Newly diagnosed

[juliet]

Hi my name is Juliet aand i have been diagnosed with palindromic rhuematism . it has come as a shock as i was just starting my training for london marathon and have been told that i have to stop running at the momment ,so i am power walking it instead mainly to keep sane and positive . i had a very bad flare up at xmas which led to my diagnoses i have pain in my hands ,neck shoulders and arms not all at the same time its quite random really ,but depending on where it attacks is whether i can drive or work. I also had a srange thing happen to my jaw my teeth became ofset but only for a couple of days has this happened to any one else? when i was bad at xmas i was on naprosyn x2 solphadol x8 diazapam x3 and 1 omerprazole for the stomache , the doc then sent me for blood tests and my rhuematoid factor was double what it should be so went to rhuematologist and was diagnosed and put on plaquenil 200 mg per day been on them for 3 weeks so not sure if they will work or not i seem to feel ok but i think from reading other blogs its quite a low dose and early days yet .

[Ausjen2.0]

Hi Juliet. I get the jaw thing too, it's a weird feeling isn't it? Sometimes it's quite mild for me but other times it has hurt to open my mouth to brush my teeth or eat...kinda wish it would happen more often actually to stop me from eating

It's a bummer that you've got pr but try and take some comfort from at least having a diagnosis and from finding these forums where plenty of people will be able to tell you that what you're experiencing is fairly common to us all and you're not going insane

Good luck with everything

[Marty]

Pain in my jaw was one of my symptoms too. The flareup lasted about a week but the stiffness lasted about a month for me. My doctor has never told me to give up exercise. If your legs aren't bothering you then I don't know why you can't run the marathon unless it's also painful jostling your upper body.

[Winnie]

Hello Juliet and Marty ... it's so weird that i have just read this. Last night all of a sudden i opened my mouth to yawn and the top of my jaw really hurt,just on the right hand side, it's still like it this morning. I have never had this before and was wondering whether it was just me or if it was related to my PR. When my mouth is shut i cant feel anything but obviously when i move my jaw it hurts ... will keep you updated ... hope you both have a pain free day

Rachel xx

[juliet]

Marty Rachael Ausjen Thanks for all your answers on the jaw thing at least it doesnt seem to last too long !
in reply to as why not to run if i run i get sore ball of my foot and toe ,but i will give it another try but i think long distance training is too late now . ive never joined or spoke to people on computer before so am finding my way round sorry if i put things in wrong place or on wrong pages . Your right about being diagnosed it is a releif to find out what is happening to your body and that you can speak to others in the same boat and get help and advice ,my rhuemy told me to look on line as they dont seem to know an awfull lot about it ,but i never imagined that there would be so many people sharing stories its a comfort to have people who understand to talk too
juliet x

[Kanderson]

Hi all, the jaw thing is called TMJ....there is a post on site about it. I get this....drives my dentist nuts as I cant keep my mouth open for long wthout it locking. HOWEVER.....it doesnt shut me up !!!!!! Does it katie

K

[katie]

No, it doesn't Karin, but we keep hoping... *ducks and runs as fast as I can!*

[Winnie]

Hey everyone ... i still have the jaw thing but the left side of my wind pipe hurts aswell now, when i speak and stuff so i am thinking maybe i am getting an infection or something ... this PR has turned me into a right dr google lol ... could hardly open my mouth last night and eating is a pain, well atleast its a good way to loose weight hehe anyway, this is just a quick one as i am currently sat infront of a web page constantly hitting refresh to see which secondary school my son has got into, there must be thousands of people on the website doing the same thing as me as the page just wont load ... i shall not be defeated !!!

Have a smiley day xx

[juliet]

Hope your feeling better and it is just a sore throat and not anything to do with PR ;
I also never know what is normal pain any more or to do with our condition ,i did the gym yesterday and a 15 mile walk for my marathon
training I now cant walk without limping but im sure that is normal for the time i was walking ,i was running for ten years and never
found it hard but walking is so difficult but im determined to do it !

[Kanderson]

Juliet

its important to keep excercising but take it down a notch to what your comfortable with.....dont just stop..then the pain does kick in as the joint becomes immobile....( in my case anyway) Also for general health we need to excercise.

K

[juliet]

k
thanks for the advice ; I'm getting to understand my body again so other peoples experiences are valuable.
It was just normal pain from doing a long walk rubbed in some flexall pain relieving gel amazing stuff!!
a chiropractor friend gave to me. had physio today and walked 3 miles so far so good .
juliet

[juliet]

Hi just been to docs today for more tablets , the pharmacy gave me quinoric instead of paquenil
does anyone know what they are like and if they are the same ?

[Ausjen2.0]

Just did a quick google and it looks like they're just two brand names for the same drug. From what people were saying on a lupus site, some people will have reactions to one so they then change to the other. So basically, they're just alternatives like McDonalds vs Hungry Jacks/Burger King

[juliet]

Hi Thanks for your speedy response ,was getting all worried as i feel OK on the plaquenil even though I've only been taking them for one month. start the new ones tomorrow so will keep you posted
Juliet

[juliet]

Hi ausjen
Decided that i was not going to change brands already as i feel ok , so went back to docs and got some
plaquenil feel much happier . it was getting me stressed wondering if they were going to be ok some times
you just have to make a stand however small .