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Date: 13.09.2009
From: Janet

Subject: Newly diagnosed newby

Hi my name is Janet I am 42 years old from the North East. I was diagnosed last week with rheumatoid arthritis after feeling unwell with stiffness, aches and pains for a long time. I started sulphasalazine last Friday and although it is early days so far I only have a little nausea. I seem to be going through flares with short periods of being relatively well, however each flare is worse than the last. I currently have pains and swelling in my fingers, knuckles and feet. If I am on my feet too long I get huge ankles and lower legs. I am also getting pains in my shoulders, ankles and knees and am extremely stiff all over especially in my hips if I am in one position for too long.I am also anaemic but informed taht can be part of the condition. I also have low calcium and Vit D which I am taking supplements for. For pain I am on tramadol which is not doing a great deal for the stabbing pains. My GP advises oxycontin is the next drug of choice, has anyone tried this?
Also one for the ladies....... has anyone experienced problems with periods due to RA? I have not had one for the last 3 months, can't get a decent answer out of my GP!!!
Sorry for it being so long.
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Date: 13.09.2009
From: val h :-)

Subject: Re: Newly diagnosed newby

hi janet sorry this has hit u it is such a shock as we all know. i am at the start of all this waiting to go to rhumey. so am no help just wanted to let u know some one out here the others will be on and give advice good luck
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Date: 13.09.2009
From: Janet

Subject: Re: Newly diagnosed newby

Thanks Val. I am pleased I found this forum, I have Looked at every post today as my TV isn't working lol
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Date: 13.09.2009
From: val h :-)

Subject: Re: Newly diagnosed newby

life with out telly heaven football on here all day lol. my arther started about same time as change what fun that was so not sure but it can affect them but did start change when was only year older than u . lynne will prob. know or jill when back on they been through most things and still here to tell the tale and give a hug when needed. but they do nag as well be warned luv them both though
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Date: 13.09.2009
From: Janet

Subject: Re: Newly diagnosed newby

Sounds like a nice family of support on here. I need that at the minute, I am home alone as my husband works abroad and 2 children are grown up and moved away. My Hubby is back this Thursday I can't wait for a decent home cooked meal lol.
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Date: 13.09.2009
From: val h :-)

Subject: Re: Newly diagnosed newby

hi hope he left u lots of food in. home alone and no telly how bad is that do not tell him about telly or he might not come home they need there telly. hope u have lots of books. to keep u going will read till arms ache to much to hold them any more and only paper backs at that. well got to go bed calling might be back if can not sleep most nights some one comes on
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Date: 14.09.2009
From: jill

Subject: Re: Newly diagnosed newby

Hi Janet, Jill here....sorry to hear about your r.a. tramodol is rubbish for the pain thatwe have.. oxycontin is nastym made me ill....that isnt your lst reort at all... c rhummy...but meanwhile go and ask for Buprenmorphine(transtec) patches... Or Zomorph which I am cureently on...its amazing... since been on the zomorph it has helped control the pain...they start offf small doses and u can build up to higher dose...If your gp is offering u oxicontin, then he shld offer u the ones ive suggested...ive had arthritis now for over 20years...beleive me zomorph for me has been fab....u can also have Oramorph when in a flare up for breakthru pain..... Please go c your rhumatologist.....plus u can have co cod 30/500 with zomorph, u can also have diazapam for spasms if u have them.... r u on anti inflama? pleade let me know.... by the way sulpsalazine often makes ppl unwell,,,if u find it doenst work, ask for methtrexate...also after that, there r the anti tnf meds i.e. enbrel in jections!.... please come back in and chat with Lynne, shes an expert....i must say this to u, oxcontin was not for me...and i have a strong stomach...goood luck

Love ŠJill
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Date: 14.09.2009
From: Janet

Subject: Re: Newly diagnosed newby

Hi Jill thanks for the info. I will ask my GP for zomorph at my next appointment. I am not on any anti inflamms, was taking Naproxen but affected my stomach even with omeprazole. So far the sulphasalazine is making me feel nauseated which I can cope with but it's early days only been taking them since Friday.
My hubby left the cupboards well stocked lol but I am limited as to what I can cook at the minute.
My brother in law has been and fixed my TV this morning so I have company lol.I am feeling extremely tired as I am not sleeping well had 3 hours last night and 4 the previous night..any suggestions that can help? I have tried milky drinks etc but no joy lol.
I must say I am pleased I have found this site and can chat to people who understand. I will have to educate my hubby lol when he gets home, as he does not understand what RA is or means
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Date: 14.09.2009
From: jill

Subject: Re: Newly diagnosed newby

Janet this is one of the most nicestforums ive been in....we really do care about each other.... u can scream, moan, do anything, we all do it, we all understand.... your hubbyb MUST learn about your condition....if he doenst, it will make u feel worse....ive gone thru feeling like a failure...low self esteem...please dont get like that....i guess its normal when we r in so much pain, but he nees to know if u need sleepu have to go to bed to rest....listen to your body....suggestion for the sickness.....dry toast....melba toasts, ginger nuts....crackers.... thing is with the sulpha... i was on it for 6 months, made me unwell, and made no difference to my health... so they put me on methortrexate,, and eventually enbrelll...made a huge difference, less flare ups...i still get breakthru pain, took me a long time to accept that....thought oncve I was on all the best treatmen5t the pain wld go...it doenst, but we dont have to suffer....i promise u Janet, once u r on the correct dose of zomorph, u will be over the moon.... please pleae get your hubby to read these posts....and to elarn all about your illness... he must go with u too to see your rhumatologist, that way he will realise how this disease attacks us.... if he understands u will feel better agbout yourself..... I get serious fatigue, I have no choie but go to bed and rest, even if I dont sleeep..... it seems we all sufffer with sleeep probs.... sometimes im awake till 4 pm... and nxt day im a zombie....its a nasty circle... Val is suffering bad at mo with sleepness nights, so is Sharon thru terrrible pain..... anyway Janet, please come bk regularlry, we like to keep our new m8s in the forum, as we all help each other.... goood luck, stay strong and get that hubby iof yoursm and your m8s, and your family to understand your R.A.

lots love

Jill x
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Date: 14.09.2009
From: val h :-)

Subject: Re: Newly diagnosed newby

no one does that the trouble till u get it u just think it pain but so much more
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Date: 14.09.2009
From: jill

Subject: Re: Newly diagnosed newby

Janet I have a diseaase calll3ed REITERS disease, extremely rare, anyway, its left me with chronic inflamatory arthritis....ive had many corrective surgeries...to date ive had 7 ops lol....two shoulder ops, two knne ops, to hip ops(not replacement) one major spine op.... alll dikrectly related to REITERS, eats at the soft tissues thruout my body...plus my immune system attacks the goood cellls, there fore im on immune suppressants and biologics for the infla artha.... so as long as U GET THE CORRECTS MEDS now, u will prob not get so much damage....never sufffer in silence ok.... u nag those docs and rhuumys.....alos ther is a post about claiming for disability living allowance.... read thru, and monica has posted some very important info.... U mUST claim for your condtion and put the worses days ever,,,,never mention a goood day, as far as that claim form is concerend u can do nowt at all!!! good luck x
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Date: 14.09.2009
From: Janet

Subject: Re: Newly diagnosed newby

Thank you for all the support. I can assure you this forum will become my second home lol. Sorry to hear about your condition Jill I must admit I have never heard of it before. I am a nurse by trade although never worked in a rheumatology setting and knew little about it until I started suspecting it was what I had. I am hoping to go back to work in a few weeks.....all being well, however I am worried about the fatigue I suffer with. I ironically work as an occupational health adviser which can be stressful and that side of the role as well as all the keyboard work worries me. I suppose I will have to give it a go and see what happens.
I am currently under the care of a rhemy privately through work and need to get my GP to transfer me to an NHS Rheumy now I have a diagnosis. Did anyone have x-rays or scans taken of their joints as a base line? just asking as I have had none.
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Date: 14.09.2009
From: Della

Subject: Re: Newly diagnosed newby

Hi Janet i have suffered for the last 4 months hit me like a ton of bricks im also on sulphazine anti inflams etc but ive had swollen fingers feet etc and steroid injection , 3 infusions and none have worked. the swelling has gone down a bit but i am unable to move some of my fingers after 3 months sulphasalzine doesn't seem to have done a lot im on 4 tanlets a day atr the moment how many are u on?. i had xrays of my pelvis feet and hands on my first visit to the rhummy.Im waiting to see an Oc but dont think they can help much till the swellings gone down. Anyway this is a great forum im so glad i found it i also have bad nights quite often and also my periods seem twice as bad, went to bed at 5am this morning as i'm going through a bit of a rough time so if ever u are up drop a line on here someones is proberly awake as well lol. take care and hope u feel better soon x
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Date: 14.09.2009
From: Janet

Subject: Re: Newly diagnosed newby

Hi Della sorry your having a bad time. I am on 1 tablet per day at the minute as just started them last Friday so early days for me as well. I had about 3 hours sleep last night so feeling shattered now. My periods have stopped, not had one for the last 3 months but that could be due to anaemia. Where abouts do you live Della? I am in County Durham.
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Date: 14.09.2009
From: jeanette

Subject: Re: Newly diagnosed newby

hi janet you will be ok it is crap when you first get diagnosed but at least you no whats wrong. i myself am 42 and was told feb i had it crap feelings of why me but got my head round it, i now pace myself and dont go mad n try to do it all .ask for help. the tidy up police dont call rwnd if you cant be ars----------d lol got go shopin now ,had to change meds a few times startin new ones wed hope they are ok but lots of nice peps on hear to chat to . l8a
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Date: 14.09.2009
From: Karen

Subject: Re: Newly diagnosed newby

Hi Janet, yeah I had xrays but dont worry that you didnt I believe there are several ways in which they come to a diagnosis, perhaps your symptoms and blood tests were enough to confirm RA.
Stick with the sulfasalazine, it will get better. The side effects usually wear off... although they might get worse first :( think I was a few months before mine went.
Take Care x
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Date: 14.09.2009
From: Kirsty

Subject: Re: Newly diagnosed newby

Hi Janet, welcome to the forum!
Nice to have some more nice people around here :]
I'm agreeing with the others - you should try and educate some people about your RA...they might no understand at first but keep trying!! DON'T GIVE UP!!
xx
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Date: 14.09.2009
From: ruthie

Subject: Re: Newly diagnosed newby

Just wanted to say Hi - I'm pretty new to the forum too. I woke up one morning having gone to bed fine and the next day my joints had been attacked.

It took me a long time to get onto a decent treatment regime (and tbh I still don't think I am there!). The only thing I can say is that I think you adapt to how you are and it gets easier to cope with.

At first I couldn't carry a cup of tea and my ankles were so attacked I had to go up and downstairs on my bum! But 10 years on I'm more adapted and better able to cope with the bad days and the good.
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Date: 14.09.2009
From: Kirsty

Subject: Re: Newly diagnosed newby

Ruthie, Hi and welcome :)
That's good that you're getting used to it, how long have you had it for now.
Take care, hope you're okay
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Date: 15.09.2009
From: Janet

Subject: Re: Newly diagnosed newby

It is so nice to chat to others in the same boat. I had a bit better nights sleep last night but have had a terrible day. I have back ache which is new and driving me crazy. Not had anything like it since I was in labour 18 years ago lol and the nausea is worse today as well.
This is a nice friendly supportive network. Thanks to all for their comments and I wish a painfree night on all x
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Date: 15.09.2009
From: val h :-)

Subject: Re: Newly diagnosed newby

hi janet sorry about back hope things bit better and u get some sleep tonight sending you happy positive thoughts and (((big hug)))
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Date: 16.09.2009
From: Janet

Subject: Re: Newly diagnosed newby

Thanks Val I did sleep better last night. How are you? I hope your not too bad. I don't know why but I am having a particuarly bad day today but I suppose it's that type of condition.....oh joy x
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Date: 16.09.2009
From: val h :-)

Subject: Re: Newly diagnosed newby

hi not to bad now did not sleep to well over did it at work yesterday lol. but painkillers kicked in and much better at moment so fingers crossed do not know how long will last but enjoy it while it does. sleep well tonight
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Date: 17.09.2009
From: jill

Subject: Re: Newly diagnosed newby

HI janet after my first diagnosis of reiters(attacks all soft tissues, tendons, discs, eyes, ligaments etc, but also due to a defective gene hla b27pos)...so predisposed to reiters... anyway left me with anti inflams....regards the questions u asked regards x rays...yes i had 16 or so xrays in one day lol...to see wot damage had been caused by the reiters...nothing showed up.....then a year down the line, my lumber region discs were eaten away by reiters, then knees, so it took time b4 the damage showed up, plus it was progressive, that is also what R.A. does, u may be fine now, they wont xray etc until one or many joints get far far worse for u, then they will offfer mri scans etc.....as u know being a nurse its hard bweing unwell.... fatigue for me is the biggest prob too, think it is for us all..... remember to naggggg and let them know everyhnting that is happpening to u....plus claim DLA, fab posting regards all the info for claiming DLA!....we have good and bad days, good and bad hours..... tkae care ok

Val hope your ok sweetie...missed ya x
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Date: 17.09.2009
From: val h :-)

Subject: Re: Newly diagnosed newby

hi girl glad u back missed u loads
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Date: 18.09.2009
From: jill

Subject: Re: Newly diagnosed newby

my first night home was last night, fab being back in my bed..... however, this morning he refused to go skool!!!..... been goin since Mics dealt with him...I come home and he wont go......anyway, I took my other son to skool, and Mic eventually got Fraser up and he did go in!! mind U Val.....two weeks all kids have beeen in skool...and he still hasnt been in classs....just with the therapists and ICT suite!! with all the other little buggers that r gobbby....a year 11 boy threatened to thro a chair at my son.... mind u, that still didnt make him get into main classs..... taking one day at a time.....in my mind, im strugggggling, still not strong yet....one day at a time ....how u feeling Val? hows ya back? x
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Date: 19.09.2009
From: Janet

Subject: Re: Newly diagnosed newby

Hi all. Thanks for the info Jill. I ahve made an appointment with CAB next Friday for help with the forms. I cannot sleep tonight, despite feeling absolutely exhausted all day, I have terrible backache adn pains in wrists, hips and ankles. Have just taken some painkillers so heres hoping they will help me sleep lol.
Sorry to hear your having problems with your son x
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Date: 19.09.2009
From: val h :-)

Subject: Re: Newly diagnosed newby

hi girl one day at a time glad mic is dealing with him when he playing up as his mum u will feel such a failer even though all your other kids fantastic YOU R NOT it is his problem u r doing everything right so stick with it when he works out he can no longer black mail you like this he will go mind u he will try it on so stay strong i know anything with your children has such an effect on us
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Date: 19.09.2009
From: jill

Subject: Re: Newly diagnosed newby

thanks Janet and Val xx stay well u two ok....thanks for support, also Janet, I have same sleeep probs, val does too, think we alll do... tho sometimes I cant sleeep and im not always in pain when I get into bed/..... fed right up, as I didnt get out of bed until 2.30 today, kids with their dad sats, so was goood..... wot a waste of life being in bed all day, but i needed the sleeep, yet im tired as I type... going bed soon x
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Date: 21.09.2009
From: Janet

Subject: Re: Newly diagnosed newby

I know what you mean, I didnt get up until 1pm yesterday, I was absolutley exhausted all day I think it was because I had a lot of visitors on Saturday as well as trying to sort out car insurance for my 17 year old. It certainly took it out of me
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Date: 22.09.2009
From: val h :-)

Subject: Re: Newly diagnosed newby

hi jannet hope life treating u better today. chilling as arm giving me some gyp lol wish could remember to use left more
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Date: 01.10.2009
From: Janet

Subject: Re: Newly diagnosed newby

Hi all sorry not been around but I have not been feeling too good. I have not been sleeping very well and feeling nauseous and tired all the time. I am now up to 1500mg sulphasalazine and have had a rough few days. I have been in a lot of pain with poor mobility and very stiff. Then to top it all off I have woke up this morning with headaches and feel sniffly like I am getting a cold with the start of a sore throat, as well as a stiff neck. I am spiking temps but have been for months. Should I see my GP as I am not due to see her for another 2 weeks or should I just persevere?
I hope everyone else is having good times x
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Date: 01.10.2009
From: Karen

Subject: Re: Newly diagnosed newby

Janet, sorry to hear you aren`t keeping great. With regards to your cold symptons this is quite common, I myself have had approx 4-5 colds in the last year. Our immune systems are suppressed therefore prone to catching colds easily.

Ive made a few changes; my diet,I take enchinchea to boost my immune system, and regularly use germ gel throughout the day. I haven't had a cold in 4 months( an achievment for me!)

Having said that Janet if your symptons are worrying you then contact your GP x
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Date: 01.10.2009
From: Sas

Subject: Re: Newly diagnosed newby

Hi Janet Sorry I am late saying hello!!
I am fairly new here as well sorry to hear about your diagnosis of RA. I have PA I am taking MTX..well actually not at the moment as my ALK level was up to 125 last week (should be 5-40)had test yesterday and it's back down to 49 Sorry! I digressed LOL
Anyway this IS a fab forum and the DLA advice is the best I didn't know I could apply until joined here.

Take Care
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Date: 01.10.2009
From: jill

Subject: Re: Newly diagnosed newby

Hi Janet....personally I wld go see the GP.... I was told when I was on MTX and sulfas, that i shld see GP when i had a Sore throat, as it can qwickly turn into a throat infection, had terrilbe tonsilitis just the one time, but it was painful...I wld do that personally...take care, let us know what he says ok.. rest up as much as poss...and dont feel guilty...

Love Jill xx

Sas I ddint realise u found that info out about DLA....ive sat on my soap box in here posting posts about everyone MUST claim! lol....glad ya did...how ya doing,?havnt read all posts at mo, and gotta whizz offf to see how dinnner is, be back asap incase u reply immed lol....take care Jill x
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Date: 01.10.2009
From: Janet

Subject: Re: Newly diagnosed newby

Thanks for the support every one. I hope you get back on your meds soon Sas and all is well. I had a meeeting with the Citizens advice the other day and filled the DLA forms out with them. Have delayed sending off as I want to make sure my GP will support me with the claim. Must admit I feel a bit of a fraud lol even though feel like horses poo.
I will make an appointment tomorrow adn see my GP early feel quite flu like going hot and cold. Will let you know what she says.
Janet x
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Date: 01.10.2009
From: Sas

Subject: Re: Newly diagnosed newby

I had a sore throat and then a head cold last week I work in a GP's surgery and they told me to ring my own GP and ask....so I would also advise you to as well.
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Date: 01.10.2009
From: Sas

Subject: Re: Newly diagnosed newby

Jill yes it you that made me claim.....so you are totally responsible for the stress I am suffering LOL No I am kidding not stressed about it. Keep it up just be careful getting on & off that soapbox!
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Date: 01.10.2009
From: Janet

Subject: Re: Newly diagnosed newby

Thanks Sas. Can I ask have you heard about your claim yet and is your GP being supportive about it?
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Date: 01.10.2009
From: Sas

Subject: Re: Newly diagnosed newby

Yes GP fab when I spoke to last week about the sore throat she actually said she had completed the form. Had 1st letter from DWP to stay they had received my claim on 06/08 then another to say writing to GP then other to say sorry for delay they will have info soon x 2. Jill says this is normal so hopefully will hear again soon. I actually deal with DLA forms(along with others) in work. I have only known 1 GP in 9 years not agree with a claim. So get your form sent of ASAP.
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Date: 01.10.2009
From: jill

Subject: Re: Newly diagnosed newby

LOLOL Sas..... mb u can send me a pennny or two for my trubbles then lol...... your boys seem amazzzzzzzzzzzzzing, lucky u, u must be a fabbbbbbbbbbbbbbbb mummy xxxx take care xxx
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