For starters I have to say thanks to the folks out there making this site happen. I am as about as lost feeling as I think I can be, and all your words are truly helping me cope.
My short story...4 years ago I made the life changing decision to have a roux-en-y Gastric bypass. I changed my eating habits, began exercising regularly, and 135lbs later I am (well, was) in the best shape of my life. At 38 yrs old, I was running half marathons, weight lifting regularly, playing co-ed indoor soccer every week, and pretty much loving life. I'm the mom of a fantastic 8 yr old girl, and cannot imagine not being the active woman she knows.
About 9 months ago I started feeling tired alot. At first I thought it was stress (a divorce, promotion at work, etc) and then ended up testing positive for severe anemia. In the mean time, every once in a while one of my fingers would bother me, which I attributed to breaks during sports in my younger years. Also, I had shoulder pain (just one side) but was writing that off to potentially overdoing it while lifting weights.
Then, right around Thanksgiving, my knees started barking. One morning after a Sunday night soccer game, I woke to a severely inflamed knee. My primary care send me to an orthopedist, who after an MRI and some failed cortozone shots, decided a knee scope was in order. In the meantime, just prior to that surgery, my other knee blewup and I started having major problems with the IT band on that leg. The left shoulder started waking up as well, but these things were written off to "compensation" for the right knee. As for the anemia, that doc gave me infed iron to boost my counts.
I ended up having the knee scope just after the 1st of the year. In the last two weeks, my joints in my big toes, the knees, shoulders, elbows, and 6 fingers, have all become inflamed/severely swollen. This landed me in the ER, where they did some preliminary bloodwork and found my CRPs were up as well as my Sed rate (?) was high. That was a week ago...when they put me on Percodan and recommended a rheumatologist. I saw my primary care (she ran the bloodwork the rheumatologist will need) and she's told me to prepare for the real possibility that I have RA. My mom has it, and the signs seem to be pointing that way.
I HAD NO IDEA that RA is what it is. Like most of the world, my ignorance led me to believe that it is just another arthritis thing and that the right pain meds would fix it. Now, as I lie in bed typing because I simply do not have the strength to get up, I am in shock an searching for answers. My appointment is two days away, and at the rate things are progressing (it seems a new joint joins in the chorus each morning), I'll be in a wheelchair by then.
I'm a fighter...heck, I lost a person's worth of weight and reshaped my way of living entirely. This, however, has me beat at present. I am looking for help as to what to ask this new doctor when I see him in a couple of days. How long should I keep taking the pain meds? Is it normal to feel like they aren't really working now (other than to settle me down mentally)? I obviously don't have a diagnosis yet, but I have zero rashes, fevers, etc. and my mom has very mild RA, so we will see.
Hi Stacey
So sorry to hear of all this. Unfortunately it is a well trodden road for me and many others. It is a hard road, but as you say, you are a fighter and that will be important.
It is good that your bloodwork is giving a clear indication of what the problem is likely to be. Some people do not have positive blood results and yet still have the disease and it takes longer to get a diagnosis
If you do have ra, It is normal for the pain meds not to work well at first, pain levels in ra are hard to control at first.
There are many drugs out there for this condition and it is a bit of a journey to get the right drugs. Some people have more success with this than others, I do hope you are one that finds the easier path.
Take a list of your questions to the doc and don't be afraid to ask them
Some docs will give you a firm diagnosis the first time and some won't, if he doesn't, then ask him what other diagnosis are possible with your symptoms
Ask for better pain relief, I was slow to do this and went too long without adequate pain relief. Some pain meds work better for different people. I am about to change mine as they seemed to have stopped working.
Many docs let you choose which meds to take for the control of the ra [this is a big subject, check this site for info on biologics and other ra meds], I try to get their opinion as to the best one. Get info on the side effects of drugs, this can be offputting as some of them sound terrible and can be terrible, but compared to the possible results of ra if it is unchecked, they are better.
Having said all this, keep your hope up, you are not yet diagnosed and if you are, there are many of us living with this and you will have friends and good information to help you
Thank you so much for the kind words!!! I am armed with my list of questions - but I have to say so many are being answered poking around these forums. I am looking forward to learning more,
I wish I had discovered this site sooner, it is a great help