Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hi, all! I have been off-board for a long time, trying to get a handle on my world. I have been a member for over a year while my rheumatologists have been unhelpfully not doing much. Hx for me is going on 3 years now of RA symptoms without a dx because I have a positive ANA (dr says it is a "very high positive") and symptoms, but a normal RAF and anti-CCP and all of those other tests I don't understand. But symptoms persist: symmetrical joint pain both hands, both feet, both knees, both hips, swelling (although intermittently and NEVER when I am at the rheumatologist!), redness (also never at the office), stiffness that can sometimes last all day, fatigue, anemia, rashes, fevers sometimes 2 weeks out of a month. Recently (within the last year) I have developed some lung weirdness...inflammation in my lungs and ribcage that seems like bronchitis but isn't. It goes away after a steroid inhaler (what is in my lungs, not what is around my lungs). My rheumatologist is finally taking my symptoms seriously, but not seriously enough to treat me, still, so I take naproxen PRN and suck it up the rest of the time. The best I have gotten out of them is "autoimmune disorder unspecified."
So I have been trying to "deal with it" (it being having 2 days of feeling relatively well a month on a good month while having chronic pain and stiffness every single day) for the last 6 months and I have been doing things to try to take care of myself. My work and personal life are very hectic and there is no changing that...I own 2 businesses (one large and one small) and am working on my clinicals for counseling, and I am a single mom with 2 boys at home ages 6 and 12, and I have a daughter married and a grandson almost 2 who live a state away, and I am preparing to file for divorce after a horrible 16 year could-not-possibly-pass-for-a-marriage. Hectic though it is, I can work in bed when I need to (I have 3 days this week) and I work from home a lot. I have also been starting to be more open with my family and closest managers/supervisors within my business about my health, intending to just have people in the know so that when I have to self-care they know why.
Now, for the point of the post...I really need this support group. It may be years before I have enough of the symptoms at one time in the rheumy's office to be able to officially have the dx of RA, but I KNOW that is what is going on with me and I need the support of others who get it and understand what it does to a person to have something so all-consuming and to have to push through it and still manage life. My family tries to understand and offers a lot of advice, mostly "you need to stop doing so much" (usually followed by asking me to do something else :-D). But no one really understands. I am so very grateful that this board exists.
I remain untreated, no meds other than anti-inflammatories. I keep praying that will change with the next blood panel. So far, next appointment on Halloween, could be spooky. I know it is a bit self-sabotaging, but I hope I am sick as a dog on that appointment.
Thanks for listening (reading) and thanks more than anything for being here!
BUT, because I was not treated hard in the beginning, I now have ultra severe RA. the new protocols are to hit this disease hard in the beginning. You have already lost that window, but it is not too late.
I cannot believe this rheumatologist did this to you, but it also does not surprise me, in light of what I went through - but that was 20 years ago! So please, change doctors immediately. Anti-inflammatories do nothing but cover up inflammation, they do not begin to deal with stopping the disease.
Hoping you will see how urgent this is, and that not all doctors are created equal!
I agree with MarleneJ about finding a new rheum if you can. Make copies of your labs and any other tests (X-rays, etc) in case there is need for comparison or to reduce the need for duplication. Keep a diary of your symptoms, temperature, and even pictures of your redness or swelling or rash since they always seem to go away for the doctor visit.
Has lupus been mentioned? Many of your symptoms would fit lupus too, and arthritis can be seen with it. Your "lung weirdness" should be checked too -- have you seen a pulmonologist? And some people can have both RA and Lupus. Some treatments are similar, but there's also the need to monitor for different complications of each. What you really need is something to make you feel better too, so you need someone to make a diagnosis and get you on some good medications.
Sorry you have been having such difficulties with symptoms and family situation and all. I hope you get some relief soon.
My allergist did that for me cause I had hives and they needed to be active for him to make a diagnosis.
Other things ou could ask to be tested for: Lyme disease, fibromyalgia, Sjogrens Syndorme. Regardng the last one - do you have dry eyes and/or dry mouth?
I found a rheumatologist in Northern Virginia, about 2 1/2-3 hrs away. I drive a lot, so I don't mind the drive. I just feel really discouraged. The ones I am seeing are that University of Virginia, they are who everyone goes to when their local person isn't helping or doesn't know what is going on. I think the discouragement mutes my ability to trust myself and trust my sx. They were so dismissive and unhelpful in past visits that I honestly thought maybe it was all in my head....but somatic thoughts do not twist your fingers or give you fevers!