Here i am :)

[Winnie]

Hello everyone ... I finally know what's wrong with me !!! At first it was like a great weight had been lifted but now i am starting to worry about what is going to happen next. Anyway, i am here and this is the now and that's that !!!
So ... let me tell you about me, I am 30 years old and for the last 18months have had really bad swelling and pain in either my hands,fingers, wrists, ankles or feet after going to the doctors numerous times i finally got an appointment with a rheumatoligist, hence why i came across this website and forum. The first doctor i saw said it was my hormones and i should have a baby in order for it to stop ... thanks but no thanks
I have had a blood test done, RF is negative, CCP is 97 IU/ml and the rheumy man said that it will progress into rheumatoid arthritis ... gutted
Have also had another blood test done when it was bad but haven't had the results back yet. He has put me on Hydroxychloroquine ( yes i did copy that from the letter he sent, cant even say it let alone spell it ) 400mg a day and so far all they have done is make me feel sick and given me the worst headaches in the world.
Anyway ... that's my story so far, would love to hear your stories and from anyone who has any tips of anything i can do to help ... ie vitamins, diet etc ... saw somewhere that said to cut down on cheese and i nearly had heart failure ... i love the stuff !!!

So that's me ... cant wait to hear from all you lovely people

Rachel xx

[katie]

Welcome Rachel! Cut out cheese????? lol. I"m in trouble then. Actually, a lot of people make diet changes, some of them major changes, so cutting out cheese may have helped someone. There are a lot of diet and supplement ideas in our Healing Naturally section, but none of them apply to everyone. Taking care of yourself is important and what you eat is part of that (*grabbing another donut - I plan to change my ways any day now*)

Statistics say that 1/3 to 1/2 of us will progress to RA but that doesn't mean you will be one of them, so don't get down about what the rheumy said. Fate and who knows what can intervene before then.

I take Hydroxychloroquine and it worked well for 2 years, however, I did not have the heacache side effect. It takes weeks to months to kick in so don't expect fast relief. The nausea went away. Mine was mild and I carried a water bottle, cup and alka seltzer with me and took that when needed.

You're kind of on your own in finding out what helps you. Check out our different sections. Eating right is helpful, there are food and supplement ideas in the Healing Naturally section, but not all of them apply to everyone. Gentle yoga exercises or hydrotherapy if you can...keeping a pain diary helps figure out what helps and what doesn't.

There's so much to learn and, unfortunately, doctors don't guide us like they do heart patients and other conditions. The forums give you ideas of choices and we're happy to tell you our experiences. The IPRS home pages are really helpful.

The headaches you're having concern me. I'm going to start a thread and try to get you some input on that. Be patient if you don't get an answer right away, our format is new and people aren't used to it yet.

[Winnie]

Thanks Katie

The sickness is mild and when i told the doctor about the headaches she simply said ... well you've put up with them for a month so try them for another month before we decide anything, to be fair, at my surgery you see a differnent doctor everytime you go so it's not her fault but anyway ... Yes, i am gonna have a good nose around the forum and see what i can find out

Take care, speak soon xx

[ajurist]

OMG - winnie - get a new doctor!!!! if you live in Los Angeles, let me know! mines been spectacular. i realize from prodding around on this board how lucky i am. when i told my wonderful GP (gen pract.) about what was happening - he sent me to a wonderful rhumatologist. who upon hearing my story for 3 minutes knew exactly what was wrong. she knew immediately i had PR. she put me on mobic and it has definitely cut down the attacks. i was getting them all over my body in random places each time, it always came on with a little whisper before i got it, then as it would flare it felt like someone smashed me in that little spot with a baseball bat and bashed the shit out of me! then in 18-30 hours it would be gone like it never happened. sometimes it would be just a little spot like the skin between my thumb and first finger, and sometime a whole shoulder or outside of my foot, or the ankle i've even had it in my jaw and coudln't close my mouth for 2 days!.

like i mentioned in the other forum we've been using the vicodin very successfully to control the pain. Luckily i don't have a addictive nature so i'm only using them when i really feel it coming on or when im at a catering job and need to get through it. it doesn't give me any clarity problems at all, it just makes the pain go away signficantly. but the mobic has definitely helped take me from episodes every couple of days to now only getting them when i'm under stress(usually during these high stress underground dinner catering jobs i do.) about every 1.5 -2 months. and the attacks are much more manageable - maybe because i understand it now, maybe because the meds help - or both.

Don't get me wrong. there are times at the end of jobs, that i've had to sit while my staff packs everything up because i couldn't move or my shins hurt so badly.... no really it's disease, but not bad not having to wash all the dishes and load up the car!!!!

i wish you well. keep me posted. and think about getting another doctor. this is your life and you shouldn't have to suffer more than you already are because of a flip dismissive doctor! --chef amy

[Kanderson]

Rachel

if the headaches are still there go back to the Doctor....you dont have to "put up" with anything.......honestly.

Karin

[Winnie]

Thanks girls ... I'm not in LA, im in the uk ...if you wanna fly your doctor over here for me then feel free lol
I've never really been one for the doctors anyway, until all of this PR started i never went to the docs, i always felt i would get even iller if i went, you know, sitting in the waiting room with everyone coughing and sneezing over me, i hate tablets too and always put up with stuff rather than filling myself full of pills. The best one was when i couldnt move either of my hands, had taken me about half an hour to get dressed with the help of my 10 year old, i went to A & E, saw an army doctor who squeezed my hands, yes i did want to kill him ... and told me i had done my tendons, does this hurt ... YES !!! ... But ... i must admit that the Rheumatoligist i saw was fantastic, i went in, sat down, explained what was happening and within minutes he knew what was wrong with me ... was like a massive weight being lifted off my shoulders

Mine also comes on in pretty much the same way as yours AMy, i move my hand or whatever it is and get a tiny small pain ... well not pain but more of an "awareness" and then it gradually gets worse, If i get a mild one it lasts for about a week, but if its a "shocker" ( really bad flare up ) it goes quicker, thankfully. I was taking loads of diclofenic for the pain but they didnt work, i haven't been offered anything else for the pain, even though i told them i was taking far more than i should be, so i take nothing now, sometimes it is really painful but i get over it with lots of moaning and the thought of knowing that it wont last too long, it seems to be worse at night, or maybe i just notice it more then as i am just pottering around or doing nothing and sometimes sleeping is very uncomfortable, letting my dog in the bed doesn't help lol

For the first time i have had it in my jaw ... i was thinking maybe it was something else but it is easing off now and judging by the timescale it has lasted for, it's pretty much the same as when i get in somewhere else so for the time being until it happens again or it turns out to be something else Dr Winnie is diagnosing a new area for her PR to happen in. lol ... It's like suprises all the time, you never know what is gonna hurt and when it's gonna hurt ... keeps you on your toes lol

Anyway, i must stop waffling ... im missing shameless !!! xx