I have been on Arimidex for 5 years now (due to finish but that’s another worry!
I started Arimidex after I had a PE post recon surgery whilst on Tamoxifen. About 2 months post implant surgery and starting Arimidex, I had awful fatigue, muscle/joint pains. i also had probs with the expander implants- redness, swelling, heat (especially on radiotherapy side).
I couldn’t tell whether this was all due to side effects of arimidex, reaction to implants, or what was going on! Saw rheumatologist at time (2006) who thought it was due to Arimidex and was very dismissive of implants causing problem.
well, here I am 5 years on, with symptoms getting steadily worse, i have these symptoms pretty much all the time, but then I have episodes when it gets really bad, the pain is awful and every muscle and joint in my body are so painful. This is accompanied by a fatigue that comes from nowhere and means going out in the evning is out of the question-I go to bed before the kids now!!!
Have been seen by another rheumatologist who, in 5 mins, said it was fibromyalgia and because I ahd had it for so long, would now be very difficult to treat.
I just wonder if anyone else has experienced anything similar, and have you found anything which helps?
Would be v grateful for any advice- am 46 but now feel like a 90 year old…!
XXX
Hi Happyshopper, I have Fibromyalgia, was diagnosed in 2006 3 years before I was diagnosed with BC. I am also on Arimidex, I get a lot of pain, cant walk sometimes. I can only go out shopping etc if I use my wheelchair now and I hate it. Because you have flare ups with Fibro you never know what is causing the problems. I described my Fibro like a pain travelling round my body, because one day I couldn’t lift anything with the pain in my arm, the next day the arm would be feeling better but I couldn’t walk because of the pain in my leg. I also have arthritus quite badly,I had to have a bone scan yesterday, because my Gp said he neeeded to see what was causing all the problems I am having at the minute. You do get extremely tired with Fibro,if I am having a bad time I will fall asleep holding a cup of tea. There are a few pain killers they can give you for fribro, unfortunately everything they gave me made me sick. I did have Tramadol, they where fantastic, but after a week I was being continually sick, so I had to stop, but as a pain relief they where brilliant. I dont understand why the rhematologist said that you had it to long to treat, the only treatment they offer is pain releif. I understand how you feel, I went through a real bad stage when I was first diagnosed with fibro, I just thought what is the point. It is really hard also because you cant arrange anything to far in advance because you dont know how your going to feel. Hubbys daughter is getting married in April and I am keeping everything crossed that I am ok. If I was you I would go and see your GP and get him to sort out some pain releif, there is quite a few you could try.
Hope you get things sorted, if there is anything you want to know PM me I will try to help.