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Date: 28.08.2010
From: Louise

Subject: Old Doctor said it was growing pains

Hello
I've been suffering joint pain from a very young age. I'm now 21 and I'm sick of suffering. I've seen a new doctor and he thinks I have a type of arthritis and not (as the old doc claimed) growing pains.

It used to just be in my knees, it has since moved into my ankles, hands and feet, then hips and most recently lower back. I've been having a look today at the types of arthritis on the net and can't see a one type that covers all these pains but having said that, most of the sites I've seen cover rhumatoid, ostio then lupus.

(I'm very sorry for my spelling)

I was wondering if anyone knows of a type that covers this selection. I don't suffer muscle pains or fevers, I have no unexplained skin conditions. Having suffered since I was about 9 (I'm now 21) I'd expect to have seen some sort of deformation from the most common inflamation types and I've nothing of the type.

Sorry for the long post but I'm concerned about where this is heading. I had to be carried to the bus stop when I was in town with my friends, it hurts and it's crippelling me. It's been this bad before whilst I was at secondary (high) school and it has improved since then. It comes and goes throughout the day and night and waxes and wains in severity over the years.

Thanks for your time.
Louise
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Date: 28.08.2010
From: Sally

Subject: Re: Old Doctor said it was growing pains

Hi Louise, there are literally hundreds of types of arthritis so it is very hard to tell what is what. Has your GP refered you to see a Rheumatologist? If not, that is your next step and to get some blood tests too. They sometimes point to a definitive diagnosis, sometimes not. Some types of arthritis are very difficult to diagnose. Mine was for the first six months as I don't test positive for Rheumatoid Factor. There are lots of younger people than me (I'm 53!) on this forum so maybe some of them can help too. Are you taking any drugs? Anti-inflammatories etc.?
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Date: 29.08.2010
From: Louise

Subject: Re: Old Doctor said it was growing pains

Hi Sally! Thanks for responding.
I'm not taking any drugs (perscription or, I should mention, otherwise) I had a blood test and am waiting for the results. I've not been refered yet as the Doc isn't completely sure and, well, you know what it's like. If you get refered to a specialist, all they'll see is their specialism (to a certain extent).
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Date: 29.08.2010
From: paul

Subject: Re: Old Doctor said it was growing pains

Hi Louise,

I have RA in my hands, wrists, feet, knees, hips, shoulders, neck and jaw since i was 33.

It was not really diagnosed at first as my blood tests were negative but i was placed on RA drugs, after a wee while though i became really ill and unable to do anthing and the blood tests became positive. Now after failing with the 2 most common
drugs i have started to take a new anti-tnf drug called Cimzia (2 injections every 2 weeks to start with).

There are many many types of arthritis but a proper specialist will help tell you what you have (but it is hard to diagnose) and also place you on the correct medication.

You really need your GP to refer you asap and get you seen.

I have some deformities to some joints in my hands and feet but to the normal person on the streets i look completely normal and live my life as much as i can.. i even kitesurf.. albeit badly :-)

I wish you luck and best regards

Paul
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Date: 29.08.2010
From: Louise

Subject: Re: Old Doctor said it was growing pains

Hi Paul, nice to hear from you.

It's interesting to hear of RA in so many joints. I knew from the websites I'd been reading that there are lots of different types and they affect people in so many different ways but these sites were saying that RA affects small joints only and Ostio affects the big ones.

Obviously it's still early diagnosis days yet, I've only just found a doctor that believes me when I say I'm ill (rarely) or in pain (all the time). I'll ask the doc about referals (or maybe tell him if needs be) when I see him about the test results.

Deformations-wise, how long has it been (if you don't mind me asking) since you were 33? I thought that as I started with the pain from such a young age, the deformations would have been fairly pronounced as the were there as I grew up. Having said that, I don't profess to expertese and wouldn't really know for sure.

As far as meds go, do you know if they're supposed to treat symptoms (and slow the effects down), aliviate pain or reverse the effects?

Thanks so much for your response
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Date: 29.08.2010
From: Sally

Subject: Re: Old Doctor said it was growing pains

hi Louise, it is really much better if you get a referral asap because if you do have RA or similar they will want you to get onto Dmards (disease modifying drugs) within 3 months of diagnosis. So the sooner you do it the better (or find out you haven't got it of course!) A good rheumatologist will refer you on to another department if necessary. They are good though as they have to assess the whole body so are very thorough, at least mine is.

The meds both treat symptoms and slow the disease down and should alleviate pain. It can be a long haul sometimes to get the right meds. I'm not on them yet but for some people it is quick. So please don't put off asking for a referral.

A rheumatologist is by far the best placed person to diagnose you. GP's can be fantastic but arthritis is a complex illness. For example, lots of people I've talked to on here self inject methotrexate(one of the Dmards)as I do yet the doctor I saw last week in my practice had never heard of anyone doing that! My local hospital is full of people doing exactly that but he obviously hasn't come across it before. And he is a senior partner too.
take care
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Date: 29.08.2010
From: Louise

Subject: Re: Old Doctor said it was growing pains

Hi Sally

I'm currently waiting for the blood test, should have the results by thursday. If it comes back negative (I can't remember what they were testing for, I shall ask the doc) should I still get a referal to a Rheumatologist? I thought there was a rheumatoid factor test I was going for, if that's negative would that type of specialist still be relavent?

Thanks for your response!
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Date: 29.08.2010
From: Sally

Subject: Re: Old Doctor said it was growing pains

Yep! Absolutely! I have Sero-negative Inflammatory Arthritis. I don't test positive for rheumatoid factor. Some people never do, some develop RF later. I still have all the symptoms of the disease and the treatment is pretty much identical so it doesn't matter what the blood tests say. A rheumatologist will go on your individual symptoms and will often diagnose on that.

You ABSOLUTELY MUST get a referral, regardless of the tests for all the reasons I gave above. You won't be wasting anyone's time and they will just discharge you if they don't think you have arthritis. As I said, there are lots of types, some very hard to diagnose. You are suffering and you need a diagnosis and treatment. The 12 week protocol for prescribing the Dmards is the same whether you have RA or not. It took me a long time to make sense of the it all and understand why they couldn't find anything in my blood and understand the distinctions between the different types. Go onto the home page on this site and there are links to some organisations that can help you through this, lots and lots of info, helpline numbers etc. I rang National Rheumatoid Arthritis Soc. and they were fantastic. Also Arthritis Care have a helpline too. But we are very good on here too :) so ask away!
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Date: 29.08.2010
From: Louise

Subject: Re: Old Doctor said it was growing pains

Okay! I'll get my referal asap!

Thanks so much for your help. After being told it was growing pains and being fobbed off, I've never really been convinced it was something that not everyone has. What's the 12 week protocal? or at least a decent website for it?
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Date: 29.08.2010
From: Sandie

Subject: Re: Old Doctor said it was growing pains

Hi Louise, I was just wondering because of your age if you may have joint hypermobility syndrome. Are your joints very flexible? My daughter has this and she has had joint problems since high school. She is now 21 and has back,knee and feet pain. Just a thought. We have a family history of auto immune disease, do you know your family history of illnesses. I have been waiting for 2years to be diagnosed for my problems but might be getting somewhere at last. Just something to think about and I have to agree with everyone on this site you really do have to push your case every step of the way because if you don't, they won't. :)
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Date: 29.08.2010
From: Louise

Subject: Re: Old Doctor said it was growing pains

Hi Sandie,

The doc gave my joints a waggle when I went to see him and said that there wasn't any hypermobility, he said that I had a slightly limited range of motion but blamed that on the fac that I've been in pain for so long I've not built the flexibility up through exercise as I should have done.

My family history is mainly that of Diabetes (still can't spell it) and various memory problems, nothing too joints related. My grandfathers (78 and 89) have arthritis and one of my grandmothers has it (also 89) but these have developed fairly late on in life and have been put down to general wear and tear of active lifestyles and long lives.

Thanks for the thought. I'm going to have a real talk to my doc, set an appointment for when my blood results are back and do the two birds one stone thing.
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Date: 30.08.2010
From: Sally

Subject: Re: Old Doctor said it was growing pains

Hi Louise - sorry for being so emphatic in earlier post - it's just that I feel it is so important to get a referral. My gps faffed around for ages, sending me to physio and other pointless things (though the physio spotted what it was before the gp did) before getting me to a specialist. It took quite some weeks and by the time I got the appointment I couldn't walk. Rheumatologist took one look at me and I was admitted onto a ward!

The 12 week protocol is the subscribing protocol for RA. It means they should aim to get the patient on disease modifying drugs within 12 weeks of diagnosis to help prevent joint damage. In my case it took 6 months but have no damage luckily. So, the sooner you get a diagnosis.......!
Glad you are on the case! Good luck with it all. Don't hesitate to ask more questions.
xx
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Date: 02.09.2010
From: Louise

Subject: Re: Old Doctor said it was growing pains

Update: Appointment for tomorrow morning with the GP to discuss bloods and referals (which I *will* get). Turns out the Rheumy people are in the hospital nearest my house which is convenient.

PS these maths tests to prove your human are funny, I keep misreading them and getting them wrong XD
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Date: 02.09.2010
From: Sally

Subject: Re: Old Doctor said it was growing pains

Good news hope it goes well. Let us know what gp says.
xx
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Date: 23.09.2010
From: Louise

Subject: Re: Old Doctor said it was growing pains

Sorry it's been so long, things have been kinda hectic.

The gp said it's not Arthritis from the first blood test. I asked for a referal anyway, we had a chat and compromised on have the first set of blood tests the Rheumy people would do. The blood tests were taken the same day.

I got the results back and everything was negative again. As I have anxiety disorder, the doc has pretty much now written my joint pain off as the result of a lifetime of fully-tense muscles. He says that daily wear and tear is more if your tense all the time than if you're not.

I'm not sure how in the 12 years I've suffered with it, I've managed to get the same amount of wear and tear as someone the other side of middle age but, well, all the tests were negative. The doc very 'helpfully' suggested I relax more by getting "a massage or something"

Kinda annoyed with the outcome. While I'm releaved I don't have arthritis, I would have liked a real diagnosis. I feel a little likie I've been fobbed off.
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