Returning after a couple of years

[Guest guest]

Hello...

My name is Sam and I was active in this discussion board a couple of

years ago. Now I'm back... still experiencing the " challenges " of

life with RA. A little of my history:

I'm 37, I have 6 year old twin boys and a 3 year old little girl,

my husband and I live in a small town in central California.I am

currently a stay at home mom and plan to teach elementary school when

my 3 year old starts 1st grade. I was first diagnosed when I was 16

with Stills Disease, a rare form of arthritis much like RA but with

rash and fevers. After a few years of flaring up constantly it just

went away one day. Then when I was 33 and in last trimester of a

pregnancy, I was hit with severe joint pain in my knees. Since then

the joint pain has moved to include my knees, ankles and most

recently my hands. We have been trying to get it under control with

meds for the past 2 years. I am currently on methotrexate(25 mg

injected once a week), prednisone (in process of tapering off and at

3 mg), and Remicade (maxed out at 1200 mg every 4 weeks). I also take

various narcotics for pain, Lunesta for sleep and Cymbalta for RA

related depression. I have already blown through Enbrel and Humira. I

recently went to UCSF for a complete work up and second opinion. They

decided that since I do not have the rash or fevers it may not be the

Still's returning but " just " RA. They finally found a RA test (a

fairly new test called CCP) that I tested positive for, I have always

been RA factor negative.

So that's my story, life is a constant struggle to achieve a balance

between activity, pain and meds. Probably like many of you I tend to

do too much and then end up in more pain. I do relatively well until

just before my next Remicade infusion, then for a few days I am

limping and hobbling about. One of the things I am in the process of

doing is getting set up with a pain management clinic. I have tried

physical therpay, massage, accupuncture etc... and nothing works well

enough to allow me to function as a mom of three little ones. My

primary doc has always been great about prescribing narcotics. This

is not her specialty however and sometimes I am lost as to which drug

to use when and for how long etc... thus the pain clinic referral. Do

any of you currently go to any type of pain mgmt. center? What has

your experience been? What can I expect? Does anyone have a written

out pain management plan? This is ultimately what I am trying to get

together, a plan of action.

So, thanks for listening to my tale. Hope this finds you all well and

at least feeling better than worse. I look forward to participating

in future discussions.

Sam