary care physician and all they would say is I probably

came off the steroids too fast. Neither gave me any

direction on what else to do.

I went for other tests to see if it might be MS, etc and

nothing. Went to pain management center as I had some

previously diagnosed problems with my back and they

determined nothing going on with my back was causing my

pain. Even went for accupuncture and, after several visits,

the doctor told me she thought it was not something she

could help me with as she thought it might be neurological

in nature.

Finally found an Internist who diagnosed Fibromyalgia.

Please understand I had NEVER, EVER had these problems

before the steroid treatment.

So, for the past 3 years I have taken some injections from

her that have helped and she gives me some pain meds for

times when I cannot handle the pain.

PROBLEM: Over the past 4 months I have become more and more

fatigued. The muscle and body pain is now more pronounced

and what used to be a 2 day a week " lost day " due to pain

and fatigue is now an obsessive daily thought. I hate

this!!! I don't know what to do.

LAST TESTS: Blood tests this week show no indication of

progression on the disease EXCEPT that my liver count is

up. I think it could be the pain meds as I took more than

I usually do the last 2 weeks due to pain. We are going to

retest in two weeks giving me time to reduce my intake. We

did see slight spike about a year ago and I reduced

medication and count returned to normal. We seem to have a

liver " sensitivity " problem in our family so I don't drink.

When younger I was advised to watch my acetaminophen

intake.

QUESTION: I cannot tell if what is happening is a result of

CLL progression or fibro? Is this common and how does one

know if you should begin treatment? I really don't want to

live like this BUT it would be foolish to undergo chemo,

etc and still feel so bad afterward if this was not

associated with CLL.

How can my oncologist determine if this is progression of

CLL or Fibro since I think the " symptoms " seem similar and

my blood tests, with the exception of the liver results

show no significant change?

Anyone else have this problem now or in the past?

Thanks for any advice you might have.

Joyce