My Story :-)

I'm so sorry for what happened to you and for your family (and doctor) brushing your pain aside. It is so hard to describe the pain to those who have never experienced it. I, too, have RA in my hands and feet - diagnosed almost 3 weeks ago. I wonder what meds you are on? I recently had my 1st Enbrel injection and am 95% pain free. It's a scary drug to me, as it suppresses my immune system, but it also STOPS the progression of the disease in addition letting me live life pain free, so I'm going to continue. I am also incorporating much more raw fruits and veggies in my diet and am slowly reducing grains and animal products to see if this helps. I wish you luck and glad you have joined us on this board. There are wonderful people here who are kind and knowledgeable!

Reading your story made me so angry - I hear so many stories about people who aren't believed by doctors, but yours takes the cake and I certainly understand that you're dealing with some anger at the people who would listen to you. Unfortunately, living with a chronic illness means being proactive and not giving up even when you're rebuffed by the medical profession.

However, the good news is that you finally found a good doctor and are getting some treatment. Has you doctor prescribed one of the the DMARDs (disease modifying antirheumatic drugs like methotrexate, Enbrel, Arava)? If not, you should discuss this with him. These days, the prognosis for RA is very different from the one 10 years ago - with the Biologics now on the market, such as Enbrel, Humira and Remicade, people are being treated early and aggressively and this kind of treatment can make a huge difference to your prognosis. Although this kind of medication won't reverse the deformities in your hands, they can stop more damage from occurring. I've had RA for over 40 years (got it when I was four) and when I was growing up, there wasn't any treatment for RA, so I have deformities in my hands and many other joints. You find another way of doing things and for a long time, I was fond of wearing funky rings - if you can't hide it, dress it up, right? You may also want to ask your rheumatologist for a referral to an occupational therapist who can help you find various tools and doodads that can help make your daily life and little bit easier (e.g., dressing sticks, kitchen tools, etc.)

I don't know anything about the redness in your face, but it's possible that once your RA is suppressed, that may diminish. Intense stress often shows up in hair loss and you may be able to reverse that by getting some B12 shots. If you can, I'd recommend supplementing your regular medical care with a naturopathic doctor - I've used one for years and it has helped my body and general health become stronger, which supports the RA treatment. You may also want to get some counseling - adjusting to having a chronic illness can be hard and having someone guide you through it can not only help you process the emotions, but also find coping tools that you can use for the rest of your life (therapists specializing in cognitive therapy can be especially helpful).

Thank you for sharing your story. Please consider posting again - I'd love to hear more about your experience with RA now that you're on the right track.

Just had this dission with my Dr. about the new med. for RA He asked me if my tratment was not working ? to than I told him it was and he asked me why change something that works for you. I gave up red meat and any food the bring pain and I take Celabrex faithly