Hurting so bad
I found out I have RA,OA and Fibromyalgia on 1/26/09. I have known for at least 15 years (didn't always have health insurance) that something was wrong, I would work 40 hrs a week m-f and then I either couldn't get out of bed or I laid on the couch and slept the weekend away just so I could make it another week at work. Lost a lot of jobs and have been told that I was depressed. well of course I was, I was sick and nobody was listing and now after 2 years of non stop tests and copays and 7 positive ANA test and my hands swollen like apples and so stiff I couldn't make a fist until my PCP finally sent me to the RA doc and thank goodness for that. All the blood work came back positive for RA and I have a really elevated Anti-CCP test my ra doc put me on 5mg 2x a day prednisone and 400mg. of plaquenil 1 x a day and I am taking 800mg. of Ibuprophen 3 to 4 x a day, with 40mg of Protonix 2 x a day to protect my stomach which it didn't I also have Barretts Esq. My lower spine is now compressing and I am having so much pain, I went bacl to my RA doc and she drew some blood and said just rest, well I got a call from her nurse today and she said everything loooked okay amd I am not in a "flare" and I told her since my appt. a week ago I am in so much more pain and she really didn't seem to know what to say to me and we left it at that. Help, can you get a flare up and still not have inflamtion going on in your blood work? or should I find another PCP and RA doc? I don't know what to do and I can not loose this job too.
I'm so sorry you're having a rough time - this disease can really mess with your life.
The thing about blood work is that it doesn't always tell the story - e.g., you can have a negative RA factor and still very obviously have RA. However some doctors get very attached to tests and numbers and that doesn't always work for their patients. I am tempted to suggest that you try interviewing and other primary care physician - although RA can be tricky to diagnose and often cause people to go from doctor to doctor for a long time before they find me get the diagnosis, two years of tests seen a really long time before a referral to rheumatologist, especially considering your swollen hands.
When you have RA, pain comes from two things. Active disease with increased inflammation and swelling will cause pain - do you have visible signs of a flare? Are your joints read and swollen? If yes, then maybe the blood work is wrong. The second cause of pain when you have RA is damage to the joints. Untreated RA erodes the cartilage and when it's eroded enough, it hurts a lot. How long have you been on Paquenil? It takes a while to work, so if you've just started on that medication, it could be a matter of being patient to let it do its thing. While you're being patient, however, you should have better pain control - is completely unreasonable to expect you should just soldier on through this kind of pain - and I would suggest that minimum asking for an appointment with your rheumatologist to get bigger painkillers. If you're been on Paquenil for a while and it's still not working, you may want to discuss other treatment options with your doctor. In terms of whether you should be getting a second opinion from another rheumatologist, it's certainly something to consider. One of my recent post is called 5 Things to Look for in a Rheumatologist and you may want to read that to see if your doctor has potential. If not, interviewing another rheumatologist or two might be a good idea.
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It is time to FIRE YOUR DOCTOR! My rheumatologist is also a woman, but my GP takes care of my pain. I can barely get out of bed without Morphine. You should be on such a regimine. After my cancer, the complications (dead intestine, took 3 weeks to finally decide to cut) I have found NONE of my female doctors had much compassion at all. They all just think they're the s*&^, because their docs. Fibromyalgia alone is painful and you got a tripple whammy.
Seriously, find a nice old male rheumatologist and simply walk away from her. He'll get your records from her.
I'll keep you in my prayers.
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Firt off, I am really sorry you are in so much pain. I know how you feel as I deal with it daily and am often at my wits end and cry out of frustration that nothing seems to be working. The medications prescribed for RA due to take time to work. Prednisone might be an option for you, initially it can be prescribed in a high dose and then tapered to a low dose of 5 mg. Prednisone helped me more than anything else. It also gave me a burst of energy I hadn't felt in a long time. It has been more than a year for me since my initial diagnosis. I am still in a lot of pain and am waiting for the next step up which will be a biologic after being on 3 dmards (Arava, methotrexate, plaquinel) with still no resolve in my symptoms. Hang in there, it does take time for these medications to work but your pain can be better managed. I am also thinking that working full time is not helping. I am not sure of your situation but if you can apply for a short term disability or medical leave of absence it might help. You are in my thoughts. Be firm with your doctor and let her know how much pain you are in and if you don't get results ie better pain management ask to be referred to someone else. I have had female doctors and they have been very good.
Don't let gender affect your decision. My doctor is notorious for a bad beside manner however he is the head of rheumatolgoy and I trust him. That is the most important factor in choosing a doctor. You must trust that they will do their best to get your RA under control.
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Your Ideal Rheumatologist
Establish a relationship with your doctor that works for you.
all of the above answers I agree with. RA can lead to, or worsen, OA, once the joints are damaged, it's happened badly to my wrist & hand.
FM alone can be disabling. If your ESR (SED) or CRP is not high, consider asking for one of the new fibromyalgia drugs, they focus more on the nervous system (one new proposed name for fibro is 'myalgic encephalitis' because basically, it's the nervous system that is overstressed.) It's NOT all in your head, however. It's in the entire nervous system. The spinal fluid has more of what's called Substance P, which correlates with a higher pain level in the patient. This is objective evidence. People with FM in the past have been on painkillers, and also drugs (sometimes at very low doses that give you better sleep, that allows your body to get STAGE 4 sleep) like cyclobenzaprine (especially good for muscle spasms), amitriptyline (at higher doses it's an antidepressant, but it was first designed for sleep & pain), neurontin (gabapentin). Now there is Lyrica and other meds - check the section on this site about FM...
Wishing you well - it's hard to take just one step at a time, but hang in there.