Hi, all! I must say, I have been lurking here for about a week, and I love this site. You folks seem so supportive and helpful, and I've learned so much just reading your posts. While I have not been formally diagnosed, it seems a strong possibility I have RA. Warning you up front, the following will be a looooong post!!
For the past few years, my fingers, wrists, and knees have been giving me trouble. I always attributed the swelling, pain, and general lousy feeling to other things. Knee pain to driving for a living and getting in and out of the car to help people with bags and wheelchairs and whatnot. Swelling and stiffness and a little pain in my hands and wrists and knees and ankles meant I must have been retaining water (resulting in increasing the diuretic I take for my blood pressure). General malaise - gee, I guess I need to eat healthier and take some vitamins. Increasing pain in my hands, especially, meant maybe I was developing a tad bit of arthritis, but heck, I'm getting a little older - no biggie, right? I got those stretchy finger-out glove type braces for the bad days, and kept on truckin'.
Well, fast-forward to a couple of months ago. Now my hands are swollen all the time and ache sharply, like a toothache. My knees and ankles feel as if I'd twisted or sprained them. My husband looked at my legs and said, "You know, my aunt had legs like tree trunks, and yours look just like hers did." I was eating diuretics and Aleve like candy, and nothing seemed to help. Hard-headed old me kept on pushing on, even when I hurt so bad it brought me to tears. Cooking Thanksgiving dinner was a nightmare, but I'm still making excuses. Oh, wrasslin' that 22 pound turkey was just too much for me, or chopping those cold vegetables made my arthritis kick up a bit.
Finally, I gave in. December 6th, I called my doctor's office and asked to be seen ASAP. I was in agony, I'd nearly had to have one of my rings cut off, and I'm simply not able to function. They told me I could come in about noon. He looked at my hands and wrists, listened to my story, and suggested I might have rheumatoid arthritis. I said that I'd suspected I've had arthritis for a few years, and he stopped me to explain the difference between arthritis and RA. Now I'm worried. He prescribed Naprosyn 500 twice a day and some 7.5/750 Vicodin ES - one every 4-6 hours as needed, said he was referring me to a rheumatologist, and sent me on my way to the lab for a blood test.
The following week, I hadn't heard any results from the labs, so I called. "Oh, yes, we were going to call you; looks like your tests are positive for RA." I asked for a copy and went by to pick them up the next day. Still haven't been referred to the RD - the person who does referrals has been out sick, but she'll be back the next week. Hmmmm. Strike one. Apparently nobody else picks up the slack.
Monday of this past week, the 17th, I called first thing in the morning to request some more pain medicine. I've still got about 4 pills left, but that's probably only going to last me till the next morning at best. I've been taking them fairly regularly, but trying to make them last, and it's maybe 4 or 5 days after the time I'd have run out if I'd been taking as many as allowed. About 4:15, I called back since I'd heard nothing, and was told messages are generally not attended to until the end of the day, but I'd hear something then. Never did. Waited as long as I could the next day, having taken my last pain pill about 5 AM, and called around 10:30. Nurse calls back about 1:00 and says the doctor will call in 20 more, but "...you need to use them sparingly this time. He doesn't want to mask my symptoms." I grumble something about the fact that I HAD made them last and the only symptom I'm concerned about masking right now is the freakin' PAIN and let her go. Went to the pharmacy after work, picked up the Rx - it's 5/500's, take one per day. WHAT?!? That's like telling me to take a coupla aspirin and don't bother me. Well, maybe there was a mistake. I'll call in the morning... Result: Nope, no mistake, that's what he's prescribed. Strike two. No interest in controlling my pain. Well, have you at least completed my referral to the RD? We'll do that later today... Strike three. It's been over two weeks since seeing the GP.
Friday, I called the office I'd been referred to and was heartened to hear that the referral had been received, then the bottom dropped out. The RD is now on vacation and will not return until January 7th. It takes up to two weeks to get an appointment set after she looks over the paperwork, and currently the first availability is the last week of February. I ask if I can go ahead and make an appointment to "save a spot", but was told no appointment until the RD goes over the referral. Another dead end. This is also the only rheumatologist in network (for insurance) in my city, which is actually a fairly large one.
I do have an appointment to see another doctor (GP) on January 3rd, since I'm already afraid that the one I've been using is not very responsive to pain management. The one I'll be seeing comes highly recommended by a very dear friend, so I'm optimistic there. It seems my last one is too afraid to prescribe - I guess I should've gotten a clue when I got no pain meds when I went to them for sciatica in March. At least the spinal specialist wasn't so conservative...
I'm scared. Everything is like running into brick walls. Ms. Fix-it can't fix it this time, and I feel helpless. I had a nightmare last night about little Pac-Man things munching at my hands, down to that infernal sound - woke up soaking wet and was hurting so bad I took two of my precious pills. I also have the unfortunate combination of a low tolerance for pain and a high tolerance for meds, and my dentist is the only one who ever seemed to give me adequate relief.
The more I research, the more I see symptoms I've had for years and never thought anything was majorly wrong. Night sweats, I've had that for years - and well, I've always been hot-natured and don't handle summer well. I get swollen and sick, and too much sun can make be break out in yucky itchy pustules. Feeling run-down all the time - well, I work 12 to 14 hours a day. I've got a right to be tired. I've described a few other of the justifications I've always made above.
Thanks for listening. I'm usually a bit of a lurker, rarely coming out of hiding, but just being here and learning that this demon CAN usually be controlled has helped. Fear of the unknown is still got me up in arms, but I guess I'll have to get used to it. Days really drag by, imagining damage going on every hour, every minute, every second until getting on the proper protocol.
Whew!! Gotta' stop now - my aching fingers have had a workout! Thanks again, y'all... and HELLO!!
Throws up a 9.2 score for an introduction post.
Welcome aboard. Take care ~~ Cathy
Welcome! Sorry to hear you're having such a hard time. Denial is always the easiest path until it just plain doesn't work anymore...sounds like your past that now and on the road to something better. There are meds that can help a lot but it does seem to take a lot of patience to work through the system...good luck!
Alan
Hello, SunnyD, and welcome!
I give her a 10
Welcome SunnyD!! All I could think when I saw your username was Stewie from Family Guy saying "What have we got here? Soda....Purple Stuff.....ah, Sunny D, ALRIGHT!"
No one got that, did they? Oh well. That's what I get for being the younger crowd. *shrugs*
Sounds like you're on the right track, even if it is a bumpy one. I hope this next GP will be a bit more helpful. Getting RD appts can be the hardest part of this stupid disease. I haven't seen mine since July, and the next appt I could get was December 12th. Well that got canceled, and the NEXT one is January 28th. Fun STUFF!!!
Hope you have a Happy Holiday(s)!!!!
OH OH AND.......you said "y'all"....
Where ya' from?
It took me about two months to get in to see my RD, but I've never heard of having to wait until the doctor looks over the referral before letting you schedule an appointment. Is that standard procedure for most specialists?
SunnyD, welcome to the board!
SunnyD
Make a lot of noise (nicely!) when you call the doctor. It's a fine line between being assertive and being rude but it is so disturbing when you are in so much pain, that things move so slowly. That 'we don't want to mask the symptoms' stuff is enfuriating. There has to be another way.
Hang in there and keep calling as long as you need the doctor's help. Put yourself first, not their routines.
Welcome Sunny D, shout from the rooftops for help, don't let up,hugs Janie. Sunny D-I am so sorry to hear how difficult this has been for you. I agreeHey and welcome SunnyD.
You might think about adding in 3 - 4 times the RDA of probiotics. There have been recent posts of it really cutting pain levels. I take a lot already as I use antibiotics to control my PRA, but I did notice an increase in pain and stiffness when, being an idiot, I forgot my probiotics for 6 weeks earlier this year. There is a definite link to pain levels and the gut. And with the Tylenol/Aleve doses you've been using....that might be part of the reason for your getting so bad so fast.
Hugs,
Pip
Welcome to the board. Try ice/heat/showers/baths, etc. along with pain meds. If at all possilble, I do anything before taking pain meds. Usually with auto-immune diseases you will have pain on and off, or always on, forever so the less meds. you can get away with, the better. I know, may not be a popular thing to say, but it's just my opinion.
Also, that's standard; the rheumie looks over your labs before giving you an appt. FYI, there was a 4 mos. wait to get in to my rheumie, however, after getting my labs, he got me in within 2 weeks. He said I needed an appt. immediately. Not sure that's good or bad, lol, but it is what it is.
As far as Prednisone, I'm on it. Been a year, 10 mg. a day. I tried to go lower 10 one day 5 the next, but I haven't been that succesful. That's one pill I wish I wasn't on. I hope you can find something to help you out.
Anyway, glad you landed here. You can get some great info. Best of luck.
Thanks again!