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Date: 29.03.2011
From: Sharon

Subject: Newly diagnosed with RA

Hello everyone
I'm not sure if i'm doing this right or even in the right place but hopefully i am :)
I'd like to introduce myself, my names Sharon i'm 47 and Live in Derby, work part time as a manager in retail.I will leave my story here and hope it's in the right place if not then i appologise.

I am newly diagnosed with RA only just a few weeks ago.
I have been going to the doctor for 8 months in agony with my left hand & wrist, swollen, burning, pins and needles and the pain is excruciating.

I suffer from hypothyroidism after being hyper thyroid for 25 years i had a total thyroidectomy in Feb 2010 i have all sorts of problems since then and regularly see an Endocrinologist, it was him i mentioned the pain and swelling in my hand to way back in Nov 10, he said he would ask my doc to refer me to the hand clinic. But by Jan 11, 2 months later i had heard nothing so i rang docs to see if referal was done, they said oh sorry didn't get the message, they had but not read it properly i was so angry cos by now i was in the most excruciating pain i had ever experianced, anyway i told the doc i was angry about them not carrying out the Endocrinologists instructions and refering me to the hand clinic and he said oh it doesn't matter it's a classic case of carpal tunnel and i can give you an injection to sort that out as thats all the hand clinc will do anyway so i asked how soon i could have the injection cos by now i was awake all night crying in pain and unable to cope at work, he said i can do it for you in a week, so i waited another week, eventualy i had the steroid injection it helped but it only lasted maybe 4 days and the pain was back (the swelling never even went) i told him the pain was back he said impossible :( come back in 2 weeks if not better, needless to say it got worse, i went back he then diagnosed gout???? gout said i, i am a t total vegetarian where /how would i have got gout, he prescribed 2 weeks of anti biotics that of course did nothing so i was back again, this time he refered me to a physio who said i didn't have carpal tunnel it was a problem with my shoulder ???? again i was like what?? my shoulder doesn't even hurt, she said it didn't have to hurt but the pain in my hand was coming from my shoulder, lol ya couldn't make this up couold ya?anyway needless to say no amount of doing physio on my shoulder helped at all, she (the physio) then said i might have a fracture and sent me for an x ray, i asked why she thoughti had a fracture and she said cos shoulder physio wasn't working.....no **** sherlock lol, anyway i had the x ray apperently it showed something but not a fracture, so i asked what the something was but got no answer just probebly nothing, so off i went back to doc bare in mind by now i'm not sleeping at all at night cos i'm in pain, saw a diff doc who sent me for a blood test i had no idea what for but i had it done, then 3 days later the surgery rang and said i needed to go and discuss the results,that was 2 weeks ago and thats when doc told me i had RA the blood test had confirmed this.
I was stunned as i have never had a single problem with anything like this, anyway he's refered me to a rhumatologist but the apt is in May so i'm still in agony.
The doc originaly in Jan gave me pain killers called Tramadol which i refused as i'd heard they were quite bad for you, then he gave me co codamol which again i wouldn't take cos i'm nervous of being sick and i'd read they can cause upset stomache so i took paracetamol which did nothing at all, now he has given me Diclofenac and some other pill to line my stomache, i'm hoping these help cos i am in such a lot of pain which i'm only too aware you all must know about from your own suffering.

I am scared of taking the diclofenac as i have read all sorts of bad things but i have to do somethng i'm at my wits end with this pain,waking up ev night after 2 hours sleep in agony my quality of life is zero taking time off work is not an option cos finacially i'd colapse :(

Sorry if i have posted this in the wrong place i'm rubbish at the internet stuff.

After reading that post back i realise i sound like oh poor me and i'm coming across as a victim, i don't meen to i know other people have far worse problems than me, i'd just be very very grateful for some advice/friendship and support, and of course i'd love to offer the same to all of you :)

Kind regards
Sharon
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Date: 29.03.2011
From: emma

Subject: Re: Newly diagnosed with RA

hi sharon,my name is emma i have had ra for nearly 2 yrs.i am on dicloflenic plus loads of other delights lol.i was scared of taking loads of tablets as before i had ra i would not take any tabs.taking the tabs could help you with some of the discomfort give them a go and see if it helps.hope you feel better soon,take care emma.
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Date: 29.03.2011
From: Rachel

Subject: Re: Newly diagnosed with RA

Hi Sharon, I also have RA, diagnosed last August. I'm sorry to hear you are having such a rough time & being passed from pillar to post! I had problems with waiting for appointments and getting my meds right and during that time (from Aug - Dec) I took Co-codamal if I was desperate (it does make you drowsy but had no stomach problems & it helped me sleep!) Have you had a steroid injection? It may be worth asking for one to tide you over until you see the rheumatologist. I'm only just starting to see an improvement now I'm on methotrexate so it may take a while to get things sorted. Good luck and I'm sure plenty of other people will be able to give you some advice.
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Date: 29.03.2011
From: davina

Subject: Re: Newly diagnosed with RA

hi sharon i have had ra for 1yr now and still in lots of pain and on crutches even when on lots of pills.
i understand what you mean about not wanting to take pills but they may help you. when you meet your rhumy they will give you medications that have horrible side effects worse than tramadol and co-codaol but you need them to stop the progress of RA.
i'm sorry if i have scared you but you will need to look up the 1st stage meds like plaquenil, methotrexate or sulphersalsazine to understand what the meds are like and what they do for you.
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Date: 29.03.2011
From: scorpio42

Subject: Re: Newly diagnosed with RA

hi sharon,i was diagnosed with ra last july and since then been on a variety of different drugs,ive been on tramadol and for me was horrendous,ive also been on diclofenac and i had no ill effets on me at all they just werent strong enuff give them ok they may work for you.to help me sleep as i cant sleep i was on low dose amitriplyline which worked wonders in helping me sleep.im now on sulfasalazine and methotrexate its just finding whats right and sometimes it takes time to do that
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Date: 29.03.2011
From: nicola

Subject: Re: Newly diagnosed with RA

Hi, my RA started last year with something similar, horrific throbbing burning pain in my wrist which kept me awake at night. i was double dosing paracetamol and anti-inflammatories and i may aswell have been eating m&m's! i didnt feel better til i started a dose of steroids and then after a few days i was massively better.
I totally agree with the others, its hard to get your head round it now but those wee pills will become your buddies and the side effects (which they totally over exaggerate) are hardly ever as bad as the pain from sore joints. i've gone from taking no pills at all last year pre-RA to taking 5 different ones every day... and to be honest i've gone from feeling like a 75year old to feeling 32 again.
Good luck, and keep asking questions, the people here are a very helpful and friendly bunch :)
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Date: 29.03.2011
From: Paula

Subject: Re: Newly diagnosed with RA

Hello Sharon

I was diagnosed with RA nearly three years ago and currently taking sulfasalazine (6 a day) and 20mg methotrexate once a week with the other add on's of pain killers, folic acid and stomach protector. I can honestly say that I have had no side effects at all. We all respond/tolerate drugs differently so don't be frightened to give them ago, this disease if left untreated won't be a picnic. I have been told by the NRAS helpline (National Rheumatoid Arthritis Society) that the disease uncontrolled is far worse than any side effects from drugs. It may take time before you find the right combination of drugs for you, but you will so be patient.

You do seem to of been given a run around with the medical profession but sadly this seems to be the norm with RA. My GP was as useful as a chocolate fireguard when I went to see him. I asked if I had RA, he just looked at my hands and said NO. I ended up going private and I now see the same consultant on the NHS.

Have you thought of seeing if you can be referred to another hospital to see if you can get an earlier appointment? I live not far from you, near Mansfield and I attend Kingsmill Hospital and I am very pleased with the care that I am receiving there. I do know from what I heard a nurse once say that someone from Derby goes there. It's on the A38, just before you get to Mansfield. From Derby it is all dual carriage way, probably about 30 miles. My OT told me the last time I saw her that someone from Nottingham goes there because she gets better care there.

Bear in mind though that you will have to have regular blood tests done at first so you will have to attend hospital alot at first.

If you do want to go to Derby then if I was you I would get the phone number of the consultants secretary and keep ringing to see if theres been a cancellation. The sooner that you start drugs for RA the better the outcome will be.

It will get better, there is life after RA I promise. Paula x
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Date: 29.03.2011
From: Lorraine

Subject: Re: Newly diagnosed with RA

Hi Sharon
I have had RA for 8 yrs and been taking Sulfasalazine and Diclofenac every day since it started i was worried about the diclofenac but my consultant explained that with regular blood tests i would be ok , to be honest with you if i didn't take the meds i would be totally house bound they are the only thing that keeps me mobile you should give the diclofenac a try i am sure they will help , keep us posted how you get on
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Date: 13.02.2013
From: lorraine

Subject: Re: Newly diagnosed with RA

Sharon I was diagnosed 2 years ago,same as you so much pain swelling could not walk or even wash my self due to my wrists and fingers swollen .went to a ra doctor and have been put on sulphasalazine ,methotrxate, prednisolne ,co-codamal,folic acid,omeprzole,dicofenic ,tramadol, still in pain but I will try anything to be able to get my quality of life back.
I would love to travel to Australia next year hopefully I can take care
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Date: 15.02.2013
From: Tara

Subject: Re: Newly diagnosed with RA

Hi Sharon
I too have ra diagnosed last may
Its hard to deal with at times I have a lovely hubby and 6 great kids
The hardest thing is the uncertainty waking up every morning to pain and stiffness wondering what the day will bring
Moan over I'm depressing myself reading that back lol
Come on here any time and have a good rant we all know how you feel there's great ppl on here with tips and great advice
Take care hun
Tara
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