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Mrs arthur Itis
Date Joined Jul 2009
Total Posts : 41
Posted 7/27/2009 7:11 PM (GMT -6)
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
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Date Joined Mar 2006
Total Posts : 1354
Posted 7/27/2009 9:05 PM (GMT -6)
(((Arthur)))) Sorry to hear about
all the pain you are suffering :(.
Dont be afraid to visit the Rheumy - arm yourself with a list of all your symptoms, pains and meds.
Have you tried anything else for your RA other than Enbrel? I know a few people take Methotrexate, Remicade and Humira for their RA - ask your Rheumy for other med options.
Sheesh I hear you about
all the Doctors we see - but Im lucky they all have offices within walking distance of each other.
Good luck and I hope your Rheumy comes up with a game plan to nip this pain of yours in the bud.
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Date Joined Sep 2008
Total Posts : 1670
Posted 7/27/2009 9:57 PM (GMT -6)
Hey Arthur, I think it is reasonably common for the biologics to stop being effective and require a change. My rheumy has certainly mentioned it to me as the humira is no longer working as well as it was. Simply changing the anti TNF inhibitors around can work wonders, so I'm told. I agree with Sydney Jo, tell your rheumy all your symptoms. That way they can assess you properly and decide on a course of action.
I see three different specialists for my overlapping symptoms and go through really low patches with it all too, but now I'm on a shared care plan so they all send each other copies of their letters so everyone is in on my treatment, the meds I'm on and current problems. Seems to be working so far. It stops the double up of tests happening etc.
But we're thinking of you, goodluck tomorrow, golitho
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Date Joined Jun 2009
Total Posts : 112
Posted 7/27/2009 10:16 PM (GMT -6)
Mrs Arthur Itis,
I can sympathize. I get so tired of doctors and medications and insurance companies and tests that I just want to chuck it all in the trash and run away to the white sunny beaches in the Bahamas, and I've only been dealing with RA for a few months! But it's a short-lived fantasy.
You've been dealing with this long enough that you don't need to hear "just put one foot in front of the other and do what you have to do", but I still have to tell myself that frequently. I'm just so tired of it all, and probably when my meds start working and I'm not so exhausted all the time it will get easier, I hope.
I'm so glad this forum is here for the times I really need to vent to people who understand what I'm going through. Best of luck to you!
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