I just sent a message to the chronic [pain forum in error, so if it's OK I'll copy it here:
Once again it's turning into another sleepless night, and I wasn't going to mention this to forum, but I'm in so much pain from my bra line upwards, all my ribs, shoulder blades and guiders right up into my head, a really persistent headache finishing it all off. I've been on Enbrel for about
six years now and at first it was absolutely fantastic, but about
last November I started gettin more regular flare ups and extreme tiredness. This gradually increased until last February when I had a bad bout of flu and had to come off Enbrel until it passed, and it took weeks to get over it. Since then the pain and the flare ups and tiredness have again gradually increased. This is made worse by the occipital neuralgia which brings on awful headaches and neck pain which is relieved for a short while when the neurosurgeon injects my skull with corticosteroids injections, generally about
once every ten to twelve weeks. I've told him about
the other symptoms and he wonders if the Enbrel is becoming less effective and arranged for me to see the rheumy tomorrow.
I always worry in case he tells me that either my pain isn't as bad as I think it is!!! or that I will have to come off the Enbrel. I have never said this to anyone before, not even my dear husband, but I am so afraid of going tomorrow. I just get so sick and tired of the hospitals I have to visit - Liverpool for osteoporosis infusions, Preston for corticosteroid injections, Chorley for rheumatology nurses, and Walton for my eye problems - it's as if my body just belongs to them, I have no control and they poke and inject at will.
I really am so very, very tired of it all.
Sorry to burden you with my woes, but I notice how supportive you all are, and dear God i feel so much in nedd of support just now.
Thanks for reading this
Mrs Arthur Itis
At least the pain lets me know I'm alive!
Conditions: polyarthritis , rheumatoid arthritis, osteoarthritis, ankylosing spondilitis, fibromyalgia, costochondritis, degenerative disc problems, occipital neuralgia, sjogren's syndrome, osteoporosis, detached retina, macular degeneration. Mobility problems, wheelchair user outsaide home