quick question,

i started the drug cytoxan two weeks ago and for the past week have expeirenced horrible knee and ankle pain amoungst other side effects and just wondering how other wegeners patients pain is managed. ive recently fought with my doctors tooth and nail on the topic b/c both my family doctor and lung specialist have told me they do not want me on pain medication such as hydrocodone simply b/c im 19 and their only hesitation is fear of addiction. my joint pain in my legs is completely dibilitating at times and my feet are frequently purple, and on the bottom arch of my feet goes numb. ive been given 50mg tramadol which hardly takes the edge off of joint pain and today was prescribed 100mg neurontin which after talking to a close family friend, i was informed that its been known to make people turn completely manic and irrational and makes you flip out on your care giver. i have enough side effects as it is, and my disease has taken such a toll on the people closest to me that it makes me wonder if its really worth the risk.

so advice is greatly appreciated!
im so lost.
im 19 years old and on chemotherapy.
i have to lean on furniture to be able to get to the bathroom.
a little over four months ago i was preparing to enroll in the navy.
i was a assistant manager in a resturant
i wanted to evenually be a physical therapist.
i had everything going for me.
but no, this past feb. my world was completely flipped upsidedown.
now, my world consists of constant worry and frustration.
i have to remember so many medications and inhalers and vitamins and having to check my blood pressure constantly and give myself b12 shots.
i have to sit around and deal with doctors who have never dealt with someone whos had wegeners.
i have to deal with doctors who one minute claim they've never treated someone with wegeners and the next minute can tell me i dont need pain medicine....if you've never dealt with someone who's had it, how do you know how much pain im in?

so please, if anyone out there has any suggestions as to get though to my doctor, or can let me know how their pain is managed please reply!

-Brittany