ADVICE PLEASE?!

amyloveheart

Hi, my name is Amy and I'm 18 years old. I've suffered with painful joints since I was about 11 years old. During that time I've had many flare ups, sometimes so bad I can't get out of bed. Both my father and my grandmother have rheumatoid arthritis, and have had since they were both very young. My pain started in my right knee, then moved to both my knees, I've since had trouble with my hips, my right elbow and my right shoulder. My shoulder is whats hurting at the moment, it's so bad when I wake in the mornings, until the strong painkillers I have been prescribed to take kick in, I cannot move it. I've had several visits to the doctors and all the seem to do is tell me its an inflammatory problem and prescribe me more painkillers. I've had a blood test to check for rheumatoid arthritis, but it came back negative.

The only way I can describe my pain is, on a good day, I'm very aware of my joints, I can't straighten my knees to quickly, I have to take it slow. And on my bad days, its so excruciating I can hardly move, all I can do it cry.

I've spoken to my father many times and he says that that I'm experiencing sounds very similar to to pain, when he first started having it (all though his is much worse now as he has had it for nearly 40 years)

Every time I visit my doctor, they all seem to say the same thing, but I never get an answer. I was wondering could it be rheumatoid arthritis even if I tested negative? Has anyone had a similar experience as me?

PLEASE HELP!

traluvie

Hi Amy,

Welcome to the forum, you are such a young age too..

I am not qualified medically so i can only talk from experience, but i would say that maybe you need to see a different doctor, someone who will listen.
Do a diary of symptoms, pain and where for a few weeks and take it to GP. I would say that you should maybe get referred to rheumatologist who is trained in inflammatory arthritis and can work with you to try and help.
I have no RF factor in my blood so was not diagnosed with RA but with inflammatory arthritis. There are over 200 types so diagnosing can be hard if all the pieces dont tick the box, so to speak..

Dont feel alone we are here to support one another as we can actually say we understand..

Heres a hug and some positive vibes. ((()))

Colin1

Hi Amy poor you so young to be going through all this. You should tell the GP you want to se a specialist and dont take no for an answer. RA does not always show up in bloods in the early stages but i believe there is a new type of blood test that can but i know nothing about it.
What you discribe as the pain moving about thats what RA does. I wish i could be of more help or wave a magic wand for you all i can do is wish you well and hope you are feeling better soon. please keep in touch and let us all know how you are getting on.
Colin

stickywicket

I'm glad you made it over to this forum, Amy. I knew everyone else'd want to help too.

valval

hi take your dad to doc with you and ask for referral to specialist your dad will know how important it is for treatment to be started early good luck hope it does not turn out to be arther val

amyloveheart

Oh my gosh! I'm overwhelmed with all your support! Thank you so much everyone! Having the pain all the time, at my age, I really tiring, even mentally exhausting, especially since I am the only I know who suffers the same pain as I do.

And now I've come here and its like everyone had been in the same position, and there's so much love and support! People usually just pity me and I hate it.

Words cannot even describe how greatfull I am too all of you, thank you so much for your replies and I promise to keep you all up to date with my situation, I will phone to make an appointment first thing tomorrow and see if I can finally get some answers!

Amy X

stickywicket

So as not to keep jumping about from one forum to another, Amy, I'm just going to add a footnote her to what MrDJ said on the 'Young People's' forum and that's about x-rays. Don't be disappointed if you don't get x-rays. If yours is RA or some other auto-immune form of arthritis, I'm not sure they'd do x-rays as a first resort. Anyway, the first thing is to tackle your GP. I hope it goes well.

applerose

Just wanted to say I hope you get a diagnosis and some help soon. Pop back and let us know how it goes.

dreamdaisy

I'm bemused. Given your family history why the hell are they not taking you seriously? I suspect it could be an age thing, there is still a perception that arthritis is for the aged. It ain't. If they are telling you there's inflammation why are they not giving you an anti-inflammatory tablet to try? I have Psoriatic Arthritis which is termed a 'sero-negative' type, ie no positive rheumatood factor shows in blood tests. I was classed as an 'inflammatory arthritic' for a few years until my skin suddenly obliged with the psoriasis. Then light bulbs went on and the official name was bestowed. It didn't change the treatment though, it was just a more precise label.

Keep a record of symptoms, pain and tiredness levels, what helps and what exacerbates and on your next GPs visit take your Pa with you, especially if your GP is male. He might be more inclined to listen to man rather than a mere slip of a girl. I wish you well and please keep in touch. DD

amyloveheart

Thanks DD for your advice, they probably think I'm just a nusance at the doctors office because I'm there so often! I'm going to start a pain diary, make a list of my symptoms, what makes them worse and what makes them better, hopefully that will make them realise how seriously in pain I am!

I rang this morning to make an appointment, and they said my usual doctor is away for the next two weeks and so I'll have to wait until she comes back for an appointment. I asked if there was anyone els I could in the meantime, and they told me straight up NO!

I can't help but get frustrated at their lack of concern, I've been to the doctors 12 times this year all ready, all they've done I one blood test and give been enough pain killers to kill a large horse!

Hopefully something will be done about it soon, I'll keep you all posted, thanks for the support everyone! It means the world to me

Amy xxx

hileena111

Hi Amy
I really feel for you......at your young age.
I'm no doctor but I would say you need to change GP's.....a lot of us have had problems with GP's not listening to us.
A lot of us have changed GP's
Give it a try.
sending ((((())))
Love
Hileena

amyloveheart

You are right Hileena, I think if nothing changes after the next appointment when I show them my pain diary, I will definitely be changing GPs, thank you for your concern, means a lot xxx

dachshund

Hi Amy.
i think you need to go to the doctors with your dad and say
you are in so much pain you want something done about it dont go from the surgery untill they do something even if it mean's you cry.
take care and good luck.
joan xx

mp1952

Hi Amy

I agree with the others... Is there another GP in the practice you could see who might be a bit more 'clued up' about inflammatory arthritis problems? It sounds like you need to be referred to a rheumatologist.

The first doctor (GP) I saw thought I was depressed as I cried with pain in her surgery.. She said 'arthritis pain doesnt normally keep you awake at night' ... !!! I saw another GP a week later and fortunately he recogised my symptoms as being RA....

Marion